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

Responses: 384

By , About.com Guide

Updated September 14, 2009

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Burning Numbness

The sparkler pain turns into what it feels like when you put your toes in warm water after being in snow too long. A burning numbness. i cant even move my arm. I got celiac disease first. I believe the fibro may be related somehow. (autoimmune?) My tailbone is so painful I dont drive or ride in cars much. These both leave few ways to rest. I know people dont belive me - even my own husband sometimes. I had one dr. ask me (by letter-chicken) to leave his care. I lost my job. I was told its not progressive. Ha! Yeah, I'm angry. Who wouldnt be and depressed? The PAIN IS THE CAUSE OF DEPRESSION! Who am I now? I have good days, but today isnt one of them. I dread the coming cold. I'm going to try massage and maybe grief therapy. Reading a good book, Coping w/ Chronic Illness. Oh yea, a glass of wine is very helpful. Wish it came in a pill. Thanks for letting me vent...
—Guest somuchmore

I cried, as though someone understands

Most of the time w/my fibromyalgia; I have over all pain, in my early and mid 30's my skin was on fire, and just touching me hurt. I'f had that 4 of July sparkles, people would look at me funny because of the over shaking of my hands. Then those wonderful times when - I was dizzy and sick to my stomach or that canon was shot into my stomach. The earliest signs was TMJ and then the burning skin. I wasn't diagnosed until 47; you cannot imagine how alone I felt for all those years "when I had nothing wrong with me" This was a printable article to show those that care what and how I am.
—Guest Dawn

Will this ever end?

I am a 70 yr.old female who has all of the aches and pains listed; I also have Lupus. I can't tell which is causing what pain. There are days when I tell my husband if it weren't for my ear lobes I would hurt all over. I recently had chest pains so bad that I had to be hospitalized. Drs thought I had a blood clot or was having a heart attack. I had acute fibromyalgia throughout my entire chest cavity. Pain was terrible!! That was over a week ago and I still have pain, but not as bad.
—Guest MJM

I'm not crazy!

It is very hard to get past pain when every breath feels like fire. I get the migraines and the scalp/skull pains. I get the fibro-fog. I get pains everywhere (despite fibro meds) - but the worst is my torso ... every breath is searing pain. It is all-consuming when every breath hurts ... I think I could take the body pains, if I could just breathe! Can't wear bras anymore. Burn up most of the time (like on fire) - think my thyroid will never be right. Wish my doctor could feel my symptoms every time I thought about him! If he/she could only feel our symptoms, he/she would certainly have more compassion and "new ideas" on what to try. Heart goes out to you all!
—tervlover

OMG

As i read this I have tears in my eyes I can relate to absolutely everything everyone is saying except I have no pain in my face not severe anyway just slightly in my jaw. I have a Drs app this wendsday for the first time in years I decided to go to the Dr. and see what is wrong with me. I came to this site researching lyrica. My husb takes lyrica for some nerve damage anyway the other day the pain was so bad I could barely move the radiating pain in my neck shoulders and back was horrible, I had a headache and couldnt sleep. my husb says lyrica puts him to sleep and tld me to take one, so even tough we shouldnt self medicate i took it and I have been taking for a few days and feeling better. Anyway read on the web site that it is used to treat fibromyalgia and researched it. Here I am, feeling, knowing that im not crazy that my lost of words could be related to brain fog and that my pain is not bone cancer like I feared lol.everything here describes me to a T I am so glad I read this
—Guest nayla

Burning like on fire with tingling

Ill just be lying on the couch and my arms start tingling. they feel like they are paralyzed but i can feel the pain. its so frustrating. My doctor now doesn't believe me at all. It also happens when i am driving, i am afraid i wont be able to drive soon. i was diagnosed when i was 21. I am now almost 31. Been trying to get disability but because my age they denied me. i now have a lawyer and hoping they come through for me.. I have two boys and i feel so bad i don't get to do much with them because i hurt or am tired all the time..
—Riverdaye

Still undiagnosed

The most pain rides through my hips. Lower back and all down my legs its constant, somedays worse then others. But i hurt and ache all over in my neck across my shoulders, my arms. I also have muscle spasms that hurt and happen all over and last what seems a long time. All my joints hurt constantly and they crack and pop everytime i move them (that hurts) it feels like the pain starts right at the bone and radiates out. My lymph nodes in my neck and under my arms swell regularly. I get all kinds of headaches all the times some times they last for days. My stomach hurts terribly very often its a searing stabbing pain also in my low abdomen.' I get faint and light headed. I also just get these days where i cant get anything done i forget everything, i feel drained no matter how much i want to get up and do. Now a new thing is on my right abdomen and back/inner thing when its touched it feels like being rubbed with sandpaper
—Guest Miranda

Too Many

I have fibromyalgia and rheumatoid arthritis. The fibro gives me pain throughout most/all of my body. My most pain occurs in my hips, lower back, and my legs: all of these make it difficult to walk. However, my entire upper body hurts as well, especially my neck, shoulders, and upper arms. I experience migraines regularly due to the disease. I also have irritable bowel syndrome from it: this causes a lot of painful cramps in my stomach, large and small intestines, and colon.
—Guest Arlene

When will the pain end?

