I finally got into pain mgmt, but I got me no where. the doctor seemed more convinced my pain is neuropathic or fibro. I KNOW it isn't. I have neuropathic pain and it is completely different, and is under control enough with amtriptoline. I went with an open mind but felt like she was so closed. She was going to give me Cymbalta, which my insurance wouldn't cover. I refused Lyrica because I know that is not used for dislocation pain, that is meant for neuropathic pain. She said lets try gabapentin. I figured I got to meet her half way - had a huge allergic reaction, which apparently crosses out Lyrica because it is pregabapentin and my insurance refused to cover it because it is not the marketed use. The same was with Cymbalta, and she wanted me to lie and say 'I'm depressed' I refused to. She also wanted me to get my refills throu my PCP which I found werid. I have a hard time getting percocets and in serve pain that only gets worst when I can't control it. Why wouldn't she listen when I stated I wanted to continue the percocets but add Oxycotin to help in the long run. Neuropathic pain is completely different than my pain. Have any of you run into this issue?

Does this Dr understand EDS at all (did she say she Knew EDS etc)?

I am guessing what you are after is a long acting pain med (i.e. something you tke every 12 hrs) plus a short acting pain med for breakthrough pain (i.e. somehing that works for 4-6 hrs)???

Taking something for neuropathic pain is probably helpful too, because dislocations etc can put stress/ stretch/ damage/ trap the nerves as well adding neuropathic pain to the pain of your joints and dislocations (our nerves are NOT made to stretch and a stretched nerve can be a serious injury and if it also gets trapped/ impinged by the joint this is an evenmore serious injury), this underlying neuropathic pain could be hidden under the pain from the joint/ dislocation - this is just a thought and if you are already taking something that is working then you are already working on that form of pain...

I can't see why she would be ONLY fixating on your neuropathic pain, that seems a bit closed minded to me (there are SO MANY other forms of pain which you could have in addition to Neuropathic pain, what about Nocioceptive (Tissue) Pain which includes things like inflammatory pain, bone pain, joint pain, muscle pain, acute pain from a dislocation, or Chronic Pain, Mechanical Pain (from tears to the ligaments and things (including micro tears)), Somatic Pain (Pain from ligaments, tendons, bones and blood vessels which have been assulted by a dislocation or just the added ROM you bodys joints have)...

EDS is a know very painful condition (by those who really KNOW EDS) and can need large doses of pain medications (including Narccotic medicaitons) to help control that pain...

Sorry I can't be of much help to you but like you I find it strange that she ONLY focused on Neuropathic pain and not any of the other kinds which you might have...

Good Luck with getting the pain management that you need and deserve...

I found out I am serverly allergic to gabapentin, I was okay with the gabapentin I figured it would help my shoulder a TON. But I was rather fustrated when she acted like that was the only pain I had. I kept having to remind her that dislocations are actuely painful, and insisted that the gabapentin would help it. She is now insisting that I take the Cymbalta and still won't give me Oxycotin... I am trying to find a new one.

Fawn...

Oxycontin is only ONE of many pain meds which could be helpful...

You are more likely better with somethign that is long acting (i.e. taken every 12 hrs) than something short acting (i.e. has to be taken every 4-6 hrs)...

Don't ask for a specific medication (as many docotrs will see this as possible drug seeking), you are better off saying that you need someting for the actual pain, acute and chronic,

Unless asked if you have tried anything before which has worked, the you could say something like you have tried XYZ in the past when in the ER and it was helpful and you didn't have any side effects etc, but unless asked I really don't know if I would suggest a medication...

You are right you need to find someone else who is willing to look at all of the pain you have, not just the nerve etc pain...

It may be that this Dr is just trying you on all of the Non- Narcotic meds before trying a more possibly harmful medication such as narcotics but for her to be so dismissive of your pain is a bit much, and for her to all but demand that it is nerve pain only is very wrong, becasue you have so many different kinds of pain...

I would ask her if she was working in an ER etc and someone had come in becasue they dislocated a shoulder/ hip/ elbow (whatever) in an accident (car/ sport/ fall etc) what would she give them for the pain??? Would it be Gabapentic and Cymbalta?? I think Not, and if she would treat there pain for an acute dislocation due to an accident then why does she think your pain is any less just because it is caused by a genetic condition??? The pain is the same... In fact if anything yours could be more becasue you have a lot more of them, sure the actual ligamentous damage may be less becasue your ligaments are more stretchy etc, but the actual pain is the same...

Antidepressants (like Cymbalta) can be helpful in treating some chronic pain, so it is worth trying (it is NOT just for depression, it does also work for chronic pain)...

Doctors now and days really don't care about us the people who are suffern at all . i have been to i can't tell you how many docotrs and they think we are out just to get pill's. I mean if they would just talk the time to listen to us because we know what helps and stuff .

good luck hun

OK..When I found out my PCP basically had labeled me a drug seeker, it pissed me off...big time. That's when I went on a rampage to find out information on EDS.. I had to write a letter to my doc..a good bye letter and a 23 page document from Mayo Clinic...It says EDS can be extremely painful and is often under ..how do I say this..docs often under prescribe pain meds for EDS...My PCP actually came around..by that time I had gotten my psychotherapist to call rheumatologists in the next town over..we don't have any here... until she found one who treated EDS and knew what it was. She said my story made more sense knowing I was in non stop pain.... She also had to help me find a real Psychiatrist....and he's great................ I can thank God I am being taken seriously and helped now.

But, I really had to go on a real rampage...My family got sick of me talking about EDS and blaming a lot of my problems on it....but it fit!!! I was in a big way happy I wasn't as crazy as I thought the doctors thought I was...

Well, that's my story... Good luck. If doctors don't recognize how painful EDS is, they don't know about EDS. It is a very odd condition to have and unfortunately, most people just associate it with "Pretzle Man" at the circus.

I'm going to get my great Platform crutch and take a walk...When I get on this site and try to help others, it is such an emotional drain...I do want everyone to know they can get help...but don't wait untl you're 55 to start....AND you might have to get strong in educating your doctor... Mary

[OT]

Scarlett...

I too am allergic to Tramadol, and others they like to use like Oxycodone as well...

You are NOT alone in not being able to use Tramadol and it makes it hard when they say in the ER etc - we will get you some Tramadol and you say I am allergic then sometimes they tend to look at you like a drug seeker - to stop this I had it put on my Medic Alert (the kind your Dr fills out) to PROVE I am allergic to Tramadol and Oxycodone...

[/OT]

I was put on Tramadol it did nothing and me hallicnate, didn't appericate that. My insurance, HMO sent out a think to all my doctors tellng them to not give me anymore narcotics because i was a drug seeker, I can only get them if something is 'really' wrong - I go to pain mgmt (an other one) with my doctor writing a long letter about EDS and me with the binder of my life. I hope this works out, it about a month away. It's so fustrating I want to function as much as possible. I have turned down surgeries, I have yes turned down narcotics when I do have them. I don't get it - I feel so degraded and demoralized. Sigh I guess all I can do is educate and advocate for myself