PAIN

A thread dedicated to PAIN!

Many of us suffer varying forms of pain. Hopefully this thread will be helpful - anything about pain... chat, cry, vent, question, laugh, share whatever!!!! CL

I here you! Each day is a

I here you! Each day is a different level of pain for me. Sometimes manageable without meds ( Tylenol, Advil) I use both and sometimes it helps dull it a bit. It is frustrating some days. I would like to know what meds are best for nerve pain?

Good topic/thread CL!!! I

Good topic/thread CL!!! I hope people get answers or support.

Maybe a smiley for people.

Maybe a smiley for people. Sticking out tongue

1. A day without sunshine is like night.
2. On the other hand, you have different fingers.
3. 42.7 percent of all statistics are made up on the spot.
4. 99 percent of lawyers give the rest a bad name.
5. Remember, half the people you know are below average.
6 He who laughs last, thinks slowest.
7. Depression is merely anger without enthusiasm.
8. The early bird may get the worm, but the second mouse gets the cheese in the trap.
9. Support bacteria. They're the only culture some people have.
10. A clear conscience is usually the sign of a bad memory.
11. Change is inevitable, except from vending machines.
12 If you think nobody cares, try missing a couple of payments.
13. How many of you believe in psycho-kinesis? Raise my hand.
14. OK, so what's the speed of dark?
15. When everything is coming your way, you're in the wrong lane.
16. Hard work pays off in the future. Laziness pays off now.
17. How much deeper would the ocean be without sponges?
18. Eagles may soar, but weasels don't get sucked into jet engines
19. What happens if you get scared half to death, twice?
20. Why do psychics have to ask you for your name?
21. Inside every older person is a younger person wondering, "What the hell happened?"
22. Just remember -- if the world didn't suck, we would all fall off.
23. Light travels faster than sound. That's why some people appear bright until you hear them speak.
24. Life isn't like a box of chocolates. It's more like a jar of jalapenos. What you do today, might burn your butt tomorrow.

=

jbb wrote:I here you! Each

jbb wrote:

I here you! Each day is a different level of pain for me. Sometimes manageable without meds ( Tylenol, Advil) I use both and sometimes it helps dull it a bit. It is frustrating some days. I would like to know what meds are best for nerve pain?

Hello jbb:) One thing I know for certain is what works for one person doesn't always have the same affect for someone else. Nerve pain is a very general term...(neuralgias) It can be caused by (to name just a few) infections, inflammation,trauma,compression of tumors or inflamed tissues, even surgery can cause nerve pain.

There's also different types of nerve pain ex: peripheral neuropathy (damage to the peripheral nerves), pinched nerves, Mononeuropathy (fancy word for another type of peripheral neuropathy), Neuropathy caused by drugs... the list goes on and on.

Like I said, different meds work differently from one person to the next. Can range from Tylenol, NSAID's (Advil, Motrin), Antidepressants, Corticosteroids (ex: prednisone), Anticonvulsants drugs such as gabapentin (Gaba is the type of drug I "hear" of the most),Creams (topical anesthetic) and Opioids.

Apparently, anything goes. Trial and error for most, at least that's how it went for me.
CL

Invisible

Invisible Illness................

Doodle had posted this link a while back, I think it's well worth the short reading by anyone who suffers from sickness/pain. It may even be something you'd want to give to family & friends to help them better understand. CL

http://www.hopekeepers.org/art-invisible.htm

Hi sweet little lady,I hope

Hi sweet little lady,I hope your doing okay today CL. Many blessings to you. Smiling

Thanks Doodle:)

Thanks Doodle:)

Unfortunately could be better:( Story of my life!!!!!!!!!!
I hope you're doing well:) Take care, CL

Hi CL, Your right. My

Hi CL,

Your right. My fantasy though is to get the right test to say whats wrong and move onto treatment without it costing my childs education.

I guess the scary part is finding out that there is a permanent problem and no treatment or the treatment doesn't work.

I find it amazing how our bodies and minds are able to cope with daily pain. I read the link to the story on pain and it is so true. Everyday I am in pain and nobody knows. I just don't want to bring them into my world. Prentending to be happy/healthy is much easier. There are days I just want to cry all day but I forge on, hoping that one day I'll be fixed.

Hi CL, If I am not prying

Hi CL,

If I am not prying how is your mission to getting answers and better medications/treatment. It's been a while since I read something on your progress.

I know, sorry... there's not

I know, sorry... there's not any good news, so that's why I haven't really posted anything. As far as the pain, I'm still heavily medicated just to be able to walk (or try). Nothing has really changed there. New symptoms, blood results etc have now appeared. I feel like I am close to getting much needed answers, but I still fear that it won't be in time.

I had to cancel my appointment with the specialist for a few reasons, but mainly I wasn't well enough to travel at the time. I rescheduled yesterday and I'm supposed to go in a little less than a month from now. I hope to gain a little strenght by then and I hope the results of the MANY tests I've had done this month will all be in by then. Some came in already, (and of course it's not good) but I think it would be helpful if the specialist had the WHOLE picture when I go.

Althought I had to cancel my last appointment, new meds were prescribed so we'll see.

BTW jbb, One site I found

BTW jbb,

One site I found loaded with info for Canadians is www.servicecanada.gc.ca
Lots of info about disability, income support for medical reasons, tax tips etc.... You should take the time to browse through and see if you might qualify for any service.

Another WONDERFUL agency that I deal with is HOPE AIR. www.hopeair.org
They have made my travels SOOOOOOOOOO much easier!

Hi CL, I know it is hard to

Hi CL,

I know it is hard to talk about things sometimes. I have often thought about you and how your medical journey was going. Thank you for sharing. Please know we are here to support you so if you feel like sharing more we are here for you. You are soo young to be enduring all these problems. It is people like you that make me sit up and say to myself what I have is nothing compared to others pain. So whether you know it or not you give me and I am sure other people strength to go another day.

My sincere wish is for you to get better. I hope you will get that wish.

Thank you, I will check them

Thank you, I will check them out.

Thank You jbb:) I appreciate

Thank You jbb:)

I appreciate your kind words:) Forgot to mention, don't ever worry about prying. I don't mind, and I plan to update everyone when I feel up to it. (physically)

Your support, and that of others really does mean alot to me. And then, even though we all have very different stories, situations...we are so much alike and it's sad that so many people have to suffer!!!! I just don't get it, and I don't understand why things have to be so complicated. Obviously I'm about to start ranting lol... so I'll stop now. Thank you once again:) I hope you find the answers you need, and always know if I can help in any way, I'd be more than happy to try. CL

Thanks CL. I hope you have

Thanks CL.

I hope you have a good weekend.

It is sad Cl. Very sad. I'm

It is sad Cl. Very sad. I'm just glad Rate Mds is here. Huge hugs. And I still pray. Smiling

VERY CUTE...LOL...THANKS

Smiling VERY CUTE...LOL...THANKS FOR THE LAUGH!! Smiling Smiling
BUSY MOVING STILL....CANN'T SLEEP, THE PAIN TAKES OVER, SO I GET UP AND WANDER AROUND, UNTIL I AM SO EXHAUSTED...PAIN IS THE PITTS!! Sad

HOW IS EVERYONE? Puzzled PLEASE ALL, TAKE CARE...
SHERRY

Hi Sherry, Sorry to hear

Hi Sherry,

Sorry to hear you have to go through that everyday. I am able to sleep but if I am awoken and fully awake the pain starts. It is always there when I wake up in the morning. I am doing good this morning. Think I'll go shopping for a few things on sale.

I'm in pain all the time. I

I'm in pain all the time. I suffer from Post Polio Syndrome. The pain in my legs is terrible at times. If it were just pain, maybe I could deal with it, but its muscles going into spasms when I least expect it. It's nerves firing in my toes, my ankles and my thighs. Meanwhile my legs get weaker. I'm supposed to rest because exercise makes it worse, but I'm a diabetic so I have to exercise to keep my weight and blood sugars down. The doctor put me on Neurontin which helps, but it has a side-effect. It makes me lose my balance. I'm 63, if I fall I could fracture my hip and that would be a disaster. This type of pain is the pits, I wouldn't wish it on my worse enemy! I have a wish: I wish I could spend just one day without pain!

Daisy

Hi Daisy. That sounds

Hi Daisy.

That sounds awfull. Sorry to hear you have to suffer with it. Is there any prognosis of relief in the future?

daisy12 wrote: The doctor

daisy12 wrote:

The doctor put me on Neurontin which helps, but it has a side-effect. It makes me lose my balance. I'm 63, if I fall I could fracture my hip and that would be a disaster. This type of pain is the pits, I wouldn't wish it on my worse enemy! I have a wish: I wish I could spend just one day without pain!

Daisy

Hi, Daisy. If Neurontin helps you but makes you lose your balance, your doctor may want to try Lyrica. It's in the same family as Neurontin, but many people find that they get fewer side effects with it.

Pain does not

Pain does not discriminate,and it knows no color. One thing you can count on in life for EVERYONE sometime or another it will be felt,in one way or another. It's sad. I have to believe pain is from the evil side. Sad

Hi Sherry, Im so glad you

Hi Sherry,

Im so glad you are keeping in touch. Good luck with your move. I'm reading about the pain many of us are having here. It really helps to communicate with other pain sufferers.

I hope everyone is hanging in there.

Msdoodle wrote:I have to

Msdoodle wrote:

I have to believe pain is from the evil side. Sad

The diabetic with neuropathy will not feel the stone in his shoe and will walk all day with it there as it forms an ulcer and eventually maybe even leading to an amputation. Pain tells us that something is wrong and to do something about it. Unfortunately, as many here experience, many times we are not smart enough to know what to do about it, and it can become a real pain.

Twain,I could take your

Twain,I could take your comment two different ways,(1) We the patients,are not smart enough to do anything about it,(2)The docs,are not smart enough to do anything about it. So with that I will choose #2. I'm unsure of which way you mean,so I certainly hope that you don't take it as in an insult,because I surely don't mean for it to be one,just as sure as, I am sure you don't mean it to be one. But who really knows?? I'm not in your mind. Have a great evening Twain.

Msdoodle wrote:Twain,I could

Msdoodle wrote:

Twain,I could take your comment two different ways,(1) We the patients,are not smart enough to do anything about it,(2)The docs,are not smart enough to do anything about it. So with that I will choose #2. I'm unsure of which way you mean,so I certainly hope that you don't take it as in an insult,because I surely don't mean for it to be one,just as sure as, I am sure you don't mean it to be one. But who really knows?? I'm not in your mind. Have a great evening Twain.

"We" means humanity, at this point in time.

Cool. Thank you Twain. Have

Cool. Thank you Twain. Smiling Have a great day tomorrow.

I'm glad you asked for

I'm glad you asked for clarification Doodle. Smiling I assumed that he meant the 'universal' we, but hey, you never know. Smiling
I jogged tonight. First time in about a month or so. It felt great but my back is going to be sore tomorrow I bet. (I wonder if this is the 'little' pain Twain? Smiling )

Daenerys wrote:'little' pain

Daenerys wrote:

'little' pain Twain? Smiling )

Hey,I like that!! little pain Twain..lol.. WTG!! Daenerys!! That's awesome!! I should have done something tonight,but I was being naughty and didn't..lol.. Oh well,I jump back up tomorrow,if I make it through the night..lol.. Have a great night Smiling

Daenerys wrote: I jogged

Daenerys wrote:

I jogged tonight. First time in about a month or so. It felt great but my back is going to be sore tomorrow I bet. (I wonder if this is the 'little' pain Twain? Smiling )

My back pain after running was because of my walking (and running) funny. A podiatrist fixed that problem with a good pair of orthotics.

Twain, there are many causes

Twain, there are many causes for neuropathy. Can you tell us what a few of them are and what medications work best for them?

JaneQPatient wrote:Twain,

JaneQPatient wrote:

Twain, there are many causes for neuropathy. Can you tell us what a few of them are and what medications work best for them?

- If you have diabetic neuropathy (like Daisy) then Neurontin, Lyrica, or Elavil can help.
- Neuropathy secondary to p.a. (pernicious anemia) is treated with B12.
- Carpal tunnel syndrome (and other compression neuropathies) are treated by relieving the compression, with a wrist splint or surgery.
- Compression of a spinal nerve is treated with physiotherapy or surgery.
- Removal of lead by chelation and avoidance is used to treat lead neuropathy.
- Amyloidosis can lead to neuropathy. The treatment depends on the cause (ex. multiple myeloma)
- Certain chemotherapies can give neuropthy.
- Trigeminal neuralgia responds best to Tegretol
- Valtrex the severity and length of shingles (Herpes Zoster).
This is just a sampling of the various neuopathies which include thyroid disease, HIV, phantom limb pain, autoimmune conditions, etc.

Thank you Twain,for the

Thank you Twain,for the explanation on that,and thank you Jane for asking. Have a great night,to you both. Smiling

What justification could

What justification could there be for giving neurontin to a person who suffers from " Carpal tunnel syndrome (and other compression neuropathies) are treated by relieving the compression, with a wrist splint or surgery."? or " Compression of a spinal nerve is treated with physiotherapy or surgery."

I guess I'm lucky because I

I guess I'm lucky because I haven't experienced much pain. I get the occasional lower back pain from lifting and carrying kids but that's about it.

