Shaking And Trembling With ME/CFS

Feet in a bath tub, water moving. Title reads Shakes and Tremors with ME/CFS. Myalgic Encephalomyeitis causes visible body tremors.

One of the most frustrating and debilitating symptoms of ME/CFS is the shaking and trembling after minimal exertion. Something that healthy people might get after a strenuous exercise. I was lying in the bath relaxing last night when I felt the shakes coming on. This is what I get for walking just a few steps to the bathroom and getting undressed. I started feeling a bit of the internal tremors at that 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.


Debilitating Tremors In ME/CFS

Imagine for a moment your whole body is shaking. You can't write or type properly, you can't walk straight, you're clumsy, your grip is weak as the muscles in your fingers are shaking too. It really is the end of any plans you might have had when the shakes come on.

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.

Shaking and Trembling with MECFS PIN

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Bathing Is Exhausting

You might be wondering why I had my phone with me. I was playing some ​calming 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.

Wh​y Do I Get Tremors And Shakes?

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. But these shakes won't improve with a bit of carb loading.

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. ​Living ​independantly is now hazardous.

The Energy Deficit​ In ME/CFS

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 ​basically functioning at an energy deficit. We have to learn to budget else we will constantly be in debt and that's when everything gets shaky.

The Effects Of ​Energy ​Depletion

It's usually accompanied by muscle weakness and pain, 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.

Feet in a bath tub, water moving. Title reads Shakes and Tremors with ME/CFS. Shaking after minimal exertion.

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​If you continue pushing through your activity despite the internal tremors, then the external shaking begins and with it the clumsiness and health and safety issues I mentioned above. This is why it is so important to listen to your body and pay attention to the whispers before they become screams.

Do You Get The Shakes Too?

What are your triggers?
Have you found anything that helps it pass?

Thank you for stopping by. Hugs, Char xx

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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.

  • 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.

    • 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)

  • 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

    • Sorr to hear you’ve developed this symptom too. It can be quite scary at first. Makes you feel useless. You are definitely not alone. There are many of us who get this. Usually a sign you’ve overdone things. Mine has lessened considerably as I found my baseline and spend way more time resting now. I think your kitty would probably love the dancing feathery fringe!

  • 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.

    • Janet says:

      Hi Sylvia, my shakes often present with hot flashes or cold sweats. My gp has been saying that it’s the menopause for nearly 2 years. I’ve been telling him it’s nothing like that, I went through the menopause very early. I’m 51 now and have been chronically disabled since a simple so called surgery left me like this. I totally understand exactly how you feel, I spend more time in my pjs and bed then dressed and outdoors. Simple tasks are like I’ve climbed Everest.. You know all this, it’s such a soul destroying illness. Sending you hugs and prayers ❣️

  • 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?

      • Cherenne says:

        Lying in a warm bath helps me for shaking and pain. Intermittent rest with intermittent light me cement to stop the body form getting stuff. Eating something small and drinking water or redbush/ chamomile tea. Avoid caffeine.

  • Janet says:

    Omg ? I’ve actually found someone who has the same thing as me. The shakes are the worst symptom ever. It’s like having a nervous breakdown but you’re not. I’m suffering with postural hypertension so the cardiologist is testing me for adrenal fatigue. I must admit I have symptoms the length of my arm for that condition also. I really do feel for you my dear. Much love ?

    • Hi Janet, sorry to hear you also struggle with the shakes. It can be very frustrating. Makes doing anything so very hard. I hope your doctor is able to help you out. I tend to just rest it out when it comes on. But have learned to stay withing my energy limits most days so the shakes are happening less and less now. But that also means I’m doing less. Please know you’re not alone, there are many of us who have this symptom although it’s not often talked about. Sending you hugs

  • Feeling your pain! says:

    Hi all, I have been going through something like you all are talking about.
    It started with the shaking in my legs, and I would fall down a lot because be it would hurt so much to the point I couldn’t walk another step. I would get so upset and embarrassed when it would happen in public.
    I tried seeing every doctor that would listen to figure out how to stop it. Finally…I found a specialist that sat me down and told me the truth. It would never go away. I was chronically I’ll and would be for the rest of my life.
    I was 43 years old and I would be in a wheelchair.
    Well, I am now 48 and my pain is different now. It went from shaking to cramping and at times severe muscle pulling. I use heating blankets and stretch pants or the like to help with the swelling. Also get your legs massaged!!! It helps!!!

    • Sorry to hear how much you have suffered with this. What was your diagnosis in the end? I’m glad you have found ways to relieve the pain and shaking. Heat definitely helps my leg pains too and so does weight or pressure, so I’m not surprised massage helps too. Thanks for sharing your story.

  • Thanks for sharing such wonderful knowledge!

  • Ally says:

    I love whoever wrote this article, I have had tests for tremors but my nerves arent damaged. I dont visit doctors because I hate having to explain. I do know I have cfs but I didnt know cfs caused tremors or not because I was frustrated by tremors more so Id only tell doctors about this one symptom. The first time I had my entire body tremors, I was 17, I walked a lot for college trip and now I have it after simple tasks like mentioned by this person, just writing, walking even the slightest. I feel so drained during and after this that my body feels like zoning out and I sleep after a while, although id still wake up fatigued with body stiffness and pain. People think i am lucky for falling asleep but the thing is I zone out..

    • Hi Ally, I am so glad you found my page helpful. The tremors are one of the most frustrating symptoms, aren’t they? I hope that with the current rise in post viral fatigue after COVID19 that more doctors will educate themselves about ME and CFS so that they can better help and inform their patients. Currently the best place to find accurate information is online among the patient community and our amazing doctor allies.

  • Lj says:

    Just found your site after searching for CFS and tremors. This issue has appeared over the past five months and is only getting worse. Your post and the comments help with reducing the anxiety I was going crazy again and how I can try and reduce these tremors. Thanks!

    • Thank you for the feedback, Lj. I am so glad that the post and comments have helped ease your mind a bit. I totally understand that going crazy feeling – you are not alone! I hope you get it under control.

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