is TREMBLING CFS or Neurologic disorder

Discussion in 'Fibromyalgia Main Forum' started by rhythm, May 18, 2009.

  1. rhythm

    rhythm New Member

    I'm a 55-yr. old male who's had CFS for about 3 years. Onset followed a bad flu, never got well, deep fatigue and sick feeling every day since,. getting progressively worse each week/month.

    The main symptoms have been the classic CFS ones: deep-to-extreme fatigue, feeling like I always have the flu, overall body soreness (especially upper back, shoulders and arms), brain not as clear, etc.

    Lately there have been a few new symptoms that make me wonder if I'm dealing with CFS or more of a neurological disorder. I experience an inner trembling, mostly in legs, sometimes upper body, that makes my legs feel rubbery and unsure when I'm walking, like they're so weak & shaky they're going to give out under me. They haven't yet, I still walk OK, but they feel that way inside, and it's an internal trembling, you don't see any outer shaking or involuntary movement. Also one arm (left arm) has become constantly painful, the kind of soreness you'd feel if you really pulled or dislocated your arm & shoulder, and it's been that way non-stop for over 4 months. Chiropractor said nothing wrong with the muscles-tendons, pain was "higher-order" based (meaning coming from my brain, not the arm itself.) Additionally, I'm now having regular bouts of anxiety and panic, even when no sudden new stressor enters my scene, even when I'm just relaxing at home.

    So I'm trying to determine of there's a neurological basis for these new symptoms and maybe even for the whole illness. The extra weakness and trembling and pain in one extremity could possibly be included in a description of some other neuro disorders like Parkinsons or MS, but I'm not manifesting any of the other obvious symptoms those diseases usually present with, so I've tended to rule them out. Advice is appreciated, or if you know of a good practitioner able who seems to be able to differentiate between CFS and neuro illnesses, thanks.
  2. rockgor

    rockgor Well-Known Member

    of this trembling as a CFS symptom. But as Nink says, can be different symptoms for
    different folks.

    I've had CFS for almost 30 years. Lately my right ankle has been giving out, but I
    'spect that's just old age.

    I hope you can find some help.

  3. SnooZQ

    SnooZQ New Member

    that can occur in MANY different disease states.

    While it's possible that your problem may be neurological, the fact that the trembling is not externally visible makes neuro a bit less likely. Your PCP can do a neuro screen & help you decide whether a neuro consult is warranted.

    However, if I were in your boots, neuro is not the first place I'd bet my healthcare bucks. Looking at your description, I'm wondering about your adrenal function. Adrenal malfunction is often a component of CFS distress. A bad flu bout can make the situation much worse.
    Have you had any adrenal testing?

    If you have a willing doc, ask for a low-dose cortrosyn/synACTHen stim test. If that gets nixed, surely an ACTH level & cortisol level, both 8 a.m. fasting, are warranted. If your ACTH is high OR if your am cortisol is in the lower quartile of the ref range, you've got good reason to pursue the stim testing.

    Best wishes.
  4. Achyten

    Achyten New Member

    to what your saying about your legs feeling shaky, trembly inside,,also if I go to write small print,, my hand gets really gets really shaky,,more shaky than i usually am with the hands.
    My legs feel heavy a lot,,but that inner trembling has been a problem for about 4 months or so.
    I have fms, cfs, and who knows what else...
    I haven't been checked out for this,,i been just accepting it,,cause it doesn't seem to matter what I bring up to the dr.,,, it's always the fibro. So I give up,,and put up.
    I"m sorry I wasn't any help,,just feeling a lot the same.
    I wish I had answers for myself too.
    I"ve actually been thinking that maybe I have MS,,,as it does run in the family. Who knows?
    Hope you find some answers......
  5. Nanie46

    Nanie46 Moderator


    My FMS started after a flu-like illness too.

    CFS and FMS are just sets of symptoms that have been given a name and it is declared that there is "no known cause".

    It only makes sense that everything has a cause....often it is infectious.

    After 21 years of thinking the cause of my illness was caused by a virus, I discovered through my own research that that it was really caused by a chronic borrelia burgdorferi infection....a bacterial infection otherwise known as lyme.

    I also found out I have bartonella, a common coinfection. Other common coinfections are babesia and ehrlichia.

    Please take a look at the info in the following 2 links. Each has a symptom list which is very helpful.

    the symptom list is near the back of the booklet above.

    the symptom list is on pages 9-11 of the above paper by a lyme expert.

    You could easily have one or even all of those infections.

    In the 2nd link there is great info about the common coinfections, breaking down the symptoms, etc on pages 22-27.

    The entire paper has tons of valuable information.

    Anxiety and panic attacks are common with bartonella, I believe.

    You don't need to have every symptom on the list, but if you have numerous ones, suspect lyme and coinfections.

    Lyme can also imitate MS, Parkinson's, lupus, RA, ADHD, Alzheimer's, Autism and other illnesses leading to misdiagnosis.

    Many, many people who were first diagnosed with CFS, FMS, MS, Parkinson's, RA, lupus, and other illnesses, later found out that the cause of their illness was a chronic borrelia burgdoeferi infection.

    Unfortunately, 99% of Dr's really know nothing about lyme but think they do. They do not know how to recognize it, diagnose it or treat it properly.

    Let me know if I can help you.

