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Readers Respond: Living With Common Symptoms of Fibromyalgia

Responses: 65


Updated May 07, 2009

i am 21 yrs a student nurse with fibro

i am 21 yrs with fibromyalgia, i was diagnosed 6 yrs ago and still cant get used to the pain, everytime i say to people i am soo tired they think its a put on or when i say my arm hurts my body hurts they think im putting it on and i am sooo angry because they cant feel what i am feeling at times it feels like someone is burning my hands and feet with a lighter. in the mornings it hurts to even move. i stub my toe and it feels like someone has just thrown a brick on to my foot. i just want to beable to get up refreshed full of life and move without pain. i am a student nurse and i have found coping strategys where i will try and compensate for what i cant do. i now find it hard to grip a cup, i can hold a pen for 10mins and thats it i have to stop, i have a severly sensative arm and i have currently have had seizures due to this. i also suffer from depression due to fibro and it doesnt get any easier, i take co-codamol for pain but it doesnt work no more but am trying to cope :) x
—Guest emzy

Fibro and PMR

I was diagnosed with Fibro first then PMR-- an autoimmune disease that presents itself with severe muscle pain from the shoulders to the hips girdle and thighs-- it is terrible. Treated with doses of prednisone it can manage the symptoms. I cant take the higher doeses of pred so i mix with hydrocodene. I still have pain daily but cope,
—Guest Annie Wood


I was diagnosed with fibro more than 5 yrs ago.i had tender points through my body . in the past year it has gotten so much worse.i wake after a unrefreshing sleep,with my legs aching i also have restless legs syndrome. my body aches, i am on anti depressants , and im low on vitamin D so i also take that.im so tired i have to force myself to do the smallest tasks.one of the worst parts is feeling nausea's all the time, i have been giving anti nausea pills but they dont help.some days im dry retching.im 62 but feel 162. i get angry that this has happened to me, i guess that doesn't help.yes i feel sorry for myself. but its so hard not to when you feel so unwell all the time. thank you all for making me feel not "so alone.i think you people are the only ones that can understand.god bless and lets hope they find a cure soon.
—Guest chris

New Symptoms:Itching,hot & Cold Flashes

All of a sudden I have developed several new fibromyalgia symptoms such as severe itching, hot flashes and cold flashes as well as a more severe numbness in my hands and feet that result in feelings of hard inflamation of my toes and fingers.The flares have increased and my osteoarthitis is causing intorelable pain from the waist down in my back all the way shooting down my thighs and legs. I can hardly walk more than 10 steps when I need to sit down immediately. I suffer from diabetes 2, high cholesterol, high blood pressure,Neuropathy, and RSNDS. I can't hardly sleep and I am always so fatigued and in so much pain that I am not able to remember most of my daily routine. All I want to do is rest and sleep. Although I feel so sick I know others have it worse than I do.We just need to continue coping and not let this desease ruin the rest of our lives. I am 70 years old and have had fybromyalgia since 1975 even though I was not diagnosed until 1991.I take many medicines. Best wishes.

I can only wonder...

So I've been crying for about a year now with chronic pain, but I have no insurance. I was seeing an ND but I can't afford the suppliments I need to feel a little better either. When I try to do yoga (which used to do wonders for me) my muscles start to spasm and I get this INTENSE pain in my chest/back/shoulder area that makes me want to just end it all. My feet/ankles/hands get super swollen. I loose feeling in my arms/hands/fingers or they tingle. My ears are constantly ringing, and I can't remember the last time I was without extreme headache. All I want to do is sleep, but I can't sleep ~ so I cry and get frustrated at night. On top of all that I feel like I'm wading through concrete all the time. I haven't been officially diagnosed, because my ND is waiting till I have insurance so I won't be rejected... but I can't afford insurance.
—Guest ramonax

Trying to cope

Thankyou for this wonderful newsletter, I don't feel so alone any more. I have many things wrong with me, one being FMS and CFS, arthritis's, skeletal bone disease etc. I am now 57, am on a disibility pension, have had to use a walking frame for a few years now as my balance (and back) are bad. I feel like other people really do understand the pain, thankyou once again for this newsletter. Regards, Isabel
—Guest isabel

What helped!

In 26 years of, trials and disasters ,only fish oil, probiotics and Valtrex. After one month of 3 grams a day, I felt noticably better, but my liver enzymes were off and I had to quit .
—Guest Roveta

Fibro starting at 21

Being diagnosed so young created a world I didn't want to be in. Pain was the one thing I prayed I won't have as a young girl. I've had a lot of challenges in my life I'm now 37 and I must say, fibromyalgia is the worst. I just want to wake up refreshed, with no pain, I want to stretch my body and feel relief not pain, I want to bend down without the feeling that I can't stand back up, and I want to stop feeling sad like I don't belong here. I just had MRIs done EMGs done and you would think the doctors would've said it's just fibromyalgia. It's just the worst pain ever...to all those who suffer I feel your pain.
—Guest Andrea

