Fibromyalgia is REAL, people.
If I had a nickel for every time I heard “But your tests are negative…”
Well… then why don’t I FEEL normal? I mean, at the age of 26, I was the epitome of health. No drugs, no major illnesses or hospitalizations, just finished 6 months of Crossfit getting ready for the Police Academy… and WHAM.
- I can barely walk
- I’m sleeping 14+ hours a day
- I can barely roll over in bed without yelping in pain
Something was obviously wrong.
Neurology said it was Internal Medicine.
Internal Medicine said it was Rheumatology.
Then I got bounced to Gastroenterology… Because leg pain apparently has everything to do with my digestive system (now, I know that DIET had a huge role in my pain, but at the time, I didn’t know).
While I was finally diagnosed in 2012, I had been told I was wrong for five years. I was convinced that something was wrong with me, and even though I didn’t know the name, I knew that my disorder was there. I knew fibromyalgia was real.
Neurology wanted a lumbar puncture to rule out MS. Well, sure enough, that was negative. After being bounced from doctor to doctor, also being told I didn’t have celiacs disease (which was a relief)… the pain started to get better. I returned to work and acted like everything was fine for a few years.
Then in 2011, I had an aggressive occurrence. The pain, the sleep, back on disability. At this time I found a new neurologist who knew exactly what he was doing and how to do it. He ran some tests:
- COXSACKIEVIRUS B ANTIBODY PANEL – basically, a virus that causes flaccidity and stomach issues – with no known cure)
- BORRELIA BURGDORFERI ANTIBODY -Lymes Disease. I lived in New York for 15 years, so it could be a possibility. Most carriers of Lyme’s don’t see symptoms until upwards of 10 years after the tick bite)
- SERUM PROTEIN ELECTROPHORESIS – a genetics tests for recessive diseases
- ANTINUCLEAR ANTIBODY – basic first step in autoimmune testing
AND BINGO – WE HAVE 1 POSITIVE TEST RESULT! MY Antinuclear Antibody was shows as 4 times the normal limit. Range is typically 1:80, mine is 1:320. It’s a start. At this point Neurology says well, it’s not a neuro issue, so to Rheumatology you go. But there still isn’t an answer, so no passing go and collecting $200.
This Rheumatologist, took so much blood I remember thinking I was going to pass out in the chair. I won’t bore you with the test names, because there were 20… TWENTY! But they did include a lot on antigen testing, antibody, Lupus, Sjorgen’s syndrome, and ANOTHER Antinuclear Antibody…. And all the tests were NEGATIVE… except…
Antinuclear Antibody again! But this is the kicker – on November 28th, my test was 1:320. On December 21st, my test was now showing 1:640… DOUBLED in 4 weeks time.
After that Rheumatologist looked over all my tests. And she still told me whatever pain I was feeling was in my mind and referred me to psychology. Needless to say, I found yet ANOTHER Rheumatologist (Do not pass go, do not collect $200).
3rd time’s a charm, right? (Please tell me I’m right!)
Sure enough, after looking over all my tests and going in every 2 weeks for evaluation and some non-traditional prescriptions (including epilepsy medication and a sleeping pill), I had my diagnosis.
Fibromyalgia is real.
From 2004 – 2007 was I was told I had PTSD and conversion disorder (psychosomatic-induced pain). But even after therapy, the pain was still there. When the pain got so bad in 2007 that I was in a wheelchair, then the doctors started looking more into what may be the issue.
So what knowledge do I have to pass onto you?
Don’t EVER give up. Get second, third, fourth opinions. If you KNOW something doesn’t feel right (and you know your body best, right?) then DON’T ever let anyone tell you you’re making it up.
Don’t let someone else convince you that you’re wrong about yourself. Even if your pain is psychological, you still deserve to know the cause and find relief. Keep trying until you feel like you have an answer that makes sense for you.
Find different professionals in different areas. If you can afford it, or if you can find enough professionals that think they can help, find them. Find fibro specialists in your area (which, by the way, are hard to find in general, but keep looking).
Don’t be afraid to try and help yourself. Continue to go to the doctor and seek medical answers, but in the meantime, change things up (in a healthy way). Try a new diet. Try a new way of living and breathing. Fibromyalgia is real. Not only is fibromyalgia real, it’s not necessarily entirely out of your hands to solve. We’re finding more out about this mysterious pain disorder each and every day, and the more knowledge we have, the more we can continue to help ourselves.