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

Responses: 427

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Updated September 14, 2009

Ouch

I often times think that i might become crippled from fibromyalgia. I am scared but God keeps me going through all of this. I have read many of the stories here and I feel the same way. I just touch my legs or arms and boy do I hurt. It took a good amount of Dr.s to finally have one listen to me and tell me what is wrong. I went through many blood tests and was checked for lupus and ms which they found nothing so of course it was all in my head right? WRONG I have fibro. What can I say but boy howdy do I hurt at times like no ones business. I cry at times because of the pain and I can't take nothing for it because in all honesty nothing stopes the pain. So I just live my life and try to stay positive the best I can and I have some wonderful parents and a sister who is very supportive in all of this.
—Guest shannon

About so-called fibro pain.

I'v been diagnosed with fibro and CFS/ME. I've recently been diagnosed with Dercum's Disease and lipedema. That is more consistent with my pains. Dercum's is lumps, lipomas that cause pains all over, all types of pains. Lipedema is what I believe causes the sensitive skin on arm pains. and the sensory overload is from neuro-mediated syncope or POTS! What happens is your body gets messed up with stressors and your blood pressure raises and drops too much. It's called Dysautonomia, a dysregulation of the autonomic system. The doctors are not diagnosing properly and are too lazy to figure it out. I kept seeking answers and I've finally got them. Check out all the things I mentioned. It will open a can of worms for you! And don't expect your doctors to know about this stuff, they think it's so rare that they can't belive someone has it. There are some special docs you can find on the internet, but you'll need to do your homework Good luck!
—LindaMarr

Private Pains

After being diagnosed, I started looking back into my past and found so many times where I would go for this treatment or that test, all for unexplained pain in the back. All the other pains I just shrugged off like, oh, over-use or strain or even "normal". After reading about the suffering so many are experiencing, I see that it all fits together in that ugly fibro package. What amazed me are the extremely "private" symptoms I have experienced for so long: no libido, vulvadynia, and such. And then today I read about costochondritis- Which I am experiencing as a major problem. I can't even sit for very long without feeling like my ribs and rubbing against each other and are ready to pop out of my chest! Fibro fog is giving me a hard time at work, too. I am nearly 60 yrs old and just within a month was diagnosed. Thank you for the great articles that touch (gently) all the right spots!
—Guest Sistersister

ladies and gentlemen...

I got in the shower this afternoon at 1pm and cried...for the exhausting agony of fm.. the sneaky pain...and for the lack pain relief among us who suffer. I've been diagnosed with fm since Jan. I've been a recovered alcoholic for 25 years, and a diamond setter and custom goldsmith for 35 years. The latter caused my fibro and arthritis in my spine at the base of my head. I can tell you that I have been sober for 25 years, and in complete control of my emotions for 25 years. Yes, I have emotions, and I get angry sometimes; but as a recovering person,I am not allowed to hang on and let emotions fester. I think that some the doctors turn the fault of the disease around onto the victim. That just wastes our time. Lets figure out this disease. PS . The little finger on my right hand went numb today. It's always somethin' MissMB
—MissMB

I am a Diagnostic Person

I identify with the voodoo, all over at different parts of the body and my for my pain is called the tuning fork pain. It is like have a tuning folk under my skin.
—LuannM

Undiagnosed- Laundry list of symptoms

I can related to most of the pain described, except the sparkler one. I'm 21 years old. I have the follow symptoms: Pain in chest, mimics a heart attack Easily Bruised - Sudden unexplained bruises Hair loss Hemorrhoids (I use to get nose bleed every day for about 45 minutes lasted a few years) Morning stiffness, widespread pain Sensitivity to light and cold Fribro-Fog (I feel slow, like I just can't think, short term memory is terrible) Poor balance, dizziness Panic attacks, unexplained irritability, Mood swings, Tendency to cry easily. Night driving difficulty Pelvic pain, abdominal cramps, IBS- Pain with lightly touch, same if hair is being pulled (tension) Skin feels like it's crawling constantly Vision problems Chronic tension headaches - daily Broken sleep pattern, still tired in the morning. Loss of libido Menstrual problems I would say a lot of my symptoms have worsened since being pregnant.
—Guest Danielle DW

