• Tracy Myall

    Member
    February 18, 2020 at 2:36 pm

    I have had arm and hand tremors since I was in my 30s but I was not diagnosed with MD until 2018 when I was 55. I now have neck tremors as well sometimes. I saw a neurologist at UCSF and he said they were not related to my MD but were Essential familial tremors. That’s interesting that you have them and they are related. I have Myofibrillar Myopathy. What type of MD do you have?

  • Leah Leilani

    Member
    February 18, 2020 at 4:07 pm

    I have a type of MD called Mitochondrial Myopathy. It’s a very rare form. So the doctor thinks your tremors are inherited? Are your tremors constant or only happen when your muscles are under stress?

  • Barry Glaberman

    Member
    February 18, 2020 at 5:35 pm

    I have spasms, not shaking per se, like in Parkinson. Because of this, I no longer drive. I never know when it is going to happen. It can be mild like when you get a chill or it can be violent. My wife refers to it as the bedrock twitch from the Flintstones.   It is bad that I guess we have to make lite of it.  She even says that I spasm when I am asleep. I wish I had an answer to it, but it is somehow related to the MD.

    • Danielle "Dani" Liptak

      Member
      January 23, 2023 at 10:38 am

      Could it be dehydration? Lack of a vitamin or mineral in the body? Stretching? It seems like there is always a list to go through and cross out to figure out the cause or treatment.

    • Leah Leilani

      Member
      January 24, 2023 at 2:01 pm

      Barry, have you brought this up with a doctor or thought about seeking out a physical therapist to see if they could help?

    • Leah Leilani

      Member
      January 24, 2023 at 2:01 pm

      Barry, have you brought this up with a doctor or thought about seeking out a physical therapist to see if they could help?

  • Karen Atkins

    Member
    February 19, 2020 at 7:37 am

    I have FSHD and my hands starting shaking mostly when I pick up something or type. Not all the time and mostly one hand. Started about 1 year ago. Any thoughts if related to the FSHD?

    • Danielle "Dani" Liptak

      Member
      January 23, 2023 at 10:39 am

      I notice if I move rapidly or repeatedly the weakness/ shaking starts, so taking frequent breaks, although frustrating, helps.

  • Danielle "Dani" Liptak

    Member
    February 19, 2020 at 12:46 pm

    Sometimes when I try to reach down for something, it feels like my muscles are shaking and might give out. It has happened before, and it can be scary! I want to continue to push myself a little, but I need to be more aware of what my limits are becoming.

  • Tracy Myall

    Member
    February 21, 2020 at 12:47 pm

    My tremors come and go. I noticed that they are worse after I have been to physical therapy and my muscles are tired. And also when I am under a lot of stress. I suffer from anxiety so that doesn’t help the situation 🙁

    When I first noticed them it was in meetings at work when I would try to drink coffee out of Styrofoam cups. My hands would shake so bad the coffee would spill. So I had to use heavy cups. At this point I’m avoiding caffeine completely because it seems to make it worse. But this all started many years before my diagnosis of MD. It has now just gotten worse.

  • Leah Leilani

    Member
    February 21, 2020 at 3:16 pm

    Barry, the “Bedrock Twitch” is a hilarious way to refer to your spasms! I too get muscle spasms that are random that aren’t related to my muscle weakness. I’m sorry to hear that your spasms have caused you to quit driving. I’m sure that was difficult to do but I’m glad that you take your safety that seriously. Have you brought this symptom up to your doctor? I understand if you haven’t because there could be lots of tests in order to diagnose the spasms.

  • Leah Leilani

    Member
    February 21, 2020 at 3:21 pm

    Tracy, I think removing caffeine from your life sounds like a good plan even though it isn’t the root cause of your shaking. I have Tachycardia and my heart rate can increase to 150 bpm which can be another cause for shaking for me. I try my best to avoid caffeine as much as possible because my heart rate is already so high (consider me permanently caffeinated 😂).

  • Leah Leilani

    Member
    February 21, 2020 at 3:25 pm

    Yeah, bending down seems like a strenuous pose on the body for many people. It’s like when people say they feel old I’m like uh, no. Come walk (roll) in my shoes for a day. I feel so old I need a trash picker-upper for things that fall and I can’t reach 😂

  • Pete Barron

    Member
    February 24, 2020 at 7:49 pm

    My hands don’t tremble too much, but they often “forget” that they’re holding something and drop it. They don’t have much reliable feeling. I have a service dog that I have been working with for most of the last year. She already has learned how to help me up when I fall and right now we’re working on picking things up that I drop. That will be a big help because I lose a lot of things by dropping them and not knowing it and rolling on.

  • Tracy Barhite

    Member
    February 25, 2020 at 9:58 am

    I also have muscle spasms and shaking.  I first noticed the shaking shortly before my diagnosis in 2015.   I have IBM  (inclusion body myositis) it too is a rare form of MD.  My shaking or spasms can happen in my arm’s or leg’s and usually when I am tired or I have over done it.   Stress and having a cold or sickness also affects my muscles.  My muscles can just give out at any random time which causes me to drop things or at worst to fall.  As a result I try very hard not to overwork myself.  My goal is to stay healthy and stress free.

  • Leah Leilani

    Member
    February 26, 2020 at 12:24 pm

    Pete, I’m sure that’ll help you so much to have your dog perform that task for you. I’m sure the training is a rigorous process but will be totally worth it.

  • Leah Leilani

    Member
    February 26, 2020 at 12:29 pm

    Tracy, one of the worst an most stressful things about MD is when the unexpected happens to our bodies and effects our lives. I hope that managing your health gets easier.

  • Pete Barron

    Member
    February 26, 2020 at 8:48 pm

    Leah, the dog training does take a lot of time When I’m home we go to group class twice a week, and then we work on things on our own the rest of the week. It is a lot of time, but I really enjoy having a dog for company and she is getting to where she helps me quite a bit. We have been in Mexico for the last 2 months and that has been a ton of explaining. Most people where we go have never seen a power chair never mind a service dog. The shakes I get are mostly my tongue trying to explain all this stuff in my bad Spanish!

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