i have fibromyalgia and chronic fat. syndrome to and i was wondering if anyone else has what i call my down time which is.., im so tired and feel so wore out that i cant hardly move or even get up to go to the bathroom and sometimes this will last for just a few days or it will last up to a week. and when its real bad its all i can do is to walk to the bathroom and that can even be a problem most of the time. sometimes i think there is more wrong with me then what they tell me. my pain is so bad tht if it wasnt from the high doses of strong pain medicine i wouldnt be able to walk! if anyone else feels like this ... please let me know! thanks
can these flare ups actually be that bad? and how long has yours lasted at one time? its just hard to imagine that something like this could be so bad. i sometimes wonder if i have cancer cause of my level of pain. i take high doses of pain med. some like percocets and vicodin doesnt help at all its like taking an aspirin. i cant take lyrica cause im allergic to it and i know it has alot of side effects to but then what doesnt ,, i donot know what to think about all this sometimes. my arms and fingers are even hurting from typing. it is like i cant do anything anymore! it sure does get old. thanks so much for the information!!!
Yes they can be that bad...and worse. This is where the info. is lacking with treatment by physicians and others because they seem to believe that it isn't "that bad". These are very serious illnesses and can be debilitating and devastating to the lives of those who suffer.
My worst flare was last year. I had gotten a cold and it put me down for 3 days in bed, then took another 3 wks. to get over it. I've had other flares that kept me down for a couple of days (as far as not being able to get out of bed) and more where I have a few days of feeling good, overdoing things and then being down again. It's a cycle if one doesn't pace themselves well.
Unfortunately, pain meds. treat symptoms and not the real issue (which are most likely due to chronic bacterial/viral infections in a high percentage of cases).
Hi i often feel like this, that there has to be more going on then this, my neuro doesnt even think i have fibro, i have taken myself off most of the drugs except the nacotic pain patches as i could not get through without these.My flares have lasted up to 3 mths bedridden before after a kindney infection and they seem to come from nowhere last week i was ok just the usual pain this week i have not much pain but lead muscles weakness where i cant walk been in bed going on 7 days now.
it would help us if people like drs belived in us and helped us more.
I agree with VaBreeze, this disease can be that bad and even worse at times. Right now I'm having an ongoing flare that will not settle down. My legs feel like they have been filled with cement. My hands hurt so bad that I can barely type this reply. The fibro-fog has been horrible, and I have also been in bed for several days now.
I've read so many times that some doctors don't believe that fibro is progressive, but I tend to believe my Rheumy, he told me that he felt that it was progressive because his patients that have fibro have gotten worse over time. I know that within this past year after my diagnoses my health and symptoms of fibro are so much worse. He told me that I had Post Tramatic Fibromyalgia because of the trauma of having 3 major knee surgeries in 7 months to the day.
Right now I am also taking high doses of pain meds plus several other meds and I still have a difficult time trying to function. Thank God my husband understands and believes me when I tell I feel like I have been run over and then backed back over by a truck. Time to call it quits before I fall out....:( Take care.
These "syndromes" can be brutal and for those of us who have to live like this, we know all too well.
I agree with sam.... we need our physicians to work with us and not against us. If people didn't die from bird flu or SARS, physicians would have questioned whether or not these viruses were real (of course before the blood test). I've read that most physicians are an estimated 10-15 years behind in research and I think that that it is why it is vital to either be your own health advocate or have a close friend or relative be your advocate. You have to stay on top of the latest research on these conditions and pay attention to the fibro/CFS experts, because they are the ones who know about these conditions and know which treatments work and which ones don't.
I am going to add to the rest of the comments. Yes!!! Flare times can be very bad. I couldn't get up this morning, and it put me to bed with a headache lastnight. This could last one day or several. I had a month of it before I started Lyrica. Fibro is a fustrating condition to have. I really hope you have a good home support system. It is hard to reach out to others but sometimes we really need to. thinking of you, Gen
You're right PlateletGal. They are the only ones who know and understand. I'm am so disgusted with hearing that others have been told they need counseling or it's due to being abused as a child. Yes, counseling has never hurt anyone...in fact, it does help us learn to better deal with ways we handle stressors...but it doesn't CURE FMS or CFS. It doesn't! I'm sick of human beings being dismissed as hysterical or hypocondriacs...we are tossed aside and left to muddle a slow, progressive decline in both pain and health. This 'turn-about' started when Dr. Wolfe change his mind about his research. Yep, that is one big boo-boo on his behalf (not going to say what I really think). Nevermind that a high percentage of those with FMS will also have CFS or develop some other immune disorder.
We have to take measures on our own behalf to get well. Sure doesn't look like there are many who are informed in the medical arena that care enough to help. **Just like there is no Morgellon's while people pick thread and parasites out of their skin**
Thank you...I don't often get a chance to rant, lol.
THANKS FOR ALL THE FEEDBACK... I APPRECIATE IT. I WANT TO TYPE SO MUCH MORE BUT MY ARMS AND FINGERS ARE HURTING SO BAD RIGHT NOW THAT I CAN HARDLY TYPE RIGHT NOW......LATER! FOR NOW ILL DO SOME READING... TILL I FALL ASLEEP ANYWAY...LOL SOMETIMES U HAVE TO LAUGH SO U DONT CRY!
I am recently in a bad flare-up too! I live in Colorado, and just got a huge blizzard. I got stuck at the hotel I work at, working for 16 hours straight...No food, and standing. Today I feel like I was hit by a truck. I took 3 darvocet last night, and nothing. Muscle relaxants, nothing.
They get bad, but they go away. That's what I always have to look forward to. That eventually it will get better, until the next flare up.
Hang in there...
I wonder sometimes if there is progression with it also...
EXCUSE IF I MESS UP HERE CAUSE I CAN HARDLY SEE RIGFH NOW I CAN TELL THAT IM GOING DOWN (FLAREUP) AND I CANT HARDLY FOCUS MY EYES AND IM GETTING SO TIRED A ND MY PAIN IS REALLY BAD RIGHT NOW AND IM EVEN ON HIGH DOSES OF PAIN MED. IM FEELING SICK TO MY STOMACH RIGHT NOW AND ANY OINE THAT SAYS THIS DOESNT GET WORSE OVER TIME .. THEY ARE WROING OR THEY DONT KNOW WHAT THEYT ARE TALKIING ABOUT. I REM,EMBER WHEN I WOULD TAKE 3 DARVOCETS THAT WAS ABOUT 3=4 YEARS AGO AND NOW IM ON 800 MG. OF MORPINE AND 45 ,MG OF OXY IR'S. A ND IM STILL IN PAIN;; I CAN TOLERATE IT BUT I STLIL HURT VERY BAD SO METIMES BUT... IF IT WASNT FOR THE PAIN MEDICATION I WOUILD NOT BE ABLE TO WAL;K AND THAT IS NO LIE. THIS CONDITION IS AWFUL AND DEPRESSING! I REALLY CANT FIND WORDS TO DESCRIBE IT! WHAT REALLY ,MAKES ME MAD IS SOME OF THESE DOCTORS .. THEY DONT WANT TO LSTEN OR THEY LOOK AT YOU LIKE YOUR A DRUB SEEKER OR SOMETHING! AND SOM,E EVEN TRY TO TELL YOU WHAT YOUR PAIN IS AND HOW ITS NOT THAT BAD, ETC!
GOOD LUCK !
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