DAB19 Posted April 12, 2018 Report Share Posted April 12, 2018 I'm sure this question has been asked many times before, but are frequent muscle spasms and twitching normal? Is it related to the POTS or something else? I've noticed in the last couple of months, a little before I got my POTS diagnosis, I started having muscle twitching all over my body all day long - it even seems to be getting worse. I have also had multiple muscle spasms, especially in my left foot. More recently I've also started to notice this weird sensation that comes and goes in my left leg down to my foot (possible restless leg syndrome?) Could all of this be related to POTS? Should I be more concerned? I decided to schedule an appointment with a neurologist just to be sure. Any input would be greatly appreciated. Thank you! P.S. We are currently looking into whether I have mast cell activation syndrome, could mast cell cause these symptoms? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted April 12, 2018 Report Share Posted April 12, 2018 I find that the more I know about Dysautonomia, the more I realize how little I know! It affects so many different things that it blows your mind! I'm curious, have you ever tried putting a rice sock (or the like) on the back of your neck or for the leg spasms, your lower back? Just wondering if it would help control them. My daughter is suffering from massive muscle spasms on her upper back and neck from cervical fusion about 8 months ago. When she is at rest and the sympathetic settles down, her pain kicks in, as do the tremors. The larger the muscle contractures, the bigger the tremors. The last few nights have been off the charts. One of the helpful things we do, though, is warm a bunch of rice socks in the microwave (not too hot, though) and put them on the back of her neck. Sometimes it takes a second to find the right spot, but it will stop the tremors. Putting one on her low back helps the feet spasms. If it works, you might look into craniocervical instability. Could just be POTS, too. Quote Link to comment Share on other sites More sharing options...
Steven Posted April 12, 2018 Report Share Posted April 12, 2018 The short answer is that muscular symptoms have been associated with POTS, and with dysautonomia in general, and you don't necessarily have to be concerned that you have something in addition to POTS. There are other possible causes of muscular symptoms, such as high or low calcium levels (vitamin D deficiency is a fairly common finding in people with POTS/dysautonomia, which has an effect on calcium absorption) or an electrolyte imbalance, each of which could have an easy solution, so it would be worth checking out other possible causes. I discussed the topic with someone recently. You could type something like twitch, twitching, muscle or muscular into the search box at the top right of the page and you should see plenty of examples of POTS/dysautonomia people with muscular symptoms, along with discussion of other possible causes and treatable POTS/dysautonomia related causes. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 12, 2018 Report Share Posted April 12, 2018 Some medications used for POTS can cause electrolyte imbalance which could lead to spasms. Maybe have bloodwork drawn to check this and talk to your doc or pharmacist to see if any meds could be the cause? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 14, 2018 Report Share Posted April 14, 2018 I had twitching all over for 14 years before I got POTS & I still do. It is called benign fasciculation syndrome. The clue is in the name, benign. It's nothing to worry about. Of course it was very distressing when it first started and for a couple of years I was convinced I had something horrible. In those days I didn't know anything as truly miserable and life-stealing as POTS existed and I wish I hadn't spent precious time worrying and not enjoying myself when I was healthy. Quote Link to comment Share on other sites More sharing options...
DAB19 Posted April 17, 2018 Author Report Share Posted April 17, 2018 On 4/12/2018 at 2:36 AM, DizzyGirls said: I find that the more I know about Dysautonomia, the more I realize how little I know! It affects so many different things that it blows your mind! I'm curious, have you ever tried putting a rice sock (or the like) on the back of your neck or for the leg spasms, your lower back? Just wondering if it would help control them. My daughter is suffering from massive muscle spasms on her upper back and neck from cervical fusion about 8 months ago. When she is at rest and the sympathetic settles down, her pain kicks in, as do the tremors. The larger the muscle contractures, the bigger the tremors. The last few nights have been off the charts. One of the helpful things we do, though, is warm a bunch of rice socks in the microwave (not too hot, though) and put them on the back of her neck. Sometimes it takes a second to find the right spot, but it will stop the tremors. Putting one on her low back helps the feet spasms. If it works, you might look into craniocervical instability. Could just be POTS, too. No, I've never tried a rice sock. I saw a new cardiologist this week and I brought up the muscle spasms/twitching and he suggested I take magnesium. I took my first dose last night and I already notice a major change. Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 16, 2018 Report Share Posted August 16, 2018 Seems to be. When my POTS is worse I get them. Florinef got rid of them then it stopped working and bam, they are back! All electrolytes and bloods perfect so it's not that in me. Quote Link to comment Share on other sites More sharing options...
Jwarrior77 Posted November 1, 2019 Report Share Posted November 1, 2019 I've had muscle spasms all over my body for at least 2 years before getting Pots and still have them now. They also tend to flare up sometimes when I worry or stress out but not all the time. Like Bombshell said I'm pretty sure it's Benign Fasciculation syndrome. Its interesting that both BFS and dysautonomia don't have a real known cause or mechanism to why it happens. Go figure. Quote Link to comment Share on other sites More sharing options...
Random-Symptom Man Posted November 1, 2019 Report Share Posted November 1, 2019 In some cases, nerve damage contributes to muscle spasms. My muscle spasms are often associated with tingling/numb/shaky hands/feet. Other times it's that painful burning or electrical sensation I get from nerve pain. Nerve damage also contributes to various forms of dysautonomia. Localized weakness often also accompanies my muscle spasms. Stress is a big trigger for my muscle spasms, so it isn't just just a nerve damage issue. It's all interconnected. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted November 2, 2019 Report Share Posted November 2, 2019 I too have been having muscle twitches all over my body for maybe 4-6 weeks straight now. I told my specialist about it and they took blood to check my electrolytes. I guess they must be okay because i havent heard anything back. So i am lost just as you are. Quote Link to comment Share on other sites More sharing options...
Jwalkerobrien_2012 Posted March 19, 2022 Report Share Posted March 19, 2022 I have pots and this muscle twitching (even in my face!) And it keeps me up all night. I didn't know if it was pots related or not. Quote Link to comment Share on other sites More sharing options...
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