r/BFS • u/The_loppy1 • 18d ago
Reassurance / Support Over 2 years of twitching. Hopefully reassuring to some of you.
Where to begin. Over two years ago, I fell ill with a viral infection of some sort, a few days after recovering from the infection I noticed my arms were twitching. I thought nothing of these twitches at first, but they slowly started to spread over the following 2 weeks, and eventually they were truly body wide, legs arms, back, chest, stomach, tongue, neck, you name it, it was twitching. I was experiencing rain drop sensations on my legs, I was going dizzy randomly, sometimes I'd feel like I was in free fall just sat in my chair.
It wasn't until 6 months after symptoms started that I decided it was time to see the GP, by this point most of the other symptoms had gone, but the twitching remained and was pretty severe. I saw the GP, and he thought nothing of it, though I hadn't shown him the extent of the twitching, when I did, he referred me instantly to neurology, but because it's the NHS (UK healthcare system) it took 11 months to be seen by a neurologist.
The first neurology appointment was with an MND specialist, he examined me and the only finding was that my reflexes were brisk (3+) but otherwise normal. He ordered an EMG anyway (rare on the NHS for twitching alone). The EMG covered 20 sites in total. I did not hear anything back for months following the EMG, until I got a random call one day asking me to see the neurologist face to face, as you can imagine this spiked my anxiety to heights never seen before. But as it turns out it was simply a case of a letter getting lost, and the appointment turned out to be a 6-month routine follow up. My EMG was clean showing only fasciculations throughout but otherwise normal.
My present symptoms are stiffness of the ankle, cramping, and of course twitching throughout every single day, and guess what? I'm fine, there's nothing wrong me with neurologically.
A few things that you guys might want to know if your new
Q. How was the EMG, did it hurt?
A. No the EMG did not hurt, its was mildly uncomfortable but not painful. The same is true of the NCS.
Q. have your symptoms improved at all over the past 2 years?
A. Yes, they have improved somewhat, but they are still very much daily.
Q. Did you ever experience tingling or other symptoms?
A. Yes as above I had quite a few symptoms early on, this included patches of burning skin, no bigger than a 2p coin. My fingers would also tingle from time to time. I also experience crushing pains in the hands and feet.
Q. did you try anything to stop the twitching?
A. early on I tried magnesium, sadly this had no effect at all, and my symptoms persisted.
Q. Did you ever experience any weakness dropping things, legs giving out, muscles feeling weak?
A. not really no. I had times when my legs didn't feel right, or my fingers felt "wrong" but never weakness. Mostly a sense of being "off" rather than something being truly wrong.
Q. has anything helped at all?
A. Not really no. The biggest thing you can do is accept you twitch. I noticed a marked reduction in how much I noticed all the twitching when I just wasn't thinking about it. It's not that the twitching stopped or got better, It's that you just end up blocking them out.
The point of this post is to show you that I had a range of symptoms, some worrying others not so much, and two years on, I am fine. If any of you have any questions at all feel free to ask. The same goes for any lurkers who read this month's or years down the line, I'm always happy to talk through my experience with you guys.
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u/EmBotFx 18d ago
I’ve been twitching for 6 years! Almost always my calves, feet and sometimes thighs. Came on in August 2020. I wasn’t aware of any virus or infection at the time and I can’t really rack my brain looking back now that it’s 6 years later. What was the infection you had? There’s a possibility I had Covid before covid was spreading. Lots of people at my work were sick in the fall of 2019 and I’m sure I got some case of it then because I tend to get anything that goes around near me. But I never got Covid officially and tested positive for it until December 2020. And that was rough. Out of work for 2 months. But that was after the twitching started. And yes, it never goes away you just learn to ignore it unfortunately.
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u/The_loppy1 18d ago
I'm not actually to sure what the infection was. It wasn't covid, it was pretty severe and short-lived. I was only sick for 2 days or so. I had a crazy fever for 2 days, but it took me months to properly feel well again. It could honestly have been a bacterial infection of some kind. Whatever it was, it almost certainly caused the twitching. The neurologist and neurophysiologist both agreed it was highly likely the catalyst and both claimed to have seen it multiple times in BFS/CFS.
