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I've had it for 9 years. 2 years ago it was so bad I cried a lot from the pain. Now I take Lyrica. The pain is still there but it is manageable. Stress and cold weather really make it worse.
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I was diagnosed several years ago but I know Ive had it longer than that. Like some of you I have been active my whole life, very physically demanding job, on the go all the time. Then I had neck surgery and it all went downhill from there. Extreme vertigo, fatigue, numbness in face, joint pain, on and on. It took several years and many doctors before I found out was wrong. I have no faith in doctors anymore. It seems they just DONT LISTEN!! When you are describing your symptoms they get hung up on one of them. Oh, you have vertigo, must be an inner ear infection. Headaches, heres a pill. Cant sleep, heres a pill, etc. I finally went to this wonderful doctor who actually sat down and spent about an hour with me, listening. He ran a battery of tests to rule out RA, MS, Lupus, checked my thyroid, diabetes, and alot more. When I went back for the results he spent time explaining things to me. Put me on Cymbalta, which did nothing but make me gain weight, then tried Lyrica and that stuff messed messed me up! Unfortunately I moved. And I havent been back to another doctor for it since then. He did say that since I had absolutely no problems before the surgery he believed that triggered it. Lucky me.. I am in pain daily and I have learned to deal with it. The joint pain in my hips and shoulders is always there, always, and I deal, but when I have a flair, thats another story. Bone deep pain and extreme fatigue. I told 2 friends about it after a few years of them wondering what the heck was wrong with me. Printed out this letter to friends for them, and it was like, oh that sucks, cant you just take some meds? Hello? Did you even really read what I just gave you? So now when we talk I never tell them how I am really doing. A few family member know and thats it. I have been reading everyone story here and wasnt going to say anything, then I saw how many others had it. I take no meds and its hard somedays.
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I have fibromyalgia and I am having a bad flare up right now. I can't take Lyrica. I tried it and I got so dizzy I couldn't stand up. My DD has it too and she is having a bad flare up right now too.
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Most people really don't understand how you can hurt so much with this disease. They can't fathom that the pain never goes away completely--just different degrees of pain. Do most of you find it hard to sleep at night? I think that is partly why I am so exhausted all the time.
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Whe i get into a bad flair up, i got to the doc, and get a shot of teradol? or toradol? (very stinging shot) they don't give it out very much..messes with other organs..but within an hour, i can dang near turn cartwheels and spit nickels.. i hear all of you and your thoughts on meds and vitamans..
i took vioxx, until they took it off the market, if i could of continued taking it, i would of signed off on the reasons they took it off the market. Always judgement calls on meds and living in pain. Quality of life has always been an issue with me..i want to be able to live without excruciating pain..so i take what is available, so long as i can function,drive and do other things in moderation. i was always an "A" type personality..i am not even a glimmer of what i once was.(wild steelworker,biker,pool shooter in competitions,red head lol) .but i feel better mentally, because i have learned not to give a rats butt about things that i can not control .I can not change the rules, or the lives of my family or friends or the homless or sick,I do what i can,when i am able. I see a therapist once a month now..used to be every 2 weeks,seems like forever..i am lucky/rather,blessed, i have insurance.(for the depression that comes with illness and lif changes) When the time comes, that the meds i am on, no longer work, then i will try other types of non traditional care. re: the cymbalta, yes i have gained weight on it, the extra weight is bad for the Fibro..but so be it. i am trying to "move" more,even when i don't feel like it.. the best thing we can do for ourselves, is to lightly excercise..the hardest thing for us to to for ourselves, is to lightly exercise! it is the nature of the beast. there are a few very good books at the library on FMS..you need to demand that doctors listen to you.. you can be misdiagnosed with FMS, and actually have Lupus, not the other way around.but you can have both. i take a bath every night..it relieves the aches and pains...i have an adjustable handle bar i use to get up and out of the tub. If you can find a place that has water exercise, and you can afford it..like the YMCA..thier water has to be a certain temp, according the the national arthritis foundation..it is a great way to loosen up the muscles and tendons.. i feel for all of you..and hope you find the relief you need. |
[quote=blahel]
Originally Posted by I come to the sea to breathe
Originally Posted by penny doty
Originally Posted by blahel
what are the symptoms of fibromyalgia? right from when you first notice something isnt right to when you flare up? exactly where does it hurt?
dd dr. told her that crohns disease is also connected with fibro. i have had fibro. for many years, i use to think i kept getting the achy flu, but finally was told i had lupus, than fibro, even tho i test postive for lupus. my legs and hips are really painful, and i have started noticing that when i shake hands that sometimes it really hurts. good luck. |
Originally Posted by butterflyquilter
Most people really don't understand how you can hurt so much with this disease. They can't fathom that the pain never goes away completely--just different degrees of pain. Do most of you find it hard to sleep at night? I think that is partly why I am so exhausted all the time.
Any illness, where you don't "look sick" is hard for anyone to understand.. |
Originally Posted by watterstide
I have been diag. since 1982. when it was known as fibrositis.
I started a diary/personal thread here on living with an invisible illness..which includes so many syndromes.. i take cymbalta 2x a day..along with a few other meds.. as everyone else..good days and bad days.. in my signature, the "spoon theory" was written by christine, who has Lupus. Lupus and FMS are usually interchangeable, with mis-diagnosis. there are alot of us here,with FMS,CFS,Lupus and others..quilting and doing normal things..are always a struggle. But i have learned to work around it and just make do..My memory is the worst of it most times..i don't do anything with out writing it down on a dry erase board..and my calendar.. if you need someone to talk to, we are all here..to listen to help and to offer support! Kim |
Originally Posted by butterflyquilter
Most people really don't understand how you can hurt so much with this disease. They can't fathom that the pain never goes away completely--just different degrees of pain. Do most of you find it hard to sleep at night? I think that is partly why I am so exhausted all the time.
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I do still have the memory thing and some days it just about drives me nuts. When I am talking and can't remember a word, I say didn't you see that word just float out of my ear. What is so aggravating is that I used to have nearly photogenic memory. Oh well!
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