Fibromyalgia, how does it feel?

[sammycung]

Hi, i just would like to hear from people who actually have this disorder, not what people have read off the internet. Thanks. What i would mainly like to know is how the tingling of Fibromyalgia feels, like where do you get it, how often to you get it, describe how it feels and also, how is your pain, do you have Allodynia as well as Hyperalgesia? Do you get Hyperalgesia at all? Please answer!
Thanks, I will choose a best answer!

[Deercandi]

I am 61 yo and was diagnosed 12 years ago. I have all the classic symptoms described by you all and then some. I stopped taking pain pills after my Doc prescribed medical marijuana 2 years ago because it is much more effective than the pills. Plus the affect only last a short time, unlike pills, but the pain and tightness might be relaxed for an hour or more.

I never thought I'd smoke pot, but am glad my doc recommended it. I am currently in a a state which makes it difficult and very expensive to get medical marijuana, so started taking pain pills again as needed. Tried not to go back to them, but a few weeks into it, I felt I had no choice.


If any of you live in a State that allows using MM I recommend that you talk to your Doc and give it a try! It has changed my life!!

[bamabred]

Some reason i read all posts,i have fibro.,lupus,hep.c,3 pretruding discs,compartment syndrome in foot,and body beat all to he## (been mechanic for 36 years).I will pray for all,please dont give up-there is a light at the end of the tunnel-or so they say-when and if i find it i will let everyone know.Keep on keeping on,in my prays......Danny from alabam :)

[starrlynn]

I have severe fibromyalgia with osteoporosis, degenerative disk disease and severe scoliosis, if you were to take a rubber band and twist it around your fingertip, where the fingernail starts, and keep twisting until it is so tight the end of your finger turns purple and then touch your finertip together with your thumb, that is the feeling of fibromyalgia and I have it all over my body with it being the worst at the neck and down the outside of my legs and my back, I cannot wear clothes with many seams because the seams touching my body is very painful, as when you touched your fingertip to your thumb with the rubber band trick I told you about, I also have some pinched nerves in my back so my right foot has been cold, tingly, feels like a dagger twisting into my ankle bone, sometimes the dagger is so hot it feels like my foot is burning, sometimes it's so cold it feels like my foot is in an icy river. I have had to sleep with my foot on a heating pad for 11 years, surgery is an option but not one I want to take, if I have surgery I will be left with no feeling at all, and I don't want that I'd rather be in pain than chance hurting myself worse because I can'r feel things. Fibromyalgia really ***** for me because when my muscles are that tight they feel like they are crushing my already weak bones, in the past months since May I have broken two bones, I have a prescription for medical marijuana which relaxes those muscles so I don't feel wrapped like that rubber band, so tight. I can stretch out to my full potential and can take good deep breaths, only problem is it's so expensive I can only afford about a 10 days supply each month and the rest of the month I just have to suffer. I have to sleep on my right side and cannot have any seams down my leg or it feels like a knife sawing up and down the length of my leg at night when I sleep , sometimes digging in if I lay in one position too long. If I take prescription drugs the only thing that rids me of the pain makes me an idiot, so I don't want to take those either, if you can afford medical marijuana and you live in a state where you can get it, I would highly recommend it to you, I only hope you can afford it better than I can. I've been in pain from my bones since the day I was born and my muscles have gotten worse every year too, I am 55 years old and the medical marijuana has given me the only relief I've ever really had that doesn't make me a mindless fool and sadly I cannot get it as I should have it. I could go on forever, if you want more information I'd be glad to give it to you, just drop me a  note or post it here and I'll get right back to you.
Thanks for listening,
Deb

[starrlynn]

