I just am wondering if anyone has muscles jumping. When I sit reading or watching TV the muscles in my legs and arms jump. They have been twitching for years but now they are jumping. It also happens when I am trying to fall asleep. I think the term is myoclonus. If you do can you tell me how they treat it. It's beginning to scare me when I read about it.
Is there a positional component that may be contributing?
Any new meds that may have this as a side effect?
And has any of your docs suggested a neuro consult?
I wasn't familiar with myoclonus, so I looked it up. I had no idea even hiccups were part of that. Learn something new every day.
Anyway, here is some information on myoclonus:
http://www.ninds.nih.gov/disorders/myoclonus/myoclonus.htm
Personally, I would suggest a neuro consult to be in order.
I only occasionally and rarely have that kind of twitching and I stress rarely, but I've come to conclude it's probably related in my case to brain injury.
But this for you as indicated has been going on a while and I think it is reasonable at this point to have a neurologist involved.
Has anyone also considered a sleep study? That can be quite insightful also. You mention these twitches also occur as you're trying to go to sleep. I would wonder if they are also occurring during sleep. The advantage of a sleep study, I mean a full baseline study, is that EEG is monitored, EKG is monitored, eye movements are monitored, breathing monitored, leg movements are monitored, BP and HR are monitored as is Nadir (oxygen saturation).
These can be quite useful as a broad spectrum diagnostic tool, at least as far as anything that may be occurring during sleep.
Just a thought, especially if you are experiencing a lot of fatigue issues during the day.
Yes, I think part of it is what normals experience, but probably some of it is due to autoimmmune/immune mediated problems.
Our nerves are what control the muscle jumping, and we have some neurological issues, for sure.
Hugs, Elaine
QuoteI think part of it is what normals experience
Off topic, but just what IS a "normal"?
@SueD - Elaine is right though that people without any medical issues ("normals" - shucks that blew my perspective that we sjoggies are the "normals" and other folks are just "different") experience these twitches on occasion.
But my perspective is that apparently this twitching is increasing in frequency to such degree that you are growing more concerned, and whether the root cause is attributable to AI or something else, sounds to me that it's time for that consult with neuro. If nothing comes out of that consult, at best you'll have some peace of mind about the twitching. And if something is identified in the consult to be contributing to the twitching, at best appropriate treatment can be initiated.
Thanks everyone. I do see a neuro a few times a year so I guess it's time to go again. Just wanted to know if it sound sjogren's related to anyone else but as Carolina said what is normal for us. I have not been on any new meds recently so I don't think it's because of that. Somedays it is so hard to deal with this disease. I guess the new symptoms and the winter blues are pulling me down. Going out today to try and have a good time.
Sue, with all that you have I would say the muscle twitching is definitely neurological. I don't have it so much now that my perisperhal neuropathy is profound and the nerves are no longer working at all. So no twitching or cramps to speak if now.
Do you have any burning, stinging, itching or tingling?
Hugs, Elaine
Sometimes we just have to get out and about and push through the winter and Sjogrens/RA/Hashimoto's (OMG) blues and blahs.If we can......
Myoclonus can be caused by Lyme disease... Be sure to get a test through Igenex Lab for that. Other labs are often useless.
Twitching can be helped by taking good quality magnesium.
Hi Sue, i have the same problem. I was diagnosed with cramp fasciculation syndrome which I think is more Isaac's syndrome. It is autoimmune mediated, specifically antibodies against the voltage gated potassium channel, but not everyone will test positive for the antibody. It's can be treated with gabapenting, lyrica and tregadol among things. My muscles are constantly writhing and twitching all over my body including my tongue and face. During exercise they very easely cramp up. The worst for me is when I try to go to sleep and the muscles cramp for no reason. It is very tiring to have the muscles continously move. The twitching I just try to ignore.
I have it on an intermittent basis. It will occur in one particular area (upper thigh muscles of the right leg, one time) for a period of 1 week - 6 weeks, and then it goes away.
I haven't had luck with getting doctors to pay attention, mostly because "you have so many other neurological issues and health problems". But when it's occurring it's quite uncomfortable.
I should add that while I occasionally have that twitching, the most annoying is when my right eye gets to twitching. I never though to look in the mirror when that happens to determine if it's the eye itself twitching or the eyelids stuff twitching. So this thread is a good reminder to me to look next time.
Warmwaters, I sure understand your issue with getting doctors to listen to you. My doctors try but once they get something in their heads they just quit listening.
Tharell I did test positive years ago for voltage gated potassium channel years ago when all this started. I was up at Mayo in Rochester but since everything else was coming up fine, they just chalked it up to a wrong reading on the test. My muscles aren't as bad as yours but I really would like and answer. No one else thinks I need it check again.
I do have a lot of tingling especially in my arms legs and tongue. I try and ignore it like the twitching.
I recently lost my Rheumy so I am in search of another one. The other one is too busy to take new patients. Just hate starting over with a new Dr. Trying to explain my last six years is hard. Do you guys know if it's against policy to ask for references in my area?
Sue, the tingling of your tongue is part of my symptoms, too. For me I am sure I have small fiber neuropathy. Once I started on a very large dose of Gabapentin (generic of Neurontin) most of my tingling is gone. I STILL have small fiber neuropathy, but the unpleasant feelings of tingling, burning, stabbing (in the tips of my fingers worst of all) is gone.
