Twitching and "hyper-reflexia"?

General
1

Hi everyone,

For about 3 or 4 months now, I've had this weird "twitching" or "jerking" as I can best describe it. If I'm sitting down and watching tv or playing on the computer, or reading, etc my leg or arm will suddenly twitch and jerk a little on its own. It happens randomly, but very frequently. I've posted about this before, but it's been getting worse. Now my feet and sometimes even my shoulder or head will do it. And sometimes I feel a slight stinging sensation when it happens, almost like a small electric current going through my arm. It's not really painful, but very annoying and I have to admit it's scaring me.

I was diagnosed with Sjogren's in October. Since then, I've been on Plaquenil and Pilocarpine. It does seem to be helping, and I don't get as completely tired as I used to. I still get tired sometimes and have a bad day now and then when I don't feel great, but at least now I am able to have a life and I'm not tired all the time. My thinking has also gotten sharper and my memory seems to be a little better.

This twitching thing is kind of worrying me though. The last time I went to my doctor, she was testing my reflexes...you know, where they tap you with that little hammer. She tested several parts on my legs, arms, and feet, and she remarked that I was "hyper." She explained that I had hyper-reflexia, but isn't sure yet what is causing it. Apparently, hyperreflexia is where your reflexes are more sensitive than they're supposed to be, and might mean something is going on with the nerves. She ordered blood tests and is going to refer me to a neurologist. I had the blood drawn, but I haven't been back to the doctor yet. My next appointment is in a week, on December 15.

My rheumatologist doesn't think the twitching is related to the Sjogren's, but I think it has to be. I have never had this problem before, not until all these other symptoms started. He keeps saying that it is from anxiety. I have liked the rheumatologist up to this point, but now he is starting to frustrate me, sounding like all the other doctors who try to dismiss EVERYTHING as being due to "anxiety"! (Why do doctors always do that now?!) At least he does acknowledge that I have this disease and is giving me medicine for it. And he's ordering blood tests too.

Has anyone else here had this weird twitching or jerking problem, or had a doctor tell you that you had hyperreflexia?

Sorry this is so long. One other really weird thing that has happened to me a couple of times is that I've woken up from a dream in the middle of the night and felt my arms or legs moving and kicking. One time, I woke up and felt myself hitting the window with my hand, like I was trying to reach for something or hitting something! I woke up and it took me a couple of seconds to realize what I had done, and I was thinking "What in the world?!" Another time, I vaguely remember feeling my leg kicking. I woke up early in the morning because I heard what sounded like glass. My bed is right next to a window, and I woke up to find that the window was broken! At the time, I assumed that the wind had blown a branch into the window and broken it (we do get really strong winds here in the fall and winter). But now, I'm wondering if I broke it during my sleep!

What the heck is happening to me?! Has anyone else had anything like this?

- Chris

2

I'm wondering if you have looked up the side effects of the medications.

Could it be that the involuntary jerking is from your meds?

3

Hi!

It's been a long time since I've been on the site but I had to respond to your post. I've had this for years. It began before I was ever diagnosed with Sjogren's. I talked to my orthopedist about it and he assured me it was severe muscle spasms. He seems to be right because when I took something for spasms, Baclofen, they got much better. The side effects make me very sleepy though, I would rather have the twitching. It's been years now and I have gotten used to it. Sorry to agree with your rheumy but mine gets worse with stress. My ortho also gave me Lorazapam 1mg. I take it at bedtime and whenever I am really stressed. It really does help. I also get eye twitches which are VERY annoying so I take it then.

I hope this helps. I know how frightening this can be. I also have the hyperreflexia but mine appears on and off. I do believe it is part of the Sjogren's. I understand your frustration with your doc but sometimes we just have to ignore their ignorance and know that we know our bodies much better than they do.

Take care,

Bels

4

Hi...I don't have the violent twitching but I did get the occasional jerking, especially when trying to sleep. The other things you mentioned like an electric shock down the arm, etc is something I get along with some other things. The neurologist is the one who got to the bottom of that. Its neuropathy and I am on gabapentin now, which has made a huge difference. as far as it being anxiety...I understand how frustrating that is. While stress can aggravate an existing condition, a severe symptom can't be blown off as if anxiety is the actual cause. Keep advocating for yourself! We all have to but heads with the doc a little from time to time. As long as the doc makes you feel heard, you're on the right track.

5

I understand completely your concern. I have had the same involuntary jerking and twitching you are referring to as well. I’ve had this even before starting any SS meds. I was just diagnosed this year in May. I mentioned it to my rheumy on my last appt with him in Sept and told him it was kind of like being jolted with electricity but it isn’t painful, just a weird feeling. He ordered a brain MRI and an EMG, both of which came back fine. Now he ordered a biopsy to test for small fiber neuropathy. Waiting on Neurologist office to call to set up appt. I was also told several years ago while having a sleep study done that I have restless leg syndrome. I don’t know what it is but it’s freaky. I’m just glad my rheumy is listening and trying to find answers. Hopefully you’ll get some answers soon too.