That suicide side effect

I was prescribed Lyrica before any warnings appeared. The alertness of a friend literally saved my life. Even though I'm an RN, I did not connect the severe suicidal ideations with Lyrica until it was pointed out by my friend. It took 2-3 months for the symptoms to develop, and by the time I said anything, I was already planning (how to commit my suicide). When we realized what was happening, I quickly weaned off the drug and notified my rheumatologist and the FDA. As the Lyrica cleared my system, the suicidal thoughts vanished. The most frustrating thing is that the Lyrica worked fabulously for the pain. Fortunately, I find that Vicodan or Percocet work extremely well for me, but I have a long history with Lyme as well as fibromyalgia. Just be very alert with the suicide warning--it sneaks up on you gradually, and you may find yourself planning a suicide before you realize what's happening.

how to treat fibromyalgia without meds

I was diagnosed with fibro in late Jan. Started with hair fall and within 2 weeks was bedridden. Dizzy, zero energy, body aches, no memory, confusion. I was a mess. I was put in contact with a doctor of nutrition who put me on a strict regimen of vitamins an supplements. I felt better within a few days and after one month felt 50% better and continue to improve. The main supps were: Ubiquino Co Q, acetyl l-carnitine, Max DHA, B complex, Ca, Magnesium, also biotin and biosil for my hair. I also started taking iron 50mgs a day. My blood showed an iron level of 23 but all other hormones and levels were fine. There are alternatives to medication. You should see nutritionist before taking starting supplments. Also try supps before taking meds! Good luck to all!
—Guest Lainey

My story

I am so relieved to read all the responses. I was diagnosed a year ago with FM, though I have been in pain for more than 5 years now. It is believed that a fracture might have triggered FM. It was frustrating that there was no name for what I was suffering and worse, no one understood.Now i internalise my pain, my emotions, as I know no one will understand, for nothing is apparent. I have a lot of the symptoms-pain ofcourse,difficulty swallowing, grinding of teeth, tingling of toes, burning sensation, tenderness, sleep disturbance, et al. Recently i have had chronic jaw pain and realised only much later that it is also part of the the FMS. Amitryptline didnt work for me. I take diclofenac for the pain that is all. I feel like i am falling apart and have forgotten what it was like to be pain free. I hope some cure is found soon and relieve me and all of us from this misery called FMS. My heart goes to all of you - suffering in varying degrees. When will this end ?
—Guest Selwyn

Just finding out

I have just learn after many many years of suffering wiht RA and Osteo tha I to have fibromyalgia. I knew that my pain was greater than just my joints. I have had trouble since my early 30's, but trying to get a doctor to listen. Because it went for so long undiagnosed. I now have trouble with my mind and configuring my word. It took me 30 minutes to type this. Starting many words over and over. My pain is termendous. Lord bless all those who suffer. I will pray.
—Guest pepper50

I have fibromyalgia at the age 24

I was diagnosed last year after years of misdiagnosis from many different doctors. I can not take any kind of antidepressant. Turns out my depression is from the chronic fatigue I get. My husband has to take care of me like a small child sometimes. Not to mention we have a toddler. I keep my spine good with monthly chiropractic visit and that helps greatly. I was the youngest person he had every seen with very little movement. Even though my spine is now aligned to my disappoint the fibro did NOT go away. I would definitely recommend seeing a chiropractor thou. He saved my marriage! I had to walk with a cane before and was extremely embarrased. I could not even go outside with my son. Now I have most of my movement back. The shakey muscles, fatigue, and IBS are still there. I lose concentration and I forget what I am doing. I am so slow like a turtle that you could probably mistake me for an old lady even you could not see my face. I take vitamins like B-12, D, C, and varous others.
—Guest Wiley

polymyalgia, then fibro, too

I was diagnosed with poly in 2003 and after the meds for poly reduced my ESR to normal levels I told my rheu something else had to be going on cause I hurt way too much for just controlled poly. He diagnosed fibro, too. He gave me drugs to sleep, relax muscles and pain meds. They help especially the pain meds, but I think that Vit D,B-12 and other supplements really have improved. 5-htp really helps the discouragement & frustration of fibro. I am so grateful for my local Nutritional store cause I take many more "natural supplements" than I've listed here. Adrienne, this site where I can read about those of us with fibro cope, has meant more than I can ever put into words. Knowing that there are others of us who have these weird symptoms has made me feel much less alone and helps me get through the tough days. thank you.
—Guest fran

New disease added to my burden...

I was just diagnosed with Type II diabetes. Just add it to the pile of all the rest of the problems. Kept me on all my meds but added vitamin B-12 injections. Now I'm trying to learn all I can about Type II diabetes. when does it end? And...if I'm ever so lucky to find a job will I be able to get Health/life insurance. I'm just so tired of being tired...in pain...the fibro-fog...and now diabetes. Good grief. Not to mention CFS as well.
—Guest Audre

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