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Behçet's UK
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Twitching/ pulsating

Does anyone else have issues with “twitching”? Sometimes it’s my fingers sometimes it feels like something on the inside of my leg, sometimes my eyes. Even my nose, or behind, toes. Pretty much any body part really. My doctor doesn’t seem concerned about it and I don’t know if it’s Behçets related. When I bring it up he kind of just brushes it off but I’m really concerned about it bc I don’t know what it is and it’s not painful but it’s really annoying and I don’t know how to stop it. Also it’s really weird and embarrassing when I’m laying with my boyfriend and my leg all of a sudden starts to “jump” or “twitch” on it’s own. It’s really weird and it’s starting to scare me bc last night it was happening a lot more than normal.

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This happens to my husband all the time. He has Behcet and he shakes and twitches all the time. His arms and his legs.

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Thank you for your reply. Good to know I’m not the only one.

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I get this all the time also! Started for me about a year ago. I’ve chucked many cups of tea, kicked my desk (I work in an office) and flinch/twitch/jump almost daily. Sometimes I find it’s just little twitches and sometimes it’s some sort of big involuntary movement. Overall, I havent found it’s gotten worse, but I had a patch where it felt like I was quite bad so went to my rheumy about it (he is based in Bristol and is very good. He actually has a lot of knowledge about Behcet’s). He did kind of brush it off also and didn’t seem that concerned, but I went for a head scan about 8 months ago incase it was anything neuro related. It didn’t show anything, but I suppose it was a relief to have it done anyway. Not sure if yours is the same kind of twitching as mine, but I’ve learned to live with it (but then again it doesn’t bother me too much and seems to have settled). I still get it daily, but not so frequently and often they are smaller twitches or a few kicking out my legs. If you are really concerned though I would push your GP, Rhuemy, COE or whoever you might see for a mri scan. My doctor didn’t seem that concerned but he obviously was worried enough to send me for a head scan - which I had 2 weeks after I spoke to him!

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Wow I haven’t had any big involuntary movements (yet). I do get the smaller twitches though some seem bigger than others like my thighs and behind. I also have had an mri and they didn’t find anything. I just wish I atleast knew the cause or what I could do to prevent it. I do plan to start eating a lot healthier though so maybe that will help. Thanks for your reply I really appreciate it!

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Yes!!!! All the time. It makes me drop my phone. Sometimes even have dropped glasses of water or milk. It is worse during heavier flares, but is there all the time for me.

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Me too pretty much everyday I know to expect these tremors. Bc it’s worse during flares it’s leading me to believe it’s some sort of inflammation but I still just find it very odd. Hopefully we’ll get some answers. If I find out anything I’ll definitely be sure to post about it. Thanks for responding!

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This happens to me too! Usually my legs but has happened in my arms. Also felt my head / neck twitching if I sit still watching something for a while.

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Same for me it always seems to be worse when I’m at rest or laying down. It’s very odd. I’m going to be trying a few things to try and atleast make them less frequent. Will definitely let you know if I find anything that works. Thanks for responding!

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All the time. Usually happens in my thighs and buttocks. Twitch twitch twitch u. Also sometimes in my upper arms. I checked it up to this disease.

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Thanks for your reply. I find it odd that so many people complain of this and whenever you look up symptoms for Behçets or even speak to doctors they never describe this.

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I feel like this disease state is still evolving quite a bit. And doctors and patients would benefit working together to develop a database of understanding about it.

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Right there isn’t much information at all I wonder who I can speak to, or if a study is being done. A doctor actually wrote about me as a case study but was more interested in just having something under his belt not really figuring out the disease. And it definitely is important for us to stick together. I’ll be researching to see if I can find anything where studies are being done.

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A member recently posted some recent studies/publications from a conference -- if I recall correctly. That may be a start. If you like a particular author or research focus you may want to contact them. Again, I dont think the big bucks are yet funneled into this disease so there is less attention on it.

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I also wanted to ask this.

It started this month, it's not painful or annoying for me. Unlike other replies I only experience small twitching/pulsing. Rather than muscle spasm it's more like I can feel heartbeat/pulsing sensation. It's like pulsatile tinnitus but on my legs, arms and thighs. So I guess it's problem on artery/vein instead of muscle???

Do you have pulsatile tinnitus?

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Yes I get that same feeling where it feels the a vein is pulsating with the heart beat sensation you speak of (great choice of words to describe it). But as far as I know I don’t have pulsatile tinnitus but thanks for bringing it up. Will definitely ask my doctor about this.

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When I was having my first flare a couple of months ago my eye twitched quite a bit. I told the doctors in hospital but they said it wasn’t related to the behcet’s, but I knew it was cos it was so unusual for me. I also love this forum- it makes me feel less like a hypochondriac:)

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Omg same for me I was having my first flare in 2017 and before anything else started my eyelids were twitching really bad. It started maybe a month before I had any other symptoms. They told me It was from stress and at the time I believed them bc I was so very stressed and working really hard. It’s so interesting to see similarities so I don’t feel like I’m going crazy lol bc same my doctors have me feeling very hypochondriatic as well.

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