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Aimes

Twitching...

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I swear, every day brings a new symptom lately! This last week I've been battling periods of extreme muscle weakness and an annoying twitching toe the last two days. The muscle weakness is most obvious in my arms. I couldn't even wipe down the table the other day! Not only is it difficult to make my arms work, it's also painful. The muscles burn like I've just done a workout! The weakness and burning comes and goes. Sometimes I can barely lift my arms, sometimes I'm flying my two year old around the room like an airplane! So strange!

More troublesome than that is the new twitch I've developed. It's on my right foot and is the "ring" toe for lack of a better term. It twitches a lot! I couldn't sleep last night because it wouldn't stop twitching and today my entire foot and up into my ankle is sore from it! I don't recall injuring the foot at all. Has anyone ever experienced anything like this and any tips on how to get it to stop?! I'm going to Dr. Goodman at Mayo in April so I'll obviously mention it to him. I'm suspecting I may be dealing with an autoimmune thing, but is there anything that might help in the mean time? It sounds like such a silly symptom, but I hardly slept last night because of it and today my foot/ankle are sooo sore! Again, the joys of living with a mystery illness! ;-)

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I get muscle fasciculations all the time now. About a week ago I started getting them every day constantly in my left ring finger. I'll get them on my bottom right eyelid, my upper left back and under my right knee if I was really active during the day. It's really annoying and makes me wonder what's going on.

I've read some things about bacteria that can cause it (like lyme disease) and that's a concern (I guess everything is when you have no idea what's wrong). Another common cause that seems to pop up is magnesium deficiency. I used to take a magnesium oil supplement regularly but after POTS I stopped every form of supplementation to see if it was something I was doing causing my problems...

Anyways, let us know if you ever figure it out!

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Hmm... I've had a twitch under my right eye (off and on) for about a month now. So annoying! Interesting about magnesium. I take magnesium supplement several times a week. So sick of all these symptoms. It's so hard to know what is pots and what is just life/normal.

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Thanks for the responses and sorry you both deal with this too. Again, its not really a debilitating symptom but it's very annoying! I'm still dealing with the twitching today, but it seems to have slowed down some. I've been icing my foot some as it now seems to be getting inflamed, but I'm not sure if the icing is helping with the twitching or not. I really don't remember injuring myself so I feel that this is another weird symptom for me. The magnesium theory is interesting to me also. I'll have to do some more reading on that! I have a hard time with the lyme topic. I guess you can call me a sceptic. It sure could be the case for some, but I seem to have been born with this illness and I highly doubt I had a tick bite as an infant. All theories are worth exploring though and more power to people if they can get relief from the lyme treatment plan! :-)

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I have this too: muscle weakness, twitching, burning, tingling, and itching. My doctors told me that it is peripheral neuropathy, which is related to autonomic dysfunction. It has many causes, but I believe mine was caused by hypothyroidism. Many of these symptoms have improved or gone away since I corrected my thyroid, but I still have dysautonomia, and some tingling and weakness.

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For me my twitching is worse when one of my triggers ("mcas") is worst. Moved into a new house and the first sign that I was reacting to inhaled allergens was muscle twitching. I ignored it thinking it was something else and I got worse and worse.....I get them mostly to chemicals and scents. Also seem to twitch if I overuse a muscle.

When I was on steroids I got them more often than I do now.

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As usual, I'm SO thankful for this forum--these issues have plagued me off and on for the better part of 14 years, and they are ANNOYING! My right side seems to be predominately affected--does anyone else seem to be one-sided with these kinds of things? In addition to the burning sesnations, I also get cold patches...I was DX Hashimoto's last year, and my antibody levels were through the roof, but my TSH, T3 and T4 always fall in the "normal" ranges. However, I'm not sure what's "normal" for others is necessarily "normal" for us, know what I mean? :rolleyes:

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Mine is also predominately the right side. My right ear has had terrible tinnitus for the past three months and the twitching always seems to be on the right. So strange. During my big episodes, my entire body goes crazy. Those involve severe tremors that last hours and are much different than these twitches.

I agree that this forum is a life saver! It's so nice knowing I'm not crazy and being able to talk to others who can relate! Are you on any meds for Hashi? Have they been helping at all? I've been wondering about Hashi myself and am anxious to get tested in April. My TSH is always normal,too, but I have all the symptoms of it. Every time I go to the ER, it's the first thing they check!

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Hi Aimes,

How funny--I grappled with a supremely irritating bout of tinnitius last year for about 2 months--the sound of an approaching helicopter was the form it took, and i kind of wanted to stick a fork in my ear to make it go away! :D

Also, do you ever get a sensation of "heaviness" in your limbs as well--not that you can't move them, but that they just feel....leaden?

I'm not on any meds for the Hashimoto's as my levels are always WELL within the normal range; however, the thinking is that my symptoms worsen whenever there's inflammation and the antibodies are actively attacking the thyroid thereby reducing its function even if that damage isn't yet visibile via testing...if that makes sense. My endocrinologist is supposedly the best in the biz (Rated a Top Doc in the DC area), and he says that my test indicate that sometimes I swing between hypo and hyper in the span of just a few weeks which is typical with Hashimoto's as the thyroid struggles to balance itself. Who knows? Eventually, I assume I'll be on meds, and perhaps that'll help. Until then? Carpe Diem, I suppose!

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Hmm... That's really interesting. I do sometimes wake up at night and feel as if I can't move my legs. I have to really concentrate and then it takes great effort to move them! It's a little scary and another new symptom with this recent flare!

