Fibro flare? Please read

Discussion in 'Fibromyalgia Main Forum' started by catnip51, Mar 22, 2003.

  1. catnip51

    catnip51 New Member

    HI Everyone: Need some answers. I'll try and make this short.Back in Novemember I started to have pain all over my body, pain with fibro I never experienced, mainly headaches (like Never before pain), neck, upper back, legs hurt sooo bad and very week, chest pain, Off balance (felt disoriented but knew my surroundings if that makes sense. Every muscle on my body to touch was unbearable. Spent 3 out of 14 days in ER. I've had fibro for 30 years and went once to ER.

    My headaches were ungodly pain, all over: back of head, frontal, weakness & pain in legs, could hardly walk,scalp soreness,constricting pain around temples, all of this hit me so fast and the worse pain lasted about 2 weeks, headaches & muscle pain & leg problems went on for 10 weeks almost constantly with headaches during that time, some relief some days but not many. Seen Neuro, ENT for TMJ. Refered me to oral surgeon and he told me didn't think it was the TMJ joint causing the pain but the surrounding Myofascia muscle pain causing the headaches, not sure if he was right.(doesn't explain the other symptoms)

    Anyway one day after the bad two weeks of pain I went out was feeling ok and then suddenly I got this rush of off balance, felt like I was walking sideways,head constricting pain got into car, when I got home I tried to move my legs to get out of car and it felt like my brain told my legs to move and they wouldn't. I kind of had to force my legs to get out of vehicle.

    I have had MRI's, cat scans of the brain MRA,MRV to see if arteries and veins were flowing good to my brain. Basically the results showed normal except for brain Mri which said it showed white matter with 5 possibilities that may cause it, Lymes, demyelateting disease (MS), migrains, small vessel disease and one other The MRI was the only test that was abnormal.

    They wanted to do a spinal tap, didn't go through it. Neuro wanted that one, she also said I have neuropathies, myopathy and herniated disc in neck and degenerative disc disease, Lumbar hernaition. Had that for years but never experienced this type of episodes which I called it with such bad headaches and muscle pain. I can understand TMJ may be causing the headaches but it doesn't explain the leg problem and the equiliberium and sever pain all over in my muscles. I guess my question is: has anyone experienced any of this with Fibro.

    I thought I knew what fibro flares were in the 30 years I have had it but NEVER like this episodes. I'm better now but hope it never returns to that point, so know I'm living on the edge hoping it never returns that bad. Does that sound like a bad flare to any of you? I'm thinking more along the lines of MS with the results of the brain MRI but afraid to have the spinal tap. (Neuro's doesn't think its MS they say the white matter is numerous but not MS type.)Said many people with age develope white matter. I've seen the so called best Neuro's and still no answers as to why I felt that way for so long.

    Anyone have any ideas as to what the heck went on in those 2 months time, I was sacared out of my wits.. Thanks for your responses in advance, I'm getting desperate for answeres. I'v seen Neurologist, neuro surgeon, I'm not usually a whiner with fibro or a person who runs to the Dr for every ache and pain but this was UNBELIEVABLE to experience. My experience with fibro was lot of muscle pain but not to this severity, leg problems with walking on and off, fibro fog. Thanks for your replys...sorry this was long, I wanted to mention as much as possible.

  2. Dozzer

    Dozzer New Member

    Catnip51--I have no answers to what in the blazes happened to you during that awful time. I will certainly think on it. One question--why are you not going to have the spinal tap? If you have great neuros, I wouldn't hesitate. I have had several primarily for herniated discs both lower back and upper neck area. It wasn't a piece of cake but I survived. My recommendation is to ask to have an Ativan pill before the procedure -- great relaxer. This would be a start in trying to try and figure things out. Anyway, it certainly isn't up to me to direct your medical decisions. Just was so touched by your message I wanted to say that you are not alone --there are probably lots of people thinking about you and pulling for you. God Bless, Dozzer
  3. Bambi

    Bambi New Member

    As someone who was needle phobic for years I can understand in general being afraid. But I also had those
    things as a 3/4 year old child when
    I had Polio and I still remember them, probably enlarged by time. I won't have them either. If they had some way to really numb me up, MAYBE,
    but I guess there's no way to just
    knock you out to do them. Maybe a trip or 50 to a therapist or hypnotist would help "me". BUT, bottom line with the seriousness of your episode I MIGHT (if they let my
    husband in to hold my hands..and feet, lol!) do it. I hope you find the way to talk yourself into it, it
    might be really important information
    and might eliminate problems that they could see coming or something. I
    don't know, but I do understand your
    fear. (((((((HUGS!)))))))Bambi
  4. catnip51

    catnip51 New Member

  5. bejo

    bejo New Member

    I had headaches for 2 years before getting diagnosed with fibro.But they weren't that severe.Whatever it was I'm glad you're feeling better.But like you if I had a flare that bad I'd be holding my breath afraid I'd get another one. bejo
  6. LisaMay

    LisaMay New Member

    I can feel your pain! I'm sorry that you had such unbearable experiences. Q: Did you had any med changes during that time? I suffer from severe headaches that are similar to migraines. My docs altered my meds and now I only get them right before my period. This is a great relief for me. As for the body pain, I have no answers. I was doing real well and of course, pushed myself too far, and have now been in a awful flare for the last two weeks.