I have severe fibromyalgia with osteoporosis, degenerative disk disease and severe scoliosis, if you were to take a rubber band and twist it around your fingertip, where the fingernail starts, and keep twisting until it is so tight the end of your finger turns purple and then touch your finertip together with your thumb, that is the feeling of fibromyalgia and I have it all over my body with it being the worst at the neck and down the outside of my legs and my back, I cannot wear clothes with many seams because the seams touching my body is very painful, as when you touched your fingertip to your thumb with the rubber band trick I told you about, I also have some pinched nerves in my back so my right foot has been cold, tingly, feels like a dagger twisting into my ankle bone, sometimes the dagger is so hot it feels like my foot is burning, sometimes it's so cold it feels like my foot is in an icy river. I have had to sleep with my foot on a heating pad for 11 years, surgery is an option but not one I want to take, if I have surgery I will be left with no feeling at all, and I don't want that I'd rather be in pain than chance hurting myself worse because I can'r feel things. Fibromyalgia really ***** for me because when my muscles are that tight they feel like they are crushing my already weak bones, in the past months since May I have broken two bones, I have a prescription for medical marijuana which relaxes those muscles so I don't feel wrapped like that rubber band, so tight. I can stretch out to my full potential and can take good deep breaths, only problem is it's so expensive I can only afford about a 10 days supply each month and the rest of the month I just have to suffer. I have to sleep on my right side and cannot have any seams down my leg or it feels like a knife sawing up and down the length of my leg at night when I sleep , sometimes digging in if I lay in one position too long. If I take prescription drugs the only thing that rids me of the pain makes me an idiot, so I don't want to take those either, if you can afford medical marijuana and you live in a state where you can get it, I would highly recommend it to you, I only hope you can afford it better than I can. I've been in pain from my bones since the day I was born and my muscles have gotten worse every year too, I am 55 years old and the medical marijuana has given me the only relief I've ever really had that doesn't make me a mindless fool and sadly I cannot get it as I should have it. I could go on forever, if you want more information I'd be glad to give it to you, just drop me a  note or post it here and I'll get right back to you.
Thanks for listening,
Deb

[Rapture123]

I ws recently diagnosed but have had it for 4 years, I'm 26.  I thought I was crazy or just had a low tollerence for pain but in reality I have a high tollerence because I'm in pain all the time so minor things like walking into a doorframe during a fibro fog hurts a little less then it would to others.  I started writing down stange "symptoms" about 3 years ago and have been tested for everything. Al tests came back normal or negative... " there's nothing wrong with you" or " on paper your perfectly healthy"  finally I went to see a rhumatologist even though all of my arthritis tests came back negative... I told her every symptom even if it was weird to me, hypersensitivity to senses like smells sounds light etc.. All over bruised feeling, anxiety and depression (especially pre menstral) insomnia, exausted demotivation, tingling, numbness, lingering pain after being touched, weight gain, hives on face and neck, clumsy dropping everything, inability to exercise without amplifying all of the above.... I could go on forever but basically right now I'm on flexerall to sleep and loosen up muscles and I take Tylenol in the morning and an aleve in the afternoon, I don't want to take cymbalta or lyrica I'd rather take something natural... Does anyone have any suggestions of ways to slightly alieviate some of the symptoms?

[mommamunchy]

Living with fibro is not fun at all i have problems getting out of bed inthe mornign sometimes i nbeed my girls to help me get up after i walk a few feet then i can get moving still able to dress myself most days yet s=after work i need my girls to help me remove my shirt where i hurt so badly in the upprer back ares between my shoulder blades,use to cry about the painnow am just angry about it, i didnt know what was going on withme until my family docotor explained to me what i had have been reading about it now and yes all it says has been going on with me yet am a fighter and wont stop working find other ways to dealing with things i am no longer able to do, started takeing new meds today so in time will tell if they help sorry if i make mistakes cant look at the screen it is to bright for me at thismonent feel drowzy lol 1st time in months i feel sleep and relaxed yet i need it and i know the only time i will get great sleep is when aug 11thcomes around and am knocked out for the caroel tunnel operation i am having on my left hand alot of things to worry about missing work coming ahead wondering how am i going to pay the bills with out being able to work during this time so stress adds a big part into this stress levles and or pain youmight be having,i cant say i am depressed cause i am not crying nor sad just angry about why i have it,i do not wish this **** on noone in this world the acking and throbbing pain is sometimes unbarable to deal with and forget about driving in a car for about an hour hard to get uop to start walkking again then speed picks back up then you can walk aghain.,i refuse to give up fopr my 2 girls am strong and plan to fight this wont off myself just for pain not saying i havent thought about it the girls keeps me alive soam not wrried about bad thought.take care hun and god bless

[sammycung]

WOW, all you poor people, thanks you for sharing your stories, i feel i have a lot in common with all your symptoms. xxx thanks again

[RNRita]

I was diagnosed with fibro 22 years ago after a car accident.  Out of the 18 trigger points I believe I have 14.  My muscles take turns hurting, but almost ALWAYS my neck and shoulders.  My lower back hurts a lot and my right hip.  I have aches like I just worked out.  I get tingling down both arms and legs, in my feet and fingers.  The top of my feet feel like the nerves are on fire and it hurts to wear most shoes.  I have brain fog like no other.  Migraines, IBS, anxiety...there are a lot of things that can go with it.  Fatigue, dizziness....just to name a few.  I am not on any meds for it.  I just kind of live with it and live for the good days.