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Hi Aimes.

I was going to respond to this post the other day. My son has this same problem and the problem has been worse since the flu. I just got back some of his blood test. Have you had your iron checked? This was a problem for my son. On his test, his iron count is fine but his iron binding compacity has dropped way down compared with his last test. Might want to get your iron and iron binding compacity checked.

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That's interesting. I always have trouble keeping my iron levels up. In fact during my last pregnancy, my doctor had me on a triple dose of iron supplements due to iron defficient anemia. I haven't had my levels checked for a while though. I should probably get it checked regardless! Thanks for responding! What do they do to correct his iron binding compacity? I've never heard of that.

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I have no ideal. I did find a study that indicates this is can be an indication of inflammation in the body. I can't wait to hear from the cardiologist after he sees the results. Our cardiologist is already talking to a hemotologist about MCAS. Just wondering if its all connected. I posted a question on the forum. Maybe somebody else has this problem and can share. Hope MAYO trip is good and you get some answers.

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Aimes

Have you looked into the periodic paralyses? This is a group of rare neuromuscular conditions that see sudden changes in potassium levels causing intermittent muscle weakness or paralysis. I understand that on-off weakness in the arms or legs is common. Can also be characterised by (temporarily) paralysed eyelids on waking. Episodes are brought on by a whole range of things, including resting after exercise or any kind of physical activity, eating too many carbohydrates the day before or cold weather. Apart from muscle weakness and paralysis, there can also be problems with eyesight and speech, muscle pain or abnormal tightness, tingling or spasms, and effects on blood sugar (something to do with the action of potassium on insulin). There can also be effects on breathing and heart-beat. It is only detectable during an acute episode. These conditions are also known as the channelopathies.

Dianne

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I get this twitching too. Sometimes I feel like a bag of popcorn. I know that it is common before falling asleep, but I get it while relaxing on the couch. Is this when other people get it? What is the mechanics behind dysautonomia and twitching?

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My twitches travel---might start in my right thigh and then hop over to my left shoulder. And the twitches themselves are rapid--hummingbird-esque. Sometimes the twitching spots feel cold....or bruised...or both. and yes, I get them all hours of the day and night. Good times!

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Ugh! I'm so sorry to see this problem in so many people! Again, not really a debilitating symptom, but really annoying! The twitching in my toe has slowed down a lot but is still there. Especially if I cross my legs. I've also still been dealing with a lot of episodes of muscle weakness/burning. It comes and goes. Some days worse than others. You've all given me a lot of things to bring up to Dr. Goodman next month! Thank you so much for your input! I've learned so much from this forum and feel like I'm on my way to a diagnosis after 27 years of searching! So, thank you, thank you, thank you!!!

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badhbt

I get the twitching while I am sitting, relaxing in my rocking chair (no, I am not 80, but they are really comfortable). I get them in my upper legs and arms. I sometimes will get them in my back also, those are really odd they feel like little bubbles bursting under the skin. The ones in my arms and legs are more like the normal twitching, they are when I am relaxed but they are also more frequent when I am having flares.

I wondered if it was a deficiency of something? They were much worse when I was worse, imagine that.

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Oh! I get the "bubble-bursting" ones too, and they're also usually in my back or under my ribs....I've always wondered what that's all about....it's a seriously creepy feeling!

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I searched "twitching" and this thread came up, thank goodness! Starting in the middle of the night last night my left thumb started visibly twitching. Just looks like little tiny spasms going on or something. I have gotten full body tremors before, but never just one part of my body twitching, so I am so worried! My mom says its normal and it has happened to her before, but I am so uncomfortable and I can't help but think that this is another symptom rearing its head.

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Margiebee, so sorry you're dealing with this! If its any help at all, my twitching has subsided and not been an issue for a couple of weeks now. When I went to Mayo two weeks ago, we found I was low in iron again and severely deficient in vitamin b12. Dr. Goodman also suspects I might be dealing with a mast cell issue but we're going to address the deficiencies before adding the mast cell cocktail. My symptoms tend to come and go so I can't say for sure that the supplements are the reason the twitches stopped. It's a possibility though! I know b12 can cause your body to go through all sorts of crazy things! I hope yours stops soon. After this toe twitch I originally posted about, I dealt with a twitch above my right ear. That was a really strange sensation, but it also went away after a couple of weeks. Have you tried ice on your finger? I'm not sure if it helped with my twitching, but it helped keep inflammation down. Good luck! :-)

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Try to correct your B levels and Iron levels first. My son's levels are up, but his last test showed no dopamine and serotonin were present in his body. Our cardiologist is pretty sure this is the connection with my son's twitching, tremors, and shaking. He has been talking to some doctors at Vanderbilt about some specialized blood work in this area. Our cardiologist is wanting to draw the blood for the test and send it to them. Hopefully this will work out. My son is still not able to stand or walk due to the shaking from waist down. I truly do believe this is a POTS symptom and I've heard is not a common symptom for a young kid with POTS. I just hope doctors can figure out how to make this symptom go away. My son has been wheelchair bound since January.

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Aimes, my PCP suspects mast cell as a possibility as well, and I occasionally have iron deficiency but somehow it can literally vary by day so I never take my supplements regularly. I took a magnesium earlier in the day, I may as well take an iron and B12 for good measure.

I will try to ice it though! I easily could've just overworked my hand muscles from all of my finals week typing, ugh haha

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