Muscle Twitching

Auriel

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Has anyone every looked into the muscle twitching @Ketch? 🌱🕊🌱
 

JayCS

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If you are referring to something else being easy to diagnose, I am curious as to what that is. Thanks.
Docs did workups including blood work, MRI s, and multiple EMG tests and concluded that it was benign fasciculations, and more recently, some essential tremor.
Best of luck. Chances are that your twitching is benign. ❤️
If I understand correctly it wasn't FM, it was benign fasciculations (or "benign fasciculation syndrome") that @Jennifer V meant. :cool:
 
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Looby69

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I get twitching, too, pretty much anywhere on my body can do it but it is mainly extremities and neck. It only really hurts if there is already a pain going on there. I also have weakness and atrophy in my left leg/hip to the point a muscle is pretty much gone. I don't really have a suggestion for it as mine comes on heaviest when I try to relax and sit still(ish). So, mostly just standing in solidarity with everyone, you are clearly not alone. The twitching concerns me but always seems to come and go, worst thing to me is that it uses precious energy to twitch so much!
Hi @Ketch Thanks for sharing your experience, it really does help. Have you seen a neurologist?
 

Ketch

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Hi @Ketch Thanks for sharing your experience, it really does help. Have you seen a neurologist?
Hi, I'm glad it is useful to someone! Sometimes I feel like I might be too gruff or smt in what I say and perhaps it isn't helpful in the end. So thanks for that. Anyway, yes I did go see a neurologist, they sent me to some of the most bizarre tests ever, conduction tests that make your body work unwillingly. Took a biopsy from my hip, and sent me for evaluation from this really awesome physical therapy team. They are convinced I have peripheral neuropathy (so far they have been unable to find it but are absolutely convinced) which is somehow contributing to fibro, muscle loss, etc. I was rated 1 point off "crippled" (oswestry disability index) and they took that down 2 points but still "severely disabled." Those are a big 2 points though, thank God, cane to no cane! At the end of that therapy I was stocked with all kinds of helpful devices, best being the TENS, the second a Thera-cane, which is a shepherds hook shaped self-acupressure massager. I also have a full set of extremity braces. I also do Yoga and/or Tai Chi now to attempt to keep those 2 points gained. I also have a full collection of meds, Gabapentin, Duoloxetine, Buspirone, Trazodone, ointment diclofenac. I have since moved from the west coast, inland to find a more remote and theoretically peaceful place to live. Which I think it is overall but the healthcare quality and even availability is practically non-existent. Fortunately, I think once you have gotten that far, you have been firmly diagnosed by a team of specialists and it is mostly about management at this point. It also seems to be about all they can do for you. In the case of VA care, you are also at their medication limits as they do not prescribe opiates or anything like that. So, I am more or less now on my own and just have to follow all that advice. I was on MMJ at the beginning because I didn't know what was going on, was doctor phobic, and that was the big self help at the time. It is still part of my "personalized therapy" but less as it contributes to the fogginess during those times. Through acupuncture, the doc introduced me to Kwan Loong ointment, very menthol but does work topically, like a liquid Tiger Balm. I have also added an herb called kratom and am trying to step down on gabapentin as I think it is also contributing to the fogginess severity. To date, I have less overall body pains, contributes to a better mood, give a bit more mobility, and what seems like a lot of energy for short periods (1-2 hours). You have to do you own due diligence on this one as Kratom is somewhat controversial and even illegal in some places.

Sorry for the wall of words, lol. Short answer is yes and they did suggest things that have helped alleviate some pain, add stability, and access more care.
 

Ketch

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Has anyone every looked into the muscle twitching @Ketch? 🌱🕊🌱
Yes, they didn't seem to think much of it. It scared me at first because it could possibly indicate a way worse diagnosis, they are sticking to fibro.
(sorry answering in reverse order, lol)
 

Auriel

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No,no your alright @Ketch your in the right order 😅
 