Allow me to apologise for my

Allow me to apologise for my 'rude animal health' - physical anyway. My iatrogenic damage is largely cognitive and psychological (my pain is anguish).
To look at me, you would think I 'had it made', it's invisible pain that has destroyed any ability to trust.
And I obsess over the fact that the predator who assaulted me is still at large, still has a license to practice, continues to fool people and has colleagues colluding to protect him.

Yes Astraea,it is very sad,I

Yes Astraea,it is very sad,I bet there are the patients too,that try to protect him,by not saying anything!! You know the ones,that he has tried to do it to,or has and they let it go. I agree it is very sad!! Please hang in there Astraea. P.S. And no I'm not talking about you,I know you said you tried. Huge hugs. Also if he gets away with it here,it doesn't mean he will get away with it,when he meets "The Maker".. That's the glory of him you know?? He see's all.

Astraea, that is very sad.

Astraea, that is very sad. Only sufferers understand and are worthy of comments. I feel very bad for you. Especially when someone has gotten away with harming you. You never have to apologise.

JaneQPatient wrote: What

JaneQPatient wrote:

What justification could there be for giving neurontin to a person who suffers from " Carpal tunnel syndrome (and other compression neuropathies) are treated by relieving the compression, with a wrist splint or surgery."? or " Compression of a spinal nerve is treated with physiotherapy or surgery."

Any nerve pain may be alleviated to some extent wih Neurontin, but in certain cases if the cause is not addressed (ie. median nerve compression in carpal tunnel syndrome)the pathology can progress and become permanent. BUT if the carpal tunnel syndrome is caused by hypothyroidism (or some other reversible cause), one can choose to treat the hypothyroidism and also give Neurontin for pain relief, hoping that the neuropathy will resolve completely, thus avoiding surgery. However, the vast majority of cases are not reversible metabolic problems.

Likewise, if a spinal nerve is being compressed by a bulging disc and the edema (swelling) around it, with time and physio the swelling around the nerve can resolve and surgery won't be needed. One can use Neurontin to decrease the pain while waiting for the healing to occur.

Aside from migraine and the

Aside from migraine and the usual broken bones that kids get, the only pain I've had was from sciatica. After staying in bed for a week I noticed that I wasn't eating nor sleeping, and realized that I had the symptoms of depression. I can only guess how chronic pain that goes on for months and years makes a person feel.

Twain, This orginally had

Twain,

This orginally had been much longer but that post bit the dust.

The post led up to this: When the medical professionals who are/were supposed to treat the pain do not and worse make out as if the pain does not exist then the pain patient is turned into the psychiatric patient through no fault of their own. While the depression (like many other forms of mental illness) gets treated agressively and to almost no avail because the cause of the depression (the pain is not and there is emotional damage done when this occurs) the spiral downward become ever steeper.

Woman in the Dunes (Kobo Abe).
If you haven't, read the book and see the movie. Neither are to be missed (jmho).

JaneQPatient wrote:.... the

JaneQPatient wrote:

.... the spiral downward become ever steeper.

The pain becomes what is known as "total pain" - physical, emotional, spiritual, existential.

If a new patient came to see

If a new patient came to see you under those circumstances, what would you recommend?

JaneQPatient wrote:If a new

JaneQPatient wrote:

If a new patient came to see you under those circumstances, what would you recommend?

Jane, I'm not sure what you're referring to. Instead of me answering the wrong question, please clarify.

Hypothetically, a new

Hypothetically, a new patient comes to see you who's history indicates the "total pain" scenario, what would you do/recommend to get them back on track?

JaneQPatient

JaneQPatient wrote:

Hypothetically, a new patient comes to see you who's history indicates the "total pain" scenario, what would you do/recommend to get them back on track?

First, I'd go through the history and findings from the very beginning hoping that something was missed by the other doctors, something that could reverse the whole process. I'd be a hero in the patient's eyes, and I'd feel great too, but realisticaly this scerario is very rare.

Getting back to reality: assuming the condition leading to the pain is not reversible, I'd try to control the pain with whatever works - anti-inflammatories, tricyclic antidepressants (like "Elavil") for their pain modulation properties, anti-seizure medication (like "Neurontin" and "Lyrica") for their anti-neuritic activity, anti-spasmotics (like "Robaxin") if there was evidence of muscle spasm, and narcotics (like "Dilaudid") if weaker analgesics did not help. If there were symptoms of depression, I'd start anti-depressants to try to break the cycle of helplessness, and if they start working reinforce it with CBT (cognitive behaviou therapy) or other forms of psychotherapy. If there is some relief of pain, I'd try to gradually increase physical activity and try to get the person back to a functioning level small steps at a time.

If there is very little or no improvement, I'd try to help the person adapt to his/her new reality. I'd find out what the person used to enjoy, and what s/he'd wish to be able to do now. Example: if s/he loved playing bridge but does go out any more, I'd suggest s/he invite his/her (this is getting cumbersome - I'll stick with "he" if you don't mind) friends over to play at his house. I would definitely continue with both the psychotherapy and exercise routes, perhaps enlisting the help of a physiotherapist, O.T., massage therapist. I would stress the importance of social contact because many of these people become recluses and this further depresses them. I'd look for any way to get people to visit them and to find any excuse to get them out of the house. Support groups can offer practical help and build relationships. I'd find out how much of a role religion plays in the person's life; if it does, try to get him to services. If he can't get out, most congregations will have members do home visits. If the depression begins to lift, explore what activities he dreamt of doing when younger; perhaps now is the time to explore these - painting, writing, singing, etc. I'd encourage this person to try to make the most of what he has. If he does find somethiing that really excites him and puts all his energy into it, it's likely that he will hear him say: "Yes, I still feel the pain like before, but when I'm busy it doesn't bother me as much." At that point you know that the pain is not controlling his life any more; he's controlling it. Unfortunately, many people never get to that point.

You still seem like a very

You still seem like a very good doc to me Twain,no one can tell me no different. You still get 5's here. Well from me. Have a great day. Smiling

I have lived with pain for

I have lived with pain for the last 8 years or more. I know how frustrating it is. I have a kidney that doesn't function after surgery for an obstruction. The Dr.s will not remove the kidney but it is now dilated and growing cysts. The last urologist I went to wanted me to go to a pain management clinic. When I signed up I got this 50 page manuscript (no kidding) of questions to answer. I didn't have the time or patience to answer the same questions a million different ways. I never sent it in. They also told me there would be at least a 6 month wait. The next time my doctor referred me to him, he refused to see me. I don't want to cover the pain, I am the type that wants answers. The other kidney is "within normal limits". Why can't they remove it? Puzzled
So anyway, that's my vent for now. I have my good days and my bad days!!

Your questions should have

Your questions should have been answered by your doctors. Before you go to another appointment make up a list of questions you want and need answered. Go through the list with your doc. You have the right to make informed decisions. No information = preclusion from making an informed decision. Plus patients who have a good understanding of what is supposed to be wrong with them and what is available out there to treat a particular illness/condition tend to have better outcomes. You deserve this. We all deserve this.

Do independant research if you have to or to augment what your doctors have told you so that you can better understand your condition and what to do about it.

If a doctor of yours has a problem with answering your questions look for your health care elsewhere.

Good morning Jane. You give

Good morning Jane. Smiling You give good advice!! Thank you for posting. Have a great weekend.

Excellent! I find it

Excellent!

I find it interesting that you mentioned Robaxin as your muscle relaxant of choice ((It is no longer listed in the PDR under that brand name because it is such an old medication. Its been around so long (1974?) that there has been no profit for its orignal manufacturer to the point where they no longer produce it. It is only obtainable as a generic called methocarbomol at this point in time (in the USA at least).)) because most doctors these days would have mentioned Flexeril instead. I'm interested in knowing why you thought of prescribing Robaxin first instead of Flexeril in your post. Also you mentioned Dilaudid which is very hefty pain medication which can cause hallucinations (that may a have been the one that came to mind based upon the hypothetical scenario you were responding to) because most docs wouldn't mention that one but would have mentioned Vicodin or oxycontin instead and I find that interesting as well.

As far as the AD's go, I also find it interesting that you mentioned tricyclics which are the ones which evidenced based practice should to be the AD's of choice given the scenario posited but many docs these days would have reached for the Cymbalta instead (their choice possibly influenced by big Pharma and/or advertising?). So I'm wondering why you thought of Elavil first as well and why that one out of all the tricyclics.

Jane

JaneQPatient wrote: ....I'm

JaneQPatient wrote:

....I'm interested in knowing why you thought of prescribing Robaxin first instead of Flexeril in your post. Also you mentioned Dilaudid which is very hefty pain medication which can cause hallucinations (that may a have been the one that came to mind based upon the hypothetical scenario you were responding to) because most docs wouldn't mention that one but would have mentioned Vicodin or oxycontin instead and I find that interesting as well.

As far as the AD's go, I also find it interesting that you mentioned tricyclics which are the ones which evidenced based practice should to be the AD's of choice given the scenario posited but many docs these days would have reached for the Cymbalta instead (their choice possibly influenced by big Pharma and/or advertising?). So I'm wondering why you thought of Elavil first as well and why that one out of all the tricyclics.

Jane

(Because a medication is newer does not mean it's better. The same goes for procedures - virtual colonoscopy is NOT better than colonoscopy; in fact, it's inferior - at his point in time.)

Elavil has the most evidence for neuritic pain. In some of my patients with diabetic neuropthy, just 10-20 mg alleviates most of their symptoms. Apart from it's AD efect, it seems to have the best pain-modulating characteristics.

I would go with Robaxin rather than Flexeril in this situation because the patient would likely be on a tricyclic antidepressant, and Flexeril has the same side effects as they do (dry mouth, dizziness, drowsiness), giving a cumulative effect that would be detrimental.

Cymbalta is not yet available in Canada. It is most like Effexor(venlafaxine). The SNRIs and SSRIs are good anti-depressants, but not as good for pain as the tricyclics.

I find that Dilaudid has few side effects (constipation being the most common)when started at the lowest dose and slowly increased as needed.

I forgot acupuncture, which I do myself.

Cymbalta has been heavily

Cymbalta has been heavily promoted in the USA for its effacacy in the management of pain to both doctors and the public. Like you said, it is an SNRI and is chemically very similar to Effexor. When one seeks out information about Cymbalta one is commonly and almost exclusively referred to information regarding Effexor. Because Effexor is known to have very serious withdrawal syndrome one might expect Cymbalta to have the same or similar potential in that respect yet nothing is said of this and not much is publically stated about Effexor's severe withdrawal syndrome. Some people who have been prescribed Effexor must continue to take it for life because of the severity and permanance of its withdrawal syndrome. Patients have not and are not being warned of this possiblility.

I would like the problem to be addressed and seriously studied and until found to be an extremely rare risk a black box warning to be ordered by the FDA in connection with Effexor and if Cymbalta does not turn out to be significantly different then it should be given a black box warning as well. I would suggest not prescribing either of these medications to patients unless all possible safer alternative medications have been tried unsucessfully first and with the patient's full knowledge that they may have to take the medication for the rest of their lives. JMHO

Jane

Some of the names to drugs

Some of the names to drugs alone,is enough to scare a person. Sad

JaneQPatient wrote:Your

JaneQPatient wrote:

Your questions should have been answered by your doctors. Before you go to another appointment make up a list of questions you want and need answered. Go through the list with your doc. You have the right to make informed decisions. No information = preclusion from making an informed decision. Plus patients who have a good understanding of what is supposed to be wrong with them and what is available out there to treat a particular illness/condition tend to have better outcomes. You deserve this. We all deserve this.

Do independant research if you have to or to augment what your doctors have told you so that you can better understand your condition and what to do about it.

If a doctor of yours has a problem with answering your questions look for your health care elsewhere.

riiight.. Eye-wink

[quote=cartok riiight.. I

cartok riiight.. Eye-wink [/quote wrote:

I take it that by the wink you mean that what I suggest isn't always possible mostly for reasons beyond the patients control such as lack of doctors available in their area, money, access and sometimes due their being in the hospital when they need to find out and they aren't getting cooperation there. Of all of these things the one that might seem most insurmountable might be the least of all obstacles.

If you are in a hospital and they aren't answering your questions, get two pieces of paper and something to write with. Write a request to be transfered to another facility. Give one to the staff at the hospital and keep the other one for yourself and don't tell them you've made a copy* because in a hospital you don't have a secure place to keep it where an unhanded person doesn't have access to it. Refuse treatment (put that in your transfer request too) until after you've been transfered. It may not work but if it doesn't and you're still alive you've got your own proof*. Inconvenient truths have a way of not making their way into the record and if they do they have a habit of disapearing from records.* Then go after the hospital and the doctors and staff.

Money is more difficult. If you're poor there really isn't much you can do. If you've got a lot of energetic friends they can do some fundraising to try to get you the help you need. If you've got some money set aside for an emergency then you should consider using it to make sure that you get the best possible care by paying for the second opinion yourself.

Jane

*CYA. Sad but true this must be done at times even with those who are supposed to be there to help you.

JaneQPatient

JaneQPatient wrote:

[quote=cartok riiight.. Eye-wink

I take it that by the wink you mean that what I suggest isn't always possible mostly for reasons beyond the patients control such as lack of doctors available in their area, money, access and sometimes due their being in the hospital when they need to find out and they aren't getting cooperation there. Of all of these things the one that might seem most insurmountable might be the least of all obstacles.