    I would reconsider the Tap - it could hold the answers for you. Lisa
  7. jka

    jka New Member

    i use to walk into walls,furniture.sometimes i walked like i was drunk. felt like my head wasnt attached to my body. had days when i couldnt remember anything.i tried to put some names in alphabet order one day and was in tears because i couldnt do it.i'd feel like some one had beaten me with a baseball clothes hurt .i work part time at an elementary school and the kids hug me all the time. most days i felt like i was dyeing every time i got one.but i have a good rhumy now who has been able to really help.

    hope things get better
    kathy c
  8. Msagn

    Msagn New Member

    I had many of the same symptoms you mentioned, my upper body did not hurt but the headaches! Most of my pain was from the waist down, even my little dog could not jump onto my lap it was like knives stabbing into my legs.

    For over the last 2 1/2 years I have been on a self medication program uning "Hydro Cortisone" many here on the board want to call man made "Cortisone" the same thing as "Hydro Cortisone" it's not.

    Hydro cortisone is (7) times weaker than it's man made substitute. "Cortisone"

    Your body use to make "hydro cortisone" everyone's body did. But for some reasons it stops, or doesn't produce enough.

    The program I got involved with puts you through a simple physical and gathers backround history. I can't even tell you how many in depth physicals, scan, MRI's Cat Scans I've had through the years trying to figure out what was going on with me.

    Originally founded for use with arthritis the benifits have also in "some cases" been found to help with the pain of FM.

    I know if been God's blessing for me.

    Starting with a self diagnosed pain level of 129
    after two weeks on the program I had a 70% reduction in pain.

    My pain level from FM and arthritis that may never go away is now at (2).

    This is not a good program for anyone who has diabetes but for those who don't, it may be worth while reading about.

    You have to look it up yourself and decisions you arrive at would have to be your own.

    I can only speak for my own results and others that were not willing to stick to the program guide lines did not get the same results and for some it did not work at all. So is it a cure all? not for everyone.

    Look it up and read read read... Microdose Therapy

    Best of luck to you Cathy

    OHELPME New Member

  10. catnip51

    catnip51 New Member

  11. pudge

    pudge New Member

    ive got fibro-been dealing with it all my life-my daughter would fall down stairs when she was 12-she missed her teenage years by being to tired and miserable to get out of bed the drs said she was going into puberty and wanted attention??? i looked for answers for her and me too-however back then they didnt reconize anything-about three years ago she found 2 drs that were willing to help her mind you she is 29 so long haul-they refered her to a sleep clinic and found she had narcolepsy a sleep disorder-the more she found out about it the more it explained her problems-she doesnt have depression but it still drives her crazy-now she knows what she is dealing with-sleep apnea-sleep disorders can cause you to do some weird things when you are awake-she went to the narc convention last summer-she met 2 of the people she chatted with on the narc chat line-those 2 had cataplexy!! when they get scared or laugh too hard they plop on the floor like a fish out of water=after awhile they can get up-she has to limit her work- take naps and when she gets over tire she walks around in a fog also- i dont know if this relates to you but if you read up on sleep disorders it is incredible my friend just had a sleep study-she quits breathing 7 times an hour-she is using an i-pap machine at night-forces air in while she sleeps-she has ms too! just some food for thought-take care
  12. pudge

    pudge New Member

    can you believe my mom about 4 years ago-she was 70-she was falling and went she sat down layed down and got up she would get dizzy-i decided to take her to mayo clinic-the one night i was readind in readers digest about a dr that dealt in this called-he wasnt there but got another neuro and they set up tests-after the tests-they said the crystals in her ears had fallen off the sticky part there- they said she would have to have them put back!!?? the therapist sat her on the table -turn her body and head way over one way and then acouple of other ways she had to sleep upright for anight an her neck kept straight with a collar-sounds bizzare doesnt it!!!??? however my mom hasnt fallen since-if she starts falling again they just do it over again-try telling that to someone-other people have had it done and it worked-sometimes something so simple works-when some drs tell you to go home and live with it