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Old 08-04-2009, 06:32 AM   #1
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Anyone with Lupus and Fibromyalgia?

Hi everyone,

I was diagnosed with Fibromyalgia about 7 years ago by a well-known rheumatologist in the Boston area. In 2005/2006, I started to get symmetrical joint pain, low grade fevers, and very bad exhaustion. After a bunch of lab work, my doctor dx me with Lupus. Eventually I got a new job and changed all my doctors. My new doctor has been more dilligent about my progress. It is actually some kind of Undifferentiated Connective Tissue disease that does not completely fill the Lupus requirements yet. It has gotten worse. I've been on Plaquenil and found I was allergic to both generic and name brand over time. I've been on numerous NSAIDS. Over the winter I was on prednisone which dramatically improved my pain levels. Now I am on a weekly injectable of Methotrexate.

I went to see an endocrinologist Friday because I have a tumor on my adrenal gland and possible thyroid issues. He said he didn't think I had Fibromyalgia and that is was just the UCDT. I've heard of others that have both. Can anyone confirm this?

Thank you for your input!

 
Old 08-04-2009, 05:57 PM   #2
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Re: Anyone with Lupus and Fibromyalgia?

Yes, I was diagnosed in 2002 with FMS and after many med trials and going through 2 Rheumatologist who gave up on my lack of response to treatment, (med reactions, etc) I was determined to find someone who could treat a difficult case. I found a Rheumatologist who specialized in Fibromyalgia, who did some extensive lab studies and xrays and actually took time to read a long medical file of my failure to respond to treatment. It was his diagnostic expertise that found my lupus just 2 years ago. I know that I probably went through needless treatment and therapies that may have even worsened my health, but at least now I have a caring physician who has actually made me feel some better overall.

I totally believe that I do have both illnesses as I have the diagnostic trigger points of Fibromyalgia, as well as the typical costrochondritis and the taut muscles (huge hard lumps especially on the shoulder blade area.) I was treated with the typical injections to trigger point areas and had adverse reaction to steroids after third spinal. I went through a dozen or so different sleep aids/tranquilizers before being labelled as one who just cannot tolerate those and antidepressants (have opposite effect in me) I do know that reading and discussing with my Rheumatologist has revealed that lupus and FMS symptoms can overlap, making it truly hard to distinguish one's source of symptoms/flares at times. I will say that once I began the treatment for lupus, what I believe to be my FMS symptoms have let up some. So, yes you can have both. BTW, I have two siblings who also have FMS, but do not have lupus.

 
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Old 08-04-2009, 07:13 PM   #3
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Re: Anyone with Lupus and Fibromyalgia?

I have UCTD and FMS. We primarily treat my lupus symptoms although right now my major problems seem to be related to scleraderma. I've had 2 neurologists prescribe antidepressants for the FMS. I recently increased the cymbalta to also address the neuropathy in my feet. I've given up on trying to figure out what disease is causing my pain.

 
Old 08-05-2009, 06:49 AM   #4
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Re: Anyone with Lupus and Fibromyalgia?

Angie, my local drs. diagnosed only Fibromyalgia for some years. Because I did have multiple trigger points, they then attributed my widespread pain to FMS as well (??!), also my years of chronic GI & urinary problems. But because so much of what they'd attributed to FMS *went away* after I was Dx'ed with lupus and started Plaquenil, I really wonder if my drs. were correct about the Fibro.

But we certainly read all the time that the two often co-exist, and and how hard it can be to separate one from the other.

My own rheumie all but said "BAH" when he saw notes about Fibro in my records, giving me the sense that he didn't care one way or the other. If your endocrinologist zoned in on thyroid & adrenal, that maybe is a good thing for him to do, actually...? I mean, a "cut to the chase" kind of approach? Anyway, I hope you're well along getting more answers! Always, Vee

Last edited by VeeJ; 08-05-2009 at 07:04 AM. Reason: clarity

 
Old 08-05-2009, 07:55 AM   #5
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Re: Anyone with Lupus and Fibromyalgia?

Thank you all for your input!

I have noticed that by fibromyalgia has taken a "back seat" since I began treatments for the Lupus. However, now that I am on Cymbalta, I haven't had that sun burn to the bone type pain I get in isolated areas of my body from time to time. I don't miss that "Don't touch me" aspect of the fibromyalia. Also, I am hoping the Methotrexate kicks in by the end of the month.

Vee - I am glad I am seeing an endocrinologist. He seems very interested in finding out if there is anything wrong with me from that side. We'll see!

Thank you, again!

 
Old 10-09-2009, 08:54 AM   #6
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Re: Anyone with Lupus and Fibromyalgia?

I have both lupus and fibro, among alot of other things.It took me awhile to see a rheumy.But was glad I did,He is fantastic,it takes hours to see him but it is well worth it.Now that things have got worse I cant wait to see every six months.They listen and dont treat you like a number.I am so sorry for those of you that have to go threw so many.Quess I just got lucky. I go to the KC area. KU-Medical Center.I hope that was aloud on this board. home sweet home

 
Old 10-09-2009, 05:34 PM   #7
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Re: Anyone with Lupus and Fibromyalgia?

My docs poo poo the FMS also. I usually don't even mention it.

 
Old 10-10-2009, 05:12 AM   #8
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Re: Anyone with Lupus and Fibromyalgia?

I truly believe that they are separate illnesses. My first diagnosis was Raynauds Phenomenon. Then years later Sjogren's Syndrome. Years later Fibromyalgia & years after that Lupus. All had their unique symptoms. After the Lupus, I wondered if there was some kind of natural progression with auto immune diseases?
But I also had a high amount of stress when I was growing up, and was exposed to mercury at the neighbor's house(a huge thermometer broke on the kitchen floor and we tried to pick up all the mercury--being children & not knowing how toxic it was.)
Unfortunately, I have had several Drs feel free to just dump some of my symptoms off as due to Fibromyalgia, so I find that it is best not to tell my
new physicians that I have been diagnosed with it. I have heard other people tell stories of not wanting to tell their docs that they have Fibromyalgia due to the docs saying it is all in their heads, and that they don't have it--despite having the trigger points/pain and the extreme fatigue.
Best wishes to you.

 
Old 11-19-2009, 05:53 PM   #9
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Re: Anyone with Lupus and Fibromyalgia?

HI Angie,
Yup I have those plus hypothyroidism. The thyroid and the fibromylagia was diangoised last month. My neck has been sore for a long time, and I just changed pillows and that helps but not totally. am Wondering if the neck pain could be with the adrenal gland or from the fibro. Have you had issues like that?

Teeha

 
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