1. < Fibromyalgia

How my Fibromyalgia started and the evolution of research

Posted by daliea @daliea, Apr 9, 2022

 I am seventy two was diagnosed about forty years ago and up until two years ago I was able to smile and pretend I was fine most of the time.Then I got a virus which was bad enough to go to the emergency room.Gradually I started with tingling and drenching sweats,electric shock pain-basically I now have body pain and burning from the bottoms of my feet to the hair on my head.It’s the body from hell. I have to laugh when the doctor asks if I am depressed.Fibromyalgia is not nice,.Thank God that research is being done so that possibly my grandchildren may fair better with new treatments.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

tbonanno16 | @tbonanno16 | Feb 4 10:51am
In reply to @mardi123 "Hi fellow sufferer, or rather fellow 'fibrite' desperately coping day to day. I've had this inherited..." + (show)
@mardi123

Hi fellow sufferer, or rather fellow 'fibrite' desperately coping day to day. I've had this inherited disease all my 67 years but was only diagnosed about 8 years ago, because it was so poorly understood. Doctors are only now beginning to comprehend the complicated "syndrome of symptoms" involved. Each of us has a collection of symptoms unique to us, but we can compare notes and find out what helps us get through the day. I would first get a doctor who understands the disease and is willing to learn more about what helps you live a better life. Your health care team should also include supportive friends and family (or a support group); massage, if affordable; nutrition advice; and pain management, among others. Searching websites will give you more good information and more first hand stories with good helping hints to bring to your doctor. Don't stop trying to achieve your best life.

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Thank you for confirming! I was born with fibro and I know my dad had it too but back then that diagnosis didn’t even exist. When I was younger my doctor dismissed it as ‘growing pains’ and I wasn’t diagnosed until my 20s. I am 67 and have coped all my life but now have chronic back pain that debilitates me, but the surgeons say my back is no worse than anyone else my age and attribute my pain to fibro. All I can get are the occasional back injections but that is not enough. I am hoping a string treatment will be discovered soon.

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pollyperf | @pollyperf | Feb 4 11:03pm
In reply to @lwmarcrum "If by any chance you’re going to the Jacksonville FL Mayo location, I highly recommend Dr..." + (show)
@lwmarcrum

If by any chance you’re going to the Jacksonville FL Mayo location, I highly recommend Dr Anushka Irani (rheumatologist who specializes in fibromyalgia) and Dr Barbara Ruff (pain psychologist who runs a 2-day workshop on managing fibromyalgia).

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I’d be interested is what exactly they can do for you? Not being sarcastic, just haven’t heard of anyone getting a goodly amount of relief unless maybe on actual pain meds.

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1 reply
lwmarcrum | @lwmarcrum | Feb 5 10:02am
In reply to @pollyperf "I’d be interested is what exactly they can do for you? Not being sarcastic, just haven’t..." + (show)
@pollyperf

I’d be interested is what exactly they can do for you? Not being sarcastic, just haven’t heard of anyone getting a goodly amount of relief unless maybe on actual pain meds.

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They can perform tons of tests to rule out everything else, discuss different pain med options with you, and then the 2-day class focuses on non-pain med options.

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1 reply
pollyperf | @pollyperf | Feb 5 10:42am
In reply to @lwmarcrum "They can perform tons of tests to rule out everything else, discuss different pain med options..." + (show)
@lwmarcrum

They can perform tons of tests to rule out everything else, discuss different pain med options with you, and then the 2-day class focuses on non-pain med options.

Jump to this post

Had tons of tests, attended class, tried most everything doctors wanted me to try and cough tolerate any and live a normal life. I was in a Naltrexone study at Stanford 16 years ago and it did exactly opposite for me than what it was suppose to do. 25 years now and just work closely with my doctor who gives me actual pain meds to use ONLY WHEN ABSOLUTELY NEEDED. Everyone is different and hope something works for you.

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