If you are in a hospital and they aren't answering your questions, get two pieces of paper and something to write with. Write a request to be transfered to another facility. Give one to the staff at the hospital and keep the other one for yourself and don't tell them you've made a copy* because in a hospital you don't have a secure place to keep it where an unhanded person doesn't have access to it. Refuse treatment (put that in your transfer request too) until after you've been transfered. It may not work but if it doesn't and you're still alive you've got your own proof*. Inconvenient truths have a way of not making their way into the record and if they do they have a habit of disapearing from records.* Then go after the hospital and the doctors and staff.

Money is more difficult. If you're poor there really isn't much you can do. If you've got a lot of energetic friends they can do some fundraising to try to get you the help you need. If you've got some money set aside for an emergency then you should consider using it to make sure that you get the best possible care by paying for the second opinion yourself.

Jane

*CYA. Sad but true this must be done at times even with those who are supposed to be there to help you.

LOL, you got all THAT from a wink? Usually when I get a wink I know I'm getting lucky tonight.

Love me Tender...........Elvis

Hell, you're a guy, I'm a

Hell, you're a guy, I'm a gal. Men are from Mars. Women from Venus. Background comes into it too. LOL!

Hiya Elvis Randall,where is

Hiya Elvis Randall,where is your Mustang Sally?? http://www.youtube.com/watch?v=7upBJ63qGwY Maybe change your attitude,and maybe John will let you stay. We hope. Smiling And stop treating other docs and other people like poo. Hey,better yet,maybe John can put up a poll,personally,I don't care if you stay,and I don't care if you go.

Msdoodle wrote:Hiya Elvis

Msdoodle wrote:

Hiya Elvis Randall,where is your Mustang Sally?? http://www.youtube.com/watch?v=7upBJ63qGwY Maybe change your attitude,and maybe John will let you stay. We hope. Smiling And stop treating other docs and other people like poo. Hey,better yet,maybe John can put up a poll,personally,I don't care if you stay,and I don't care if you go.

Hiya Walmart greeter Msdoodle. Where is your Bible? What happened to "turn the other cheek?" Unless your other "cheek" is too heavy to turn. Personally, I couldn't care less if I get booted. Getting another new ID is not that difficult. I don't recall treating other docs like poo, so you can stop your usual manipulations. I do recall treating SOME deserving people like poo. BTW, why are you treating noot like poo? Exposing her personal secrets on the forum is the worst conduct from any poster I have ever seen. Not a suprise since you have always been nasty and vindictive behind your " welcome to Walmart" facade.

Maybe you can google the song "Should I Stay or Should I Go" by the Clash. I think I'll sing that song in my next Vegas gig.

Ciao.......gentle hugs with a little sqeeze on the lower cheeks.

Elvis

Here's a little ditty from

Here's a little ditty from the chat room. Hey,I learned from the best,who did you learn from?? I was fluffy by the way.. Too tell you the truth,I don't like being around evil people because it rubs off. Here you have been banned from a site Randall,but you still come back to cause drama and terror,now tell me that is not evil!! btw,randall you were guest 615,before you signed on with elvis.And you have the gumption to talk crap about me. And everyone else.and All the docs,yea,your great too Randall. And some think Dr. Keith is full of himself!! PLEASE!! That's a joke compared to what your filled with. I would choose Dr.Keith over you any day!! And I certainly don't believe you are a doctor,well maybe you were,but I think your license have been revoked.Or maybe thats from playing doctor,its unclear at the moment.

Who is on line in Main chat
guest-617
Daenerys
ElvisPresley

Daenerys:LOL naaaa!!! You need to come back with your tail between your legs like Keith. guest-615:I'll come back with my middle finger salute Daenerys:But if you're a religious nut, I'll call for a banning again! Daenerys:I've sent so many complaints about past posts and got NOTHING in response...

Daenerys:you write one thing and he's on top of it. Go figure guest-615:Shelleys is just nuts

Daenerys:

LOL
guest-615:ok, thank god Shelley is not here to correct me

Daenerys:Shelley is smart.Daenerys:Sorry. I couldn'

resist. guest-615:do you believe I'm Randall now?

Daenerys:If you want to talk nuts... Daenerys:Hey...I don't believe in flying teapots...

But.

Daenerys:I guess you could be. guest-615:No, I'm Randall guest-615:I'll sign on as my only user name thats not banned if you want'

Daenerys:Elvis?

* Daenerys has joined the chat

guest-615:dont have a name

it got banned

Daenerys:Don't want one?

Daenerys:AWWWW...really?

guest-615:would you believe ............Randall?

Daenerys:

lol...no, I wouldn't.

I don't think he would be that....forthcoming.

guest-615:why not?

* Sent at 22:24

guest-615:Randall got banned because he "argued" with doodle

Daenerys:He's....a legend.

Daenerys:

guest-615:why did you change your name Daenerys

Daenerys:Everybody got on Randall...

Daenerys:Because...Daenerys is more interesting.

* Sent at 22:25

guest-615:Not everyone.........just JaneQ, Shelley, Doodle

Daenerys:lol

Daenerys:No...JaneQ too?

guest-615:Yup

Daenerys:Actually, it started when Randall said a bad word.

guest-615:Chode

guest-615:is not a bad word

Daenerys:And he was mean to ...jbb I think

Daenerys:I don't know what the hell it is...never heard it before.

guest-615:nah........I wouldn't be mean to jbb

Daenerys:lol

[email protected]

* Sent at 22:27

guest-617:

guest-615:lol, have never used that e-mail

Daenerys:lol...oh

* Sent at 22:28

Daenerys:Well, it's on the board in the search function but...

guest-615:how did you get that e-mail address anyways?

Daenerys:most of the posts are deleted.

guest-615:all were deleted

guest-615:John hates me...lol

Daenerys:I use my detectiving skills...

* Sent at 22:29

guest-615:not that I care about what John thinks

Daenerys:LOL naaaa!!! You need to come back with your tail between your legs like Keith.

guest-615:LOL

not I

guest-615:I'll come back with my middle finger salute

Daenerys:But if you're a religious nut, I'll call for a banning again!

Daenerys:LOL

I'm sick of those monkey pictures.

guest-615:yeah...me too

do you like elvis?

Daenerys:Anna Graham. very smart

guest-615:lol

guest-615:Anna was good

but anna got banned too

Daenerys:LOL....and so fast too!!

guest-615:yup

guest-615:john hates me

Daenerys:I've sent so many complaints about past posts and got NOTHING in response...

guest-615:won't be long before elvis is gone too

Daenerys:you write one thing and he's on top of it. Go figure.

Daenerys:I thought Elvis WAS gone?

That

guest-615:yeal....he tolerates bad language from some but not others

Daenerys:ugh...why Elvis? Why?

lol

* Sent at 22:33

Daenerys:The only one left who says great things is Astraea.

guest-615:because he deleted BritanySpears

Daenerys:B.S. lol

Daenerys:You can read the past forum posts without signing up.

guest-615:Yeah.....I dont agree with alot of what Astraea says. But I do leave her alone when she is reasonable

* Sent at 22:34

Daenerys:Absolutely....but she comes out with the FUNNIEST comments.

guest-615:Just randall's

guest-615:she does have a sence of hunour

Daenerys:You spelled that wrong..,.misfit.

guest-615:Shelleys is just nuts

Daenerys:

LOL

guest-615:ok, thank god Shelley is not here to correct me

Daenerys:Shelley is smart.

LOL

Daenerys:Sorry. I couldn'

resist.

guest-615:do you believe I'm Randall now?

* guest-622 has joined the chat

Daenerys:If you want to talk nuts...

* guest-622 has left the chat

Daenerys:Hey...I don't believe in flying teapots...

But.

Daenerys:I guess you could be.

* Sent at 22:37

Daenerys:In which case, I would have to ask, why are you here

guest-615:Thats the problem with singing on as guest

Daenerys:?

What is?

Oh...right.

guest-615:spelling again

Daenerys:

guest-615:I still come now and again

Daenerys:That's not spelling. That's keyboard errors.

Daenerys:Really?

guest-615:I've noticed the Forum is not as busy these days

Daenerys: No, it's really kind of dead isn't it?

Can you tell me the truth? Were you Brandlynn

Daenerys:?

guest-615:No, I'm Randall

Daenerys:Okay.

* Sent at 22:39

Daenerys:She ran over squirrells for the hell of it 617.

guest-615:I'll sign on as my only user name thats not banned if you want'

Daenerys:Elvis?

guest-615:yup

BRB

Daenerys:lol...but everybody called you on it.

kk

guest-615:called me on what?

Daenerys:on being Elvis. I'm just surprised that it wasn't deleted.

guest-615:Me too actually

Daenerys:k sign on.

lol

guest-615:If John reads the chat rooms, I'm sure that'll be gone too

Daenerys:Isn't that a BLESSING?

LOL Noot and Doodle? Good grief!

ElvisPresley:What's that about?

Daenerys:I gave up reading those a while ago. Daenerys:It sounds to me like Noot sent some emails a while ago...

ElvisPresley:Have you noticed, anyone that crosses doodle gets banned?

Daenerys:and so now, because there has been a 'difference of opinion'... Daenerys:Well, I crossed Doodle and didn't get banned.

ElvisPresley:right.....only doctors get banned Daenerys:God...I thought I was though...so I was proactive and sent emails to John complaining about her. ElvisPresley:I'm anti-irrational people

What DID Noot look like?

Daenerys:I'm curious.

ElvisPresley:She looked about 35....with nice cleavage...lol

Daenerys:Besides the nice cleavage....LOL...you beat me to it.ElvisPresley:I'm a boob guy, just ask my wife

Daenerys:LOL

So you said. ElvisPresley:between you me and the fence post.....not all doctors are up to date ElvisPresley:You should see some of my medical meetings.......I'm known as the doc with bad language

Daenerys:Really? LOL

* Sent at 23:12

ElvisPresley:yup.......I don't take crap from docs that try to hide mistakes Daenerys:Well, I would hope you wouldn't be calling any of your colleagues a chode.

lol

ElvisPresley:lol

they would'nt know what a chode is

Daenerys:LOL

And now, we ALL know.

We're privileged.

ElvisPresley:chode is not THAT bad

* Sent at 23:14

Daenerys:I just, don't know. I don't have an opinion.

* Sent at 23:14

Daenerys:Do you have ratings on here?

ElvisPresley:LOL....bad boys come from Manitoba too

yup....all fives

Hello jbb....Sorry for the

Hello jbb....Sorry for the pain. 6 months ago I had a fall from a roof top where I was working on a A/C unit at my job here in Houston.. I broke 2 bones in my lower back and damaged my wrist. The FIRST workmans comp. doc had prescribed Hydrocodone which I didn't want because I had to much of it when I was in the hospital after the accident. To get to the point my new doc. has prescribed carisopodol and I take a couple of Advil with that and it works fine for me. I don't know your case and I'm not a doc. but have you had a MRI done. I know that they don't always help because it will not show everything that is wrong, but you might get lucky and they will see something. Once again sorry for your pain.

That's terrible what

That's terrible what happened to you Egarrett. Here's to a fast recovery for you,the best of luck!! NOONE should have to suffer through pain!!

And for some that see

And for some that see shrinks should not refer to others as nuts!! Sad

Msdoodle wrote: Here's a

Msdoodle wrote:

Here's a little ditty from the chat room. Hey,I learned from the best,who did you learn from?? I was fluffy by the way.. Too tell you the truth,I don't like being around evil people because it rubs off. Here you have been banned from a site Randall,but you still come back to cause drama and terror,now tell me that is not evil!! btw,randall you were guest 615,before you signed on with elvis.And you have the gumption to talk crap about me. And everyone else.and All the docs,yea,your great too Randall. And some think Dr. Keith is full of himself!! PLEASE!! That's a joke compared to what your filled with. I would choose Dr.Keith over you any day!! And I certainly don't believe you are a doctor,well maybe you were,but I think your license have been revoked.Or maybe thats from playing doctor,its unclear at the moment.

Who is on line in Main chat
guest-617
Daenerys
ElvisPresley

Daenerys:LOL naaaa!!! You need to come back with your tail between your legs like Keith. guest-615:I'll come back with my middle finger salute Daenerys:But if you're a religious nut, I'll call for a banning again! Daenerys:I've sent so many complaints about past posts and got NOTHING in response...

Daenerys:you write one thing and he's on top of it. Go figure guest-615:Shelleys is just nuts

Daenerys:

LOL
guest-615:ok, thank god Shelley is not here to correct me

Daenerys:Shelley is smart.Daenerys:Sorry. I couldn'

resist. guest-615:do you believe I'm Randall now?

Daenerys:If you want to talk nuts... Daenerys:Hey...I don't believe in flying teapots...

But.

Daenerys:I guess you could be. guest-615:No, I'm Randall guest-615:I'll sign on as my only user name thats not banned if you want'

Daenerys:Elvis?

* Daenerys has joined the chat

guest-615:dont have a name

it got banned

Daenerys:Don't want one?

Daenerys:AWWWW...really?

guest-615:would you believe ............Randall?

Daenerys:

lol...no, I wouldn't.

I don't think he would be that....forthcoming.

guest-615:why not?

* Sent at 22:24

guest-615:Randall got banned because he "argued" with doodle

Daenerys:He's....a legend.

Daenerys:

guest-615:why did you change your name Daenerys

Daenerys:Everybody got on Randall...

Daenerys:Because...Daenerys is more interesting.

