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Readers Respond: What Types of Fibromyalgia Pain Do You Get?

Responses: 427

By

Updated September 14, 2009

Fibro-hell

This unknown but ever so documented condition has taken my life as I knew it and love it. It is it's own definition of Hell-on-Erath. 6 years and there is very little of the person I was that greets the day in fearfull pain and ends it in fear of sleep that hurts enough through the night to wake me screaming. Neighbors love me then. But, they don't know me even a little. Who would want to? I never knew depression existed so horridly. But then, I never knew what Fibromyalgia was, untill a year on chemotherapy left it's gift. An extremely lonely disease, meds only brush the top of the mountain. My pain is daily, nightly and any time in between. I recognise the descriptions well along with others that are fearfully overwhelming. Going on 7 years and have no idea how I have done it...Badly I am sure, but I am still here, too embarrassed to talk about it because nobody understands and certainly don't want to stick around and see it take me away.
—Guest Betsy

Joyce Moore

this is very extremely overview can now explain miy pain w/doctor and seek another rheumatologist.
—Guest Joyce Moore

Stolen life

FM steel my life :(( İ have all the pains i read in here and use lyrica 150 mg for all my pains but this medicine is not enough for me because of FM İ am always at home have no friends and broken nerves İ feel like İ am the most unhappy person in the world :((( the most pain is in my back and legs also it burns my skin . İ am 40 years old woman and live with this since around 20 years have nobody around me who can understand me all İ can think is dying but it is the greatest sin so İ can not die can not live too... :(( what İ have supposed to do? :((
—Guest Quitscream

Somehow conforting to be validated.

I wish the world at large understood that this is very real. So many people still brush it off as 'all in your head', even doctors think it's 'just' depression, which I also have along with diabetes. So is the nerve pain due to the fibro or the neuropathy?? I'll never know for sure.
—fischerpat

My pains

I suffer every single thing mentioned here. I do feel totally bruised all over from head to toe. My scalp also hurts to the touch. Comforting to see my symptoms listed by others.
—Guest Shari

good days and bad days

Both my sister and I suffer fibro. I consider myself one of the lucky one who has some painfree days but most days I have some pain. I also suffer from cronic neck pain and arthritis so its hard for me to know what the cause of my pain is sometimes. I have lost friends and boyfriends but now have a few friends that take me as I am and understand when I cancel on them. I also have a new boyfriend now who has his own health issues and understands me and we sometimes sit and moan together. LOL I am so glad to have found support online and I now understand what goes on with me much better and that in its self makes me feel better. I just wish I could find a doctor that knew more about fibromyalgia as most don't even know what it is.
—Guest Geraldine

it's all in your head!!!!

Yup for 8 years I was biopsied and exrayed and cat scanned you name it. The only thng they could tell me for another 5 yars was there s nothing wrong with u, t's all in your head. Well. Was finally diagnosed. Thank God I knew it was real. I was once told. Had a blood clot in my lung because of the sharp knfe in the ribcage pain. And. Have spent. 8 to 12 days at a time in bed unable to move even my neck I couldn't turn it was unbearable to try and roll oer to my side. To explain the pan well you have all done that well. It hurts so excrusiating that I just sob quetly because even that hurt to do. I prayed for strength and willpower to get out of bed for some relief for a bit. We all must keep hoping for research to find better and better remedies. The older I get the worse it gets. Thanks for listening. I pray for all of you.
—Guest deewebb50

I'm with you all

Yes, to the pain of wearing glasses because, in my case, of end-stage TMJ. Also, life-long throat soreness, migraines, sensitive to light and noise, panic disorder, very cold with normal thyroid, PTSD dx, neck pain, hypermobility, osteo. New severe pain at base of skull. I was finally dx with fibro at age 51 (now 54), managing with 25 mg nortryptylene at night. Need something for day pain. I exercise daily and stopped working recently, longing to get back to a part time job. The worst symptom? I reckon is fear: the fear of the pain returning. Until I started meditating and reading how to handle chronic pain (that is, realising it will subside), I lived with unbearable fear. This is what the doctors do not understand nor treat: the pain is beyond a '10' at its height and it is like riding a long and hazardous wave. Thank you all for sharing, this is the best service Adrienne. We must support research so our children have better options. Peace to you all.
—Guest Zia

widespread pain

my neck and back pain keeps me up for days if my legs are aching it makes it harder for me to sleep I get confused, dizzysometimes I have issues with spots in my eyes and blurry spells the muscles in my back tense up so bad that it pulls my head back sometimes I have sharp shooting pains other times it deep achessometimes it hurts to put pressure on my feet when I first wake up on top of the fibro I also have two pinch nerves and arthritis in my lower back fractured my hip 2 years ago I have a hard time walking on it, my hands and feet swell and can be quite painful to touch be pain level varies location widespread and it is an everyday occurrence
—Guest m.mitch

