Fibromyalgia Support Group

so sorry you are having a problem. i don't have anything to offer about dr. but know that heating pads and hot baths help. i know you probably need more than that, but did want you to know that i'll be wishing the best for you and hopefully you'll find some help soon. are there pain clinics in your area? or rheumatologist? might be worth a try if you haven't already. gentle hugs,noreen

Hi,
I am so sorry that I can't help, but I had similar problems. All I can say is... please don't give up.. it took me 2 years to get a diagnosis and then I got f*** all help after I never responded to the endep treatment. It took me another 2 years to find a fibro friendly doctor who will prescribe me tramadol and valium. But before that I was "getting by" on up to 16 over the counter painkillers at a time. Keep up hope.. a sympathetic doctor WILL come along.

Gentle hugs
Coralie

I stumbled across a local group of ladies that meet up and discuss their fibro. One of them keeps a database of doctors that treat fibro. Maybe she has a suggestion for your area. her email is kindness@fibrobetsy.com Her name is Betsy Jacobson. Oh, and the website is www.meetup.com you may want to check it out and see if there are any groups that meet in your area. Good luck!

Hey Sweetie.

I stumble upon this a couple of weeks ago. I bookmarked the page to my local area....but I can't remember how to find the 'doctor finder' on this site again. Otherwise I would have done that for you.

But this is through the National Fibro association. They list "good fibro docs" in your area.

But I'm going to add this in. It took me a year to figure this out for myself....so please don't be upset by me posing these questions to you.

Have you asked your doctor as to "why" they won't prescribe pain meds?
For me to think of taking a pain med on top of Lyrica would scare me. For one, Lyrica was a horrible experience. And I'd hate to be numb to any side effects it may be giving you...some are life threatening.

And I was convinced for a year that I needed some sort of pain med. Now I'm starting to believe differently. Yes, I have my super bad days. Where I wish I had something. But for me, (and this is my personal choice), I think it's best now to just reserve the pain meds for the nasties. Not for an every day 'shoot me now" sort of pain. I've found that just simply resting restore me back to a functioning person again. And that is my daily goal....to be able to function and enjoy what I have going on in my life.

Oh, here is the link....

http://www.fmaware.org/site/News2?...

Thanks guys! I just remembered my doctor told me there's a local fibromyalgia support group, so that's a great idea!

Wonderbaby, I started the Lyrica last night, and I am so loopy I'm having trouble walking! I can forget about trying to drive anywhere. My doctor told me it's a "cousin" of Neurontin, which I took years ago for bipolar disorder. It had me walking into walls, my balance was so off. So we will see if I can tolerate it after a couple of weeks! Lyrica is my last hope.

I do want the pain meds just to use on days when I must function and am not able to. No need to get doped up on the "good" days! That's a relative word, isn't it?

Yah, that drunk effect for the lyrica is supposed to be a normal side effect. I hope it works for you hun.

And your doc advising it' a cousin to Lyrica was sugar coating it. It is used for nerve pain. That' the only similarity. When I asked my doc "shouldn't I have a nerve test done first to see if this is actually what I should take?" And his answer to me was "Oh Pish Posh, you don't need a nerve test".
3 days later when I took my first pill, I experienced Dystonia for the first time in my life. I was making lunch for us and about to sit down....I felt my arms curl up to my body...I could barely spit out to my hubby...."watch me". And I started walking into the walls. My hubby put me on the bed and I couldn't move anything but my eyes for about 3 hours. I'll take a full blown panic attack of that stuff any day!!!

I really wish doctors would do "nerve tests" prior to putting patients on this stuff. Turns out I was suffering from MUSCLE pain...go figure!

Get a good Pain Clinic to help you if you can got me much better! xxoo

Maybe he had a bad experience or something. The way I found a new doc: I emailed everyone I knew, told them what I was looking for, and solicited their responses. I double checked my insurance co. to make sure he was in my network. I got some really good recommendations.

Next week when I see my MD I will ask him about possibly helpful MD's in your area....he has had good ideas in the past but I should mention he has not one good thing to say about lyrica...and neither do I, I tried it once....it was awful...for now, I am a neurofeedback patient and I take hydrocodone as well.....to me, the neurofeedback idea sounded ridiculous at first but I decided to humor the MD since he was also prescribing my hydrocodone......lately during neurofeedback sessions I notice the pain begins to decrease during the session...and the results last for awhile....I am needing less and less hydrocodone as time goes on
I had great success with tramadol for about a year and then it just stopped working so I know it is important to find an MD who will really hang in there with you.
Even pharmacists used to reduce me to tears when I showed up with my painkiller Rx's and was subjected to looks and comments and even refusals to fill the RX.......but my MD was very supportive.
I feel that as fibro sufferers we have enough to deal with.....compassionate, educated MDs are a must. After I tried the Lyrica,I fell down the stairs and the prescribing MD encouraged me to take it for 2 more weeks....'just try'......he was at NYU.....great reputation but I just kept looking and found a helpful MD
Again, I will check this out for you, if it will help.

I also struggle. I did not know if the balance issue is Fibro, or is it neurontin? I am on a small dose 300mg at night, but that is not going to help muscle pain... Dont they understand?

But when you have a bad doc, what does he write in your chart when you leave him/her? Because when you go to a new doc they all want to see your records... and the doctor can label you.