Hello everyone,
I have had fibromyalgia for years. Fortunately I haven't had a bad flare up in a long time. Well I started feeling crappy a couple of days ago and now I feel like one giant toothache. I can only hope it won't last too long....I really don't feel like doing much of anything but I usually force myself to keep going. I know at least a few of you have mentioned having fibromyalgia...how do you cope during a flare up?

Ditter

I do! Usually I'm okay - but I've noticed that if things are bad at work, I'm pretty much done for.

The cold weather gets me too.

I've been trying the chiropractor (!) and he has put me on a "sugar control diet" to help with some of the symptoms...

idk if it's working...

I have the usual aches and pains, but this is something I am going to discuss with my Doctor on my next visit. I have been seeing an Orthopedic Doctor for a constant pain in my hip. He gave me 2 injections so far and neither have worked, 2 or 3 days later I am in pain once again. Both legs are in various degrees of pain at some time during the day. My neck is always in pain but that is from the disc fusion I had a few years ago.
Thanks Ditter for the subject, I will let you know what she says in March after our visit.

Hi Ditter, to ansewer your quistion I have had fibromyalgia for over fifteen years, I also have copd , and of course the back injury, and your right some days are great and some days are the worst life can bring, but Ive learned to puch through the tuff days and make myself continue doing what has to be done. The Doctor told me to stay active and this would help. I take motrion, and pain meds, and stay away from cold as much as I can, for some reason If I get cold I have more pain. Penny

I'm a massage therapist and treat many clients with Fibromyalgia. There are many things that really help and moist heat seems to be one of them. A lot of hot towels get used in my practice. However, we've found a clinic in Reno, NV that has some interesting and successful treatments for autoimmune disorders. Check it out at http://www.sierraintegrative.com/about.htm There are also clinics in Seattle and Connecticut (I think). What I tell my clients is to stretch slowly and breath deeply. Both Arnica gel and Sombra rub work wonders. Blessings.

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?

I don't have a definite diagnosis yet.
One doctor said it's fibromyalgia.
Another said I have Lupus and Sjongren's Syndrome.
All I know is today I am hurting quite a bit.
I think it's the weather.

I've had fibromyalgia for 16 years. After years of suffering and spending most of my time on the sofa, I finally broke down and started taking Lyrica two years ago. Well, within 3 days if felt relief! I have gained quite a bit of weight since starting it, but the benefits definitely outweigh the side effects. I still have an occasional flare up, but they're tolerable and short lived. I would recommend it to anyone!

It hurts every were, some times its a building pain and some times it hits you from left feild. the only way I can describe it is it is like you are running a high fever ,without the fever every thing in your intire body is in pain, It affects people diffrently,they will usalley send you to a romatalogy for test. I hope I've helped with your quistion. Penny

That medacation is just to expensive with out insurance.

[quote=penny doty]My
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.

I have been diagnosed with fibromyalgia for 7 years.But I think I have probably had it for a very long time. My pain is transitory, but is mostly in my legs. The fibro is aggravated with the "pink" artifical sweetener, causing all the connective tissue in my neck and arms to hurt and ache. So of course I don't use it. (grin) I take a anti-inflammatory and muscle relaxant at night. Cold weather is starting to really bother me especially since I have Raynauld's Phenomena (circulation shuts off to fingertips ...you can actually cut yourself and not know it until the circulation returns) and it is extremely irritating and uncomfortable. It can last a few minutes or longer. They hurt when they get the blood flow back, also.

Yes, I have Fibromyalgia...NOT fun...I had a big flare up, few weeks back that hit so bad and quickly that I ended up in the hospital....Then I was given something that caused an allergic reaction....It's been a really fun month....
Be careful with Lyrica...some of the side effects outweigh the benefits. I felt great on it for a while, but had to get off of it. Stress is a trigger...I've had this for about 10 years.

I have it too, but fortunately, don't seem to get too many flare ups. I do have leg pain though, especially at night, which added to arthritic knees and hips can be a nuisance. I take pain meds, anti inflammatories, and relaxants, so I think they are probably keeping me going.

It's been about 15 years since mine was diagnosed. For me the pain was mostly in the big bones of my arms and legs. It felt like someone was ramming a red hot poker through the middle of them. About 4 years ago I went to a Dr. of alternative medicine. He is a real MD, just doesn't stay inside the box and definitely does not believe in a pill for everything. He did a lot of saliva tests and found out that my body was totally messed up. The only thing that is relevant, however, is that he started giving me vitamins that were put together just for me. I also got an IV once a week for six weeks that was a combo of mega doses of c and d along with some other vitamins and minerals. The bottom line is, I have not had an episode of fibro since. Once in a great while I will get a little achy, but that is about it. A nice warm bath or shower and a couple of Tylenol and I'm good to go with no pain. I'm not saying this would work for everyone, but it sure did for me.

[quote=I come to the sea to breathe]i too get very achy all over at times i take panadeine forte at night to sleep. My legs and feet are the worst but it isnt as painful as some of you seem to have it. It is just achy. I have mentioned it to the doctor but he didnt seem concerned. Does it hurt more when you walk or is it just achy?

I found out about having fibro from having an attack, I was tested years ago for RA, it runs in the family lucky me. Told that I tested positive and found out recently that it was Lupus not RA , not that it makes much diffeence, in my case. Motor vehicle wreck 15 years ago where I broke every thing in my upper body except by back,vehicle landed on my chest. So all in all fibro, RA, lupus, COPD(collapsed lungs in mva), as you all know some days are good some days are not. But I several interests in the sewing field so if I can't do one I almost always am able to do another. For me sewing is very relaxing and that is KEY to pain control!! relax if you can and enjoy life to your full potential even on those bad days.

