Shaking and trembling with ME/CFS

Shaking and Trembling with MECFS BLOG

I was lying in the bath relaxing last night when I felt the shakes coming on... This is what I get for walking to the bathroom and getting undressed. I started feeling a bit of the internal tremors at this point, I imagined it might come to the shakes, and then as I lay in the tub to rest, before washing, they suddenly started up. (see the video clip below)

This is just the start, it then takes over my whole body and that's when holding my phone, or anything else for that matter, becomes very hard.

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I ended up getting straight into bed after my bath and going to sleep. Mum dried my hair first, I used my earplugs to help eliminate some of the noise, and that was the end of the day for me. Hours before my usual bed time.

Once these shakes come on, there's not much you can do properly. Each time it happens I get a tiny glimpse into what life must be like for my friend with Parkinson's. It is not something I'd wish on anybody.

You might be wondering why I had my phone with me, I was playing some relaxing ambience music while I relaxed in the tub. I hadn't really done anything strenuous all day. I had remained on the sofa, watched some TV, chatted with my family, did some social media sharing and ate my usual 2 meals. Nothing that would usually trigger the shakes.

When these shakes came on last night, I was just lying in the tub full of magnesium flakes to relax my muscles... Ironic really as the shaking is a common sign of muscle fatigue.

It's the kind of thing that happens when an athlete has completed a strenuous workout, run a marathon, over exerted their muscles, or there's a build up of lactic acid in the body. You might also get similar shakes if you're hypoglycemic and do a workout which depletes your glycogen stores.

In ME/CFS we get this same effect from doing the slightest exertion, like getting undressed for my bath. I also get it from cutting vegetables or standing upright for more than a couple of minutes, this is the reason I can no longer safely cook my own meals. 

It comes down to muscle fatigue, the lack of energy at a cellular level. Each cell requires energy to do its job and our mitochondria are not able to produce enough energy for our need. So we get the symptoms of overexertion after very little exertion.

We're in energy debt basically. We have to learn to budget else we will constantly be in debt and that's when everything gets shaky.

It's usually accompanied by muscle weakness, so along with the shakes, I'll also have a weak grip and difficulty moving any part of my body.
 I've dropped knives in the kitchen, and broken a plate, I've burned my arm on the side of a frying pan because I couldn't keep my arm high enough. I've been unable to pull up my trousers or turn over in bed, dropped my phone on my face and numerous other places because my grip became too weak.

Autocorrect no longer understands what I'm trying to type as my hands become too shaky and I have to just drop everything and lie down for total rest. I usually drink a glass of my adrenal cocktail or salt and water to help my electrolyte levels and sometimes this does bring some relief, but nothing works quite as well for the shakes as rest.

The initial trembling is mainly internal, you feel like your whole body is shaking, but nothing is visibly shaking. It seems to be a completely neurological symptom, like all your nerves are misfiring. When you reach this point it is important to stop what you're doing and rest. Completely.

You've already overdone it when the tremors start.

Shaking and Trembling with MECFS PIN

PIN Shaking and Trembling with MECFS

Do You Get The Shakes?
What are your triggers?
Have you found anything that helps it pass?

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  • I’m sorry you too have to deal with the shakes. I get them as well, seemingly from exhaustion. Oddly, one time I was at the doctor and they were doing an EKG and I couldn’t stop so they gave me heated packs, like warmers, and it really helped. The nurse said it meant my CNS was overstimulated. I have no idea if it’s true. It irritates me to no end when doctors say things like, “don’t be scared”…I’m yeah I’m shaking because I’ve been waiting forever and I’m exhausted now. And BTW shouldn’t doctors know this is a symptom instead of treating us like frail hypochondriacs? A girl can dream😊💭

  • Sarah says:

    I havent had anything like this since I started Yoga Nidra (type of meditation done lying down), thankfully, and not quite to this extreme but I know exactly what you mean about that internal shaking. I hope you feel a bit better soon.

  • Chronically Hopeful says:

    Yes! I have also found heat helps. I live under blankets now! Keeping my body warm really does help relieve the aching and shaking. What they should know and what they make an effort to learn are two very different things in some cases unfortunately.

    I look forward to the day that ME/CFS is taught as a real biological condition in med school… That’s a future to look forward to: Doctors who know!! 🎉

  • Astrid says:

    Oh, I neve k new people with ME/CFS could get tremors. It sounds quite hard to deal with. I get mild tremors in my hand or leg occasionally, but they don’t happen often enough for me to seek medical attention for.

    • Chronically Hopeful says:

      Yes! It’s quite common. It’s usually a sign you’ve overdone things. But we don’t all get the same set of symptoms. Mine have changed over the years. Come and go. I have been in doctors surgeries and in the hospital when they came on and there’s nothing they can do for you that you cant do at home… rest. hydrate. eat something. Going out when you have the shakes is the last thing you need to do as it just adds to the exertion causing the shakes.