* Sent at 22:25

guest-615:Not everyone.........just JaneQ, Shelley, Doodle

Daenerys:lol

Daenerys:No...JaneQ too?

guest-615:Yup

Daenerys:Actually, it started when Randall said a bad word.

guest-615:Chode

guest-615:is not a bad word

Daenerys:And he was mean to ...jbb I think

Daenerys:I don't know what the hell it is...never heard it before.

guest-615:nah........I wouldn't be mean to jbb

Daenerys:lol

[email protected]

* Sent at 22:27

guest-617:

guest-615:lol, have never used that e-mail

Daenerys:lol...oh

* Sent at 22:28

Daenerys:Well, it's on the board in the search function but...

guest-615:how did you get that e-mail address anyways?

Daenerys:most of the posts are deleted.

guest-615:all were deleted

guest-615:John hates me...lol

Daenerys:I use my detectiving skills...

* Sent at 22:29

guest-615:not that I care about what John thinks

Daenerys:LOL naaaa!!! You need to come back with your tail between your legs like Keith.

guest-615:LOL

not I

guest-615:I'll come back with my middle finger salute

Daenerys:But if you're a religious nut, I'll call for a banning again!

Daenerys:LOL

I'm sick of those monkey pictures.

guest-615:yeah...me too

do you like elvis?

Daenerys:Anna Graham. very smart

guest-615:lol

guest-615:Anna was good

but anna got banned too

Daenerys:LOL....and so fast too!!

guest-615:yup

guest-615:john hates me

Daenerys:I've sent so many complaints about past posts and got NOTHING in response...

guest-615:won't be long before elvis is gone too

Daenerys:you write one thing and he's on top of it. Go figure.

Daenerys:I thought Elvis WAS gone?

That

guest-615:yeal....he tolerates bad language from some but not others

Daenerys:ugh...why Elvis? Why?

lol

* Sent at 22:33

Daenerys:The only one left who says great things is Astraea.

guest-615:because he deleted BritanySpears

Daenerys:B.S. lol

Daenerys:You can read the past forum posts without signing up.

guest-615:Yeah.....I dont agree with alot of what Astraea says. But I do leave her alone when she is reasonable

* Sent at 22:34

Daenerys:Absolutely....but she comes out with the FUNNIEST comments.

guest-615:Just randall's

guest-615:she does have a sence of hunour

Daenerys:You spelled that wrong..,.misfit.

guest-615:Shelleys is just nuts

Daenerys:

LOL

guest-615:ok, thank god Shelley is not here to correct me

Daenerys:Shelley is smart.

LOL

Daenerys:Sorry. I couldn'

resist.

guest-615:do you believe I'm Randall now?

* guest-622 has joined the chat

Daenerys:If you want to talk nuts...

* guest-622 has left the chat

Daenerys:Hey...I don't believe in flying teapots...

But.

Daenerys:I guess you could be.

* Sent at 22:37

Daenerys:In which case, I would have to ask, why are you here

guest-615:Thats the problem with singing on as guest

Daenerys:?

What is?

Oh...right.

guest-615:spelling again

Daenerys:

guest-615:I still come now and again

Daenerys:That's not spelling. That's keyboard errors.

Daenerys:Really?

guest-615:I've noticed the Forum is not as busy these days

Daenerys: No, it's really kind of dead isn't it?

Can you tell me the truth? Were you Brandlynn

Daenerys:?

guest-615:No, I'm Randall

Daenerys:Okay.

* Sent at 22:39

Daenerys:She ran over squirrells for the hell of it 617.

guest-615:I'll sign on as my only user name thats not banned if you want'

Daenerys:Elvis?

guest-615:yup

BRB

Daenerys:lol...but everybody called you on it.

kk

guest-615:called me on what?

Daenerys:on being Elvis. I'm just surprised that it wasn't deleted.

guest-615:Me too actually

Daenerys:k sign on.

lol

guest-615:If John reads the chat rooms, I'm sure that'll be gone too

Daenerys:Isn't that a BLESSING?

LOL Noot and Doodle? Good grief!

ElvisPresley:What's that about?

Daenerys:I gave up reading those a while ago. Daenerys:It sounds to me like Noot sent some emails a while ago...

ElvisPresley:Have you noticed, anyone that crosses doodle gets banned?

Daenerys:and so now, because there has been a 'difference of opinion'... Daenerys:Well, I crossed Doodle and didn't get banned.

ElvisPresley:right.....only doctors get banned Daenerys:God...I thought I was though...so I was proactive and sent emails to John complaining about her. ElvisPresley:I'm anti-irrational people

What DID Noot look like?

Daenerys:I'm curious.

ElvisPresley:She looked about 35....with nice cleavage...lol

Daenerys:Besides the nice cleavage....LOL...you beat me to it.ElvisPresley:I'm a boob guy, just ask my wife

Daenerys:LOL

So you said. ElvisPresley:between you me and the fence post.....not all doctors are up to date ElvisPresley:You should see some of my medical meetings.......I'm known as the doc with bad language

Daenerys:Really? LOL

* Sent at 23:12

ElvisPresley:yup.......I don't take crap from docs that try to hide mistakes Daenerys:Well, I would hope you wouldn't be calling any of your colleagues a chode.

lol

ElvisPresley:lol

they would'nt know what a chode is

Daenerys:LOL

And now, we ALL know.

We're privileged.

ElvisPresley:chode is not THAT bad

* Sent at 23:14

Daenerys:I just, don't know. I don't have an opinion.

* Sent at 23:14

Daenerys:Do you have ratings on here?

ElvisPresley:LOL....bad boys come from Manitoba too

yup....all fives

I quoted your post so you don't edit it.
OK Doodle, your nuttiness is shining through loud and clear! WHERE in that post was I "evil"???? Where in that post did I say ANYTHING or COMMENT on Dr. Keith?????????? Stop with are manipulations you little nut bag!

Elvis

Thanks Ms...just got these

Thanks Ms...just got these pins in my wrist for another month or so and then hopefully back on my motorcycle again..I beleive the worst part of this whole thing is the boredom during the healing process..not used to just sitting around...grrrrrrrrrr..can only clean the house so much...lol..
thanks again Ms Eye-wink

I know how you feel,sadly to

I know how you feel,sadly to say,I have no doubts you will be back on your bike in no time,just gotta watch out for the idiots that try to run you over. Be careful!! Have a great day!! Smiling P.S. I have seen people that do that on purpose!! As a matter of fact one of them was a friend of mine!! Friend no more!! Thank God!!

ElvisPresley wrote: Too tell

ElvisPresley wrote:

Too tell you the truth,I don't like being around evil people because it rubs off. Here you have been banned from a site Randall,but you still come back to cause drama and terror,...And you have the gumption to talk crap about me. And everyone else.

I quoted your post so you don't edit it.
OK Doodle, your nuttiness is shining through loud and clear! WHERE in that post was I "evil"???? Where in that post did I say ANYTHING or COMMENT on Dr. Keith?????????? Stop with are manipulations you little nut bag!

Elvis

Doodle, I want to say that I am very surprised at your underhanded ways....but I'm not. Not really. It was quite obvious that 617 was there to eavesdrop and by the paltry amount of conversation, was quite content to 'listen' in, even after having the suggestion to go and register your user name. I knew right then. lol

I must say though, I don't understand your hatred and venom. I don't understand where it's coming from. Nobody did anything to you.
I honestly thought you were beyond all that until your argument with Noot. Now, I just don't know.

I'm very disappointed though that you think it's perfectly all right to post someone's conversation on the forum board. If anything, that action has made you look even worse than before. I hope you can find forgiveness for yourself at some point in this because you must know what an underhanded and dirty thing that is to do- much the same as bringing up old emails between you and Noot and airing all that dirty laundry out here for all to see....AS IF we were interested in learning about someone's sordid affairs or NOT. It's Noot's business. Nobody else's. What makes you think that ANYBODY is interested??

Too bad you are so underhanded. I thought that you might have had *some* nice qualities which is why I let everything go with you. I can forgive easily and once something is forgiven, it doesn't come back. That's the whole point of forgiveness. I just don't know why you persist with your hatred.

Please stay away from me,I

Please stay away from me,I have endured enough pain in my life. I owe you nothing,I owe my life to God!!

It seems that the REAL

It seems that the REAL action takes place in the chat rooms. That's why the forum has been more civilized lately.

This thread is on "Pain", and a lot of pain has been showing through here.

Twain wrote:It seems that

Twain wrote:

It seems that the REAL action takes place in the chat rooms. That's why the forum has been more civilized lately.

This thread is on "Pain", and a lot of pain has been showing through here.

? I don't understand the aspersions you have just cast. The forum has been more 'civilized' because I had a 'chat' with Randall????! Can you even *begin* to explain that?? I barely POST on this forum as it is!! So now, I'm a bad person because I chatted with Randall? I did something wrong?? I think you have made an ERROR in JUDGMENT. Sad

You give credence to eavesdropping? Because THAT is what that was! It wasn't even quoted in its entirety, with bits and pieces cut out. I do hope you are more discerning in your everyday life Twain!

Daenerys wrote:Twain

Daenerys wrote:
Twain wrote:

It seems that the REAL action takes place in the chat rooms. That's why the forum has been more civilized lately.

This thread is on "Pain", and a lot of pain has been showing through here.

? I don't understand the aspersions you have just cast. The forum has been more 'civilized' because I had a 'chat' with Randall????! Can you even *begin* to explain that?? I barely POST on this forum as it is!! So now, I'm a bad person because I chatted with Randall? I did something wrong?? I think you have made an ERROR in JUDGMENT. Sad

You give credence to eavesdropping? Because THAT is what that was! It wasn't even quoted in its entirety, with bits and pieces cut out. I do hope you are more discerning in your everyday life Twain!

Wow, Daenerys, you've really overreacted on this one, probably because I didn't make myself as clear as should have. This was meant as a general observation, not about someone specific. Before the new format, there was a lot more raw emotion on the forum. Since the new format, there hasn't been as much (ie. "more civilized"). Now I know why - it's been going on behind the scenes. That's what I meant by "the REAL action".

I am sure John has the

I am sure John has the entire chat if any want to ask him to post it,I edited it because the remainder of it was Drearys talking to randall,about her medical issues,and he was giving advice on that. Who was it in and saying at other various times in the chat rooms,too often I seen comments in there about the nuts. Too bad I'm not dead yet? I don't know, I believe it was probably randall wishing me dead already,and probably drearys talking about the nuts. I guess that is how some get their kicks. Who knows. I don't. I don't like inflicting pain onto others,but they shore like inflicting it onto me. And then expect me to stay in the corner and cover my head.Huh.I can for so long,but then I lose control,and come back fighting. See I had to take the beatings before,but not now. I am starting to stand up again,after all these years. Take that as you will.

Well Ms. I'm glad to see the

Well Ms. I'm glad to see the word you put in your thread "was". Believe me I experienced my share of idiots out there. I've been riding for awhile and I've learned just to try and stay away from all vehicles when-ever possible.

Twain wrote:Daenerys

Twain wrote:
Daenerys wrote:
Twain wrote:

It seems that the REAL action takes place in the chat rooms. That's why the forum has been more civilized lately.

This thread is on "Pain", and a lot of pain has been showing through here.

You give credence to eavesdropping? Because THAT is what that was! It wasn't even quoted in its entirety, with bits and pieces cut out. I do hope you are more discerning in your everyday life Twain!

Wow, Daenerys, you've really overreacted on this one, probably because I didn't make myself as clear as should have. This was meant as a general observation, not about someone specific. Before the new format, there was a lot more raw emotion on the forum. Since the new format, there hasn't been as much (ie. "more civilized"). Now I know why - it's been going on behind the scenes. That's what I meant by "the REAL action".

Sorry Twain. Maybe I did overreact to your statement. I was still in shock that someone would do something like that. I understand what you mean now.

Hi Egarrett, I just caught

Hi Egarrett,

I just caught your story about your accident. It sounds horrific, but man, you were lucky. What did they do for treatment for your back? Just curious. Hope you didn't already explain this to everyone. I'm glad you’re not paralyzed. If you need variety, you can come clean my house Laughing out loud

Hey,

Hey, Randall,Elvis,Sally,whoever personality you are today,I already turned four cheeks,how was I suppose to turn anymore. I imagine you have many cheeks with all the personalities you have,but I don't. I still only have four. Hubby said he has dibs on the bottom. Shocked

Hi Twain, I just saw you

Hi Twain,

I just saw you mentioned elavil in one of your postings. I have a question and this is not to bad mouth anyone. A while back when I was under the care of a TMJ specialist, he had me on elavil and tizanadine. We went on for months and months about this (probably years actually). I repeatedly told him it was not working for the pain and he insisted that was the correct medicine. I just don't understand why someone would insist that is right medicine when as a patient you KNOW if it's working or not. I figured that was the only option he knew. He was well aware of all the other meds I tried and did not agree with those. He was not a pill pusher yet I feel as if he let me walk around in severe pain. I know vicodin is not the answer but at least let me get "comforatble" so I can live.

Naly wrote:Hi Twain, I just

Naly wrote:

Hi Twain,

I just don't understand why someone would insist that is right medicine when as a patient you KNOW if it's working or not.

I don't know what he was thinking at the time, Naly. Sorry, I can't help with this one.

