It's in my head----literally!

Discussion in 'Fibromyalgia Main Forum' started by Jackie41, Mar 18, 2003.

  1. Jackie41

    Jackie41 Member

    I'm a 29 year old lady, formerly fairly active and athletic, who's had cfs and fibro for 14 mo. My most bothersome symptom is leg weakness and for the past 6 months I've been on crutches most of the time, although tests of my muscle power don't show much actual weaknes. Still, my legs feel very weak. Recently another fm patient,who seemed quite knowledgeable about the disease, speculated to me that there is a chemical imbalance in the brain that causes me to get the sensation that my legs are weaker than they actually are or something like that. This almost makes sense, since my neuro workup and muscle biopsy were negative. Anyone else have an opinion or information about this idea?
  2. lin21

    lin21 New Member

    I don't have any information for you but wanted you to know I'm in the same boat. My legs are so weak. I was just diagnosed in Nov after having surgery in 9/02 for what was thought to be torn cartilidge. I think the only thing that kept putting this off was that I was exercising even though I still felt like crap. It has really advanced and I fall at times because of the weakness. I'm a mere shell of what I was 8 months ago.
  3. Shaylee

    Shaylee New Member

    Hi Jackie,

    None of this is in our heads even though we are made to feel that way from family, friends, and most of all doctors. Sometimes they do not want to except there are new disease springing up which they know very little about.

    I also have a chemical imbalance in the brain, but my doctor put me in the hospital for three days to monitor how I responded to meds and did not respond. All of my meds compliment one another and that is what you want. Some medicine is prescribed on a whim and this is when we get into trouble. Go to someone who will make sure your meds are working for you and not against you.


  4. pam_d

    pam_d New Member

    Makes sense to me! I have one leg (my left) that is like that-----not all the time, it comes & goes. Like you, all my tests look fine. Most of my symptoms are weird neurological ones, so it doesn't surprise me that a there could be a chemical imbalance in the brain that isn't visible on a test...I have a ton of strange sensations that don't reveal themselves on any test, yet I experience them day after day......strange existence, living with these syndromes!

  5. dd

    dd New Member

    I can relate!!! For a very long time my main complaint was weakness in my legs. MY legs felt like jello all the time. When I went shopping I would have to use the electric scooters and I am 38...quite embarrassing at first for kiddies liked riding on my lap though. I haven't had to use a scooter while out shopping for a few months now...knock on wood...I seem to have regained some strength in my legs for now. I only hope that it lasts!!! For me, I think that my vitamin and herbal remedies are working. I cut out all my meds except for Synthroid and Xanax. I wanted to try the natural route because the meds weren't working anyway. I feel that it has made a world of difference. My fatigue isn't so bad anymore either, but last year at this time I felt good too and then had a relapse in the summer...I think the heat had a lot to do with it.

    I hope you are feeling better soon. You are not alone, we are all here for you.


  6. Jackie41

    Jackie41 Member

    Tell me about it! My legs get like that often, but not all the time thank goodness. I really prefer the crutches ( the forearm kind) to a scooter cause I feel more independent with them. They're convenient since they clamp on to your arms and won't fall if you let go of them. They give me all the support I need and don't bother my arms that much. Of course they cause a bit of self-consciousness at first but the easy mobility is worth it. I now use them for going out even on relatively good days just for the extra feeling of security. You might want to give them a try nex time your legs get weak.
    [This Message was Edited on 03/19/2003]
  7. Mara1

    Mara1 New Member

    I have weakness in the right leg and all the other symptoms of fibro. I already had operation for this because the pain of fibro matched a condition called Chaire malformation. Or even Cervical Spinal Stenoisis.

    I live in Florida and a newspaper that is called The Sun Sentinel wrote some of this article. It is a real breakthrough not only because it works, but it proves fibromyalgia can be treated says rheumatologist Dr. Leslie Croford of Michigan in Ann Arbor who has studied the new drug, pregabalin. The syndrome, which affects an estimated 5.6 mil, is characterized by pervasive muscle aches and pain so intense that many are unable to work. Because the syndrome can't be diagnosed with conventional lab tests or CAT scans some physicians have thought that suffers were hypochondriacs. Pregabalin reduces the release of specific brain chem, such as glutamate and noradrenaline that may cause pain, says Terry Griesing, neurology researcher with Pfizer NY, the company that makes pregabalin. The drug could be on the market as early as 2004. March 16th 2003 Page 3E
  8. Bellesmom

    Bellesmom New Member

    and things has progressed to that. I did have a lot of imbalance along with head pain and lots of other things but I had pain in legs, mainly right. Some numbness in feet and now it's progressed to where I can barely walk and the weakness in my legs actually didn't begin fulltime until about 5 months ago.