I was diagnosed 5 years ago with Fibromyalgia, it started with what I can only describe as pain through my hips like red hot pokers going through them at different directions, then the pain would go into my lower back and thighs, my legs would burn up like they were on fire. The sensation on my scalp is burning and really tender to touch, 2 years a go I thought I was having a heart attack, the pain in my chest radiated through my left side of my chest into my arm and shoulder upto my neck. I was diagnosed with costochondritis, this is the worse pain ever, every day I can't touch my chest for the pain, the throat pain is a shooting pain like a spasm, this is scarey cos I feel like my throat is going to close. My legs feel swollen and my right calf aches.
—Guest DonnaUk

Yup it's hell

I experience most of the types of pain/symptoms listed. The worst is at the base of my spine, I feel like there is a blow fish there and it radiates the pain out from there. I also have myofascial pain, my face is numb and have to sleep alone because any movement in the bed causes me pain. I was diagnosed 3 yrs ago but have had synptoms since childhood. I have to wear clothes 2 sizes to big and can't wear a bra anymore. It has caused 10 of my teeth to fall apart. I get floaters in my eyes and my near vision keeps getting worse rapidly, while my distance vision has been only slightly affected. My immune systems is shot and I get bronchittis every other month as well as sinus infections. Is there a standard for determining pain level? The one my dr. office uses doesn't seem appropriate. My daily pain level on all of my meds I would rate as an 8. According to her it would only rate as a 5.
—Guest ddebru01

mary

I haven't been diagnosed with fibromyalgia. I am tired and achy all the time. Sometimes I get a searing pain down trhe upper parts of my legs. Feels like molten lava pouring down. It last for about 10 minutes and subsides. Extremely tired at work, falling asleep while driving, just can't stay awake. Fine after a cat nap! As long as I'm moving, I feel okay but when I stop and start again every part of my body screams at me.
—Guest Tigerrose

Face Ache

I recognise all the symptoms + disciptions of various pains ( could'nt have put it better myself ) but the pains in my face have really got to me lately . It feels worse than Bells Palsy that i used to get as a child , thankfully its on one side ,the left .It feels as though my face is on fire with severe shooting pain through my eye + ear . I dread dental work as one session she just could not deaden a facial nerve ,the more she tried the worse it got . I could not believe the degree of pain from one tooth ,she ended it by giving me a ' magic jab ' i was so doped my legs gave out + hubby had to carry me to the car . The pain after any dental work goes on for several weeks afterwards .
—coronia

Rattled Nerves

It seems that I have to keep the TV down and the lights low at times. They have a tendency to bother me. I thought it might be connected to FB somehow. Go figure!
—Guest Jo

Fighting Back

I'm a 32 y.o. male and have had FMS since 17. It's all over but the leg spasms and back pains are the worst offenders to my quality of life. Sharp pains down my leg bone, and a back that can't even be touched sometimes without feeling like I've been injured. The 'fibro-fog' is also a constant bother, making me feel like my head is wrapped in gauze and I'm just plain stupid and/or forgetful. Everything hurts all the time, and sometimes the worst part is having to deal with people who have no clue or possible understanding of how much pain I'm in sometimes. Here's the part that will either make you hate me or stare in awe... I have and will always be a martial artist. Yes I hurt, but exercise is proven to help keep fibro at bay, and I'm building a Great Wall. The more I was in pain the less I wanted to move. The less I moved, the more often I was in that kind of crippling pain. The more I forced myself to work out and do kata, the better I felt. Might as well make it a good kind of pain
—Guest Ely

Burning

I always have a stiff body, all over dull aches, crawling skin sensations, and worst of all, a feeling of burning in my back, arms ,legs.Also I'm always tires yet have difficulty sleeping. I used to have so much energy and life, now, it seems like all joy is gone.I am waiting for a RA confirmation that no one agrees upon.
—Guest laurie

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  5. Fibromyalgia Pain - Types of Fibromyalgia Pain

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