My comments on pain apply to

My comments on pain apply to other supposedly insurmountable problems as well

Twain wrote:

...... I'd encourage this person to try to make the most of what he has......

http://www.youtube.com/watch?v=-qTiYA1WiY8

Simply amazing Twain!! He

Simply amazing Twain!! He was a precious baby,and now he's an amazing young man,God has certainly blessed him in other ways. Smiling What an amazing family,that was great,thank you for sharing. Have a great night. Smiling

Naly wrote:yet I feel as if

Naly wrote:

yet I feel as if he let me walk around in severe pain.

Naly,there are many of them that let you walk around in pain.I don't know why either. I know when I have told them I had much pain,they give me medicine,the medicine helps,but the pain is still there. I guess we have to learn how to live with it,because thats what I'm trying to do now.I wish I had the answer to that. I did take that one medicine that you spoke of,but that was a muscle relaxer,is that protocol
for giving those for tmj?? I don't know,thats why I'm asking. I know when I took them for my back,they didn't work for me either,if its the same medicine your talking about.Hang in there!! Add here,Naly,maybe they don't mean to,I think that maybe they are scared of giving too much or something,or maybe there is a limit to what they can give, I don't know. I do know they can only do so much. And maybe thats just the best they can do with me,I'm not sure in your case.

Your right. Sorry I was

Your right. Sorry I was flip about it. You have good advice. I meant sometimes easier said than done. I am trying, but it's hard when you are in pain and exhausted from it. My family tries to support me but I know they are frustrated as well. I realize also that it is important to try not to dwell on it. Sometimes I have to step back and focus on something else. Thanks for the reply.

I'm sorry Cartok,maybe I

I'm sorry Cartok,maybe I missed something,I didn't see you flipping over anything. This is a pain thread,I think you are more than welcome to talk about it,if you want to. I think it helps to talk about it myself. Have a great night. P.S. Sometimes,it is impossible to focus on anything else,when the pain makes one miserable!!

Hi Egarrett, Thanks for your

Hi Egarrett,

Thanks for your story.

I went to see my dentist yesterday and started on a multiple purpose medication one being a pain medication called Amitriptyline, low dose of 10mgs. Mine is of the nerve pain nature. So we'll see where that takes me. Hopefully it works with not too many side effects.

Hi jbb, I hope it helps you.

Hi jbb,

I hope it helps you. One bad side effect of that is possible weight gain. Shocked

jbb wrote:Hi CL, I know it

jbb wrote:

Hi CL,

I know it is hard to talk about things sometimes. I have often thought about you and how your medical journey was going. Thank you for sharing. Please know we are here to support you so if you feel like sharing more we are here for you. You are soo young to be enduring all these problems. It is people like you that make me sit up and say to myself what I have is nothing compared to others pain. So whether you know it or not you give me and I am sure other people strength to go another day.

My sincere wish is for you to get better. I hope you will get that wish.

Hi jbb!!
So sorry it's been a while. Thank you for your extremely kind words:)

I'm still amazed (shocked) that SO many people have to endure similar events and yet "we" not only tolerate it but try so hard to accept it. Really....why should we? For the most part "we're not sure or we have to wait and see" is just not something we accept in our daily lives.

I thought I had reached a point of acceptance, but obviously not lol. I'm angry again and it's taking it's toll. Anyhow, I think I'm better off reading for now instead of writting.

How have you been? Maybe I'll get the answer after reading this thread. I hope you're getting some answers, or at least some relief??? Take care! CL

JaneQPatient wrote:Your

JaneQPatient wrote:

Your questions should have been answered by your doctors. Before you go to another appointment make up a list of questions you want and need answered. Go through the list with your doc. You have the right to make informed decisions. No information = preclusion from making an informed decision. Plus patients who have a good understanding of what is supposed to be wrong with them and what is available out there to treat a particular illness/condition tend to have better outcomes. You deserve this. We all deserve this.

Do independant research if you have to or to augment what your doctors have told you so that you can better understand your condition and what to do about it.

If a doctor of yours has a problem with answering your questions look for your health care elsewhere.

Hi Jane,
Great advice.. however I can't help but state it would only work that way in a perfect world.

jbb wrote:Hi

jbb wrote:

Hi Egarrett,

Thanks for your story.

I went to see my dentist yesterday and started on a multiple purpose medication one being a pain medication called Amitriptyline, low dose of 10mgs. Mine is of the nerve pain nature. So we'll see where that takes me. Hopefully it works with not too many side effects.

Hi again jbb.
I hope it works for you. When my pain began that was one of the first meds I was put on. Went all the way up to 75mg (even though it's intended to be given at low doses for pain management) unfortunately it didn't work for me:(
But for many it has, and I sincerely hope it works for you!

I'm pooped already... I hope

I'm pooped already... I hope to catch up soon. I haven't read other threads, I think I get the picture. I hope this thread remains on topic.

Hi CL. I was on 30mg of it.

Hi CL. I was on 30mg of it. Didn't work for me either.

Yeh, figures since I lost

Yeh, figures since I lost alot of weight finally just to gain it back.Sad

Hi CL, I know. I flip flop

Hi CL,

I know. I flip flop from acceptance to sadness. Each day is different. Just getting up in the morning to start my day is challenging but I do it and get going. I am a keep busy person so I don't have to think about my pain.

I hope my email did not make you feel angry again. I don't know if one can truly accept 100%. We can only control so much.

Maybe you will feel better sharing a little of concerns or problems. Sometimes it helps to get it off your chest.

Hi jbb, By email I presume

Hi jbb,
By email I presume you mean post? Either way, absolutely in no way did you upset me..not at ALL:) I would tell you lol, things can often be taken the wrong way here, so if I needed clarification, I would ask you and if you offended me I would say so. No need to worry, youve always treated me with much respect and you are very kind. Please don't worry about anything you say to me. I like to hear from you:) Hope to talk soon, CL

Yes post. I work with email

Yes post. I work with email so much. Glad to hear I did not offend. Not having such a great day today but hey the weekend is here and hopeful things will get better.

Hello. Please if you have

Hello. Please if you have found answers to your pain please pass it on to me. I too suffer from nerve damage in my legs and feet. Been through so much specialists and tests I am totally exausted and have almost given up. Seems doctors don't know how to treat this. I have been on all kinds of meds (lyrica, neurontin ect..) nothing helps. Everytime I am put on a new medication I must keep giving it time. Well I'm out of time. They don't know what caused it. I don't have diabities. Have had several surgeries (not sure if it has anything to do with it) Have been at the pain clinic in Toronto many times and that to me is a joke. I went from one doctor to another without kind of treatment. I also had to pay them 150.00$ just to get an appointment. I have been living with this for 5 years now. I have had to quit my job ( I worked in a hospital in the emergency department) so you can beleive there was a lot of running around in that place which ended my career. My family don't understand about this chronic pain. I can not understand why a person has to live like this but yet if this was a dog there would not be any hesitation to help this dog until they found something to help him. Not that I would want to be put down.( no pun intended) Doctors keep pushing me away. I feel like I have no hope. I am only 50 and would like to have a quality of life. The neurologist I see right now is totally against narcotics but I had to insist or I was going to admit myself to the looney bin. She put me oxycoden half a pill a day. Well of course that is a joke. She keeps telling me they are very addictive. Well hello I know that but I would rather be on something that will work and have an almost normal life. I have tons of pills in my medicine cabinet that don't work. Of course her firt thought is I'm addicted so she can't support my habit. Just angers me soooo much. If I had cancer and was suffering there would be no hesition on giving me something for pain. Well I could go on and on but I guess you've had enough and besides I'm feeling really weak right now. I do hope we can somehow communicate or someone can relate to me and give me some hope. I do thank you for listening to my problem and wish you the best. Hoping to hear from you.You may contact me via email

Sincerly Sue V

I'm sorry to hear of all

I'm sorry to hear of all your suffering Sue,Have you seen a pain management doc?? I don't know if you believe in prayer or not,but I do,and I will say one for you. Hang in there. P.S. I know sometimes,I can feel pain in my bones,but I've never had any kind of bone tests done,just xrays of my back. I would say look for another doc too,not all of them are the same. The best of luck!!

Hi Sue, I have no answers

Hi Sue,
I have no answers for you, but I do relate. I live with chronic pain (along with a hundred other "symptoms"). I understand why your doctor is hesitant to prescribe narotics and I'm in no way trying to imply they are the answer or are appropriate for everyone, BUT I do feel that if the patient has tried various alternatives, there are cases where it has to come to that. I don't think the doctor should be the one to make that decision, only the patient knows how they trully feel.

I'm heavily medicated, wish I wasn't and I look forward to the day when I'm not. I refer to my meds as a bandaid solution which is really all it is. Meds mask some symptoms, but believe me... they CAUSE some pretty nasty ones as well.

My impression from your post is that perhaps you need to find a doctor that is willing to listen, believe you and provide you with appropriate treatment whatever it may be. Living with pain is HELL and no one should have to live that way. Despite ALL the meds I'm on, I still have a lot of pain.

Ideally, having a proper diagnosis is the key. Without it, treatments will always continue to be a guessing game.

I wish I could offer you more help... if narcotics is what will allow you to live a "normal" life, then I believe it's justified. I don't think any doctor would disagree that allowing a person to resume regular activities will hinder their health - obviously it will do the opposite.

Personally, I've never gotten addicted to oxycoden. I've been taking it for almost 2 yrs (and stronger drugs) I've at times stopped taking it and it was never a problem. I was also taking dilaudid (stronger narcotic) but for me, the endocet works better. I hope you are at least able to find a doctor that will listen. ---- When I know my doctor supports me, I feel better. When I meet one that doubts me, the burden increases dramatically. There are many people on this site, very different stories but are able to relate.

I wish you answers & relief. CL

Sue, This is my experience

Sue,

This is my experience with chronic pain and they can't find the answers. I do not believe if you are taking oxycodene for pain that you will get addicted. You will build up a tolerance. Chronic pain is a very complex thing and very difficult to get under control if it even can be. I think a lot of drs. fear of giving too much medicine because of the long term damage to organs. As for the dog, LOL, of course we don't want to see animals in pain either. I'm a true animal lover. Who really knows when they are out of pain?

Like CL said, find a dr. who you feel at least listens to you.

Thank you so much all for

Thank you so much all for your kind words and understanding. I am relieved to know I am not the only one who suffers. The neurologist I am seeing is sympathetic in some ways but at times she can be very cold. The last time I went in to see her I was totally hysterical and she told me to stop this as I may be making things worse for myself by letting myself be negative and to concentrate on finding a solution. Well wouldn't that be her job to find a solution. This is exactly what I mean though. Doctors become unsympathetic when they feel their treatment doesn't work. I am trying to find another doctor (neurologist)but it's really difficult here in this city and to make matters worse I don't have a family doctor. I had an argument with him about all this as he wasn't doing anything for me so he told me to leave his office and not come back. Now what kind of doctor or person does this? He really was offended when I would go in and ask to be referred or to do something for me. He had been my doctor for 10 years. Doctors here in Northern Ontario are very rare. Anyway this is all the stuff I have to deal with on top of all my pain. I really feel so unlucky with this matter. Always a door slammed in my face. Well thanks for listening. Hopefully someone will see this post and have an answer. Again thanks. Hope you are all coping.
Sue

It is to my belief,some of

It is to my belief,some of them lose their compassion,somewhere along the way. Sad And that's sad.

Hi again, I read my post

Hi again,
I read my post again, I just want to add that I'm in no way saying oxy's are not addictive, they absolutely can be. I was simply stating that for me it wasn't an issue. But for many people it is and can create alot of problems.

Sue said "I had an argument

Sue said "I had an argument with him about all this as he wasn't doing anything for me so he told me to leave his office and not come back. Now what kind of doctor or person does this?"
_______

Sue, I've heard a couple of people here say the dr. told them not to come back. It just floors me that a dr. would say that. I've been told we have to get other pain patients in when my pain meds were not working, but at least it was said in a human way. I hated that place anyway so I didn't care.

I just had to put my 2 cents in. That would not be a dr. I would speak highly of or recommend. It would be Home Depot time.

egrupert: I see Dr Daitch at

egrupert: I see Dr Daitch at Advanced Pain in Ft Myers Fl, For over a yr I travelled over 800 miles each way every month to see him. I take methadone, and have nerve blocks. I have now moved nearby.. According to Dr D, as well as Dr's at Duke University Pain Center, methdone is the best drug for nerve pain. HOWEVER; it is an additive drug and should ONLY be used after cafeful consideration of your situation, and the potential side effects. It has kept me sane for over 5 yrs now. I will probably take it for the rest of my life, thus being additive does not matter.

A good Pain Center is very important. I tried 3 different clinic's before I found the right fit.One Dr refused to treat me because I was "too complicated" I was upset and cried at first then realized that I was much better off, NOT having him as my Dr.One Dr at Duke did a "pain test" to see if my pain was "real", injected my spine w/drugs to see if pain contiunued. I passed. Thought it was strange though since I had multiple surgeries. I do not mind that they did it. Other Dr's took me much more seriously after that.

I also take Cymbalta. It has helped alot. Before I started taking it I did not realize the level of my depression. I still cannot do much because of pain/restrictions/disability, but it does keep me from lying in bed,worrying etc. I also think it helped my pain some.

CL, I TRYED to find a

Smiling CL, I TRYED to find a doctor who would listen to my ,'real,' complaints, and I was chastized with the comments, I was doctor hopping and I just didn't like to be told their was nothing they could do for me...in fact I found several doctors who did listen because it was not all in my head and I had serious, chronic infections, growths, chronic inflamations that were left untreated..... in my gallbladder, filopian tubes, overys, sigmoid colon, uterus, kidneys, stomach, heart etc.....i had no other opions but to doctor hope because I was being treated as if my complaints were not valid medical problems, and indeed they were, unless the other doctors who actually did surgerys were just pasifying me?

