Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Aloha everyone. I have unexplained symtoms that have been bothering me for many years that don't really fall under the fibro category. Thanks to the fibro diagnosis, many docs have either gaffed me off, made me feel crazy, completely ignored it, gave me the run around, or like the newest PCP who I fired kept throwing probiotics at me and said see if it goes away (code for it's all in your head). They usually tell me I need to join a yoga class or pick up a vigorous exercise routine. WTH
But now I have a new podiatrist (a referral for ankle pain that according to my PCP was all in my head) that noticed my ankle and feet joints move out of place when I walk and stand, diagnosed me with nerve damage. So HE started noticing other strange things and wondered if it's all pieces of a bigger puzzle. He taped up my ankle and foot... when I came back for a follow up yesterday, I showed him all the bruises around my ankle just from pealing the tape off. He asked me how long that's been happening and I said pretty much as far back as I can remember and my bruises can look pretty bad.... I typically look like I fell down the stairs when nothing's happened to me. He also noticed my really bad posture, I can't bend at the hips to touch my toes, nore can I bend my neck to look down. Anyway he recommended I see a hematologist. THis is the 1st doctor I've ever met in YEARS that has a brain in that head of his and is actually taking his job seriously.
I saw my acupuncturist today and thought I should bring up what the podiatrist said. To my amazement, the acupucturist said he treats a few patients with a certain syndrome where they have hypermoblie joints, easly bruising, chronic pain and some other symptoms. It's called Ehlers-Danlos Syndrome.
I've never heard of it so I googled it once home. OMG.... this describes just about everything wrong with me!! My double jointed joints and how they come out of place, the terrible joint pain, easy bruising, how I cut so easily, why I have frequent falls, my constant back pain, bad posture, acid reflux and chronic constipation, even why I'm resistant to numbing agents (like when they need to do dental work or a simple eye procedure and it takes hours of trying different numbing products). I could put a check next to nearly every symptom on the list. About Elhers-Danlos: https://www.ncbi.nlm.nih.gov/books/NBK1279/
My husband started arguing with me about it and said why bother getting a diagnosis if there is no cure. But if this is what I have, it means I could get the proper PT, braces, and more. It could improve my quality of life. Also, it won't make me sound crazy anymore. :)
Well, I just wanted to put this out there. I see my new PCP on the 25th and am really excited to find out who I have to see to go about testing and what the outcome is. I'm just happy that someone is finally looking at these symptoms after so many years :)
Oh, and if one more moronic MD tells me I just need to take up yoga or exercise vigoursly, I'm gonna take a bat to his knees, ankles, and hips see if he can run a few miles and prove to me he can still do a few yoga poses. THEN he'll know what it feels like. SMH
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Welcome to the Perseid meteor showers, the "biggies" usually every year. (The Leonids beat 'em one year IMHO).AND today much of the northern hemisphere will see 5 to 99% solar eclipse. How cool is that? Your best bet is to be in the UK or norhtern Spain, where totality is excellent before sundown. Me, I'll get a super duper tiny itty bitty slice of it, so little that it won't be noticeable. New...
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... observed a solar eclipse.
Second, with respect, tell your husband he's a damn twit-for-brains. Youc an't cure epilepsy, either, but a diganosis does mean *proper treatment* that improves quality of life, et cetera.. Seriously? "Why bother if there's no cure?" TEll that o people with diabetes. Hep-C. Bad eyesight even!
Third, I was screened for Elhers-Danlos and it was ruled out. Three times. My GP keeps trying to find the answer-that-is-not-fibro. So much as I hate the idea you'd have it... and I hope you'd keep coming to fibro board! ... a diganosis that means getting braces and orthotics and so forth is a *blessing*.
Sorry I blew up at your hubby, but that kind of remark is just "ugh!" to me.
Keep us posted, okay? Holding you in puma purrs.
I hope you told your husband that a cure isn't what being diagnosed is about, it's about being able to manage the symptoms and know if any physical activity (even things as simple as grocery shopping) you do is helping or hurting.
Autumn, thanks so much for your reply. I was wondering if someone here had this condition. The acupuncturist said it was rare but he does treat some patients with it who also have fibro. I figured once diagnosed, braces would be required. It makes sense since those devices seem to help me.
Susan