Sunday, February 19, 2012

Back in the Saddle

What an incredible few months it's been- especially these last few weeks have been like coming out of hibernation.

Dr. S., my general practitioner, felt like we were hitting a wall with my treatment as nothing we were doing was helping me at all. I was sleeping 16-20 hours a day, more when I had worked the day before. I could only work 2 days a week because any more would leave me completely wiped out, like I said in Fear and Loathing.

So I was on Prednisone for most of January, which helped somewhat, but Dr. S.'s most important suggestion for the month was that I should see another rheumatologist. Preferably one that wasn't a complete moron and pervert like the last one. So I go to see Dr. K.

When I explain the situation to Dr. K. she says, "I don't believe in fibromyalgia."

So I said, "Yeah, I don't think this is going to work out."

To which she responded, "A few years ago I was named the top fibromyalgia doctor in the Philadelphia area."

Perhaps she should have led off with that.

She went on to say that all cases of fibromyalgia have a cause and that doctors tend to use the diagnosis of fibromyalgia as an excuse to stop looking for that root cause- especially since there's such a huge market for drugs that do help a significant portion of the people with it.

We talked about how those new fibro treatments- the Cymbalta, Pristiq, Lyrica, Savella- none of them worked for me. What worked best was anti-in
flammatories and muscle relaxants. When we started talking about my old injuries things got interesting.

We talked about my bad hip (My Story), my broken leg (Spaz Girl Walking), the sprained ankles, tendinitis-es, pulled muscles, the nurse-maid's elbow I got as a little girl.

"Hm." She said. "You sound hypermobile. Can you t
ouch your thumb to your arm, on either hand?"

"Both," I said, demonstrating:

Then she asked if I could touch my palms behind my back with my fingers pointing up. "Easily."

She put me through a few more positions, all the while saying, "Yeah. Oh, yeah. Oh, boy." My hips in particular made her wince.

So it turns out all my joints are applesauce. And my body hates it.

She diagnosed me with Benign Hypermobile Joint Syndrome (my Beighton Score is 7/9)-- though they're trying to drop the "benign" from the name because, while some people can live their lives never even knowing they're hypermobile, there are people like me whose lives it ruins. But being as my case is rather severe and I have a number of the other symptoms, the hypermobility could be a result of Ehlers-Danlos Syndrome. We're starting the process of testing for that...more fun. I don't want to talk about that though, really, unless I have it...I'm honestly too scared.

Anyway, we talked about how I was once athletic. How, once I feel healthy enough, I immediately start exercising again until the universe decides to punish me for it-- my hip, my ankle, the endometriosis. She said I never would have broken my ankle if it hadn't been for the hypermobility-- that a normal person's tendons would have been able to hold their ankle in place instead of just letting it flop over and snapping like mine did.

She also told me to never tell doctors I have fibromyalgia because after they hear that word they'll never listen to me. "Your nose could fall off your face and they'd blame it on the fibromyalgia. When you're having a problem don't ever let them give you that as the reason." I immediately thought of the endometriosis battle, specifically Mystery Diagnosis and Other Medical Issues.

I have an appointment with a physical therapist coming up, Dr. K. said he'll be able to help me re-learn how to move in a way that's safe for my joints and build up muscles that will help the stability of my joints so they don't hyper-extend and strain other, related muscles. She said I could make a full recovery.

But I'm not so sure. Hypermobility doesn't explain why my muscles refuse to heal when injured, and my chronic muscle spasms and pain. Don't get me wrong, hypermobility explains a lot of things about my life, both now and in the past, but it doesn't explain everything. Hypermobility may be the cause, or one of the causes, of my fibromyalgia, but I don't think the hypermobility actually IS the fibromyalgia itself-- if that makes any sense.

So now there's more waiting. Dr. K. also me off the Lyrica, which has done wonders for my energy level, but the withdrawal has exacerbated my muscle spasms. That's been fun.

But I am most definitely back. There are a number of good posts coming up-- I've gotten some great ideas during this hiatus. More good stuff coming soon, I double promise.

Take care of yourselves, always.


  1. I wish your Fibromyalgia goes for ever and never come again in your life.

  2. Me, too! Hopefully one day everything will be straightened out.

    Thank you!