Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 12-19-2008, 02:17 PM #1
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Default What is it Really?

I just wanted to say, I was injured in an accident in 1987. Given a diagnosis of fibro in 1990. I had a clear cut case of Lyme in 1994.

Since 2000 the doctors have argued over my minor salivary lip biopsy, was it Seronegative Sjogren's or not.

In 2004, I discovered I had small fiber neuropathy found on biopsy and autonomic neuroapthy as well.

This year, my nail got ugly and white and lifted totally up off the nail bed. It is not a fungus. It is oncholysis....most often associated with psoriasis. You can get psoriasis in just a nail and have one of the Seronegative Spondyloarthropathies.

Spondyloarthropathies are entheseopathies, or enthesitis....ligament problems, that can feel like arthritis or muscle problems. Of course, every trigger point for fibro is a ligamentous insertion. You could conceivably be diagnosed with fibro, even if it is a spondyloarthropathy. No test will diagnose spondyloarthropathy. You just have to wait until certain things show in your body....waiting, waiting a very long time.

It is very hard to get diagnosed with a seronegative spondyl. If not for this gross fingernail, I would not even bring it up to my doc. Interestingly, some of the drugs used for Sjogren's such as Plaquenil cause psoriasis to manifest. It also explains so many of the huge issues I have dealt with including why I could not tolerate the drugs always given for fibro, such as SSRIs and tricycylics----psoriatic arthropathies come with polymorphisms in the enzyme in the liver that metabolizes these drugs, CYP2D6.

This has been a long and frustrating journey. I still don't know what I have but now it is either seroneg. Sjogren's OR psoriatic spondyloarthropathy or psoriatic arthritis with systemic problems. It will likely take a year to figure out this new development.

I have had to shove abstracts and medical notes under every doctors nose. Then they have the 'Aha' moment. It is frustrating.
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Old 12-19-2008, 02:29 PM #2
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Awwww, ((((cycleops)))). I hope you get everything all figured out very soon.
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Old 12-19-2008, 03:05 PM #3
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Cycleops--I am so sorry to hear about your situation. To me, it is so riduclous the amount of test, poking, proding, etc we have to go through no matter what you have wrong with you. For those who have cut and dry symptoms they get a diagnosis quickly. Throw one or two other symptoms in, and the doctors are at a loss. I just don't understand. I will keep you in my thoughts and prayers. Just remember, we can only live 1 day at a time. We are all survivors. Please keep us informed. Merry Christmas and lots of gently hugs to you.
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Old 12-20-2008, 09:49 AM #4
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Well, thank you all...I could be in half of these forums....I just gotta find where I belong.

If I don't get my big feet in some galloshes and gallop to the stores to buy gifts for my ever enlarging brood....(next grandchild on the way soon), I will be in the dumpster. no matter what disease I have or don't have.
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Old 12-20-2008, 10:11 AM #5
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I did most of mine on line this year because of my stuff. It was just easier. Most of the time I don't leave the house more than 2 to 3 times a week because of the pain. So it was only logical for me shop on line. I may do it again next year because it was so easy, I didn't have to fight the crowds, wait in line, etc. It was awesome. I would recommend it to anyone. Merry Christmas.
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Old 12-22-2008, 05:39 PM #6
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Well my advice to any one with Fibro, is, google Seronegative Spondyloarthropathy.....it bears an awful close similarity to Fibro. There is no actual test for it, but Bone Scans will usually show a pattern. Enthesitis or Enthesopathy is inflammation of ligaments, which are all trigger areas for fibro...again, seronegative, hurts like the devil. Rib cage pain and Sacroilliac pain are two of the most common sites, but you can also get bursitis in your hips, knees etc. Sometimes they treat this with the 'mab' drugs but you have to make risky choices. There isn't all that much they do besides manage pain except for the biggie, preventing joint misalignment and future joint deformity and arthritis...(so I have splints and AFOs) When the ligaments don't keep bones in place, the joints fail eventually.

You can even get it in just your hands.

If any of you have psoriasis or nails that are turning white or lifting off...PM me.

Then in addition.....

If you have not had a skin biopsy for small fiber neuropathy, consider it. (Mine was abnormal)

If you have not had a muscle biopsy, consider it. (Mine was abnormal)

If you have not had a full autonomic work up, ask. You have to go to an autonomic center....this is an extensive test. (Mine was abnormal)

If you have not had a minor salivary gland biopsy, ask. (Mine was abnormal)

It isn't fibro, until all that comes back normal.

You know who found this??? A cardiologist who said I recovered abnormally from a stress test....after I had 4 of them who said things were fine.

I have diagnosis of Sjogren's, Lyme, Autoimmune Autonomic Neuropathy, small fiber neuropathy, sensory neuropathy from the small fiber neuropathy, gastroparesis, hmm, gee, I think that covers it........and I bet my farm that Spondylarthropathy is coming next. I think it is all one disease.....all from a history of fibro that I would still be sitting with, had I not pursued this. I also carry a gene mutation that does not allow me to take any SSRIs, tricyclics, antidopaminergics among others.

If any one wants more info, you can PM me.

Have a peaceful, painfree holiday.
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