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.


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

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