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Muscle Spasms

Does anyone diagonased with lupus suffer from crazy muscle spasms and twitching.
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Avatar universal
Hi Patti,

I have a friend that lives in Dallas and I believe she just went to an RA last month but she deals with Fibromyalgia and spine problems but it might be a referral.  With what I have absorbed about Lupus and immune diseases in the past 8 months is that a great hematologist is one of the keys.  Also, I have been referred to our teaching and research hospital here in Shreveport at LSU.  The first RA and I butted heads as you can see in my other posts and I am on my second one.  She seems much more willing to listen to me and my symptoms and side effects than the other RA was.  She is having me see one of the research hematologists there in the next week and we will go from there.  
I seem to have some of the criteria for Lupus and some for other auto immune diseases as well so they are going to try to isolate the problem.  The big one for me is the low blood platelets and no response to treatment.  Walking timebomb I guess for now.  
Supposedly Lupus is one of the most challenging diseases to diagnosis correctly and sometimes is the diagnosis when a doctor hits a wall and does not know where to go next.  
I do really like my hematologist that I have now but feel another opinion will only help me get to the root of the problem.
I looked on line and Methodist and Baylor are in Dallas, do you all ready go to one of those for treatment?  Baylor is ranked so high, seems like you have wonderful choices there.

Anyway, sorry to ramble, I am up as usual at 245a probably because of the Prednisone, hard to sleep.

I will ask my friend too, but please let me know how you are doing.  I find other people with the same problems are so much easier to chat with.

