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FM Specialist, What To Expect?
3 Replies
SerenityNow - February 28

I am currently waiting to hear back from an FM specialist at a pain clinic about getting an appt. I don't know what to expect. Could y'all help me out, please? This is scary for me. Every time I go to a new doc it just seems to make things worse. I've had 2 new docs in the last few months. Both diagnosed me with FM, then said my pain should be controlled with Aleve, Cymbalta and some sleep meds along with yoga. This approach isn't working. I just feel like if I'm told that again I'm either going to lose my mind or hurt someone.

I know every doc is different, but any insight on what to expect, or if I'm wasting my time, would be greatly appreciated. Thank you.

 

January - March 1

Aleve? This is an NSAID, and they don't work on fibro pain. I tried it years ago, and it did absolutely nothing for me.

Cymbalta? Some people get good relief from it. I had a bad time. It didn't help my pain and it made me sick. It can have nasty side effects. If you are taking it, have your liver function and your blood sugar checked regularly.

Sleep meds and yoga sound appropriate. But you say the approach isn't working. Not clear if you're having trouble with pain or exhaustion or sleep - or everything?

The best thing you can do is educate yourself about fibro. This is a good site with a lot of different views. You need to google the meds and read up on side effects and interactions. Keeping a diary of symptoms is good - then you can go over it with your doctor. Make sure to continue the diary if you change meds - that way you'll know if you're being helped or not. If you take antidepressants, have someone else observe you for mood changes like increased depression, anxiety or hostility. Sometimes these things creep up on you and you don't realize it.

I've been really frustrated too, lots of doctors don't know about fibro, it's complicated and different in everyone - they don't have time to learn so you have to. Some of them just go by what the drug reps are telling them to prescribe. Hopefully you can find a good specialist in your area who will take the time to listen to you and work with you, because everybody on here seems to have a different story and different reactions to treatments.

For me, the thing that helped the most was a gluten free diet. It helped with pain and with depression. I got off the usual fibro drugs which in my opinion really changed my thinking and personality. I stick to low doses of very old drugs.

Good luck to you, hope you feel better soon!

 

Fantod - March 1

SerenityNow - Welcome! I totally agree with January - Alleve is NOT appropriate for treating FMS. OTC remedies like Alleve, Tylenol etc do not address the type of pain associated with Fibromyalgia (FMS). If you have an underlying condition like osteoarthitis, Alleve would be appropriate.

The three primary medications used to treat itare Cymbalata, Lyrica or Savella. It takes quite a bit of time and tinkering to find the right combination and doseage for each FMS patient. There is no set regimen as our symptoms vary widely. And, the longer a chronic pain cycle continues, the harder it becomes to manage or stop.

Yoga is a good suggestion for FMS. Tai Chi or water aerobics for arthitics are also excellent choices. Some degree of exercise is needed with FMS even if it is a short daily walk.

The reason that you are so sore is lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep to repair themselves from the days activities. No deep sleep means higher levels of pain. Hence the need for sleep medication. Even using it, you will have nights where sleep is simply not an option. If you can say one thing about FMS it is that FMS is extremely variable. Nothing that you can do to treat it is ever going to perfect all of the time.

I know that all of this is frustrating for you. We've all been in your shoes to some degree or another. You are not alone.

Take some time to read all of the information in the blue boxes on the lefthand side of this page. There is a lot of good, basic information on this site. We are also blessed with an active, caring group of members who are here to help, support and just listen. Take care.

 

SerenityNow - March 2

Thank you both for responding.

Oh, believe me, I know that NSAIDS don't work, lol. I've read about it...and am living it. phht.

Cymbalta has helped me before. I was taken off of it and tried Savella. Savella threw me into serotonin syndrome (I believe because of other meds I was on at the time too). It did nothing for my pain. Docs have said I would most likely do poorly on Lyrica since I'm med sensitive, too many side effects.

When I was on Cymbalta before I was on over double the dose I'm at now. It's taken 4 months to get me to the dose I take now. They are moving it at a molasses in the dead of winter's pace and I understand why. Only problem is it's not helping at this dosage. grrr.

And, yes, all I want to do is sleep. It doesn't matter how much sleep I get, or what I take to sleep. It's very rare that I don't have a day where I'm just exhausted...from doing nothing.

My problems aren't just with sleep and exhaustion but with pain and the fibro fog also.

As for educating myself, I will do more. I read about Fibro every day that I am up to it. The last doc I saw got angry with me because I knew more about Fibro and it's treatments than he did and he told me, "You are too well educated for a person who just walked in off the street." What exactly that means, I dunno, lol. I don't really care either. I'm not going to apologize for being able to have a knowledgeable conversation about my health and what may make it better.

I will look into a gluten free diet and do research on that...

Thank you both for your time and concern. I hope you're well today.

 

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