New here with a question...

Discussion in 'Fibromyalgia Main Forum' started by me-n-fred, Apr 22, 2003.

  1. me-n-fred

    me-n-fred New Member

    Hello everyone,

    I've been lurking around the board for several weeks now, reading all your posts and learning a TON from all of you. So now I've decided it's finally time to join the group!

    Anyway, I'm in my mid-20's, been dx'd for a little over 3 years, been sick for around 4 years. I've tried almost every treatment known to man without a whole lot of luck. I'm just finishing up with a treatment that involved lots of exercise along with Duragesic patches to mask the pain. (BTW, it didn't really work for me--too many side effects.) I'll tell you more about myself later if you'd like to know, but right now I have a question.

    I don't really remember when it started as far as my fibro history goes, but when I push my body too far, either a lot of pushing in a short amount of time, or gradually doing too much with not enough rest over a longer period of time, my body gets to the point where it almost decides it's had enough and shuts down. It's kind of hard to explain because I rarely remember anything when it happens and have to rely on what others tell me. They say I'm usually in tons of pain, lots of muscle spasms, stiffness, that when I do talk, I make no sense whatsoever, and there are also periods where I appear almost unconscious. These 'episodes', as we call them, can last anywhere from a few minutes to several hours. I've talked to lots of drs about them and they either look at me like I'm crazy or tell me they've never heard of such a thing. So I'm hoping that maybe one of you have had similar experiences or can give me some insight as to what's going on.

    Thanks so much for your help!
  2. pam_d

    pam_d New Member

    Boy, I have not had this experience, but I'm hoping you'll get feedback from others. Just wanted to welcome you! I DO believe that FM has so many bizarre symptoms, that nothing surprises me anymore...many of my symptoms are weird neurological ones. I'm figuring that since you've had a long FM history, you've already been put through the gamut of neuro testing (MRIs, etc) so I'm not sure what would explain this (besides FM) if you've eliminated everything else. Hoping that others here have more specific experience for you. But welcome, & glad you found us here!

    Hugs,
    Pam
  3. Susan07

    Susan07 New Member

    Movin' it up for the evening crowd.

    Best of luck, I haven't had this happen, maybe someone else?
  4. scottabir

    scottabir New Member

    Welcome to the board! Lots of great info here, as you know.
    I have not had those "episodes" that you experience. I ws wondering if have ever been tested (I thinks there is a sleep test) for Narcolepsy. I don't know much about Narcolepsy either but it sounds similar. Hopefully someone on this board will be able to help you better than I can. I just wanted to say Hi and welcome!

    Abi
  5. Shirl

    Shirl New Member

    Hello! Glad you have decided to join us. As for those episodes you have, I would think that 'Nink' probably hit the nail on the head. It does sound like seizures.

    I read 'somewhere' where FM people do and can get seizures, but as far as I know I have not had them.

    The pain can get so intense that I sometimes don't remember everything that went on after the initial flare is beginning to wear down. But I think all of us has experienced this, especially with the spasms.

    I would insist that your doctor test you for seizures etc. If this is what you are having there is medications for it.

    Again, welcome to the board, and I hope our friend Klutzo is around, she is great with medical stuff!

    Shalom, Shirl
  6. rainstorm

    rainstorm New Member

    ...it sounds an awful lot like seizures to me. My friend experiences almost exactly the same symptoms, except he's not always aware of when he has these "episodes." His doctor sent him to a neurologist and a neurosurgeon, and the neurosurgeon observed him actually have a seizure in his office. The neurologist said that the seizures were of the complex partial type, and that they were likely caused by epilepsy. Some risk factors for developing epilepsy include early childhood head trauma, injury to the brain or blow to the head, genetic predisposition, whiplash trauma...I forget what else, but there were several factors. Periods of stress, particularly when anxiety levels rise, can trigger seizures for people with epilepsy. And, so can sudden changes in blood sugar. Or lack of sleep. Can you ask your primary care doctor to refer you to a neurologist for testing? You will probably need an EEG, and a sleep deprived EEG as well. You may want to get a friend or family member who has observed your seizures to go with you, to describe your behaviors when you have a seizure. Have them write down, and you yourself write down, when and where you have seizures. Write down the time of day, did you eat that day or not, what events were happening prior to the seizure, how long does the episode last, etc. Also, have your friends ask you routine questions after you first come out of a seizure. Can you recall the day, date, day of week? Time of day? Who the president is? If the parts of your brain that process and store memory are affected by the seizures, you may have trouble answering their questions.

    Okay, hope I didn't bore you to death with all that! I've learned a lot about epilepsy recently and thought maybe I'd share it. By the way, my friend doesn't have FM, but he does have widespread arthritis, both RA and osteo, and he's lived in chronic pain for half his life...

    Best of luck to you; I'm sorry to hear you are having trouble finding a way to feel better. As far as exercise goes, have you tried gentle swimming? It's a godsend for me. Though, til you get your "spells" checked out, you might want to be careful of any risky kinds of exercise. Please give us updates about your symptoms...

    Take care,
    Cerena
  7. klutzo

    klutzo New Member

    Most people with FMS will have times when they push themselves too much and their bodies absolutely refuse to go another step. This is due to running out of ATP (Adenosine Tryphosphate), the main energy source of our cells. We are not able to assimilate Magnesium properly during the Krebs cycle, and the result is that we can suddenly and totally run out of energy. If we try to keep going anyway all sorts of awful things can happen. In my case, my body rings all the alarm bells and I have the queen of all panic attacks that can go on for hours. Before I knew what I had, I ended up being hospitalized because I became delirious from lack of sleep once, and two other times pushed myself until I could not walk. However, I think the others are correct that your problem may be more complicated, and I hope you will have a complete Neurological work-up soon to rule out seizure disorders.
    Please let us know how you are doing,
    Klutzo
  8. me-n-fred

    me-n-fred New Member

    Everyone--

    Thank you so much!!! It's so nice to have people not call me crazy for saying that, or telling me I'm imagining it, or it's not as bad as it seems, etc. (not that I thought you would, it's just nice for a change!)

    I will definitely look into your suggestions--the tests, seizures, loss of ATP, and everything else I can't remember at the moment.

    Again, thanks so much for your help and for welcoming me!! It's good to be among friends!

    Melea
  9. Fibrolady37

    Fibrolady37 New Member

    Hiya
    Sorry thats never happened to me,maybe someone else can help?
    Sharon D(UK)
  10. layinglow

    layinglow New Member

    Hi--and welcome to the board its nice to meet you.
    I think the suggestion of a neural work up is a good one, we always need to rule out other causes besides FM to be on the safe side.

    You might be interested in reading some of Dr. Chaney's articles. He discusses mini-seizures in some FM'ers.

    I have severe neural symptoms when I have overdone, in which my brain cannot process, speech is impossible, and I have myclonic jerking, and neuralgia. I am not unconcious but sensory stimulation, is certainly brought to a halt. It is like the brain has short circuited and can process no more.

    Klonopin has worked wonders for this, and I take a dose under my tongue,as soon as the mild trembling and jerking are noticed, which are precursors to extreme symptoms.

    I do believe this is due to the Central Nervous System changes that have been revealed on PET and SPECT scans--which have affected portions of our brain. It seems a subset of patients are more affected by this.

    I believe you can find Dr. Chaney's articles on seizure activity, and the use of klonopin in the Library at this site.

    Please get a neural work up---to be sure.

    Best wishes, LL