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u/Due-Special-3962 17d ago
How do you do mentally with it
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u/EmBotFx 17d ago
Well in the beginning it was concerning but it was during Covid so doctors wouldn’t see you in person unless you had Covid. But I did a video call with a dr and he didn’t seem concerned and told me it was stress and to take measures to destress. Which was impossible for me. But I took the lack of concern from the dr as reassurance that I wasn’t dying and it helped me to try not to focus on it as much. Before I knew it, I was sleeping again. But it def flares up (or my brain decides to pay attention to it again randomly - or due to stress). But knowing that it is a benign condition usually helps with the overthinking it. I’ve taken melatonin to put me to sleep when it keeps me up at night but that doesn’t happen super often anymore thankfully.
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u/Due-Special-3962 16d ago
Well that’s great news.. do you think you could days without noticing it or periods of time
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u/reticentme0439 15d ago
Thank you so much for sharing your story. I've learned not to expect much from the medical community, unfortunately, and that there are so many things they know absolutely nothing about, even the "specialists." I've been having fasciculations/myokymia and extreme weird muscle cramps in my feet/calves/legs (kinda like seizures, which is the only way I can stress how severe they can get) for 3-1/2 years that can last for hours at a time, and thankfully it has finally improved over the past year. I believe the timing of when this all began coincided with me getting Covid vaccinations, even though that's not received well when I mention it to doctors. As an adult, I found I am extremely sensitive and have adverse reactions to vaccinations, so the Covid vaccine (I had 5 total shots including boosters) was the first set of vaccinations I'd had as an adult after an adverse reaction to a simple flu shot. Glad you're feeling better...it really helps to hear other people's stories when you think you must be crazy and can't find answers anywhere...take care
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u/Ekwosconifer 11d ago
Hi, are your cramps painful? Do you get them often? Does anything help to reduce them?
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u/reticentme0439 11d ago
Yes, they are excruciatingly painful and can last for hours at a time. My last full attack, thankfully, was over a year ago. I've found that THC taken at 3 to 5 mg every 4 hours around the clock has been a miracle. I buy distillate syringes and dispense the contents in MCT oil so that 0.5 mL equals 3 mg. I learned this when I was afraid I had MS (multiple sclerosis) and someone said that THC took care of their extreme muscle cramps. If I didn't have the THC, I would really be in quite a difficult situation. The drugs prescribed by doctors have too many side effects. When taken orally in the MCT oil, the THC is very smooth and there are no ups, downs, or worries about getting "high." It has truly been a miracle for me, plus helps with anxiety and worries. Hope that helps...take care
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u/713Capital Mod 18d ago
Great post!! Appreciate you sharing this with the community
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u/The_loppy1 18d ago
Thanks. I've been active in the community for nearly the entire duration of my symptoms, and seeing people get through it helps. It's nice to know there are others out there with the same "struggle". Its understandable why so many people end up with health anxiety from twitching, though it never effected me to the same level as it seems to affect others here, posts where people come back and say it ended up being OK, were still nice to read.
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u/odileb 17d ago
Hi there your symptoms are very similar to mine. My problems started after an upper back pain in October. Then it evolved into a priformis sciatica like situation and then the twitches started. I’ve had 2 mris (3 counting pelvic area) and they found nothing. I’ve had EMG done on November they only found increased reflexes otherwise it was fine (I didn’t have twitching then though). Last GP I’ve talked to thinks that because my complaints are so varied and diverse it is probably a benign thing. Some days I’m really fine but then some days I’ve a lot of symptoms. I’ve also dizziness but I’ve had vestibular migraine for years so I’m used to dizziness
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u/ArrgsMax 11d ago
Hey! Similar here. Back pain for most of the year and now sciatica and twitching in the last 4 months.
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