Does anyone suffer from Essential Tremor?

Discussion in 'Fibromyalgia Main Forum' started by srobins, Sep 28, 2005.

  1. srobins

    srobins New Member

    Hi! I am trying to find out if anyone else that has FM and/or CFS has also suffers from Essential Tremor. I just found out I have this condition - very embarrassing for me. I have FM, CFS, IC
  2. bozey

    bozey New Member

    about 6 months ago and they lasted about 2 months. My neuro said to cut back on caffine. I didn't, but they finally went away. And, they can be embarrassing, like if you're in public and trying to write a check and your hand has to LAND on the check so you can write it! I would just giggle and say "Good grief!" and just keep writing. Sometimes you just have to laugh at yourself. I know, the clerk is probably thinking, do you need a fix or what? LOL

    And, it is a pain in the rear at other times. They still come and go.

    I have CFS and Fibro too.

    Just another one of the lovely things we get to endure!

  3. lurkernomore

    lurkernomore New Member

    My tremor was diagnosed by a neurologist years before I knew I had fibro. Back then, I was told it was a benign familial tremor and thought that had to be the case, as many people in my family have the same thing.

    Now I hear it referred to more often as an essential tremor and it does not matter what they call it, so long as they treat it and try to make it less obvious and life altering.

    I was put on Klonopin for my tremor and back then, was told the Klonopin was not addictive. Now they say it is and every once in awhile, my doctor tries to be cute and take the Klonopin away and I will fight him bigtime over this because without Klonopin, I have zero quality of life. I cannot even write my name, my head and body shake to the extent that I have even been asked if I have Parkinson's disease. So does it bother me to take a med which is addictive, well, maybe a little bit. But would I go off the med and go back to being nonfunctional due to tremor-no way! I hope you can get yours under control because as you said, people can be very cruel about things that they do not understand or have experienced themselves. Best to you!
  4. tngirl

    tngirl New Member

    Yes, I have had it for 10 years. Mine is not as extreme as the person that posted above. It is only my right hand that shakes. No caffeine helps. It is also worse if my pain is worse or if I am tired.

    It is noticable when I use an eating utensil or hold a glass to drink. Mine does not happen when I am at rest. It has affected my handwriting to some extent. I write larger and not as "nice" looking.

    I don't take medication at this time.

    I have another movement disorder that is more bothersome. I have spontaneous twitches and jerks. All small range movements but very annoying. Unlike the tremor, these happen when I am at rest. If I'm using my hands, they don't twitch, but my foot might.

    I also have FM, IBS, GERD, Sleep apnea, degenrative discs and degenrative facet disease, osteaarthritis.....just lucky I guess!

    Atleast my movement disorders don't hurt.

    There are neurologists who are movment disorder specialists, but there is not one in my area.

    I hope you feel better soon.

  5. luvmystang

    luvmystang New Member

    I am undergoing a series of extensive tests not only for the Fibro but because in the beginning of August I had a right hand tremor that lasted about 2 hours during which time I became unconscious and was taken to the ER.

    My CT and MRI of the brain so far came back fine and the EKG at the hospital were fine also. Blood tests did not show diabetis either. I had a lumbar puncture on Monday and Friday will go for an EEG, VEP, BAER and a halter monitor for 24 hrs for my heart.

    The tremor comes and goes, only in the right hand and definetly more noticable when I am in pain or tired.

    Has this happened to anyone else?

  6. LollieBoo

    LollieBoo New Member

    and I'm only 30! just had neurologist tell me yesterday there's no neurological reason- after doing an MRI/MRA and no other neuro testing...??? my hand shakes terrible sometimes- I can tell a big difference between my normal writing and when I'm having tremors- it looks like a kindergartener's writing!

    Sometimes when I'm sitting there, trying to just sit properly- you know, with my knees together like a proper lady (!!Ha!!), my legs start to shake like crazy- that is embarrassing!

    I also get painless twitching and muscle jerks during the day. It is at night that I find muscle spasms bothersome, though. It ususally wakes my DH up first, but often, I will wake up with a nasty cramp from a muscle that has been spasming. I take Zanaflex, but it doesn't stop all of that.

    My neurologist (as of yesterday- she's somebody else's neuro- NOT mine!) said that there is nothing to suggest it is neurological, so she would not do further testing and it must just be stress... what a brilliant diagnostician to be able to rule out EVERY CNS abnormality from a brain scan! She should win the nobel prize!

    Sorry for my cynicism, but I was appalled...

    Take care- steady on!
  7. debch

    debch New Member

    Hi! Yes, I also have had Essential Tremor for nearly 3 years. Same as with others, when I'm stressed or tired they will be worse. When I was put on blood pressure medication it has helped the tremors (just a bit).
    I have FM, CFS. I also had blood work positive for lupus. (Now GP says may not be lupus) ? Just hanging in....

    You take care
  8. vp

    vp New Member

    Can be very embarassing at times.

    I've had all sorts of tests done and there ane no abnormalities that show a cause. Good - because it's not Parkinson's; bad- because nothing that I can tolerate helps it.
    I've tried:
    Inderal -(normally used for migraines, but usually helps tremor too) gave me the nastiest migrains I've ever had, and they lasted until it was time for my next dose. Got rid of the tremor though,not a good trade off, I'd rather shake than hurt!
    Neurontin - this worked for a while ,but had to be constantly increased to maintain it's effectiveness. Also put alot of weight on me, the last few weeks I was on it I was gaining 10 lbs a week. Enough of that!!
    Klonopin - helped a little, but sent me to a world far far away. Not sure where I was, but it wasn't anywhere on this planet.
    Topomax - was to replace the neurontin, Gave me every nasty side effect listed on the sheet, and some that weren't. I was a mess. The cascading vision was kind of cool though, Creates your own entertainment, just move your eyes around, and everything you see sort of follows your eyes. I could make my octogon window do figure eights on the wall. I guess this one sent me off to another world too.
    At this point I just put up with the shaking. The Topomax was too scary, not ready to try another one yet.

    For me the most embarrasing time is when I'm trying to put something in, or take something out of my wallet, and I can't do it. People will ask why I'm shaking, and I don't have an explanation. "Doctors don't know, and can't fix it" is usually my reply.

    For me it was the beginning of my symptoms of FM. (more in my bio.)


  9. meowchowchow

    meowchowchow New Member

    I don't know if these are tremors or not. My arms and legs shake really bad when I'm tired or having an "attack" like I call it. It's hard to walk or type. I'll have it almost every day for a month and then I won't have it for a month. I also had extensive neuro testing done last year and all of my symptoms were chalked up to "stress and anxiety". Hmmm

    I also feel weak and tired when it's happening. Maybe that's what causes it. I don't know. I also get the jerky/twitchy thing in my arms and legs and my neuro said "not to worry about it". I could have sworn I had MS.

  10. sunflowergirl

    sunflowergirl Well-Known Member

    My Mom who is 97 has had this for at least 50 years. Her head shakes, especially when she is nervous and under stress. I went online and looked it up. I found it especially interesting that they found a strong genetic link to Chech families.

    She has been given L-dopa to control it and it helps greatly. She fell in April and was without her meds. for over a week and she got very bad. As soon as we realized that she wasn't getting this, and it was started up again, a giant difference was seen.

    She also was very embarrased by this and used to tell people she had Parkinsons because she didn't know what it was. She's had two neurological tests and they both said se doesn't have Parkinsons.

    This apparently is the worst when you try to do fine motor skills like writing, holding a glass of water, etc. I'm finding that when I try to put on mascara my head starts bobbing around too.

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