Fibromyalgia

[GingerA]

Please excuse any mistakes. I am having a very bad morning.

I was just wondering who had been diagnosis of fibromyalgia. I was diagnosed with it a few weeks ago and given samples of cymbalta along with my POTS treatments. Honestly it was the best I have felt in years. I did not realize that I was in as much pain as I was until I didn't have the pain any more. the problem is now my insurance won't pay for the medicine and the doc tried something else. This morning (Saturday) I woke up in intense pain! and of course everybody is closed. I left a message with the serve but I haven't heard anything back yet.

My question is how different is fibromyalgia and POTS? and what do you do for flair ups?

I had a nerve test that was negative. Does that mean I really don't have fibromyalgia? HELP! I was getting used to feeling better.

[rubytuesday]

I was diagnosed with fibromyalgia in 1998 (but physical therapist suscpected it in early 1990s--even gave me newspaper article about). I was diagnosed with POTS last spring. Having both--I can definitely seperate the fibromyalgia from the dysautonomia, albeit there are common triggers for me--high humidity, intolerance to cold, weather changes, barometric changes, poor sleep, the constant pain. The pain I feel from the fibro is different than symptoms I have with dysautonomia (profuse sudden sweating, nose running like a faucet, vision dimming, ears ringing, extreme weakness to point of legs collapsing beneath me). I had chronic fatigue with my fibro (also hypersomnia/narcolepsy) so is hard to say the fatigue is from the dysautonomia but there was just a post regarding chronic pain (in fibro) and link to ANS (I think by firewatcher). I had cognitive issues 'fibro fog' before my diagnosis with POTS. I'd tried boat load of stuff but either couldn't tolerate or did not like feeling like zombie or sleeping life away. Cymbalta made me sleep all the time and Lyrica did nothing for me. Everyone's body responds differently. I have a lot of medicine allergies and sensitivities. I'm glad you are getting treatment--exercise is a must with fibro and can be challenging with POTS. I use recumbent stationary bike (per recommendation of cardiac specialist) since we have no pools locally that are heated conducively to needs of those with arthritis/fibromyalgia. No hot tubs. No hot showers (that used to help ease the pain--but are no-no's with my orthostatic hypotension and syncope). DH had to stop his Cymbalta that really helped his depression (and pain), due to rising copays making it out of reach. You might check the manufacturers website (all have patient assistance programs, but varying guidelines) to see if you qualify for their program. DH had his PCP switch him to generic Rx that serves same purpose but am sure your physician should know of other interchangable drugs to try. Best wishes.

My fibromyalgia was diagnosed by rheume who did complete exam, ordered sleep studies, took thorough history, and checked my body for trigger points. I know of no 'nerve test' or blood test that proves fibromyalgia. It is a complex of symptoms that is categorized as a 'syndrome'. Believe it or not there are still some 'doctors' who do not recognize/acknowledge it. A nerve test (EMG?) may have been done to assess for problem with nerve conduction from some anatomical problem.

Also rheume told me proprioception problems stemmed from Ehlers-Danlos III that was added (3 years before POTS diagnosis).

[issie]

Hope you feel better soon.

[Trach]

Dear All above,

I have so many questions too. My PCP that I used for years sold his practice. I just cannot find the "right" doctor to replace him. So I have just been using my neurologist for now, but am trying to find a good internist in Houston. Does anyone have recommendations?

My youngest daughter's neurologist understands my medical history better than my own doctor. Her doctor believes I have fibromyalgia. There are days when I wake up and I feel like I have the flu without the respiratory problems - my entire body hurts. Then there are days when only my joints hurt.

Exercising on the rowing machine has helped somewhat except pain in my leg/left hip has come back with a vengeance. My left hip has always "clicked" out of joint. My left leg (hard to describe pain - it is not muscular but more in the tissue of my leg) feet, joints in hands frequently hurt ( exercise makes the pain much worse). So, I am going to get tested for EDS in May,

Like Ginger, my EMG's were negative. I thought my symptoms were POTS related until reading more posts on DINET. I am really confused as to the difference between joint/body pain caused by POTS vs. Fibromyalgia and/or CFS. I was probably born with POTS - I always thought it was perfectly normal to stand up and see stars!

I take Effexor and Topomax for migraines. I tried Cymbalta and Lyrica - no luck. I had bad reactions to beta blockers (bp plummeted) midodrine and florinef gave me horrible migraines.

[stacdliw]

I, too, was diagnosed with fibro and chronic fatigue 16 years ago. I presently take Cymbalta twice daily and it has definitely helped with the pain. When my insurance was Express Scripts, they first tried to deny coverage of Cymbalta; however, because Cymbalta is approved for fibro pain and there is no generic for the Cymbalta, they begrudingly approved it.

As to what I have found helpful during flare-ups: Tramadol is helpful and cheap. I also bought a Thermaphore Maxheat heating pad that has velcro which allows you to strap it around your leg-- it feels wonderful on an aching leg. I really need to get another one so I can have two going at the same time.

I see a Pain Specialist for a neuropathy related upper gastric pain disorder. He also treats me and others for fibro. He prescribed Voltraten Gel, which is a topical ointment to be applied to my aching muscles. It really does help. Once again, Express Scripts denied coverage, but I paid out-of -pocket and it was like $37-- well worth the relief I got. Luckily, I now have BCBS insurace and they cover all my prescriptions, no questions asked.

[GingerA]

A nerve test (EMG?) may have been done to assess for problem with nerve conduction from some anatomical problem.

That was the test I had but the results were not explained other than to say that the test was normal so I didn't understand if nerve damage was apparent with fibromyalgia or if the absence of damage suggest that I had it.

[goldicedance1]

I too have been diagnosed with fibromyalgia. The doctors believe there is alot of overlap with POTS, Before I moved to Florida, I was on, among other things, a regimen of Lyrica as well as Zoloft to help with POTS, included with my POTS cycle was also migraines. When I was referred to rheumatologist at the Mayo in Jacksoville, he indicated that he preferred for his POTS&Fibro patients Topax and Pristiq. Those 2 drugs seem to work the same as Lyrica and Zoloft for me. PLUS, I lost quite a bit of weight triggered by Lyrica.

[GingerA]

Goldicedance,

Can you tell the difference in the symptoms of the POTS and the fibro? Rubytuesday says she can but I have been searching for answers for so long that I don't know what is what!

[maryfw]

There is no test for Fibro. Only tests to rule out other things. They go by our symptoms and a physical exam that tests for trigger/tender points. I have fibro &ncs too. I take a pain pill and it helps me to function. I take a beta blocker for Ncs but have days where it does not do enough.

[peregrine]

I've got fibromyalgia as well - tender points were my main diagnosis, since most of my pain is joint pain due to hypermobility syndrome. I was on Cymbalta (currently weaning off), which appears to have been my dysautonomia trigger (going off of it didn't make the dysautonomia stuff go away). It was really helpful - daily pain went from a 4-6/10 to a 1-2/10, which was great! I'm weaning off of it again because it makes my jaws so tight that I grind my teeth and then can't open my jaws fully in the morning; they haven't fully opened since September of 2011. Switching to Lyrica and noticing a little more pain than on the Cymbalta, but I'm still tapering on the Lyrica right now. Conveniently our decision to switch to Lyrica lines up with my autonomic testing later this month, since they said I can be on Lyrica but not Cymbalta. I can tell the symptoms apart quite easily, since I've had the pain/brain fog/fatigue of fibro/hypermobility since age 15 and the dysautonomia since age 25.