[bamagirl79]

Hi everyone,
I was just wondering how common it was for us with SLE to also have
Fibromyalgia? I have begun having some syptoms that I haven't had before
Like my muscles aching like i have the flu, when i know i don't.
and places that are very sore to the touch.
I don't think my Dr. would do anything if I told him, but i was just wondering
and thought i would ask everyone...
Thanks for any help you can give.
Pam
Bamagirl79

 

[cispence98]

Unfortunately it seems as if they do come togather as a package deal also I was told I had althralgia which to me seems to fit the fibro description, I explain it to others as feeling like arthritis in my muscles, it seems to explain enough to not generate any more questions.
Anyway alot of rheumys will treat it with the lupus if certain trigger points are present that define the disorder/condition/pain in the neck!!
I am being treated for the fibro wth the drug lyrica it is pricey and honestly because I am in so much pain and fatigue with the lupus I really don't know if it actually works, my doc did give me a RX for neurotin which is a different formula for the drug lyrica I need to talk with her about any withdrawal effects and mixing the 2 drugs together what there side effects will be.

Anyway talk with your doctor about it and see if you fit the profile for fibro and then maybe they can suggest treatment options, I hope things go well for you and that you feel better!!

 

[bamagirl79]

thank you Laura
I have a feeling that's what it is. I am taking Nuerotin for my Migraines
if it is suppose to help Fibro, I can't emagine how bad it would hurt.
I see my rhuemy next week and i will talk to him about this.
Hope we all feel better soon...
Pam

 

[Katharine]

Hello,

About 30% of lupus patients will also have fibromyalgia. Fibromyalgia is diagnosed through symptoms but also through certain pressure points that people with fibro have. These are found in specific places on the body. There are 18 points (if I remember correctly) and in order to have a diagnosis, 11 need to be tender (I think by tender, they mean very painful). It is also quite difficult to diagnose properly and can occasionally be a wrong diagnosis used by doctors when they can't find the real reason for certain symptoms.

Here's some info on screening and diagnosis

http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=6

I too have very sore skin and muscles. I don't know if it's down to lupus or myositis in my case but I don't have fibro.

hope that helps a little,
Katharine

 

[Salopsally]

Hi Pam,
I have Lupus and Fibromyalgia too.. and arthralgia. Im out of a flare now but still have muscle aches and weakness and fatigue.
What joys this disease brings. Hope you get sorted out with medication soon.
Luv Sal x

 

[raggedyann1]

Hi Pam,

I have fibromyalgia with my lupus. The medication that has helped me the most is Neurontin, even though I can't tolerate the higher doses often used when it is given for pain. I take 600mg all at night because the drug makes me very drowsy, most other members here take it 2-3 times a day and their total dose is over 2000mg. I also take pamelor which is a trycyclic anti-depressant that helps Fibro patients to attain deep levels of sleep which then reduces the pain levels. The 3rd component often used in treating Fibromyalgia is a muscle relaxer. Soma works best for me even though flexeril is the one found most effective on Fibro pain.

It is a matter of trial and error to find which drugs at what doses do the best of managing your pain. I also take narcotic pain relievers for my lupus/scleroderma pain problems I am sure there is some carry over to the Fibromyalgia. I also get trigger point injections at the pain doctors and they help a good deal as well.

I would strongly suggest talking to your doctor about it. If nothing else he may refer you to a pain management clinic.

Take care,
Karen

 

[Karly1964]

I was diagnosed with fibromyalgia in 1989 and sle last year in April so it is about a year now with that diagnoses. But throughout that time I was tested and re-tested for lupus over and over with no reall positive results, until last April I told my nurse practioner to test me for it and it came back positive. I can pretty much tell wich pain is fibro pain by the trigger points. Karly

 

[andi04]

I have fibro with mixed connective but my fibro was diagnosed first then the mixed connective, strange how things work out, I actually got disability based on my fibro symptoms thanks to my local senator who really went out there for me. Thanks to him i no longer have to worry about working and wondering about medical bills but I know a lot of you are waiting still. anyway fibro causes a burning like pain, yesterday i couldn't stand even wearing clothes because of how bad the pain was i took three neurotin and after awhile it helped that was on the advice of my doctor.

I went crazy yesterday, because of the pain, i'm not sure what that is from wether its from the fibro itself or the meds, or from the depression nobody knows, but i'm a lot better today, its just really strange how this disease works.

I visit a fm support group PM for the information.

andi