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View Full Version : Just diagnosed with Fibro, 3 years w/ Lupus



SonyaLA
11-27-2007, 09:29 PM
After 3 years learing about Lupus, dealing with flares, meds and issues with trying to work. I've got my Lupus under control (says the monthly blood tests), However, it's been a hard summer, and I still feel like crap.

My rheumy then tells me I have fibromyalgia. She said she did not talk with me about it until now because she wanted to focus on the lupus.

" the lupus can kill you, the fibro will just make you miserable"

She's a great doc, so I trust her. I've studied fibro and I'm surprised at how perfectly I fit the symptoms. Trouble is, I'm getting confused on what's because of the fibro, and what is a lupus issue.

Anyone else out there with multiple diagnoses who can lend some advice?

I'm currently on Amitriptyline (12.5mg) to help with my sleep, and she wants me to keep taking 10 mg of preds, and of course the plaquenol.

Sonya

mnjodette
11-27-2007, 09:39 PM
I was diagnosed with lupus about 18 months ago and just recently diagnosed with fibromyalgia. My rheumy prescribed Flexeril at night to help me sleep (the fibro made it seem like I'd slept all night on a bed of rocks!!) I DO sleep better now and some of the pain related to the fibro is improved. I hear what you're saying, though...sometimes it's hard to know what's lupus and what's fibro. I have other autoimmune conditions, too, as do many on this board. It's pretty hard to differentiate all the symptoms sometimes. :?

sick n tired
11-27-2007, 11:52 PM
I was diagnosed with fibro and lupus around the same time. Like you, Sonya my Rheumy wants to focus only on the Lupus for a while. The liver condition can kill and fibro just hurts so bad that you wish you were dead. :? He did give me fibroflex to sleep at night. I am relatively new to this disease but not to pain. It has taken me literally years to get anyone to listen to me and not say that everything is all in my head. I have had idiots for Dr.s until I found my current Rheumy. I literally thought that I was out of my mind, because some of the doctors told me that I did not feel as I was telling them that I did. Oh well, at least I have found someone who not only listened, but did the appropriate tests.

Saysusie
11-28-2007, 11:44 AM
I was diagnosed with Lupus in 1985 and diagnosed with Fibromyalgia in 2000. I currently live with both diseases also. The only real distinction that I can make is that I know that Lupus does not make my muscles burn as if someone was running a blow torch up and down my arms and legs, just underneath my skin. That, I know, is the Fibromyalgia! Also, the Irritable Bowel Syndrome and Sleep disturbances are due to the FM!
The fatigue, weakness, malaise, etc....could be either. I quit trying to determine which disease to attribute them to and decided to just treat the symptoms and do all that I can to avoid a flare-up!
Some of the medications are the same, I take a muscle relaxer and NSAIDs for the FM.....so far, nothing has helped with the burning sensation.
Most doctors will treat our Lupus aggressively because it can be life threatening, they simply try to give us relief from the FM because it IS NOT life threatening.
You are not alone with this double diagnosis.....there are lots and lots of us out here with you!

Peace and Blessings
Saysusie

SonyaLA
11-28-2007, 06:39 PM
Thanks to all of you guys... Saysusie, sick n tired, and mnjodette..

... I thought I had seen several other members discuss fibro.

The pain right now is what is giving me the most fits. Also, the sleep issues seemed to be much better the first month I was on Amitriptyline . I can only tolerate about 12.5 mg without being a zombie the next morning. My sleep is getting worse lately, so maybe I will ask about the other meds you guys mention.

Back to the pain... I can't take advil, tylenol, aspirin and many prescription pain meds because my liver failed this past year. I'm allowed Aleve, but it really doesn't help much. I also take tramadol, which does help... but not enough. Does anyone know of a fellow fibro member on the new medicine they are advertising Lyrica?

sick n tired
11-28-2007, 07:40 PM
I have a friend with fibro who just started taking Lyrica. She said that it took away all of the pain. Of course we all are different and she is also taking 40 mg of cymbalta.

Hope that helps,

Karen