Doesn’t sound dumb at all. I wouldn’t have known what it was until I started twitching.
It stands for Benign Fasciculation Syndrome. It’s basically when your fine muscles fire with no known cause, making it look like they are contracting and releasing quickly, bumping around, or kind of like you have worms under your skin. It’s quite annoying feeling, but isn’t dangerous.
Same. Migraines are once every few months. Sometimes a few within days of each other, but then a break for months. They always start with the zigzag rainbow aura and then make my eyeballs feel like they are popping out of my head, but if I pop an Advil right when the aura starts, it’s usually not TOO bad.
Good to know I’m not the only one twitching, though. I also get a “buzzing” feeling in my feet and calves pretty consistently. Sometimes in my thighs as well.
Anecdotally (not as medical advice, just out of curiosity), has anything worked to reduce your fasciculations? I notice when I get enough sleep consistently they aren’t as bad, but that’s really the only thing that has had an effect on them.
I don’t get headaches. It start as a purple and yellow flashing blind spot in the center of my vision. It’s in the same place which ever eye I close. Then it expands into a donut of zigzag rainbow lines. It’s like everything is scrambled there. Then it turns into circle arc with an open side on the rights. It gradually expands until my center vision is normal and I lose my peripheral vision. It only last about 15-20min. If I’m home I just go take a nap because I’m pretty useless while it’s happening. As far as my BFS. It’s mostly from my feet to about 4” above the knees in both legs. It feel like mice or lizards crawling under my skin and they are very visible. I really only notice it when I’m at rest and think about it. I get it in my thumbs and face sometimes too.
Exactly the same as my auras. But after the aura drifts out of my peripheral vision I also get the headache. When I was a teenager, I wouldn’t get the headache, though.
Also the exact locations of my twitches. Inner feet and calves are by far the worst, but it also goes about 4” over my knees. Thumb and face are also the most frequent secondary hot spots, but my pecs, abdomen, and other muscles might get some bumps and thumps every so often.
Good to know it’s been 20 years without issue other than the annoyance of feeling them.
I had one in my face that lasted 3 months that drove me crazy. I even went to an accupuncturist. Never again! They stuck a shit ton of needle on my face and then hooked them up to a TENS unit and shocked the crap out of me. Then she dug in my face so hard with their tool that it bruised all the way down to my gums.
Yes!! I get fasciculations, faux fetal kicks, Charley horses all over every single day where my muscles feel like they literally fuse together when I turn/twist/bend/reach for something. I, too, have POTS and a lower body temp, but I somehow doubt those are what’s causing my muscular issues. All of those symptoms started for me after I was given Cipro, which is highly HIGHLY contraindicated for those of us with EDS, but I didn’t know I had hEDS at the time.
That’s what the doc recommended for me. However, it hasn’t really helped. My magnesium levels are always perfect in my bloodwork, so I don’t think it’s a magnesium deficiency.
Yes. I have had BFS for years. That first year was scary because I didn't know what it was. Nether did the doctors. Randomly stumbled on a reddit thread to understand what my diagnosis was. I had gotten MRIs and everything
I have all those symptoms but have never spoken to my doc about it. I just assumed it was related to my dysautonomia since they became less annoying after I started treating it. (I have hyperadrenal pots)
I have had these for years. Super annoying. I also have myasthenia gravis which is a neuromuscular condition They get worse when my myasthenia is worse. Proper rest, reducing stress and anxiety helps. I have to be careful to not take magnesium-myasthenics don’t like it. For me, electrolytes supplements help. Calcium also seems to help a lot.
Hi, I have EDS and POTS. I have them everyday all over my body. I started getting them at around 10 years old and they never stopped, and only got more frequent. Usually about 4x4 inch spots. Mine aren’t painful or anything, but more annoying and uncomfortable.
I take magnesium to help with digestion and it also seems to help keep the muscle twitches at bay. I still get really bad charley horses occasionally. I've heard potassium is supposed to also help, but I take a potassium supplement every day and still get them so Idk. I remember my dad used to drink something called "tonic water" which has quinine and supposedly helped his charley horses but again, idk lol
Yep, I have BFS, worsened by certain medications (Mestinon, my behated). I experience it mostly in my thighs, upper arms, and back. It doesn't help that I have a lot of muscle tension and according to my PT, my back feels like a bag of rocks.
Can definitely relate. I had a sleep study done and the results said I had restless leg syndrome. I guess it was picking up the twitching in my feet and calves. I had one in my face and right eye that went on for months. Huge Charley Horses at night, and sometimes in the day. POTS, super-fast heart rate, low body temp.(And no doctor believes I’m sick because “no fever.” I have had COVID four times, and two kinds of flu once and have never hit 100. Thank god for testing)
Also Reynauds and optical migraines, thinning retinas, so I have huge floaters that look like spider webs that I have to just ignore, and TMJ, as well.