Teri
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Avatar universal
I have horrible muscle spasams. Have had them for a while now.
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Avatar universal
I have lupus and I been suffer with muscle spasm between my lower shoulder. I been taken muscle relaxer and it really not doing any good so I just deal with it until the pain go away. It there anything I need to do different. It's been 16 years and the pass 6 years I been dealing with muscule spasms.
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Avatar universal
What is ANA?."
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This sounds so familiar.  I have not been diagnosed with Lupus or MS yet but they have been suspicious for 6 years.  my ANA Titer is 1:1280. I had shoulder surgery 9 weeks ago today and the past several weeks have been in what I usually call a flare of some sort. My joints in my hands hurt really bad. My neck and knees hurt and I am just really realy tired all the time. In my mind daily there are 100 things I want to do and should be able to do but physically I just can not keep up. I just don't know who to turn to anymore in the lines of specialist I have been to them all. The neurologist has been the one running the show and sometimes I feel he is just not looking in the correct places. I called last year to get in with a specialist who is an MD but practices integrative medication but my appointment is not until August.        
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Avatar universal
I don't have lupus and I get muscle twitching and my body feels shaky. I do however have anxiety and when I get stressed out it gets worse. I found something online called BFS benign fluctuation syndrome. It's pretty much caused by stress. I've gotten blood work and everything is normal. I did have a EBV (mono virus) infection last year before it started, so I don't know if they set it off or what. So in conclusion it may be the stress of having an incurable disease. I'm not anything close to being a doctor, I'm just a worrier that googles too much. I've learned to live with it.
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1 Comments
So crazy, I had mono last year and then this possible bfs as well. Not diagnosed with lupus (yet), but I e been suffering from muscle twitching and vibrating sensation especially when I sit still or at night. I also have anxiety. But it's all in my head right?
Avatar universal
Soy can cause lupus flares.
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Avatar universal
I have been having twitching throughout my body that gets worse when I try to fall asleep. My rheumatologist started me on low dose neurontin and it has helped a lot with the muscle twitching. Magnesium supplements have also helped but the neurontin really did the trick.
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Avatar universal
Ive just been diagnosed with Lupus and have had painful muscle spasms in my legs at night which wake me up.It all started before meds but they don't seem to help them x
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434278 tn?1324706225
Yes, dsDNA is very specific to systemic lupus.  So sorry they are giving you the runaround.  
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Avatar universal
Oh yeah and one other thing that I'm not sure is related. They found cysts on my kidneys through my family doc. Never mentioned it to my Rhuemy cause I didn't think the 2 were related but now I wonder??
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Avatar universal
So here's something interesting. My rhuemy tells me last week she is at the end of what she can test me for. She won't give up on me but is really at a loss. So, today I see my family doctor and tell her I need to see someone else since the pain in my hands is severe now. She says to me that she already told me I have Lupus and that's what's causing my hands to swell. I tell her the whole story, how I've been tested 3x, the EMG's, the X-rays, Ultrasounds.... I said there must be another condition that's causing this. She looks through my paperwork and says there are only 3 conditions possible - carpal tunnel(negative 2x by 2 different doctors), RA(negative 4-5x through bloodwork as recent as last week) and Lupus. What my family doctor found interesting is that the positive was Ds-DNA. She says it's specific to Lupus but none of the other doctors I have seen have tested for that specifically. I confirmed today that my rhuemy has never re-tested for Ds-DNA. Anyone else out there have Lupus like this? After all these years, I can't believe this is the first time I'm being told this information but I still don't know if it even means anything. Doctors are so frustrating.....
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Avatar universal
So, it's been about half a year since I posted here... I still have no DX...Except, the doc thinks maybe it's Fibro but they'll only say that for sure when she's ready to give up looking.. ugh..  I was referred to a neurologist who said he had nothing to add to my case but this past week, I think I had a Lupus Butterfly rash. It was mild and only lasted one day (although I put some Aveeno cream on it). It looked sort of like pimples on my face and was ever so slightly purplish and the following day I was sick with a cold. It is the 4th time this winter I have had a cold/flu and every time comes with fever and chills. This never happened to me before. I can't just get a cold anymore. It's so much more this year - fever, chills, body aches (my hands and feet are the worst), headache, fatigue(real bad)....
Prior to this, I showed my doc a video I took of the Carpal Pedal Spasms I get(finally she listens. lol) and she was sure I had a parathyroid problem - those tests came back normal. 3x they have tested ANA with 1x positive and 2x negative. Maybe I was in remission?
One thing I know for sure is with every "flare" up, I feel worse and have more trouble recovering from it.
I go back and forth every day trying to figure out for myself what is wrong, but with this recent rash, I really wonder - could be Lupus this whole time?
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Avatar universal
This discussion board has helped me realize I am not alone! I have started to have lots of twitches. They are anywhere on my body, but only when resting in my Lazy Boy or in bed. When I am very tired, they keep me awake for some time.I mentioned it to my neursurgeon (back surgery soon for a bone spur) and his response was, "I have heard he same from several patients." But he didn't give any explanation. It's frustrating, and others can't possibly understand. They just think I'm complaining again. I've had a full year now of back pain....tried everything. Surgery Dec. 17. I'm not thinking it will help the twitching, though. I'm really looking forward to getting off pain medications. I hope that will help!
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Avatar universal
How are you doing with the twitches? I have started to have them. They are anywhere on my body, but only when resting in my Lazy Boy or in bed. When I am very tired, they keep me awake for some time.
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Avatar universal
I am so happy to hear others experience the horrible muscle spasms that wrap around your waist! I recently been in & out of the ED because of it. I had a dr who literally tried to tell me it's pneumonia!!! I finally was given Valium to relax the muscles. I increased my prednisone too-- this has been very helpful. Please keep sharing your post-- w/o hearing from people living with Lupus I think I would be seriously depressed. It lets me know I'm not out of my mind.... Thank you all
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Avatar universal
Hi Guys :)
I'm 24 years old, and very much thinking I could possibly be (developing) Lupus. I have an appointment with an MD tomorrow, but I'm worried they will dismiss my symptoms and tell me I'm just stressed. It all started about 4 years ago.
I started getting numerous UTI'S in summer 2009. The UTI's were like clock work, every two weeks. I would even pee blood with them they were so bad. It was summer, I had a pool in my back yard, I was dating a new guy- the doctors came up with everything. I can't tell you how many times I heard "You're a female, this happens to us."
My sophomore year of college, I turned into a kidney stone- making machine! I even had one lodged in my ureter for a WEEK and they needed to do surgery. I had never been so sick in my life.This happened twice (2 surgeries). SEVEN kidney stones later, I went to an endocrinologist because one blood test showed a parathyroid hormore to be elevated. The parathyroid hormone was never elevated again in future blood tests, so I was released from the endrocrinologist's care. I am happy to say, I haven't been plagued by kidney stones for some time now. (*knocks on closest wood furniture*) I still get random "ticks" in my kidneys, maybe like there is stones bouncing around...
   So, lately... I've been having some sort of "episodes" before my period. They usually come on approx. 2-3 days before my period. I am on a birth control pill. The gyno said that I possibly had too much estrogen in the pills, and we've tried a butt-ton of different ones. Nothing seems to deplete whatever these "attacks" are I'm having every month. Let me explain.
    Every month, I wake up with a KILLER MIGRAINE. Like, I've been partying for days and days... such a sickening headache. I have thrown up multiple times from them being so bad in the past- can't keep my eyes open. Then, within a few hours, my body follows suit. My neck goes, my shoulders become so sore, my legs feel like I've been doing heavy squatting, very weak muscles.  Simply moving from the bed to my couch in my tiny little apartment is exhausting. Needing to get up to go to the bathroom is so strenuous. When this starts, I know darn well there is no school for me,no work for me- no nothing for at least 2 days. It makes me feel so worthless because I'm in my last year of school and I want to get this figured out before I graduate and get a job.
    Last month (September) I had a rash accompany the "attack". It was on my left shoulder. Red, raised, scaley patches. It stretched down to my shoulder blade. Didn't itch, just hung out for a couple of days and then vanished. I thought it was dry skin, so I put cocoa butter on it a couple of times a day and just chaulked it up to dry skin. The two biggest patches donned a boarder, the other smaller ones did not. I'm so mad at myself for not getting a picture to show the doctor. I usually stay sick for close to three days, until my period starts or I start a new pill pack. These "attacks" are so painful, I BEGGED my mom or boyfriend to take me to the hospital and they just told me to rest it off and I would be ok. "Resting" during one of these things is impossible. The heating pad is my only relief.
  If it were just related to my periods, perhaps I wouldn't be so concerned, however, last semester during finals, I had the same sort of situation happen. This, however, was mid- cycle... completely ill. Pounding headache, body aches, next to "immobile", vomitting. But, I had ONE finger swell up... just one. My left pointer finger. (I'm right -handed)  Thought I may have hit it on something (I just didn't remember), the joint was really swollen, looked like one giant sausage finger. I couldn't bend it down all the way. It stayed like this for a LONG time- quite a few weeks and gradually returned to back to normal. Not long after that, (this was May) I developed a weird little dry patch on the same finger. Somedays it looks red and irratated, other days (like today) it's just dry and cracking. It's still on the tip of my left pointer finger and now it's October. And of course, what lead me to this page... I have the muscle twitches too. Not painful by any means right now, just annoying when trying to fall asleep or sitting with my feet up.

