Fibro and Lupus

[Bara]

Good grief it seems that fibro is just as nasty as lupus and maybe more so because it is so hard to treat! I was diagnosed with fibro last March (I've had lupus for 14 years) after getting so sore to the touch in so many places that I was at wits end. I herniated some discs in my neck over a year ago which ruined my ability to sleep because of the pain. The doctor said that spinal injuries or any pain factor that disrupts the sleep cycle can trigger fibromyalgia. From what I've read on it, it seems that Tylenol, hot showers, and maybe Flexerill to relax the muscles is about all that can be done for the pain. When I saw my rheumatologist at the University of Florida that I've been seeing for years last month he told that they were doing some research into fibro there and asked if I would join the study. Of course I said yes. (Let me explain that I live in one city, Jacksonville, and have had to get a rheumatologist in town because of the severity of my problems at time, but I also go to the University of Fl periodically to stay in touch with the latest research). Anyway, the only tests that I did at the U of Fl were tests on a computer which involved memory and various skills like the tests that we used to take in school to rate our IQ (let me say that there was one with about 10 letters matched to bizarre symbols which somehow I was to instantly memorize and be able to tell if the next array of numbers/symbols were correct. Ha! I am sure that I rated as 'close to brain dead'. On my next visit I am supposed to do tests involving pain - they attach probes to you and see how much heat or electric shock you can take. Mercy! I am still on Pred but I am supposed to be tappering off. When I go to 10mg I start having nasty joint pain in my shoulders, knees, fingers, toes, chest wall etc. I don't know if this is lupus or fibro giving me such grief. I am wondering if there is any drug that can really help the fibro if that is what it is. I have been told that Pred does not help with fibro, but it does seem to ease the pain that I am having everywhere except for my fingers. I wonder if maybe fibro is just another nasty tennacle of lupus. Like all of you I just want my life back. I am willing to take meds, but just what is there that will work for both lupus and fibro? Also, do any of you start having stomach problems along with the joint pain? I feel that when my tummy gets messed up that it is part of the disease, too, because Pred seems to help it ease up. I'd appreciate any comments about meds for fibro and lupus other than Pred and if they have helped anyone. I see my intown rhemy in late August. My other rhemy at the U of Fl has left me in limbo for now. I am thinking that I will be put on CellCept. If it trashes the bowels I am dreading how my stomach will do.

[jude mack]

Hi Bara

I can understand the herniated discs very well and the fibro, I take Gabapentin for my herniated
disc pain, and it is supposed to help fibro as well. I did those memory tests many years ago, at that
time they said I was non-functional, I guess the brain came back somewhat. LOL. There are
many drugs out there for fibro, anti depressants, anti sezure meds and sleep aids. I sure you will
get tons of suggestions for your fibro. I hope you feel better soon. Have a great day.

Take Care
Jude style_emoticons/<#EMO_DIR#>/flowers.gif

[debralee]

Hello Bara, style_emoticons/<#EMO_DIR#>/hugbetter.gif

I am sorry to hear that ouy are having so mush truoble. Could the test ouiy were refering to be an EMG? I know that they use probes.......but I don't think they use any heat in that test unless it has changed.

Some of the medications I have taken for my fibro. are: neurontin, cymbalta, skelexan, amitriptyline, vicodin and ultram. Ouy may want to discuss some of these options with ouyr doctor.

I hope ouy start to feel better soon.

God Bless,
Deb

[raggedyann1]

Bara,

I have fibromyalgia in addition to my lupus, scleroderma and RA. (RA not active right now). Flexeril didn't work too well for me but soma is the best muscle relaxer for me. Flexeril is the standard muscle relaxer used for fibro.
However the major medication that keeps my fibro pain below my radar is Gabapentin the generic of Neurontin. It is an anti-seizure medication that works well for several kinds of pain. There is a newer one on the market called Lyrica that several people have said works well but my insurance wouldn't pay for it since the gabapentin works so well. The other type of medication that is standard protocol for fibro is trycyclic anti-depressants. The 2 well known are elavil/amitryptaline and pamelor/nortryptaline. There is also a new anti-d on the market called cymbalta that is being used for fibro. This type of anti-depressants helps us achieve the deep stages of sleep and throught that mechanism helps lower pain levels.

I am sorry your doctors haven't mentioned these medications to you.
Here is a link to a Fibromyalgia site. You will find additional information about fibromyalgia there. http://www.fmaware.org/

Opiate narcotics are also used for severe fibro pain when the other meds are not getting it under control. My experience was that the opiates didn't last the full time they are supposed to. I have other pain which requires strong opiates but my fibromyalgia will still flare up and not be controlled with them.


It is very difficult to taper off of prednisone when you have fibromyalgia it tends to make the fibro flare up. Also once you reach the 10mg mark it gets important to taper very slowly. I had to taper in 1/2 mg increments. It usually takes up to 2 weeks for the fibro to quiet back down. When I finally got all the way off of prednisone my rheumy told me I could take his picture off of my dart board. style_emoticons/<#EMO_DIR#>/biggrin.gif At times I gave myself a break and tapered 1/2mg every 3-4 weeks so I could have a break from the fibro pain.

take care,
Karen