  • Claire says:

    Hi Char – thanks for sharing this on Blogging in Bed! Great post – so well described. I have included your post on my regular feature Monday Magic – Inspiring Blogs for You! Claire (PainPalsBlog)

    • Chronically Hopeful says:

      Thank you for linking up! Glad you enjoyed the post. I look forward to reading the other posts you’ve linked.

  • Deary Darling says:

    Thank you for posting this. I have been mostly bed-bound for the last decade … the usual fatigue, pain, feeling like you’ve got the flu on steroids, etc… but i somehow managed to avoid these shakes until this year. To be honest, it scared me. I’m not thrilled to have them, but i am glad to know that they’re at least on course for this wretched, beastly disease. Maybe i’ll just get one of those feathery fringe dance costumes and lay here entertaining my cats lol

  • Sylvia says:

    Thank you. I appreciate this article, though I am sorry you get that shakiness. I get it too and had it for 5 months now. Mine started with a flu like virus but don’t know what. Possibly H1N1 in March.
    You describe it perfectly and that is what I experience almost every day. But if I try to describe it to anyone, the first word that pops into their mind is “anxiety”.
    I know it is not anxiety for me anyway and has a physical root. Unfortunately people seem to equate shakiness/inner sense of trembling etc with anxiety and it’s hard to get them to understand.
    It feels exactly as if my body has been held in a “stress position” too long. People know when they do that their bodies start to tremble after a few minutes.
    It’s deep rooted exhaustion.
    I wish I knew a cure. It’s unpleasant.

    • Sorry to hear you’re also shaking, Sylvia. It really is unpleasant. Makes you clumsy and weak, can’t really do much while you’re shaking like that. I like your description of being held in a stress position. It is like that!

      Thank you for sharing your experience. I hope you find a way to calm the shakes.

  • Garyt Zahnow says:

    I’ve been getting tremors for several years, wasn’t sure what, or how I got them. I asked my neurologist, but she claimed I was making it up, or perhaps a side effect, but it was really irritating to me. I’ve noticed it flutters in my heart, causing extreme excitement and nervousness! I start to get panicky and I feel like I’m racing, or a earthquake is happening in my body! This happens maybe 2-3 days out of the week. I also drop things easily. Anyone else have similar experiences? Thank you, Garyt

    • Hi Garyt, sorry to hear your neurologist isn’t very helpful. I imagine you’ve been tested for MS? Do you have an ME or CFS diagnosis? Those symptoms all sound familiar, but it is always best to make sure it isn’t something else causing them.

  • Kiki says:

    I am so inspired by your positivity!…since January 2018 I was hit with 3 viruses (EBV, CMV and Dengue Fever) along with toxic mold poisoning 🙁 …..this has been the worst year of my life. I have entered a phase of shakiness and patches of neuropathic pain. I’ve started to see a very good traditional Chinese medicine practitioner. I don’t really want CFS or fibromyalgia diagnosis and trying my best to work with this new body of mine to give it a nudge in the direction of homeostasis. I know from all I’ve learned (too much!) that my CNS has been affected…..full battery of blood tests and 2 MRIs….I’ve seen at least 15 doctors….no MS, no diagnosis…..but feeling like my old body has been stolen and I was given a crap replacement…..anyway, it is comforting to hear that others are going through this shakiness and exhaustion….thank you so much and take good care xxx

    • Hi Kiki, gosh, you’ve had a lot going on! It’s understandable that your body would be struggling now after all that. Your experience sounds very familiar. I hope your Chinese medicine practitioner will be able to help you out. All the best x

  • zzz says:

    Have you had your blood sugar tested, especially during one of these episodes? A simple remedy to try would be simple carbohydrates, such as raisins or other fruit, or more complex carbohydrates, such as whole grain crackers. Concentrated protein may also help, such as peanut butter. And of course you can combine these, such as peanut butter on crackers. I have found all of these dietary approaches to be helpful at various times, and I continue to use them all. For me, complex carbohydrates tend to help the most. The effect is pretty immediate.

    • Thanks Zzz, it’s not low blood sugar, I’ve been at doctors and hospitals when it happens, they’re tried all the basics, just have to wait it out. I do find electrolytes help a bit.

      But it was almost constant the first 2 years (was on paleo diet, lots of fruit and veg and nuts etc) much less shaking now on the ketogenic diet in my third year (very low carb, high fat and moderate protein). It’s most likely muscle fatigue, lack of cellular energy production due to our “broken” mitochondria is likely the root cause of that.

      Oddly, eating carbs doesn’t fix the shaking, but it does increase my pain and fatigue though.

      I’m glad it helps you! It’s so bizarre how we all respond so differently to things, isn’t it?

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