Basically... I just need to know I'm not crazy guys. I'm SO scared this MD tomorrow will just brush me off (Tomorrow is our first meeting). Tell me what you think... and I will keep you posted.
For the record, I've had seven kidney stones by the age of 22, I KNOW pain, and whatever I'm going through right now is no joke- I'm not a wussy.
   Whether it's lupus or not... I just want to get it figured out. I can't miss school when I'm so close to the end.

Night!! Katie
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434278 tn?1324706225
Have you been diagnosed with Scleroderma.  It can definitely cause swallowing issues to occur.

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Avatar universal
Wow you sound a lot like me, I started out with the Scleroderma symptoms, I have horrible Reynauds, now to the point of pain when it starts to "thaw" out. Is affecting my esophagus, Doctor describes as a lead pipe when food goes down, no peristalsis anymore. Most recently had fluid around my heart, Tamponade occurred, had to have "windows" placed in my space around my heart. Have had all the + tests for lupus. But now my concerns are of horrible bloating /gas, gets worse as the day goes on..also have started to have severe spasms in lower legs /feet...also muscle twitching...any thoughts on any of these??
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434278 tn?1324706225
Yes, I would definitely push the issue.  Just because there is a neg. ANA does not totally rule out lupus.  
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5512628 tn?1369058180
So, I am 40 now and I was diagnosed with Fibromyalgia over 10 years ago, about four years ago I had to have my Gall Bladder removed which is supposed to be an outpatient surgery and ended up admitted to hospital with sever pancritis, liver and kidney failure.  I have been diagnosed with brisitus, arthiritis, vitamin D deficiency and Perenimious anemia (b-12 definciency) . I have discoid rash on my elbows and forearms, severe migranes, severe mucle spasms and horrible, make me cry cramps.  I have severe fatigue and can not make it through a day without a nap.  I had an ANA test done 10 years ago that came out ok.  Because of the negative ANA test that I had 10 years ago the pysicians I have seen say it can not be Lupus.  I am convinced it is Lupus,  is it appropriate for me to demand a ANA be done again?  I keep having spurts of pancritis, and my liver and kidney function are never normal.  
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434278 tn?1324706225
I suggest you get a copy of the actual lab work.  I've had drs. tell me everything was normal when it really wasn't.  I often wonder if they really look at that stuff.  I would also keep a daily journal of your symptoms.  Along with your activities.  
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Avatar universal
So I went to the doc. Mentioned to her that I have tested positive for Lupus in the past and also negative. She seemed very interested in my livedo reticularis which I did not realize(at the time) could be a sign of Lupus.... Anyway, she said the symptoms were there and she was going to do a full panel blood work. I've been calling for 3 weeks for results and keep getting told the doctor is not in or results aren't ready and finally today, the receptionist says the doctor left her a note saying the bloodwork was fine, book follow up appt and MCP ultrasound.....
So now, what I'm wondering is - does that mean it's not Lupus? Because the receptionist never said "it's not Lupus" Can the blood work be normal with Lupus?  I don't understand why a follow up appt would be necessary if everything is "normal".  I assume the ultrasound for my hands is because they hurt the worst and I have developed nodules (which I have also heard is common in Lupus) Just not sure how much longer I can continue to wait. It gets harder every day and the doc she doesn't want to start treatment without a diagnosis so the only thing I take for pain management is advil...
Anyway, just wondering the opinion of others - Anyone else have this happen? Should I be concerned?
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Avatar universal
I was diagnosed with lupus 2 years ago.  I have raynaulds and fibromyalgia as well.  I noticed my tremors before I was diagnosed. I have tremors in my hands, but when I lay down, I feel tremors, almost like I am shivering, in my shoulders and ribcage, I feel like my muscles never relax.  My muscles are always tense. I saw a neurologist and he put me on an antisiezure medication which, after one dose, I WILL NEVER TAKE AGAIN!!!!!  I was so groggy and dopey...  i think I will try magnesium and ask my primary for a muscle relaxer.  
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