[grendslori]

I can really relate to a lot of what meme56 wrote. This pain is a lingering pain. If I'm touched, even slightly, I hurt for 5 minutes or more in the spot that was touched. My neck and shoulders are probably the worse for me and the hips hurt when I lay down as well which makes trying to sleep difficult. When I'm trying to walk, they ache so bad, it's a nightmare to try and walk anywhere. I was diagnosed a few years ago and this has gotten so much worse for me. I'm exhausted all the time, I feel like I have been swimming for hours without a break. I was put on Lyrica which I think of as the drug from H***. I can't tolerate that drug at all! As bad as this is, I try and stay off of drugs because I can't tolerate them very well and i question what they are doing inside of my body, if my body doesn't function very well when I am taking the drug. I tend to be extremely dizzy on the drug, Lyrica, I can't speak correctly, words are said out of my moputh that are different from the words I'm wanting to say. I have a hard time writing on the computer, I don't recognize the spellings of words, I leave the checkbook balancing to my husband. Those are brain fogs to me. In the morning I am always stiff, my hands don't seem to work right which is frustrating. I have no strength left in them.

[meme56]

I agree with most of what I've read from other people. The poblem with Fibro. is that often diffrent people hurt different places. Not everyone has the same symptoms exactly. For me my neck and shoulders hurt constantly. When I first wake up of a morning my legs and feet don't even want to work. IT takes a while for everthing to start functioning. The tingling I experence in usaully in my right hand and arm. They will feel like the are asleep this happens mostly at night. One of my worst problems is getting enough sleep due to the pain. I am on a LOT of medication to help me sleep, because is I don't get plenty of sleep I walk around in a fog all day long. The kind of tired that comes with fibro. is hard to describe to someone. It's not like you need to sleep, yet your whole body feels like it is weighted down and it takes more energy than you have to do anything. Sometimes  I will wake up at night and my hip will feel like I've been sleeping on rocks. Another problem I have had a lot of trouble with is Irritable Bowel Syndrome. This is also one of the problems with Fibro. The last thing I have a lot of trouble with is running into door frames. I have trouble judging distances. I notice I more trouble with this when I'm having fibro fog. Hope you find what works best for you. Hugs Rita

[Kitty76]

Hi Sammy, I'm 32 and have had firbo for a year now ( it all started for me with a very mild flu ) I don't get the tingling very often these days but have had it in areas on my arms, legs and feet. When I first came down with this I had tingling in the back of my upper thigh for me the tingling feels just like it does when you've sat twisted or awkwardly for awhile and when you move you get tingling in your arm or leg because you've sat that way. I also find that there is a slight numbness in hat area too. I have muscles on my body that even if touched gently hurt like they're serverely brusied these areas are all over the place. My neck and shoulders feel like they're tense all the time even when I'm laying my head down on a pillow I feel like my head is hovering above it not on it. I also have muscles that hurt like they would if you'd been exercising heavily all day without stretching or warming up ( the lactic acid buildup feeling ) and muscles that are tight and stiff to move. Sometimes my wrists and knees hurt like I've strained the tendons or ligaments, sometime areas on my skin feel like they are actually on fire other times it can just feel oversensitive to touch. That's pretty much how I feel but we're all different
Hugs Kathy

[angelmom12]

Hi Sammy,
My name is angelmom12 i have had fibro for seven it is very painful you have 18 trigger point's and i have al 18 your body hurts you get what alot of us call fibro fog which is with the memory. i am in so much pain now my meds are not working cause i have been stress out bad they dont know hhow you get it they dont know how to cure it. When i was told i had no ideal just how much medications i would be taking for pain the tingling your talking about is poor ciculation  you need to try and walk as much as you can i cant cause i hurt to much how many trigger points do you have how long ago was you told that you had it ..hope this helps oh and another thing if you are enjoying life with a partner now that will change too ..
Angel Hug's
angelmom12