    Feel free to leave a post for me on the lyme board anytime.
  6. xchocoholic

    xchocoholic New Member

    Could be from gluten intolerance too. Try eating just meats, fruits and veggies to see if it helps. Organics if possible ... My narcolepsy was gone within a week after eliminating gluten, etc but my myoclonus took 7 months and my ataxia took 1 year. Gluten can cause a multitude of nuero symtpoms ... marcia
  7. gapsych

    gapsych New Member

    While there it is possibly the trembling could be what people are suggesting, I would go to your PCP, who can look at the whole picture and refer you to the appropriate services.

    You can try some of the above ideas with diet, etc., however you do not want to wait for a diagnosis that may need to be treated now. I would hate to see you delay treatment.

    Let us know, what you find out.


  8. cfsgeorge

    cfsgeorge New Member

    i would go see a neurologist first if i were you.
  9. romalaw

    romalaw Member

    I have had cfs for 11 years and have experienced every one of your symptoms. They frightened me so much that I've had two or three neurological exams to rule at MS,parkinsons, etc.

    I believe that cfs causes many neurological symptoms, though it is not officially labeled a neurological disease.

    Small doses of klonopin control the inner trembling, zoloft the anxiety/depression and the weakness in my legs/arms comes and goes. It's worse when I am tired.
  10. andreake

    andreake New Member

    I am sorry you are going through this! I recently went through some serious neurologic problems, thought for sure I had MS. Scared me to death. What I found out though was it was side effects from the Lyrica I was taking. Neurontin is also a similar drug, so could it be a medication side effect?

    I would absolutely go to your Dr with your concerns.

    There is a questionaire on Web MD for MS that you can fill out and print out for your Dr. Which might help the Dr to understand better in black and white what is going on with you.

    Good Luck, thoughts and prayers with you

  11. sascha

    sascha Member

    it would be good to find out what's going on. i have dystonia in addition to cfids, and my form of it is essential tremor that affects my head and speech. i feel it in my neck especially.

    as far as i know, shakiness is not part of cfids. it could be something that will pass. one never knows. but it might be good for your peace of mind to have it checked out.

    what we all must do is create the highest quality of life for ourselves that we can in the midst of what we're dealing with. it's a constant challenge for sure. i get down about dystonia affecting my speech, then i went on youtube and saw other people with essential tremor affecting their hands and arms with uncontrollable shaking, and i realized how fortunate i am that i can still paint, which is a saving grace for me in the midst of my illness.

    also, another discovery- well a re-discovery- is Eckhart Tolle tapes and books. his wisdom restores peace and perspective for me. best, Sascha
  12. hatbox121

    hatbox121 New Member

    I would go see a neurologist. Better to rule everything else out than guess.
  13. Empower

    Empower New Member

    I am doing a search as I have CFS and FMS and this "internal Shaking" started about 6 weeks ago

    I don't know what the heck is going on!

    Also, my mouth is starting to feel like it is numb and trembling, although you can't see it

    I don't want to go to a doc right now, as there are too many flus going around, and I don't need that

    Funny that this started after a bout with a stomach flu
  14. 3gs

    3gs New Member

    I too have these symptoms. To the point of being tested for MS and Parkinsons.

    I went on all 3 drugs for MS. Went on drugs for Parkinsons. Did not have either disease. It was a nightmare.

    I think you should ck things out with your doc. Mine are ME/CFS/fibro/Lyme/Post Polio etc. yes as discussed before on board these symptoms seem to be in CFS.

    Mouth numb and trembling(buzzing)=nerve pain.

    good luck
  15. Empower

    Empower New Member

    What do you mean by nerve pain?
  16. msbsgblue

    msbsgblue Member

    You might talk to him, leave a post. He goes to Chit Chat a lot. He has all the same symptoms, has tried everything in the book including some unconventional ones, spent thousands of dollars which almost broke him before we met.

    He has now not only got tremers, his muscles do whatever they please in his sleep. He jerks uncontrolably at times, legs, arms, etc.

    His name in here is Billcamo.
  17. Janalynn

    Janalynn New Member

    I have FM not CFS, but wanted to respond because your arm pain is something I experienced two years ago. It was the strangest and most painful thing- did nothing to my arm at all, then one day my left arm started hurting terrible. I couldn't let it hang at all, had to hold it close to my body - really couldn't use it much at all. It was very weak and to this day I still have a hard time describing the exact feeling. I just know that I could not get away from it.

    I went for PT and the therapist couldn't find any reason for it. Asked me over and over again if I'd ever been in a car accident (no) It finally resolved itself after about 3 months. In the meantime I got my official FM diagnosis. When I say the rheumy and told him about that particular pain he said he thought it was related to my FM. HOWEVER, it was different than any other pain I'd ever felt.

    My legs tremble, feel rubbery as well sometimes - very weak. I do have tremors throughout my arms and legs that I can feel inside. Sometimes you can see them on the outside of my arms.

    I know that FM is a Central Nervous System disorder - so for me, I guess this comes with the territory. I don't know as much about CFS - I just wanted to let you know that I certainly understand some of what you're dealing with.

    It's been a bit since your initial post. have you seen a neurologist yet? Anxious to hear an update.

  18. italiano

    italiano New Member

    same with me. ruled out all neuro, it's just the cold hard reality of CFS/Fibro.
    i never dreamed i would need to be on klonopin and lexapro but it happened.