I was put on many meds to band-aide very serious medical situations, and was told by one young, GP., i JUST LIKED SURGERYS Sad yeh, right Shocked Shocked Shocked and the only reason I was in seeing him was because he was sooooooo, good looking? Barf! Barf!

I had a very kind specialst who removed my filopian tubes that were going to explode and my sigmoid colon was tangled around other organs, causing me not to have proper bowel movements, that never let them ever again say it was all in my head...I was so infected, I could have died...and they wonder why, I get so angry...I went from doctor to doctor and finally I threatened to call the police Sad Sad I was always sent away with what i was trying to tell them was not real....like was was inventing diseases just to get a look at the doctors offices...

I have been on narcotics for quite some time....i would prefer a cure for the pain but for now i must take the oxycoten....and yes, there are many side effects one must deal with.....the long term effects, I have no idea what they are...all I know is some days i feel sick form all the meds i am on...

So I feel you are damned if you do, and damned if you don't....if you seek more help, on your own, you are classified as a nut, or trouble maker, and you are treated very badly!!

sherry

egrupert, My doc tried to

egrupert,
My doc tried to get me to take meth (I take endocet and high doses of the fentanyl patch). Even so, I'm in pain - Some days are better than others. Meth scares me, I've seen what it can do to some (granted these people weren't pain patients) but I'm not convinced that jumping from one poison to another is the best choice.

My other issue, the way it's dispensed here is only at selected pharmacy's. My doc would probably allow me to take a few days or a weeks worth on my own, but it just adds to another "control" in my life. If I had to attend the pharmacy each day (which I don't know how I could get there in so much pain) it would just be another nuissance for me.

I may one day have no alternative, but I am still fairly young and adding bandaids are not my first choice.

I do agree there is a place for it. It's just not for me right now.
Forgot to say, it'll probably be what I need when the time comes to get off the fentanyl.

Hi Sherry, I relate. I'm

Hi Sherry,

I relate. I'm thankful my GP believes me, but as I said, he's not a specialist and has limitations. Even the specialists are puzzled. I have one (gastro) who is ignorant treating me as others have in the past. I've only seen him once, going again soon and his attitude better change because I'm done with that. Not that it's a good thing, but at least now I have labs that correlate with my complaints. Some docs have the attitude of treating the labs instead of the patient, and that is what gets them in trouble.

I "think" and I sure hope the being treated like a piece of crap is done and over with. It's just moving ahead and getting answers I'm satisfied with in order to get the right treatment plan in place (hopefully before it's too late) so that I can get some sort of normal life back.

It's so unfair to my children and husband! (That's it for now, that's the part that gets me)

I was also on meth,

I was also on meth, cymbalta, had nerve block shots and trigger point injections. Zip relief for me. Why is this so difficult?????? Shocked

HI CL, You probably wrote

HI CL,

You probably wrote this in a previous post but my mind retains only so much. You mentioned you had kids. How do you cope with the pain and running a household? It must be tough.

ask your doc about

ask your doc about pregabalin. it is approve in both US and Canada for nerve pain. good luck to you!

I understand

Smiling I understand completely...having kids and a husband to try to deal with as well as pain must be so trying.... i know i have grown up kids and grandkids but it not the same as trying to cope daily with chronic pain plus try to do your best to run a house hold...it must be hard on all of you...i feel for you CL, because looking back, coping with what you are going through, I don't know if I could have done it...I get depressed and cranky now, so having kids daily would be so hard because they have no idea how come mommy is sick...My husband has been so very good to me but i know its hard on him.....On my so called,'GOOD DAYS,' we get to do a bit more, but its hard....always going to doctors is certainly not a way of life, its not normal....so hang in there, and hopfully things will get better!! I sure hope so, CL.... Smiling

take care dear, and keep looking....

hugs,
sherry

Sorry I did not reply,

Smiling Sorry I did not reply, before, but I am still trying to figure out stuff, Sorry again, thank you...and I hope your pain gets better...pain is such a downer!!I have to read so much to catch up, but it does help to pass the time when i am up so much...

have a great day..

sherry

The Value of Hard

The Value of Hard Places
TGIF Today God Is First, by Os Hillman

So then, death is at work in us, but life is at work in you. - 2 Corinthians 4:12

Being forced into hard places gives us a whole new perspective on life. Things we once valued no longer hold the same value. Small things become big things, and what we once thought big no longer holds such importance.

These hard places allow us to identify with the sufferings of others. It keeps us from having a shallow view of the hardships of others and allows us to truly identify with them. Those who speak of such trials from no experience often judge others who have had such hardship. It is a superficiality of Christian experience that often permeates shallow believers.

Those who have walked in hard places immediately have a kinship with others who have walked there also. They do not need to explain; they merely look at one another with mutual respect and admiration for their common experience. They know that death has worked a special thing in them. This death leads to life in others because of the hard places God has taken them through.

It is impossible to appreciate any valley experience while you are in it. However, once you have reached the top of the mountain, you are able to appreciate what terrain you have passed through. You marvel at what you were able to walk through. The valley of the shadow of death has yielded more than you ever thought possible. You are able to appreciate the beauty of the experience and lay aside the sorrow and pain it may have produced.

Death works in you for a greater purpose. If you are there today, be assured that God is producing something of much greater value than you will ever know.

egrupert: methadone is given

egrupert: methadone is given in pill form for pain,. one month RX at a time. All is tracked by the DEA, and you are required to be drug tested. You DO NOT have to go every day, that is reserved for treatment for herion addicts who are on meth tx. Any pharmacy can order methadone. You do have to use the same phar for all RX's. I cried at an Eckerd's when I was treated like a drug adddict by a tech, "we don't have THAT drug here!. Well, they did, and she lost her job. It is the pharmacist who decides what drugs to order, or the home office for large chains. Most will help iof you ask the right person, they are afraid though of people checking them out for robberies.

I used to be a meek doormat. Pain is like an abusive mate, it brings you down and destroys your self esteem. Bad/incorrect treatment and medical providers make the problem worse. I have learned to stand up for myself. But it has not been easy. I have had to learn not to let pain define who I am. I am still an ok person. I am strong, and I will survive. I do hope that I can help other people through the journey. The icon I chose respesents the long road pain patients travel.

Never forget to smell the flowers, hold a hand, give a smile, and remind yourself that you are more than a "patient".

egrupert: Dr probebely

egrupert: Dr probebely missed the nerve. 1st series of injections I went through 0 effect 1st time, then 1 lasted 3 days, then nothing, then a week, etc. Each time $1300.00! FINALLY found a good Dr that could hit the ---- nerve! It hurts like hell when they get it right, but then the pain is so much better for awhile. There are also many different meds and combinations of meds that can be injected.
Methadone takes awhile to work, and by no means takes all of the pain away. It has however, made my life liveable again. Please see my other post. Good luck.
Be careful not to look like you are "Dr shopping',that can be mistakenly ID'd as drug seeking behavior, which WILL get you thrown out of treatment.

Get a good GP to be the "center of the wheel" of all of your treatment. This was a godsend for me. I do not think I would be alive today if not for his kindness and support, even though he could not do the actual treatment, he referred me to those who could, and when one did not work, he referred me to someone else. Dr referrals make a huge difference. So does trust.
I have 2 pain issues which have to be addressed separatley. Both the result of a butcher. I remain afraid of Dr's in general, but totally trust who I have now. Still have nigtmares though. I'll get throgh it, and so will we all. One day at a time.

egrupert: You may have bad

egrupert: You may have bad scar tissue and adhesions from the infections and surgery. Also neuroma's which are small benign nerve tumors. I was butchered, got drug resistant infection, multiple surgeries to try to correct. I am very thankful that Dr Hammond at Duke upfront that i was "humpty dumpty" and nothing would put me together again. Belly problems treated wdrugs, crushed nerve in leg from hernia's is treated with injections. Adhesions and scar tissue are hard to diagnosis. I was lucky enough to have Dr Hammond do 2 of my surgeries, he is past President Amereican ob/gyn, which means other Dr's respect and beleive him.He SAW the condition inside me. There are no, to my knowledge actual tests for it, other than a "pain test". Be careful with diet, heavy lefting etc. You could be prone to hernia's and /or twisted bowels which you DO NOT want. This is a disored that you have to learn to live with. There is no cure, BUT thee is treatment for the pain, you just have to find the right pain clinic. Trail and error, heartbreak and hope. Good luck. Beleive in yourself. Remind yourself of who you REALLY are EVERY DAY.
GLU

Does anybody out there know

Does anybody out there know what it takes to convince a doctor that you are disabled with a kind of disease which prevents you from getting up in the morning because of all the pain in your body. I wish I could go out to work everyday as I use to but it's just not possible. I am trying to apply for a disability pension but my doctor tells me I do not qualify for this as I am not disable. Anybody have any input on that.
Thanks.

oops!! should have checked

oops!! should have checked my quote as I made a mistake. I should have written (get up in the morning) and not doctor.

I'm not sure about there

I'm not sure about there Slafontaine,but I do wish you the best of luck.

Unless you have had tests

Unless you have had tests that confirm a diagnosis and the confirmed illness prevents you from working then you will have a hard time qualifying. Have you had any official diagnosis?

I know here,they deny, deny,

I know here,they deny, deny, deny you,then you can get a lawyer,and they can help,but it takes a very long time.By the time you get it,you already lost everything. I think the goverment is in cahoots with the lawyers,its like this hand feeds that hand?? Who knows.

slafontaine wrote:Does

slafontaine wrote:

Does anybody out there know what it takes to convince a doctor that you are disabled with a kind of disease which prevents you from getting up in the morning because of all the pain in your body. I wish I could go out to work everyday as I use to but it's just not possible. I am trying to apply for a disability pension but my doctor tells me I do not qualify for this as I am not disable. Anybody have any input on that.
Thanks.

Sorry I can't help you with this, I haven't had to face it. I qualify. I guess it depends which type of disability you're applying for. They all have their own criteria that a person has to meet in order to qualify. Did you get the documents? I think you need to put a little effort in research to see what you do or don't qualify for. I also agree with the need to find the cause of the pain, otherwise it can never be treated properly. Good luck Smiling

Egrupert: I'm having a

Egrupert:

I'm having a difficult time following parts of the conversation as I don't know who you're addressing. I haven't looked much into the methadone thing myself yet... from what I know, in Ontario Canada it's usually dispensed daily or only a few days at a time. It may very well be allowed once a month, this I've been told is reserved for very few who have a key??
Anyhow, like I mentioned I don't think (for me at this time) changing "poisons" will solve my issues.
CL

jbb wrote:HI CL, You

jbb wrote:

HI CL,

You probably wrote this in a previous post but my mind retains only so much. You mentioned you had kids. How do you cope with the pain and running a household? It must be tough.

Hi jbb,

I hate to admit but the truth is I'm just not able to run the household. SO MANY emotions go along with it, the worse is the guilt and anger. I just can't get past it. And then of course I break down in tears. It's NOT fair to my family and yet, there's nothing I can do about it. The kids are both in school, on weekends I rely on family and friends quite a bit. PD days and holidays like summer, march break and Christmas vacation, they go to daycare. Pretty pathetic huh? The years which will have the most impact on my children and I can't be a mom!

It changed in a blink of an eye! I used to be a single mom, working shift work (minimum 50 hrs/week) and yet was able to maintain the house, the youngest was still a baby (1 yr) the eldest has ADHD.... yet I always managed! I had my first child at 17, sad but true I was a better parent at that time.

As a wife, it's beggining to take it's toll. I was married about 5 months before I got sick. No one expects the "sickness and in health, til death do us part" to come so soon. One thing I've learned, is to always expect the unexpected. CL

Thanks Sherry

Thanks Sherry Smiling

DOCS: In need of pain

DOCS:
In need of pain medication advice. I assume those who will reply know my situation. Quick update on current pain meds: 100 mcg fentanyl/48 hrs, endocet 5/325 x3 q4hrs. (Advil liquid gel sometimes, try not to)

It just doesn't seem to be working anymore. I don't know if it's my pain getting worse, of tolerance. Fentanyl was increased from 75 to 100 about 3 months ago. In the past, with increases I'd get some relief.

I've tried dilaudid for BTP and it didn't work. My doc mentionned methadone which scares me. Considering my age (29) and weight (down to 103lbs now) and my overall "guarded" view on meds, I'm not sure what would be effective. I'm progressing to a level where it feels that I'm not even on pain meds because I have so much pain.

Any suggestions as to what I should discuss with my doc? Thanks, CL

Hi CL, I feel badly for you

Hi CL,

I feel badly for you CL. It must be so frustrating and awful not being able to find meds to elevate some or all your pain. You are so young. You certainly have strength and courage to get through each day. Have you considered or tried acupuncture. Would that help?

It sounds like you have a great deal of pain and I wondered what you do to get through it if you meds are not working?

I hope this email finds you feeling a little better this Friday night.

CL wrote: In need of pain

CL wrote:

In need of pain medication advice..... Quick update on current pain meds: 100 mcg fentanyl/48 hrs, endocet 5/325 x3 q4hrs. (Advil liquid gel sometimes, try not to)

Sad to hear you're not doing well, CL.