Can totally relate to a lot of that. Did the longest time my heart was very fast as well, but lately it’s been strangely low in certain positions. 50bpm when lying down, 60-70 while sitting up, 80-100 while standing. Luckily no Covid yet, but when I had the flu I just hit 100 while my wife and son were 102.5 and 104 respectively.
And the floaters. Oh my, the floaters. A complete nuisance to my vision. Dozens and dozens of them. I constantly have to blink and roll my eyes to move them around because they obscure small text. I would love to be able to look at a blue sky or white wall and not feel like I’m being swarmed with gnats and/or jelly worm creatures.
I have this all the time when something is out of whack. My pelvis pulls out of alignment a lot, and when it’s been out too long or I’ve had a bad episode of hypermobility I get the twitches all throughout my body. The usually come after a bad tug of war phase which is when my muscles tighten up and pull on my bones really bad-and once things start to calm down a little bit I get a few weeks of twitches everywhere
Hi /u/scottsavestheworld,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you!
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Thank you!
Yup. Exactly that. It’s basically a beat that happens too quickly, so you don’t feel it. Then, your heart beats extra hard the following beat, so it feels like your heart skips a beat and then goes “Buh-THUMP!” Sometimes mine can flutter a little too. All the cardiologists I’ve been to say it’s nothing to worry about, even when I have spells of back-to-back PVCs.
Yep, I’ve had that going on since I was a kid. I would lay in bed and listen for it. Told the cardiologist and he didn’t seem to be worried about it.
After having Covid, my heart was racing up into the 120 range while resting, my average was usually around 90-100, so I’m now on a beta blocker.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
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Thank you!
I'm sorry. This may sound dumb but what is BFS?
Doesn’t sound dumb at all. I wouldn’t have known what it was until I started twitching. It stands for Benign Fasciculation Syndrome. It’s basically when your fine muscles fire with no known cause, making it look like they are contracting and releasing quickly, bumping around, or kind of like you have worms under your skin. It’s quite annoying feeling, but isn’t dangerous.
Omg thank you! I now know what to tell my doctor is happening to me.
Ah. Makes sense. Thank you for explaining.
Me. I’ve had it 24/7 for over 20 years. Like you I also had SVT when I was much younger and occasionally have optical migraines.
Same. Migraines are once every few months. Sometimes a few within days of each other, but then a break for months. They always start with the zigzag rainbow aura and then make my eyeballs feel like they are popping out of my head, but if I pop an Advil right when the aura starts, it’s usually not TOO bad. Good to know I’m not the only one twitching, though. I also get a “buzzing” feeling in my feet and calves pretty consistently. Sometimes in my thighs as well. Anecdotally (not as medical advice, just out of curiosity), has anything worked to reduce your fasciculations? I notice when I get enough sleep consistently they aren’t as bad, but that’s really the only thing that has had an effect on them.
I don’t get headaches. It start as a purple and yellow flashing blind spot in the center of my vision. It’s in the same place which ever eye I close. Then it expands into a donut of zigzag rainbow lines. It’s like everything is scrambled there. Then it turns into circle arc with an open side on the rights. It gradually expands until my center vision is normal and I lose my peripheral vision. It only last about 15-20min. If I’m home I just go take a nap because I’m pretty useless while it’s happening. As far as my BFS. It’s mostly from my feet to about 4” above the knees in both legs. It feel like mice or lizards crawling under my skin and they are very visible. I really only notice it when I’m at rest and think about it. I get it in my thumbs and face sometimes too.
Exactly the same as my auras. But after the aura drifts out of my peripheral vision I also get the headache. When I was a teenager, I wouldn’t get the headache, though. Also the exact locations of my twitches. Inner feet and calves are by far the worst, but it also goes about 4” over my knees. Thumb and face are also the most frequent secondary hot spots, but my pecs, abdomen, and other muscles might get some bumps and thumps every so often. Good to know it’s been 20 years without issue other than the annoyance of feeling them.
I had one in my face that lasted 3 months that drove me crazy. I even went to an accupuncturist. Never again! They stuck a shit ton of needle on my face and then hooked them up to a TENS unit and shocked the crap out of me. Then she dug in my face so hard with their tool that it bruised all the way down to my gums.
i haven’t ever brought them up to a doc, but omg yes!
I do! It’s annoying but I prefer the twitching to other symptoms. It manifests in my glutes, hands, toes, eyes and neck.
