Mrs Eula woodbine

[eula]

is there any support for Fibromyalgia sufferers

[pauline19]

I don't know if there is any formal support group on HealthUnlocked. I can tell you what I learned from having had Fibro off and on for years-- I have many serious diagnoses. Fibro is the LEAST SCARY, but sometimes the most painful--why? I was told by two very smart MDs -- the young one was a DO who was in a "pain management" practice: he said, "it's usually post-viral, and often goes away IF you can clear the infection!"

Second guy---a snowy-haired neurosurgeon who actually tested and found what viral sickness GAVE me the Fibro. And it was a full 15 months AFTER the infection and the Fibro was GONE. (That time anyway) but I was telling him how my left arm had been dangling uselessly by my side all summer (this would be summer of 2013--and I'd even been in Rochester MN at a place named like a county in Ireland--a place where the medical doctors have no where MORE prestigious to go so a lot of them are lazy--(my opinion only). But back at home that deservedly also world-famous doc asked me, "any other symptoms at or around the same time?" Yes, sore throat, ringing in ears, headache, low fever. "did you see any MDs about the sore throat?" Yes-- ENT, primary care, urgent care, and my spouse and I did a home Strep A test which was negative.

He ordered up a bunch of viral tests, even PANDAS! (Which is pediatric but is THOUGHT to identify viruses which cause OCD-like symptoms in kids! But he nailed it in doing a coxsackievirus test! BINGO. Coxsackievirus (commonly called "Hand foot mouth disease" here in the U.S. no idea about other places) is a POLIO virus. And in an adult will cause all that I described--but can also present with a limp limb, typically an ARM in an adult! Source for all this important info? Wikipedia! All 3 other MDs thought I was a nut when I said, I can't move my left arm!!! What is happening to me? All, ALL said I should see a psychiatrist (and I did! That guy said, "why are doctors ALWAYS sending me cases that are nothing to do with psychology??

Lesson: the MD isn't always smart or even perceptive. They just made it thru residency. That's all. They ran the race and managed to finish. It's endurance they had, NOT brilliance!

I am of the opinion that you could see 100 MDs, even 1000, and not get the answer to the same question ONCE.

My mom was a very smart lady and had held so many very important and unimportant jobs in her life including briefly being a nurse. She told me, that a doctor thinks of you NEVER. That when his care puts you in the ground 2 decades too soon, he is rolling into his cozy bed on the evening when your family throws dirt on your coffin. And he never gave YOU a second thought when you were standing in front of him begging for help!! They don't go into medicine to take care of YOU, but to have a good-paying job. It's that one-in-a-million doc who has a passion for their work that makes discoveries, or even orders the right test! My own husband revealed to me (quite by accident) that (his opinion so probably worthless) ALL MY 'specialists' think I'm crazy. I said, what, you think I don't know that? It's all over their faces! But my own primary care did one of MANY genetic tests, and an "incidental finding' was that I am a carrier of this very VERY RARE THING: hereditary Coproporphria. Toss THAT into google and it's literally and figuratively a KILLER. Which has a treatment! A treatment which even the poorest person can afford: Hemetin.

But to get to that Dx? My gosh -- try collecting your own poo and pee IN THE DARK, Convince the lab people not to take off the foil that you bring it in with ice packs, etc, have 20 tubes of blood, convince them to wrap foil around those (they wouldn't do it this time) and then make sure you have undated lab orders so that you can fill in the date and do those tests over and over (I've only done them 4 times) then be ready to call the pH.D at the lab who puts in his interpretation (bc my MS is in Engineering!) that it might help to know if I'm a carrier (yes) or if I've had any Cytochrome P 450 testing (yes again! That genetic test shows which pathways your liver has available to metabolize drugs--in my case the ONLY analgesic that my body can metabolize is hydromorphone aka dilaudid!! So no Tylenol (paracetamol) or aspirin can help-- it only damages the liver further. So my lesson to anyone who happens to see this is this: Doctors will put in your records that you're every kind of crazy-- but persist in getting to one who listens to you, because YOU know your own body best, NOT THEM. I have a condition so rare that I should've been dead as a TODDLER, and I've outlived anyone on this planet with another. I was actually a patient at NIH and told them, "oh, I thought you'd be all over my having a Cecal bascule [it's a variant of the typical Cecal Volvulus, except your cecum becomes an origami fold up just before it ruptures, killing you]. They looked at each other and I said to these idiots, "oh, you didn't actually read EVEN my SURGICAL HISTORY that I gave you all typed up with that in BIG BOLD RED LETTERS? No, you didn't ." And they're the last stop before you actually DO get tossed in the grave! Oh sure.

So BE THE LADY WHOSE CHART SAYS 'psychosocial dysfunction' like mine does. The doctors who screw you over with those words-- they're just as mortal as the rest of us....

[Admin_AFMCG Partner]

Hello Eula,

This community is run by a Fibromyalgia & ME/SEID support group in Andover Hampshire. We run this community forum alongside our group for our members and anyone with Fibro or ME are welcome to join for online support.

If you would like to find out if there is a local support group and live in the UK, you can find out information by contacting the regional coordinator for your area via the Fibromyalgia Action UK website. Please see link;

fmauk.org/contactsmenu/supp...

I hope you find the support you need

Best Wishes

Emma

[eula in reply to Admin_AFMCG]

yhankyou so much Emma