One comment: You are now taking 3 Endocet six times a day. That's (3x325 mg) x 6 = 6000 mg of acetaminophen (the drug in Tylenol and Atasol) daily. The maximum daily dose of this drug is 4000 mg. Over that amount is an overdose - it can cause liver damage. If your liver then is not working properly, other drugs can accumulate to toxic levels in your system. If you need that much oxycodone, it should be given as a separate drug, without the acetaminophen.

Please forgive me for not remembering. What is causing your pain?

[/quote] Sad to hear you're

Sad to hear you're not doing well, CL.

One comment: You are now taking 3 Endocet six times a day. That's (3x325 mg) x 6 = 6000 mg of acetaminophen (the drug in Tylenol and Atasol) daily. The maximum daily dose of this drug is 4000 mg. Over that amount is an overdose - it can cause liver damage. If your liver then is not working properly, other drugs can accumulate to toxic levels in your system. If you need that much oxycodone, it should be given as a separate drug, without the acetaminophen.

Please forgive me for not remembering. What is causing your pain?

Hi Twain,
First, THANK YOU for looking and replying, I was hoping you would.
I take 12 pills per day (3900 mg). I tried the oxy IR because of that concern but it didn't work at all.... even if I did take tylenol with it (strange I know). Dilaudid was prescibed in 2mg dose, which I increased to 3mg and still no relief. So I went back to endocet.
The reason I avoid Advil is because I know the damage it can cause. I also found out, ironically that taking meds such as Advil for ex: headache, long term can actually CAUSE headaches. It also concerns me with the unexplained prolonged aPTT.

Anyhow, back to the topic, I have been diagnosed with: SLE, Fibro, CFS (I still question these diagnosis) and a bunch of other diagnosis not really related to pain, but rather clues to what I believe is the true diagnosis.

I believe for Advil the limit is 2400mg or 2600?
In the past 3 months or so I haven't been using much of it for various reasons one being increasing GI problems. (Average 600mg 3 times/month)

I've recently developped general lymphnopathy - cause yet unknown. I also have amnorhea (almost 1 yr now) In the last month I've had one HUGE and very scary chest pain episode... and one more short lived. This doesn't really have anything to do with my original question, but it does have me worried. The chest x-ray indicates pulmonary venous obstruction (if you recall I had DVT at age 19, my father had 3 strokes first one also at 19 yo and there's a strong family history of coagulation disorders)

I don't have the energy to search for info like I used to, but I do know something very bad is happening. I fear I'm running out of time - not crazy, it's just a feeling.

I have SOOOOO many ?'s I'd want to ask you, but I don't want to push my luck sort of speak. My GP is completely puzzled, as is my rheumatologist. They can't come up with reasons for lab results and many of my scary symptoms. They acknowledge something is wrong but can't figure it out.

Something else to think about.... (if you don't mind) approx 1 yr ago I was convinced addison's might be the problem. ONE test was done and then subject left alone (2 cortisol blood tests which were normal). I saw my doc last week and he thought it would be a good idea to check again (I agree). I'd like to pick your brain on differentials, instead of listing my gazzilions symptoms.... I have EVERY symptom of SLE, Addison's, Lyme, Fibro, CFS and strange lab studies that point in all sorts of directions.
I realize I'm not your patient, any guidance is appreciated - I'm not asking for a "medical opinion".

These are a few disorders I need to look into, I'm hoping you can shorten the list since there are more possibilities.
lymphoma and leukemia keep surfacing as possibilies, non hodgkins, multiple myeloma, adenoma, lymphocytic or primary hypophysitis or granulomatous hypophysitis, adrenal carcinoma, pheochromocytoma,17-hydroxylase deficiency, Waldenström macroglobulinemi, Abdominal aortic aneurysms.

Sorry:( There are just too many that may be the culprit. Do any of those strike you as highly unlikely... any chance you can narrow my research/effort? If you choose not to...please don't worry, I completely understand why you would make that choice. Thanks for all your help:)
CL

jbb wrote:Hi CL, I feel

jbb wrote:

Hi CL,
I feel badly for you CL. It must be so frustrating and awful not being able to find meds to elevate some or all your pain. You are so young. You certainly have strength and courage to get through each day. Have you considered or tried acupuncture. Would that help?
It sounds like you have a great deal of pain and I wondered what you do to get through it if you meds are not working?
I hope this email finds you feeling a little better this Friday night.

Hi jbb,
I have been thinking about accupuncture, I've tried just about everything else I can think of. My only issue with procrastination is the inability to get mobile and out of the house. It's something I really want to try. Only money to loose right? At this point, money is the least of my concerns if it will get me relief. I didn't think it could get any worse. I was wrong!

One thing I know didn't help is the stress test I had to do this week. Pig headed me, I pushed to make sure the test could be read by achieving my target heart rate. My doc had told me that if the stress test didn't show anything he would have to order thallium test, so I pushed myself hoping the stress test can be read. I don't expect good news about that test either, my rate was reached in the first stage. Nurse or tech? not sure what shocked, so I guess I failed that one too.

I just want to know what is doing this to me, how to fix it and get my life back! I just can't see myself taking this for another 2+ years.

Sorry Jbb, you always have kind words for me and all I do is babble and not ask how you are?
How are you? I haven't been able to read all the threads, you may have posted things...I'm sorry if I missed it. I will check back on this thread for your response. I hope you are doing well. ?? Take care, CL

CL, most of the conditions

CL, most of the conditions you are asking about can be ruled out with an ultrasound of the abdomen, chest x-ray, CBC, and a protein electrophoresis. SLE and CFS by themselves should not give pain. It's rare to see the pain of fibromyalgia improve without an exercise program. Elavil, Neurontin and Lyrica have helped people with this condition. Please keep us informed about your progress.

Hi Twain, I'm SHOCKED you

Hi Twain,
I'm SHOCKED you would say lupus doesn't cause pain????? Here's a VERY short list:

SLE (Lupus):
The most common symptom is joint pain, which occurs in about 90% of patients with SLE.
Most patients with SLE will develop arthritis during the course of their illness. Arthritis in SLE commonly involves swelling, pain, stiffness, and even deformity of the small joints of the hands, wrists, and feet. It is often accompanied by swelling and redness.
It can last from hours to months. It may be mild or severe. It can occur in one joint, move from one to another, or flare erratically.
Pain often occurs in the morning and improves during the day, only to return later when the patient tires. The joints most affected are fingers, wrists, elbows, knees, and ankles.
Inflammation of muscles (myositis) can cause muscle pain and weakness. Inflammation of blood vessels, (vasculitis) that supply oxygen to tissues, can cause isolated injury to a nerve, the skin, or an internal organ.

Other symptoms include:
Fatigue
Loss of appetite, nausea, and weight loss
Chest pain
Bruising
Menstrual irregularities
Thought and concentration disturbances
Personality changes
Sleep disorders, such as restless legs syndrome and sleep apnea
Dryness of the eyes and mouth
Brittle hair or hair loss

Inflammation of the lining of the lungs (pleuritis) and of the heart (pericarditis) can cause sharp chest pain. The chest pain is aggravated by coughing, deep breathing, and certain changes in body position. The heart muscle itself rarely can become inflamed (carditis). It has also been shown that young women with SLE have a significantly increased risk of heart attacks from coronary artery disease.
Involvement of the brain can cause personality changes, thought disorders (psychosis), seizures, and even coma. Damage to nerves can cause numbness, tingling, and weakness of the involved body parts or extremities. Brain involvement is called cerebritis.

FIBRO:
Increased sensitivity to pain is the main symptom of fibromyalgia, fibromyalgia syndrome and other types of chronic pain diseases form a family of overlapping syndromes. Therefore, even though the most common symptoms are pain and fatigue in muscles and tendons, often it is seen that those suffering from fibromyalgia will have other associated conditions and symptoms.

SOME symptoms of fibro:
Widespread Pain, Morning Stiffness, Fatigue, Vision Problems, Nausea, Sleep Disorders, Urinary and Pelvic Problems, Weight Gain, Dizziness,Chronic Headaches, Cold Symptoms ,Temperomandibular Joint Dysfunction Syndrome, Multiple Chemical Sensitivity Syndromes,
"Fibrofog": Cognitive or Memory Impairment, Skin Complaints, Chest Symptoms, Anxiety, Depression, Dysmenorrhea, Myofascial Pain Syndrome,
Muscle Twitches and Weakness, Memory Loss

I want to elaborate

I want to elaborate regarding exercise with fibromyalgia. Doctors are finally realizing that patient MUST only do "gentle", low impact exercise and NOT vigourous exercise as once believed. Strenuous exercise will only make the condition worse rather than better. Things such as swimming and yoga are usually recommended, not "go shovel snow" as I was told to do by an uninformed doctor a few years ago.

Aggravating factors:
*Overexertion = you are in for quite a symptom flareup.

Many fibromyalgia sufferers report an increase in their pain and suffering after exercise or other forms of physical activity. In particular, overexertion tends to increase the severity of muscle pain and fatigue. Overexertion may cause an increase in substance P, which may be responsible for causing pain in fibromaylgia patients.

*Stress plays a big role in triggering fibromyalgia symptoms. Episodes of emotional stress and anxiety can bring on muscle pain and headaches, or even cause anxiety attacks. Even external stressors, such as loud noises or bright lights, can trigger these fibromyalgia symptoms.

*Weather changes can be even worse for fibromyagia sufferers, triggering painful symptoms and worsening headaches, muscle aches, and depression.

Last.... Thank you Twain for

Last.... Thank you Twain for taking the time to respond. CL

CL wrote:Hi Twain, I'm

CL wrote:

Hi Twain,
I'm SHOCKED you would say lupus doesn't cause pain?????

Of course, you're right. The arthritis and pleuritis of SLE causes pain which is responsive to anti-inflammatories +/- steroids. What I was referring to was your chronic, unremitting pain that was unresponsive to all medications. While I was out running I realized that I had not made that clear and was going to edit my comments, but you beat me to it.

I have a neuropathic pain

I have a neuropathic pain problem related to hyperalgesia associated with fibromyalgia precipitated by hypermobility syndrome. Even when warned beforehand doctors have been startled to find me waking up from anaesthesia because of this! I did enjoy laughing inside as I was being made unconscious again. Doctors really should listen to patients!

Without knowing your diagnosis and as I am not a doctor the only thing I can suggest is to visit a medical library and read/photocopy journal articles and abstracts, search medline and the internet. Take these with you when you go to the doctor and ask them what they think of them - thus getting them to help you and not feel threatened. You may also be able to get books from med libraries if requested at your local library. Or buy them if they make sense to you. Your local library may even have books that may help you in non-fiction section.

Jay Goldstein MD in "Betrayal by the Brain" mentions drugs like Gabapentin, nimoptiline (?) eye drops. He is both a psychiatrist and a neurologist and definitely believes in neuropathic pain as a biochemical not psychological problem. Incidentally it may be wise to stay away from psychologists because of this,their ignorance and arrogance could add to your problems. As a Professor of Veterinary Science said to me diagnosing someone as 'neurotic' is the last resort of the diagnostically desperate' She also knew straight off about hypermobility syndrome as it is not uncommon in racehorses! I cannot get a vet to treat me though for some reason though I know I would actually get help if I did!. Seriously. Dr Goldsteins book is not the easiest book to read even though I have a BSc in Microbiology and Psychology and have studied physiology and biochemistry. Having constant migraines didn't help.

My experience with primary care doctors has been that you are better off diagnosing and treating yourself if you have fibromyalgia or hypermobility syndrome and getting referrals to rheumatologists. Alternatively try to find ones that have a 'special interest' in say musculoskeletal problems and whatever your diagnosis is, or somehow get a referral to a specialist or pay extra and go to one without seeing a primary care doctor. A neurologist may be able to help you. Try to find good ones using rateMD or asking friends, members of support groups etc in your area. Incidentally three times now - twice with primary care doctors with a 'special interest' had fibromyalgia themselves and were thus more informed and supportive. The Professor of Rheumatology I saw (after being diagnosed by his registrar who became very excited during a proper clinical exam testing my physical mobility limits) also confided to me some visits later that he was hypermobile himself.

Cheers and best wishes

Marilyn

As well as inappropriate

As well as inappropriate exercise, weather and stress other factors I believe are important is to make an everyday conscious effort to 'listen' to your body and use good ergonomics at home and work and insist on this. OT's and PT's may help. There may even be subsidies available to assist with providing correct equipment to enable you to work painlessly. Most likely not Social Security but Family and Community Services or similar. OT or PT would probably know.

Correct posture and movement is also important. Having done ballet I know how my body should 'feel' when my posture is correct. I believe this works as dancers have to ensure they have adequate breathing and oxygenation and energy to dance. Try to walk as though someone is pulling you up by the head. You should feel your body 'lengthening' and feel like you have grown six inches, in fact you may notice that you have to adjust desks and chairs and car seats and mirrors and be able to see things you couldn't previously! Seriously!

If you have hypermobility as well try not to overextend your joints, eg: use footstools and chairs and stepladders to avoid over-reaching. Keep things on you desk at less than arms length, etc.

SUMMARY: Causes of Fibromyalgia Pain

1. Iappropriate exercise
2. Weather - cold and humid hot weather. Make sure you keep your arms warm at night - even heating bedroom overnight in Spring,as
well as Autumn and Winter
3. Stress - note this can also cause your muscles to contract causing pain.
4. Ergonomics
5. Posture
6. Other causes such as Hypermobility Syndrome, Low 'Normal' Thyroid function, RSI, other conditions that either precipitate or can
appear concurrently. See 'Fibromyalgia & Chronic Myofascial Pain' by Dr Devin Starlanyl MD and Mary Copeland RN MA which devotes
a whole chapter to this.