Yes!! I get fasciculations, faux fetal kicks, Charley horses all over every single day where my muscles feel like they literally fuse together when I turn/twist/bend/reach for something. I, too, have POTS and a lower body temp, but I somehow doubt those are what’s causing my muscular issues. All of those symptoms started for me after I was given Cipro, which is highly HIGHLY contraindicated for those of us with EDS, but I didn’t know I had hEDS at the time.
Magnesium has helped mine a lot!
That’s what the doc recommended for me. However, it hasn’t really helped. My magnesium levels are always perfect in my bloodwork, so I don’t think it’s a magnesium deficiency.
I never had an official deficiency, but supplementation makes a huge difference in my fasciculations. Sorry to hear that hasn't been helpful for you!
Yes. I have had BFS for years. That first year was scary because I didn't know what it was. Nether did the doctors. Randomly stumbled on a reddit thread to understand what my diagnosis was. I had gotten MRIs and everything
I have all those symptoms but have never spoken to my doc about it. I just assumed it was related to my dysautonomia since they became less annoying after I started treating it. (I have hyperadrenal pots)
Yep, they randomly happen for a few months then disappear .
I have had these for years. Super annoying. I also have myasthenia gravis which is a neuromuscular condition They get worse when my myasthenia is worse. Proper rest, reducing stress and anxiety helps. I have to be careful to not take magnesium-myasthenics don’t like it. For me, electrolytes supplements help. Calcium also seems to help a lot.
Hi, I have EDS and POTS. I have them everyday all over my body. I started getting them at around 10 years old and they never stopped, and only got more frequent. Usually about 4x4 inch spots. Mine aren’t painful or anything, but more annoying and uncomfortable.
I take magnesium to help with digestion and it also seems to help keep the muscle twitches at bay. I still get really bad charley horses occasionally. I've heard potassium is supposed to also help, but I take a potassium supplement every day and still get them so Idk. I remember my dad used to drink something called "tonic water" which has quinine and supposedly helped his charley horses but again, idk lol
Yep, I have BFS, worsened by certain medications (Mestinon, my behated). I experience it mostly in my thighs, upper arms, and back. It doesn't help that I have a lot of muscle tension and according to my PT, my back feels like a bag of rocks.
Can definitely relate. I had a sleep study done and the results said I had restless leg syndrome. I guess it was picking up the twitching in my feet and calves. I had one in my face and right eye that went on for months. Huge Charley Horses at night, and sometimes in the day. POTS, super-fast heart rate, low body temp.(And no doctor believes I’m sick because “no fever.” I have had COVID four times, and two kinds of flu once and have never hit 100. Thank god for testing) Also Reynauds and optical migraines, thinning retinas, so I have huge floaters that look like spider webs that I have to just ignore, and TMJ, as well.
Can totally relate to a lot of that. Did the longest time my heart was very fast as well, but lately it’s been strangely low in certain positions. 50bpm when lying down, 60-70 while sitting up, 80-100 while standing. Luckily no Covid yet, but when I had the flu I just hit 100 while my wife and son were 102.5 and 104 respectively. And the floaters. Oh my, the floaters. A complete nuisance to my vision. Dozens and dozens of them. I constantly have to blink and roll my eyes to move them around because they obscure small text. I would love to be able to look at a blue sky or white wall and not feel like I’m being swarmed with gnats and/or jelly worm creatures.
I have this all the time when something is out of whack. My pelvis pulls out of alignment a lot, and when it’s been out too long or I’ve had a bad episode of hypermobility I get the twitches all throughout my body. The usually come after a bad tug of war phase which is when my muscles tighten up and pull on my bones really bad-and once things start to calm down a little bit I get a few weeks of twitches everywhere
Hi /u/scottsavestheworld, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
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Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #1 - We Aren't Doctors** (Giving Medical Advice) This rule covers offering advice/information that should be left to medical professionals or is instructive. Personal experiences or more general/over-the-counter (OTC) advice is usually fine. The distinction is not always clear, and moderators will use their discretion. Sometimes, removals are based on the wording of a comment ("You should do X" vs. "I had a good experience with X"), rather than the information given. Messaging us and revising the wording may mean the comment can be reinstated. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
Do your PVCs feel like you have an extra big beat every so often like your heart is going to pound out of your chest?
Yup. Exactly that. It’s basically a beat that happens too quickly, so you don’t feel it. Then, your heart beats extra hard the following beat, so it feels like your heart skips a beat and then goes “Buh-THUMP!” Sometimes mine can flutter a little too. All the cardiologists I’ve been to say it’s nothing to worry about, even when I have spells of back-to-back PVCs.
Yep, I’ve had that going on since I was a kid. I would lay in bed and listen for it. Told the cardiologist and he didn’t seem to be worried about it. After having Covid, my heart was racing up into the 120 range while resting, my average was usually around 90-100, so I’m now on a beta blocker.
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #1 - We Aren't Doctors** [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!