Looby69

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Hi, I'm glad it is useful to someone! Sometimes I feel like I might be too gruff or smt in what I say and perhaps it isn't helpful in the end. So thanks for that. Anyway, yes I did go see a neurologist, they sent me to some of the most bizarre tests ever, conduction tests that make your body work unwillingly. Took a biopsy from my hip, and sent me for evaluation from this really awesome physical therapy team. They are convinced I have peripheral neuropathy (so far they have been unable to find it but are absolutely convinced) which is somehow contributing to fibro, muscle loss, etc. I was rated 1 point off "crippled" (oswestry disability index) and they took that down 2 points but still "severely disabled." Those are a big 2 points though, thank God, cane to no cane! At the end of that therapy I was stocked with all kinds of helpful devices, best being the TENS, the second a Thera-cane, which is a shepherds hook shaped self-acupressure massager. I also have a full set of extremity braces. I also do Yoga and/or Tai Chi now to attempt to keep those 2 points gained. I also have a full collection of meds, Gabapentin, Duoloxetine, Buspirone, Trazodone, ointment diclofenac. I have since moved from the west coast, inland to find a more remote and theoretically peaceful place to live. Which I think it is overall but the healthcare quality and even availability is practically non-existent. Fortunately, I think once you have gotten that far, you have been firmly diagnosed by a team of specialists and it is mostly about management at this point. It also seems to be about all they can do for you. In the case of VA care, you are also at their medication limits as they do not prescribe opiates or anything like that. So, I am more or less now on my own and just have to follow all that advice. I was on MMJ at the beginning because I didn't know what was going on, was doctor phobic, and that was the big self help at the time. It is still part of my "personalized therapy" but less as it contributes to the fogginess during those times. Through acupuncture, the doc introduced me to Kwan Loong ointment, very menthol but does work topically, like a liquid Tiger Balm. I have also added an herb called kratom and am trying to step down on gabapentin as I think it is also contributing to the fogginess severity. To date, I have less overall body pains, contributes to a better mood, give a bit more mobility, and what seems like a lot of energy for short periods (1-2 hours). You have to do you own due diligence on this one as Kratom is somewhat controversial and even illegal in some places.

Sorry for the wall of words, lol. Short answer is yes and they did suggest things that have helped alleviate some pain, add stability, and access more care.
It sounds like you're doing all the right things @Ketch even being in this group is a great resource and a pool of knowledge.
I too have experienced some muscle loss and have a lot of crunching, clicking and grinding of tendons, muscles and joints. I had an EMG at the end of March to rule out some of the nasty stuff and yesterday I got the all clear. I was elated. It obviously doesn't alter my symptoms, or does is? As stress and anxiety do send me in to an immediate flare. As @sunkacola often posts, a fibromyalgia diagnosis is a process of elimination of other conditions. I am 18 months in of tests, scans, xrays, bloods, different meds and it's only after the all clear on the EMG I am finally able to start believing that I do in fact have fibromyalgia. Its a long old diagnosis path to traverse.
 

Ketch

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Its a long old diagnosis path to traverse
Indeed! Yes, you have to focus hard to be well and yes, this group is all part of the "treatment." I was the only person I knew with this condition, so I don't feel so isolated anymore. That helps to keep the chin up. Thanks, all, for being here! :)
 

Looby69

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Oct 19, 2021
Messages
37
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DX FIBRO
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07/2021
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Thanks @fimi thats really kind of you. Yes, a good couple of weeks thank you. I came across my muscle twitching comments earlier and thought it would be a good idea to check in with other twitchers and see how they're doing!
I hope all is well with you too 🙏💟
 

fimi

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Glad you're doing well Looby69. :)

Yes, I'm a twitcher too.
I'm taking the twitches as they come and trying not to worry, though it can be hard not to at times can't it? 🙃
 
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nicolecozzi

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Aug 3, 2022
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I’m so glad I found your posts. I’m going through a very scary time with my symptoms. I’ve been to one neurologist that told me it was all stress related. I’m waiting for another appointment to get an EMG. It started with weakness and fatigue. Then the muscle twitching all over both legs. Sometimes I’m my arms. Pain is so bad I’m my arms when I use them. I’ve had pain in my neck, back and hip radiating down my leg once. Now I notice my swallowing is difficult and vision blurry at times. Of course I googled and my fear is ALS and I am barely able to function now from the fear. I am 49 with two young children. I am praying that it’s from stress and the first neurologist is right. I just wanted to tell you your post about your symptoms helped calm me down… just a tad. Lol. Thank you. Hope you are doing well.
 

Auriel

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Hi and welcome ☕🧁 well I wouldn't be happy with the dismissive attitude of your neurologist, when my symptoms were at their worst I went to hospital and the Dr there told me it was all in my head! years later the rhumie diagnosed me with fibro, people get stressed it doesn't usually make them have all these symptoms (though mine started after some really traumatising experiences) I think more needs to be looked into, blood tests, scans (a different neurologist preferably) vitamin checks as the muscle twitching could be vitamin deficiency (b types or magnesium, other) but it doesn't explain everything else going on, it needs a more thourogh investigation🌷☀️🌷
 

nicolecozzi

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Thank you for your reply! My doctor sent me for bloodwork for so many possible causes and everything was normal. A tad low on Vitamin D. The neurologist asked me about my stress and because I had so much happen in the past 6 months he told me it was all in my head and how stress can cause all of this. Didn’t want to settle for that even though it’s better than the alternative. I have another neurologist appointment in 2 weeks with someone else. Scared out of my mind.
 
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