CL wrote: I have been

CL wrote:

I have been thinking about accupuncture

I do acupuncture. You may want to think twice about trying it. One of the only contraindications to acupuncture is anti-coagulation. Depending on the severity of your prolonged aPTT, it may be the equivalent of being anti-coagulated.

ARGGG! THANK YOU TWAIN for

ARGGG!
THANK YOU TWAIN for remembering. I NEVER would have thought to mention that if they didn't ask. When am I going to get a break in all this? I REALLY appreciate you speaking up.

My massage therapist also told me something I never would have thought about. Very reluntant, she continues "for now" to keep me as a patient.
Because of my recent development of lyphnadopathy, she explained to me how dangerous massage can be and that under normal circumstances, she would refuse to do massage on me. If anyone wants me to elaborate as to why, ask away Smiling

Thanks again Twain for the new info and for clarifying your earlier statement. Much appreciated Smiling
CL

quote] Of course, you're

quote]
Of course, you're right. The arthritis and pleuritis of SLE causes pain which is responsive to anti-inflammatories +/- steroids. What I was referring to was your chronic, unremitting pain that was unresponsive to all medications. While I was out running I realized that I had not made that clear and was going to edit my comments, but you beat me to it.

Twain:
I was put on prednisone starting dose 50 mg, dose was increased (don't remember to what) and went nuts! Actually realized I was becoming MHA.
I demanded to be taken off. Later, I started taking plaquenil which didn't provide any relief. Not sure if you remember my posting about my skin "peeling off" to the point of blood just by washing gently with a face clothe. I took a guess that plaquenil was the culprit, stopped taking it and a few weeks later that issue resolved. I can only assume I was correct. More recently I was put back on a low dose of prednisone (10mg) which I did tolerate, but no relief. A condition of taking prednisone, the specialist wanted me to take Actonel. I always research meds prior to taken them.... I found the risk of actonel to be too high (and most common effect being PAIN) so once again, stopped taking prednisone.
I've tried SO many non-narcotic meds without relief.

I'm inclined to believe I also have some sort of malabsorption disorder (which I have no clue). I am extremelly tolerant to meds (no effect) despite having no history of use or abuse.

I'm going back to Toronto this month... I now have a lot more labs and test results to take with me, I pray that having more information now will help them get me to the right specialist and find the correct meds/treatment.

Hi Marilyn, Excellent

Hi Marilyn,

Excellent advice... I've been dealing with this progressive illness for over 2 years. I have done EXTENSIVE research and have binders full of test results. I'm well informed on a multitude of disorders etc... it's the less common more complex that I have yet to get a good understanding.

I believe a patient should be informed, and to a point do their part on being educated. In my case I feel that I've been let down/dismissed many times and have been forced into becoming a research junkie. I naturally do want to be informed, but I don't enjoy feeling obliged to "solve the medical mystery" (this is what I'm refered to by specialists).

Thank you for the well wishes Smiling
CL

Marilyn, Forgot to say, I

Marilyn,
Forgot to say, I read EVERY book by Dr Devin Starlanyl. She is EXCELLENT. As of now, the diagnosis of fibro for myself is secondary to lupus. But it appears that both lupus and FM are secondary to ?

Or..... both could be incorrect and it's something else altogether. That's what I'm hoping to get to the bottom of sooner rather than later.

Take care, CL

My sis swears the predisone

My sis swears the predisone is what killed her hubby. He was healthy except for having arthritis,and six months later,he was dead. Sad

CL wrote:quote] A condition

CL wrote:

quote]
A condition of taking prednisone, the specialist wanted me to take Actonel. I always research meds prior to taken them.... I found the risk of actonel to be too high (and most common effect being PAIN) so once again, stopped taking prednisone.

The risks of taking Actonel (with 1000-1500 mg calcium and 1000 IU of vitamin D daily) are FAR less than the risk of not taking it while on prednisone, to the point that it may been seen as malpractice these days to give a steroid without Actonel/Fosamax. Pain can happen, but I haven't seen it often - it resolves when the drug is stopped.

Hello again Twain, Given

Hello again Twain,

Given that my pain is currently at an all time high, the FIRST & most COMMON side effect listed being PAIN doesn't motivate me to add another drug to my list. Keep in mind the prednisone wasn't working (likely due to the low dose) and as mentionned earlier, I cannot tolerate high doses. It's another catch 22.

My reasoning (logical or not) is to stop both until both physicians and I are convinced the proper diagnosis is made. I guess at that point I will have to make appropriate decisions.
CL

Hi Daisy: Sorry to hear

Hi Daisy: Sorry to hear about your pain. I have arthritic pain. Not severe, so I am lucky and I take Advil for arthritis and it works for me. Just thought I would let you know.

I kind of just lucked out a

I kind of just lucked out a bit I think. I just received an e-mail from my insurance. They have started a new on-line pain management service. I'm a bit upset with someone I go to because of a comment made regarding my bite to be fake or real. Noooooo, I'm faking it. What is a fake bite? I asked and was told he knows what he is looking for. Ok, a lot of trust built there. The more I think about it, the madder I get.

Naly,ask him what it is.I

Naly,ask him what it is.I never heard of anything like that. Don't let them upset you,hang in there!!

I did doodle. That's what

I did doodle. That's what he said. I was taken back at the time. It's not that I'm really that upset. It's just that it's more of a slap in the face after all I have been through. I don't need that.

Myths and facts about

Myths and facts about painkillers, excerpt from newspaper:

Celebrity magazines all too often feature stories about overdose deaths and rehab admissions, and the Office of National Drug Control Policy is running an advertising campaign about the dangers of prescription drug abuse.
But when taken as prescribed, just how risky are drugs like OxyContin and Vicodin?
The truth might surprise you. Myths and misinformation about opioid painkillers are widespread. Here are the facts.
Myth No. 1: Toughing it out is always better than relying on painkillers.
Although Americans pride themselves on their toughness, those who refuse medications despite severe pain may be putting their health— and their jobs and relationships— at risk.
“Uncontrolled pain is associated with adverse consequences in terms of daily functioning, mood, sleep, overall quality of life, energy level, the ability to work and marital relationships,” says Russell Portenoy, chair of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York City.
Adds Dr. Richard Payne, professor of medicine and divinity at Duke University: “Newer studies actually show that persistent pain causes changes in the brain and spinal cord that begets more pain.” Some animal studies suggest that controlling pain could help prevent these problems.
“It’s clearly obvious that people whose pain is controlled effectively following surgery go home earlier, have fewer complications, get out of the hospital faster and recover better,” says Dr. Gavril Pasternak, a neurologist at Memorial Sloan-Kettering Cancer Center in New York City. “On the other hand, do I think every time a child scrapes his knee he needs an opioid? No.”
Myth No. 2: People on opioids are always impaired—and cannot drive safely or work in demanding jobs.
Studies of drivers on steady doses of opioids do not find impairment. In fact, says Portenoy, “At least one study by Finnish researchers showed that impairment on standard driving measures was more correlated with poorly controlled pain than with taking medication for it.”
“What people are concerned most about is judgment and somnolence,” says Pasternak.
“Would I recommend that someone just starting opioids drive? Of course not. But I would give the same advice to someone starting a sleeping pill. Once someone has been on the same dose for a while, they can.”
Adds Payne: “For people on a stable dose, they acclimate or develop tolerance to sedative and mental clouding effects.”
Myth No. 3: When taken as directed, opioids are more likely to kill you than aspirin, ibuprofen or naproxen.
“False. When taken as directed, opioids are safe drugs,” says Pasternak.
The vast majority of opioid-related deaths occur amongst recreational users or deliberate suicides. Deaths amongst pain patients are rare— in fact, recent research finds that even for people with advanced illnesses, use of high-dose opioids does not significantly increase risk of death.
Nearly three times as many people die from complications of correctly taking painkillers like aspirin and ibuprofen— known as non-steroidal anti-inflammatory drugs—than die from opioid overdose.
“More people die from gastro-intestinal bleeding from NSAIDs taken in correct doses than from inadvertent opioid overdose,” says Payne.
“It is true that the death rate has increased from accidental overdose related to opioids, but still the number of deaths related to accidental OD is dwarfed by the gastro-intestinal and [stroke and heart-related] complications of other analgesics,” Payne adds.
Myth No. 4: Accidental overdose is common amongst pain patients.
Most opioid overdoses do not result from medical use.
“As patients take opioids over weeks and months, they develop a tolerance to the respiratory depressive effect, which is the thing that can cause death,” says Payne.
This means that even if people forget they’ve taken their medication already and accidentally double their dose— unless they have dementia and do this rapidly and repeatedly— the risk of death is low.
Instead, the vast majority of opioid overdoses involve combinations of drugs that cause sedation— typically alcohol and sleeping pills or anti-anxiety medications like Valium or Xanax (benzodiazepines).
At least 80 percent of opioid overdoses are actually caused by such drug mixing—and while some severe pain patients need both benzodiazepines and opioids, they are prescribed together with great caution.
In many overdose deaths, use is obviously non-medical because the victims injected or snorted drugs meant to be taken orally.
Myth No. 5: Most people who get addicted to painkillers are “accidental” addicts who sought pain treatment and had no prior history of drug problems.
When a Florida newspaper covered the “OxyContin epidemic” in 2003, it later had to retract its series, in part because a man portrayed as an innocent victim of a pill-pushing doctor actually had a prior federal cocaine conviction.
Inadvertently, the paper had illustrated the real story of painkiller addiction: The vast majority of people who become addicted to prescription opioids have significant prior histories of drug problems.
Nearly 80 percent of OxyContin addicts have taken cocaine, for example, according to large national survey research. This means either that pain patients prescribed OxyContin suddenly start using cocaine—or, more plausibly, that most people who misuse opioids have a past or current drug problem.
“We published data on this; we looked at people who had Oxycontin addiction who presented for treatment—essentially, nobody had gotten addicted to Oxycontin who hadn’t previously been using opioids recreationally,” says Thomas McLellan, professor of psychiatry at the University of Pennsylvania.
More than three-fourths of the patients who had misused OxyContin in this national sample of addicts in treatment had never received a prescription for it.
Even having chronic medical problems—which includes chronic pain—did not increase risk for OxyContin addiction.
If you do not have a personal or family history of addiction—especially if you have never suffered psychiatric problems like depression, schizophrenia or bipolar disorder, and especially if you are middle-aged or older—your risk for developing addiction during pain treatment is “vanishingly low,” says Portenoy.
Myth No. 6: Addiction is inevitable if opioids are taken long-term or in high doses—and the risk of addiction is very high for short term use.
This myth stems from confusion about the nature of addiction. Many people believe that addiction is simply needing a substance to function—but if this were the case, everyone would have to be considered addicted to food, air and water. “To the average person, addiction is going cold turkey— they view addiction as physical dependence,” says Pasternak.
In fact, psychiatry defines addiction as compulsive use of a substance despite negative consequences—and it is this craving, impairment and loss of control that people fear. However, while most people who take opioids for long enough will develop physical dependence and suffer withdrawal if the drugs are stopped abruptly, addiction in pain patients is rare.
“The reality is that addiction appears to be distinctly uncommon in patients without a prior history of addiction or a family history of addiction,” Portenoy says. In his own research on more than 200 patients treated with OxyContin for chronic pain over three years, no new cases of addiction were reported.
“Over 30 years, I’ve seen a few thousand patients with cancer and sickle cell [disease] and other [conditions], and less than five that I’m aware of became addicted,” Payne says.
Myth No. 7: Opioid withdrawal is extremely debilitating and potentially deadly.
We’ve all seen the movies: the desperate addict shivering, shaking and vomiting from heroin withdrawal, pleading for relief. But while opioid withdrawal can be unpleasant, it doesn’t have to be.
“You can probably take 80 percent of people off opioids by decreasing the dose 50 percent every other day and they will be asymptomatic,” Pasternak says.
In fact, many patients go through withdrawal without even realizing that their “flu symptoms” are linked to the fact that they decided to stop their pain medication suddenly.
The severity of withdrawal also appears to have a genetic component—some people are susceptible to miserable symptoms, while others suffer few or even no effects. Portenoy describes a female patient on a very high dose of morphine whose prescription ran out before her appointment. Rather than asking for a renewal, “She waited to come and see me,” he says, “and she had no withdrawal.”
While withdrawal from alcohol or barbiturates is potentially fatal if not properly managed, even the worst opioid withdrawal is unlikely to be deadly. However, withdrawal can be risky if the patient is still in pain or on other drugs. “Managed incorrectly and in concert with other drugs, it can be very dangerous,” says McLellan.
Pasternak says the main reason people suffer withdrawal has “nothing to do with medicine, but rather to societal pressures that have led to laws that the Drug Enforcement Agency is required to enforce.”
For example, it is illegal for a doctor to prescribe opioids for addiction outside of certain settings, so some physicians are afraid to taper patients’ doses for fear of being arrested for having “maintained” an addict. Similarly, doctors may drop patients suddenly if they suspect addiction, without tapering their medications.
Worst of all, many physicians won’t prescribe opioids at all—even when they are clearly warranted—because they fear dealing with addiction and law enforcement issues. The unfortunate result: Patients in pain are left to suffer.

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