Once we have autoimmue/immune mediated problems, the 'co-conditions', things that show up along with the particular organ or system that is afflicted, may also show up. Doctors don't get very concerned precisely because there is NO additional thing that they can do.
That's why WE are here. To help people address each symptom individually, to help be on the alert for a symptom that is more than a co-condition of what we already have .
It is very very hard, to figure out what is what. We become very confused and miserable. It takes four medications and my monthly IVIG to keep me on an even keel. And this group.
Hugs, Elaine
Quote from: SueD on January 19, 2015, 05:49:25 PM
Do you guys know if it's against policy to ask for references in my area?
Feel free to ask - best bet is to start a new thread with a title like Rheumies in <your area>?
People will chime in, and sometimes will send you a PM (private message) if they want to share some particular details.
I have very similar symptoms. I have muscle twitching during the day but also have that jumping as you describe. It's like a mild muscle jerk.
My nighttime symptoms are the worst, though. I twitch and have major jerking including limbs flinging and full body jerks. They used to be worst when trying to fall asleep or back to sleep but now are frequent during the night.
My neuromuscular neurologist referred me to a sleep study. I had one about a year ago and of course had no twitching or jerking but it wasn't as frequent as it is now which is every night.
When I started on gabapentin the symptoms lessened. A helpful side effect as it was prescribed for pain. However the symptoms are worse than ever now. I've even begun acting out my dreams. I wake up with my arms or legs doing what was in my dream (eg sorting something, running - my legs going strong while I'm lying there). So I've been prescribed clonazepam and just started it this week. Not sure if it's working yet.
I had a nerve conduction test and EMG and they were normal. So it's hard to find the cause.
It warrants an examination by your neuro and a sleep study referral.
I don't know if what I have is muscle twitching, but, while on vacation together this past September, my daughter told me that when I'm sleeping, my body "jumps around." I had no idea. I have a neuro consult next month for tremors and suspected small fiber neuropathy, which is progressively worsening, and hope to get some answers.
Maria
Oh dearest Maria!
You don't need anything more....I read your signature line and it's already too much to bear.
I doubt however that there will be any 'new treatment', certainly no cure or stopping the neuropathy as far as I know.
I had a sleep study in the fall, and had NO movement in my sleep, to speak of, nothing unusual. I had the study mainly to get a longer EEG and also to see if there was any answer to why I've fallen out of bed several times in the past three years or so. no answers except a 'clean bill of health' as far as the sleep study went.
My small fiber neuropathy didn't cause any jumping (my legs are 'gone' to profound PN) but I had such unpleasant burning, tingling, stabbing pains in my hands fingers, arms (lower) and face, lips and tongue.
Now that I take 3600 mg Gabapentin, I feel much better, tho' of course bit 'slowed down' But slowed down is ok for me.
I hope you find some relief. My PN didn't move 'up my body', but my lower legs are beyond progressing. I can walk however, with difficulty and that's good. The SFN was never actually 'diagnosed'' with a biopsy. I just started the gabapentin and increased it until the pain etc. was gone. That's a very good sign that the problem was SFN. Enough for me.
Best wishes on your journey and keep us posted, Maria.
Hugs, Elaine
Quote from: Carolina on January 21, 2015, 09:19:57 AM
Oh dearest Maria!
You don't need anything more....I read your signature line and it's already too much to bear.
Hugs, Elaine
Elaine,
I think most of us have too much to bear, including you, but thank you. :)
My SFN symptoms are very much like yours, although not nearly as bad, as they do not affect my daily life at all. It does also affect my toes, legs, arms, head, tho. I also get the stabbing pains at random places, like the trunk of my body.
It used to be just annoying, but now that it's progressing, it's becoming more frequent and more painful. I was taking a spin class Monday night and the stabbing pains in my legs were awful! My rheumy has been suggesting that I see a neuro for months and I've been putting if off because my symptoms are manageable. Figured it was time, even if there isn't any new treatment.
I'm a tiny bit concerned about the tremors and movement in my sleep and wondering if a sleep study will be recommended for me as well. The tremors are at their worst upon wakening and after intense exercise. I have internal tremor as well, which is a really strange feeling. No falling out of bed for me yet, and I hope that continues. ;) Poor you!!
I'm so happy that Gabapentin is working for you and I agree that its a good sign that you are being treated for the correct problem. I don't think I'm at the point where I will need any new medication, but I'll let the doc decide that.
Thanks again, Elaine, and sorry Sue if we hijacked your post. Hope it helped you somewhat.
Hugs,
Maria
I did last year and was diagnosed with myoclonus. I went off of Plaquenil for a while and then found out I had a viral infection I now take and anti-viral + Plaquenil, thankfully the seizures have not come back.
The jumping can have many causes or no specific cause, the latter of which is called idiopathic. In any case if it continues you should be treated because they can get worse.
I have muscles that occasionally jerk. Its more of a brief jerking than twitching and it seems to affect my whole body. It happens exclusively when I am relaxing in my recliner, but only occasionally, so I have not mentioned it to my Doc yet. I can't feel it coming on and lasts only a few seconds. I have neuropathy and figure it has something to do with that. Hope you find an answer.
Maria I sure hope you get some answers. I have had a sleep study done and it doesn't happen when I'm sleeping. The only thing they found was I have broken sleep which I could have told them for free. It takes me hours to get to sleep and then I wake up every hour or so all night. Tried Ambien but that did nothing. Carolina you can hijack my posts if it helps someone else. That's why we are here.