I don't have fibro but I do have lupus. I was diagnosed several years ago. I mostly have joint pain and sensitivity to the sun. My hands seem to hurt the most, especially the thumb joint closet to my hand. There are days when I wish I could just "pop" off the painful part and put it back when it finally quits hurting. I dread the day when it gets to bad to sew.

OMG! You described exactly my symptoms! I went to a rhuematologist in Jan. and he drew tons of blood but it all came back normal, according to his nurse. I wasn't hurting that day so maybe it affected the blood results. I almost couldn't function last summer (too much sun?) but over the winter I've only hurt maybe 2 or 3 days each week. My toes hurt too...I thought I'd broken several of them.
Right now my wrists and thumbs are so sore I can't pull the covers up at night, hold a heavy glass, etc.
I'm almost sure I have Lupus, although he didn't seem convinced.
After reading the posts I think I have Raynauds too. My fingers go white in the cold and hurt like crazy even when they're warming up.
Are all these different syndromes related?
I mean are they all auto immune? (Fibro, Lupus, Raynauds, Sjongrens, etc)

i was not registered until i read your question and all the answers you received. i have a sister with fibromylagia who was taking all kinds of pain killers until i told her the best pain killer. i take omega 3.6.9 flaxseed,fish, borage oil, 1200mg.the brand that i use is webber. i take 4 every day, 2 in the morning, 2 in the afternoon. the only problem that i know about is that they are a form of blood thinner, so if you already take a blood thinner, or already have a problem, don`t take.... but ask your pharemist.that`s who i talked to.i take no other drugs,and i feel great. so i told my sister about it, and she decided to try them, it took her almost 3 weeks before she realized this is the only pill she takes, and she is pain free. she tried taking just 2 for 2 days and the first pain she had was in her hips, now of course she takes 4 capsuls every day. good luck, it beats taking prescription drugs. they also give you lots of energy. heres wishing you all the best arlene

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

I went on Celebrex and I feel so great. The pain went away for the most part. I believe it's because its an anti inflammatory drug. I also read in the arthritis mag. to use 3 cups of epsom salts in a warm bath when the pain cripples up our whole body. Roz

I also have it. I was diagnosed about 20 yrs ago. Some days the pain is so bad I have to use my cane. I also have Parvo B-19 which is another form of arthtitis, plus I have rheumetoid arthtitis so the pain is constant all the itme. I get injections but they don't help. Sometime my skin burns to the touch like a bad sunburn.

Donna P

I have Candida Albicans which is yeast overgrowth in my body. This yeast overgrowth has caused or attributed to the Fibromyalgia which I have had since 2006.

I have learned that the BIG 'S' word...."sugar"...feeds the Candida overgrowth. I take 400 mg's of Ibuprofin for pain and I'd rather not take that. Drugs just hinder the body from healing naturally. Drugs cover up the problem instead of correcting it or in my case ~ make my Candida worse. I'm in a catch 22 situation. It is very difficult to shop for groceries since everything is loaded with sugar or sugar substitutes which are even worse.

Somedays I feel like I just want to give up, but I don't. I keep pushing myself to go on. I've just started a very light moderate walking program that I am praying will help me. Which is another thing with Fibro.....we can't overdo or we pay dearly for it!

I have always been very active. Going from the time my feet hit the floor in the morning until I lay my head down on the pillow at night. It is very hard adjusting to a slower pace, but now it seems I have no other choice. My body is riddled with pain, which comes and goes and moves around. Burning in between my shoulders and the back of my neck. At night when I am ready for bed the covers are so hard for me to pull over me, they feel like a ton of bricks. I have bottles of anti-depressants that I was told to take, but again, I don't like drugs.

My prayer life has certainly grown and my relationship with the Lord has become closer. That is the only thing that is good about Fibromyalgia ~ nothing else!

I've had Fibro for more than 20 years. Some days are good, some not so good.

There is no marker in the blood that will diagnose Fibro. I can mimick nearly every other known disease. So it's hard to get an accurate diagnosis sometimes. The best indicator is the 18 tender points located around the body. You won't know they are there until the dr touches them, and then it hurts! I went to at least 15 doctors before someone said fibro. And the strange thing was, one doctor in California said I had Fibrositis, and I wasn't even there to see him. I had taken my son in for allergy testing. I'm going to try the Webbers 3.6.9. capsules. Can't hurt.

The weather has a strong influence on Fibro. When the barometer drops, then I usually do, too. If it's sunny, so am I. :)

Stress can be a HUGE trigger for me. Esp. emotional stress, family stuff. I use Ultram (tramadol) for pain and have for about 18 years.

I would give my first-born for a doctor like that!! Not really, but, it would be nice...........

Actually, they are all over. Just google in your area. The drawback is, insurance doesn't cover them because they aren't "traditional" Drs. Well mine was a real MD, but it didn't make a difference. It is expensive, but to go from how I was (miserable) to how I am now (happy and virtually pain free) was worth every penny!!

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.

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.

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.

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.

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]My doctor kept treating me for diffrent things, then one day it felt like someone beat the bottom of my feet with a base ball bat, this lasted a couple wks I finley went in for it, she then poked me in diffrent spots and asked if that hurt, I told her only when you do that, thats when she sent me to the rumatolgist. I was clueless as what was goning on. so with treating aches pains migranes, depression, these are all things related to fibromyalgia. I've probley have had it for 25yrs.

when the sleep gets bad..i go on a med just for a few weeks or a month..i don't take it regular.

Any illness, where you don't "look sick" is hard for anyone to understand..

I have had memorey issues for a long time and have had to right everything down, Is this a part of fibbromyalgia? I had kaiser ins for 18yrs and they did not give good info, but my falt to. I havent ever read about it, Im the type that I want you to tell me what it is and fix it.

yes sleeping disorder is part of fibromyalgia.

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!