6

I get the twitches also. I am just glad they are not painful, though irritating. They usually only last for a couple of days at a time, then I don't have any for weeks. I am just dealing with them, because I have so many bad reactions to medicines, it is not worth the risk. Sometimes a nice warm tub bath feels good and makes it go away for me. Hope you get relief my friend.

7

I have had the twitches and jerks plus spasms for about four years now. Even before I was diagnosed with Overlap syndrome/SS. I had been on Pregabalin ( a different form of Gabapentin) for about 7 years for regional pain syndrome, but it had no impact on the twitches/jerks as they were unchanged when I chose to stop taking this med as my liver wasn't coping well. Sometimes the jerking is akin to my limbs having a mind of their own, and they can be profoundly explosive movements with no warning. It is often worse at night ( maybe because I am tired/fatigued) and I am usually so sore and stiff in the morning from all the spasming I am not very functional - it feels like lactic acidosis like after heavy exercise. No tests or assessments have ever been able to give an answer as to what it is, and for me, no trstment gives any real relief. Most of my docs just shrug and say - we dont know why.

8

I have the twitches all over my body. Diagnosed with restless legs and put on clonazepam. With it I can sleep through a lightened version of twitches. When I stop the clonazepam, it all comes back. Good luck getting the pproper care

9

There is a big difference between restless leg syndrome, "twitching" and especially hyper-reflexia. As common as two of the three are, it not unlikely that SS patients would have them. As SS usually involves higher levels of potassium, its generall not a cause of restless leg syndrome, in fact it should LOWER the possibil;ity if anything

Carpopedal spasm, which is easily confused with restless leg and twitching, is possible because of hypocalcemia not uncommon with SS. Carpopedal spasm a sudden transitory constriction of a passage, canal, or orifice. bronchial spasm bronchospasm. Carpopedal spasm is spasm of the hand or foot, or of the thumbs. Dryness of course is a cause. Vitamin D and calcium supplementationalong with a lot od hydration usually takes care of it BUT the chemistries should be run.

Hyper-reflexia if diagnosed is something different and not at all related

10

Thank you everyone for your replies.

Tj1, I have both twitching and, according to my doctor, hyper-reflexia. I have no idea what is going on. But I would say that this along with all the other debilitating problems Sjogren's is throwing at me is certainly making it more than an inconvenience eh?

11

The hyper-reflexia needs followed up on. What are your most recent ANA numbers or have they even been done? Any MRI's lower spine and head? The blood work will shed some light on it. Those are the sinister (and unlikley) possibilities

You also likely need a urological work-up I'm a bit surprised your rheumie didn't start there.

The most common cause of generalized Hyper-reflexia (without spinal injury) is cystitis which is one of the more common co-morbidities with SS (especially at your age) It is frequently asymptomatic so a quick "urine strip test" wont cut it. You will need the big differential culture and maybe even the urologist taking a peek up there (cystoscope) If you have had anything like thrush that wasn't thrush (white stuff in your mouth) that may be a clue as well.

Sorry but 43% of Hyperreflexia is anxiety related and nearl 9 of 10 get relief from one of the following:

  1. Paxil (34.88%)
  2. Omeprazole (34.88%)
  3. Mirtazapine (20.93%)
  4. Prednisolone 20.93%)
  5. Risperdal (20.93%)
  6. Paxil cr (18.60%)
  7. Abilify (18.60%)
  8. Lipitor (16.28%)
  9. Wellbutrin (13.95%)
  10. Ondansetron (13.95%)

Some of these meds, especially the SSRI's can cause a dry mouth, so even though its old fashioned I tend to like the TCI's over the SSRI's or the newer stuff (abilify, Wellbutrin etc) The TCIs do a better job regulating sleep and help with pain management IMO, but this of course is a doctor discussion.

A doctor suggesting the anxiety/stress/depression connection is not necessarily a quack. IF he doesn't offer some pharmacology help. he is a quack. This is an exocrine disorder. The exocrine system of course regulates these things. You may need a referral to a good pharmacologist or a psychiatrist who specializes in pharmacology to get the right mix.

12

I have tested positive for ANA twice, although I don't remember what the most recent titor number was. I also later tested positive for SSA, and that, along with my worsening symptoms is what finally got me diagnosed.

When I switched to a better doctor (the one I currently have), she said right away that my symptoms were NOT being caused by anxiety, and dismissed that idea entirely. I'm glad I didn't listen to all the other doctors who kept brushing me off and want to send me home with an anti-anxiety medicine instead of helping me.

The doctor is referring me to a neurologist. In the mean time, I was asking if anyone else else here with Sjogren's Disease had experienced these symptoms. Judging by the replies here, it seems that other people have.

13

Nobody has ever said anxiety causd anything only that there is a relationship. I see you studied some more about cystitis which is also one of the major results of SICCA. The cystitis just as it is in the elderly is also a cause of the frequent brain fog. A

utonomic Dysreflexia will get you more results as you study your symptoms.

Because SS is a syndrome as opposed to a disease, its very frustrating to those that have it. Each person is different, and for the most part one is limited to considering their symptoms individually. If you carry it back far enough you can usually find the SICCA or exocrine connection, but not always.

When you see the neurologist don't assume he will have all your records OR that he will have read them. Make sure you have copies of all your previous ANA tests.