    Maybe I'm backwards, huh?

  9. idiotsinc

    idiotsinc New Member

    As much as we hate the idea of FMS being "all in our heads" the fact is that most of the "scientific research" points to that fact. Not that the pain is a figment of our imagination but that there's a neurological basis in the illness. The muscle problems, immune system problems, endocrine problems etc are symptoms of the body's reaction to the stress and lack of sleep caused by the imbalances in the brain. I started with a shrink a couple of weeks ago after undergoing testing with a neuropsycologist. I've been diagnosed with ADD and anxiety. I found a good shrink who understands the brain-body connection of chronic pain. Before you can be helped you have to understand it yourself.

  10. bejo

    bejo New Member

    My legs feel weak too but they only started feeling like this a couple of weeks ago.I've had fibro for at least 12 years.I really haven't ask the Dr. about this yet but plan to when my next appointment.Keep us posted on what you find out concerning this. bejo
  11. catnip51

    catnip51 New Member

    Jackie I know what you mean with your legs. I haven't reached the point of assisantce because I won't let myself rely on support of crutches or any device. I'll just lay down until it goes away and don't go out. I have the same problems with my legs and days I can't walk. The funny thing with me is the feeling of my legs hurting and not wanting to hold me up come and go.

    Sometimes for days, smetimes for weeks and just this past Nov. it lasted for 10 weeks. I also had severe pain in my body all over, couldn't walk without feeling like I was tilting sideways, bad headaches every day for 8 weeks straight, slightly disoriented at times. It was horific and hope that episode never returns.



    PS has anyone with Fibro ever experienced the episode I mentioned, noone seems to know what caused it and why so long. Bad fibro flare? who knows never had symptoms THAT severe.

    They did so many tests on my head and seen so many head drs. nothing really showed up to explain the symtoms, I guess that was good news, even wanted to test for for MS. I've had fibro for over 40 years and it definetly has progressed the last few years.

    They wanted to do a spinal but haven't decided to do that yet, if the horrible symptoms return I may consider that one. Beleive me I could choose to use assistance but my mind want give in to that point. I know it sounds crazy but I just can't make myself feel that helpless. I'm wondering if an

  12. catnip51

    catnip51 New Member

    Sorry about my reply, its a bad day I guess
  13. shell

    shell New Member

    I am 29 also and have had severe case for 7 months. I too was at the gymn every day and led a very active life style - dancing soccer. Now I struggle with doing 1/10 of what I did before. I have pain in my torso mostly... but legs and arms do get a great deal of soreness/weakness. Sounds like your legs are definitely getting the brunt of this dd though. I think we all have our worst spots. I have read a lot about this and so far this is what I can understand out of it.... yes your brain is getting very high levels of certain chemicals and signals that it is in a lot worst shape then it really is. Hence when I go get on the treadmill now for 30 minutes I wear myself out and feel pain for days when before I would of had to work out for about 5 hours and still I would not feel this kind of pain. Our bodies think that we have run a marathon!! It sure is hard to take it easy though, I really miss hard exercise and weight lifting. I hope your legs start feeling better!! Have you tried any supp's/ vitamins? It has not made a big difference but it has been the only thing that has made a small difference for me. Take care!
  14. Sweetmia

    Sweetmia New Member

    I have had CFS for over 20 years; diagnosed 1 yr ago!
    Anyway, the fatigue is my worst symptom, followed by the weakness in my legs and the difficulty walking.
    My doctor just started me on Strattera-A new drug from Eli Lilly. I take 40 mgs right now (he is increasing this dose to 60mgs). I also take Provigil for daytime sleepiness. I have finally found relief for the weakness and walking difficulties since using Strattera. Ask your doctor if it is appropriate for you. Drugs vary so much. What works for one does nothing or exacerbates the problems for others. I also eat very healthy, exercise and take vitamins. My doctor also said that it is a problem with my brain and that these drugs help the brain chemistry. i feel he is correct since my neurological work up was all normal--muscle testing etc... Amy
  15. nct

    nct New Member

    are the biggies for me also-CFS diagnosis.
    My legs are often a bit shaky; when it gets really bad, they go all "wobbly" and "noodley". If it is really bad, my arms will get weak too-sometimes I feel like I can even lift them high enough to the steering wheel of the car.
    However, I don't need assistance to get around. On the bad days, I just stay home and make concerted and conserving energy trips.
    Like I'll lay in bed for a couple hours, then get and hit the bathroom and the kitchen in the same trip, so I can go back to bed and not need to get up for a while again. :)
    Jackie-I don't know anything about chemical imbalances, but the idea doesn'st surprise me in the least.

    Hang in there girl!!!