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Diagnosed with fibromyalgia. ESR, CRP goes up while having a fibro flare. Joint pain, migraine, rashes. Is it lupus?

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Practicing since : 1999
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Hi, I injured my back in Feb 09 (very large central herniation L4/L5 with sequestrated disc) which I then went on to have surgery for in Sept 09. From the very day I hurt my back I've had problems with bad fatigue , muscle aches and pains and also joint pains which have gradually gotten worse with each flare. Three months after my back surgery I felt really unwell with all the above problems plus worsening of back pain. Had blood tests done and my ESR came back at 104. Had more MRI s done as they thought I had an infection in my spine but to this day there is still no answer. After having these problems on and off for over a year my Rheumatologist admitted me to hospital for test after test due to a history of TB in my lymph nodes and a family history of Lupus . After a week gave they me the diagnosis of Fibromyalgia on April 2011. Hurting my back is what triggered off the Fibromaylgia badly but when I look back now I ve had some of these symptoms since I was 12 years old, now I ve just turned 29.

My current problem is that when I do have a fibro flare (which I XXXXXXX t tend to get a break between) I have bad joint pains and my ESR always goes up. I can usually guess what my ESR will usually be to the exact number before my dr gives me the results and my CRP also goes up as well. I ve been trying for last couple of years for my Rheumatologist to listen to me and tell him that when I do have a flare my ESR goes up and get the bad joint pains and I know that Fibromyalgia isn t an inflammatory condition. The last 3 times my Rheumy has seen me he s just brushed me off and said that its just normal for me. So now have stopped seeing him and waiting for a second opinion but have to wait til end of May and having a family history of Lupus, I like to definitely have that ruled out. When I do flare my ESR goes up, CRP but not all the time, I become anaemic, sometimes my white cell count goes up with no reason, bad joint pain (especially the knees, wrists, fingers and sometimes the toes) my hair falls out in handfuls, become extremely sensitive to sunlight which usually ends up in a migraine, I also break out in rashes after being out in the sun, swollen glands in throat, armpits and groin and mouth ulcers which I XXXXXXX t all the time and I'm starting to notice a lot of dizziness. Then there is all the common Fibro symptoms on top of that aswell so not sure if its just that causing them or if it s something else. The reason why I want the lupus ruled out is because I have a brother (whom I have nothing to do with) who gets a raised scaly red rash across his nose and cheek area when he becomes run down and then also have 2 other family members that have Ulcerative colitis which are all on my dad s side of the family including the Lupus. My ESR has been up to 104 at its highest but usually sits around high 50 s to mid 60 s. When I was diagnosed with Fibro, it was at it s lowest it has ever been which was 33. In my last blood test a just over a month ago my ESR was up to 78 and CRP of 15. I had tested weakly positive to Barmah Forest Virus from mosquitos and dr had thought that had been the cause of the pain and fatigue but a second test a couple of weeks later had ruled it out. So the high ESR is still a mystery!! The only thing that is helping with the pain especially in the joints when the ESR does go up is steroids. I'm due to have another blood test next week but have a feeling that it will be high again as I've had quite a busy and stressful week and going through a flare at the moment. Have been tested over and over again and all tests for Lupus and other autoimmune disorders come back negative. I know that Fibromyalgia doesn t cause my high ESR problems and my Rheumatologist did think I had PMR at one stage but wasn t diagnosed with it. Any help or thoughts would be greatly appreciated!
Posted Sun, 28 Apr 2013 in Lupus
Answered by Dr. Divya Agarwal 2 hours later

I absolutely agree with you that if your ESR and CRP go up, then there has to be an inflammatory condition going on. It may be another issue that over and above that you may be suffering from fibromyalgia.

However if your tests for XXXXXXX are negative, then it is extremely rare to have an XXXXXXX negative lupus.

However the possibilities we should think of are:
-to repeat XXXXXXX
-to do an ENA (line immuno-assay for extractable nuclear antigens)
-rule out any thyroid dysfunction and low vitamin D levels.

Also since your problem started with the back and you have a family history of ulcerative colitis, you should have your HLA-b27 checked out to rule out ankylosing spondylitis.

These are the possibilities, also do you respond to NSAIDs when you have joint pains.

Hope I have been of help, feel free to ask me any queries.
Above answer was peer-reviewed by
Follow-up: Diagnosed with fibromyalgia. ESR, CRP goes up while having a fibro flare. Joint pain, migraine, rashes. Is it lupus? 1 hour later

Thankyou for your response, I have had blood test after blood test for last 4 years and still no answers. Have also seen a Haematologist (before I was diagnosed with Fibromyalgia) and no answer there either. My XXXXXXX has been check many times, have had it come back weakly positive before and had my dr recheck it 6 months ago and was negative again. I'm sure I've been tested for the HLA-b27, sure the ENA has been done aswell, and my dr is regularly checking my thyroid levels. Have had colonoscopy and had Ulcerative Colitis ruled out aswell.

Have take lots of NSAIDS in past including Celebrex. I can't even take that anymore as it causes more stomach problems (have mild gastritis) for me but have found that they don't help with my pain. I was on Endone (Oxycodone) for my back by was stopped by the health department here as I had been on it too long. Was the only thing that helped. Was also on Duragesic 25 patches which also helped but was told to stop when I was diagnosed with Fibro. The only thing that dr's can give me atm is Tramadol and it does nothing for my pain levels. Was up to 800-1000mg a day and really did nothing so have stopped it all together. The only thing that dr has given me that has helped with the joint pain so far is the steroids.
Answered by Dr. Divya Agarwal 17 minutes later

Please let me know the following, so that I can advise you better.
-     Has the XXXXXXX ever been done by indirect immunofluorescence? Or was it always been done by elisa?
Because, sometimes they give different results.
-     Are you being helped by drugs for fibromyalgia like duloxetine and pregabalin?
-     And does exercise help your pain?

Awaiting your reply.

Above answer was peer-reviewed by
Follow-up: Diagnosed with fibromyalgia. ESR, CRP goes up while having a fibro flare. Joint pain, migraine, rashes. Is it lupus? 59 minutes later

I have just quickly gone thru all the test results that I have and don't have any of my blood tests back that far. All the results would be with my old Rheumatologist so I don't know which way it was done.

I was put on Pregabalin for permanent nerve damage and pain in my left leg from my herniated disc. I have found that if I do stop the nerve pain comes back worse and find it doesn't make much difference with my Fibromyalgia. My pain specialist put me on Duloxetine back in Sept last year and have found no difference in that either since starting it. I had run out 3 weeks ago and just started it again a few days ago and noticed no difference either. I rarely get side effects from medications so never know if they are actually working.

I do suffer badly with fatigue so exercise doesn't happen very often. Find it hard enough to keep up with household chores as I live by myself. I do find that if my joints are aching then being more active really aggrevates it more and rest is the best thing.

Just really frustrated as I know there is something else going on but doctor's keep coming up with nothing.
Answered by Dr. Divya Agarwal 4 hours later
I understand that you are getting frustrated, but before putting you on any type of therapy, doctors need to be absolutely sure of the diagnosis.
As you understand that the therapy for lupus is complex and involves immunosuppresive therapy , it can cause major side effects if not used properly.
As for your fibromyalgia if drugs and exercises are not working so good,the next best thing is cognitive behavioral therapy, you need to find out if the same is being offered there.
I hope I have been helpful.
Above answer was peer-reviewed by
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