fibromyalgia pain

I have pain everyday, cannot hold my arms up to do my hair. I hurt all over arms legs feet hands. I have McArdles which is s muscle disease and blamed it on that. I have also been told I have sjogrens disease along with fibromyalgia. I now know from reading these articles that my pain is from fibromyalgia pain. the only pain I have that I cannot figure out is my big toe. it dosn't look like it should hurt but it does it came on slowly now it burns like nerves are paining. I am also tired all the time. I get 6 hrs of sleep at night but that dosn't seem to do anything. My family want me to stop taking all meds. I think its because I have been in a fog. I didn't even know about fibro fog before. I am at the point of giving up with drs and just sleeping the rest of my life. It seems no one understands,.
—Guest irma mcbreairty

not diagnosed

If I don't have fibro then I'll be very suprised. I've read many of your posts and haven't touched surface,yet I see myself in so many of you. I began suspecting something was up when I began having random sharp pains back of the head.Just like a bolt of lightening.Pain changes places constantly so Im never shocked at a new spot,bottoms of my feet are always sore,burning except when I first get up after a nights sleep.Lately I have pain in my right hand so bad I can hardly lift a simple dinner plate.It's right in the middle of my palm. I could go on and on but just reading all the posts,I wish I could convince my family doctor to send me to a specialist to confirm or deny if I do or don't have fibro.
—Guest Ann

muscle grabs and phantom bites

I call them muscle grabs, when you are moving and all of a sudden your muscles bunch up in a ball and you loose the fluidity of your movement. Like somene just took a bunch of muscle, tendon etc. And grabbed them into their fist, held an for a minute and just as rapidly let go. It looks weird when your walking along and suddenly your legs tightens up and you lurch or limp for a step or two. The other is the phantom bug bites or spiders crawling over your skin. I find myself swiping or slapping at spiders or mosquitoes that aren't there. Or randomly shaking my pony tail across my shoulders. Or rubbing the back of my leg with my foot. All very sudden odd and random movements with audible exclamations, "ah!" "hugghh" "ow" , that family and friends have learned to ignore. New friends are trained quickly, they ask : "What's wrong? " I answer: "nothing" "just ignore it" "I didn't say anything"
—Guest nina

Isolated with pain

I agree with the guest who mentioned loneliness as pain. I too have become very isolated, not by choice. I hardly hear from friends. I'm not invited to events anymore. This has been a very hard road to travel. I'm in the prime of my life and career which both have come to an abrupt hault. It seems that my pain really flares if I over exert myself, stress, lack of rest, diet, certain times of the month for starters. I'm still learning about my diagnosis of FMS and the changes my body continues to make. Vit D 2000 IU helps some. My body has become sensitive therefore many medications cause reactions. Thank you so much Adrienne for this web site.
—shonest8

painomama

I have had fibro for 15yrs. As i have gradually gotten worse. Oh I know that we are told it isn't progressive. I can hardly walk anymore,because the pain in my legs,hips and legs hurts so bad. My hips give way and I fall if I can't catch myself. I'm now in a wheelchair half of the time.
—lyndagrz

Fall off a Mountain Pain

What about the intense pain all over that feels like you fell off a mountain and bounced off hundreds of rocks and are bruised everywhere. And if you are touched, it hurts like a deep bruise and the pain increases after the touching stops for up to 15-20 minutes.
—Guest CoralBo

Getting there

It took me 18 months from doctors to hospitals before i was finally diagnosed. Those months were the worst, i was lucky if i managed to get to hours of sleep a night. I do feel lucky now however, i am on Amitryplin (sorry bout spelling) and apart from constant stomach cramps my other pains are short lived and managable. The sensatory anxiety is annoying to say the least, i can only sleep on my stomach. Thankfully i have alot of support from my family which is paramount to my coping.
—Guest DoinOk

I got it ALL and I HATE IT!

D'nosed in '98 and this stuff is gettin' worse,with age(i'm almost 55).I've lost all my friends,my career and I live to go see doc to get my meds.Once inawhile,I'll have a good set of 4-5 days,then it's back to square one. I hate this disease.I'm known as the 'UNTOUCHABLE',behind my back cos I've had to beg off TOO much,and not be hugged by those who do care.My husband is the only one I let get near me and not alot of that!I want my life back.I feel like a burden and that's not something I ever thought I'd be.
—Guest Sherjo44

White Pain

Never have I read anything that describes what we go through better that this article! Thank you Adrienne! I sent this to my husband because most of the time he just doesnt get it, he doesnt even try to educate himself so he understand and that really hurts. Like he doesnt believe. What you describe as been sparkler pain I call white pain. Sometimes that can be the worst next to the achy all over feeling. Keep writing I love your articles!
—Guest creckerd

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What Types of Fibromyalgia Pain Do You Get?

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