FIBROMYALGIA PAIN

I AM READING SYMPTOM AFTER SYMPTOM......THESE SOUND ALOT LIKE MERCURY TOXICITY TO ME. BURNING TOUNGE, BURNING HEAD NECK. SPINE. HAS ANYONE BEEN TESTED? DO ANY OF YOU HAVE A LOT OF "SILVER FILLINGS" MADE UP OF 50% MERCURY? I MUST WARN YOU AHEAD OF TIME DOCTORS KNOW EVEN LESS ABOUT MERCURY TOXICITY THEN THEY DO FIBROMYALGIA. I HAVE SO MANY SYMPTOMS LISTED IN THESE EMAILS. DOCTORS ACTED LIKE IT WAS ALL IN MY HEAD. AFTER MANY DOCS ONE ASKED WHAT I DID FOR A LIVING. I WAS A DENTAL ASSISTANT....MY MERCURY WAS OFF THE CHARTS. CHECK THIS FOR YOURSELVES I AM SURE SOME OF YOU ARE SUFFERING THE SAME AS ME.
—Guest KAREN

Gail

I was diagnosed first with Erythromalagia. That is where your hands and feet burn very badly and they turn bright red or dark blue, with tremendous "sparkler pain". I was diagnosed with Erythromalagia, this is a very rare condition. Then I was told I had Peripheral Neuropathy and then I was told I also had FM. I am not a Dr. So I am only surmising that all of these conditions fall under the main category of FM. I have terrible pain in my right lower back that goes over to the right buttocks and down my leg, I have been through pain stimulator implant, cortisone shots, pain pills and am now on mega doses of Gabapentinto help control the pain. The only thing that really works are the narcotics for pain. Every side effect that can be listed I get,blurred and double vision, exhaustion, IBS, which is another type of disease that makes you a prisoner in you own home. I have been through Stanford's pain clinic, Now starting the pain management program at UCSD. Any more suggestions of where
—Guest Gail Leach

full of pain

wow.. it took the dr.s years to diagnose me.. I thought I had lupus, RA, diabetes, and everything else u can think of... took 11 years of pain to get a diagnoses.. you have explkained every pain I have.. even the restless leg syndrome that hurts me everytime the legs are a shaking.. i went to a gym to get exercise and got a free session with a trainer.. bad idea.. he didn't think about my fibromyalgia and after that session i could hardly walk for over 2 weeks...and i had been doin good walkin on treadmill daily.... i do alot of walkin at work and i struggle daily..
—Guest sandra

OMG you nailed it!

I have read everything I can get my hands on trying to deal with the FMS, but nowhere has anyone nailed it like you did in regards to the noise, crowd (rattled) description. I thought that was me losing my mind! Now the voodoo pain, question, I have gone through that but in the inner of my wrist once while I was driving, it was so bad I pulled over and actually "owched" each time it happened,and a very loud ouch I might add...has anyone else ever heard of such a thing?
—Guest AmyLou

rosalyn

I have an appointment at the pain clinic for counselling to enable me to cope with back pain, this was the result of a motorbike accident. When attending the first appointment and being assessed, I was asked if anyone had mentioned at any time, if I had FM. I said that my GP had said this about 15 years ago, but nothing had come of it. My pain is now over all my body but my elbows and shoulders being the worse to touch. The tiredness is awful, that has come on recently, I am already finding that it is restricting as when making plans I don't know what kind of a day I will have. Some days my legs feel as if I am walking through treacle which I find frustrating. I am hoping for help when I get to my appointment but on reading about everyone I am not expecting miracles. Also the twitches that move around the body frustrate me most when I am typing as I have to make sure everything is correct, my fingers have a will of their own and add extra letters!
—Guest Jules

Dr. Suspect Fibromyalgia though unruled.

I am 20 years old and have been experiencing the worst and presumed abnormal body pains for almost a few years now. Particularly in my lower and upper back in just about the exact same location on each side of my body. The area in my upper back is sore constantly all day everyday and radiates in the area of my shoulder, neck and back bone. The same with my lower back. My spine usually feels like there is pressure or something heavy lying on it (not really painful but agitating and very uncomfortable). The inside bones of my face, jawline, cheeks, chin, and all around my face also feel bloated with pressure (not sinuses) and ultimately it feels good when massaging these areas although it doesnt even momentarily remove the consistent pain and is always present. When massaged in the tense constant, tense, sore areas, my muscles jump and throb almost as a sign of relief but still remain sore and tense. Truly exercise and when I do go times eating healthy is the ONLY time they feel better.
—Guest Cute2bitsweet

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What Types of Fibromyalgia Pain Do You Get?

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