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Avatar universal

Muscle Spasms

Does anyone diagonased with lupus suffer from crazy muscle spasms and twitching.
91 Responses
Avatar universal
I too just recently started to have muscle spasms with lupus.  I noticed you posted a couple of months ago - are you still having them?  Did you talk to MD about it?  Any info?
435241 tn?1208575531
I have not yet been diagnosed but I also get some crazy muscle spasms. I notice it more when I am sitting on the couch or laying in bed.
Avatar universal
Yes! I get muscle spasms and twitching with my Lupus. It drives me nuts. It's usually when I'm laying in bed and I've just fallen asleep and I get a twitch or spasm and it wakes me up again. I don't know whether it's a side effect of one of my medications, or if it's just part of having Lupus though.
Avatar universal
Count me in, too. Doc took me off Plaquinel to see if they'd stop but they didn't. It has been going on for over a year now, maybe two. The muscle spasms are called Benign Fasciculation Syndrome or BFS, benign being the operative word. Still, it can result in atrophy of the muscle group so I started doing strength training to counter-act that when I started losing sensation in my left leg. It was my own idea but it seems to be working better then I had even hoped for.
Avatar universal
Hi, I too have muscle spasms.  Severe!  My Pain management Doc put me on Zanaflex 4mg. One usually does it and 2 knocks you out!  Try 2mg first.  Pretty strong.  Have tried flexeril but not strong enough.  This is a controlled substance so you have to have a hand delivered script to get it which is a pain (no pun intended, lol) but it is worth it.  I only use it when I have too.  Won't stop the reason but will help the symptom.  Good Luck

484098 tn?1259527532
I was diagnosed with Lupus a few years ago, and went through a remission where I had very little symptoms, but about a year ago started getting muscle spasms.  First they were in my heart area, so I was running to the ER many times with "heart trouble" only to be told that there was nothing wrong with my heart.  I then finally got a new doc that seemed to understand what was going on, and he put me on Methocarbomal, 750mg, twice a day.  They help immensely.  The spasms had started to run the gammut around my body and when they grabbed the lower back, I would scream out in pain and couldn't move.  The medicine took all that away.  I still get a few here and there, but they are mild and cause a mild pain throughout my body that I can usually handle.  I also take Darvon for the pain, around 130 mg, twice a day.  I'm happy to find others that have spasms with the Lupus.  I was worried I also had MS.  I have a lot of MS symptoms and assumed the spasms were from MS.  
Avatar universal
I have been fighting with Lupus since I was 15 I am now 28.  I was diagnosed and then was un -diagnosed   several times.... I have recently been diagnosed again for the final time, and i have been getting muscle spasms very often. I get them when I am laying down, sitting, I even have had them standing up.  I am on Methotrexate which is a low dose chemo because I also have Psoriatic Arthritis and can not be on the Plaquinel because it will make the other worse.  Why am I having muscle spasms?  should I be concerned?
483733 tn?1326798446
With Lupus your muscles can be affected.  Spasms can happen more when you are low in potassium and magnesium.  You may want to up your intake of bananas, potatoes, etc. or look at taking a magnesium supplement to help.
319532 tn?1250988576
In some cases a demylinating illness and lupus do overlap which seems to be whats happening with me. This is why some people with lupus have many MS symptoms including optic neuritis and muscle fasiculations.
434278 tn?1324706225
Could this be a connection w/ lupus of the nervous system?

Common manifestations are:

1.not thinking clearly



4.altered mental alertness

5.movement disorders (tremor, writhing motions, or balance problems)

6.stroke (they result from high blood pressure, low platelet counts, antiphospholipid antibodies and long term steroid use.)

7.peripheral neuropathy

8.movement disordersparalysis

9.altered behavior

10.visual changes

11.autonomic neuropathy (flushing, mottled skin, raynaud's, lupus headache, cognitive impairment, mitral valve prolapse, numbness and tingling)

I quickly read up on this, I hope I'm giving correct information.  Give me your take on this.
1060145 tn?1255148009
Hi Karajo,
Yes, all of these can be connected to Lupus. The mental impairment is the Brain Fog.  I am like a sponge and have read so much on Lupus, autoimmune , etc... everything I can get my hands on. Clinical trial reports, you name it. I also have muscle spasms, mostly when I am sitting in bed or lyind down. For a while I was suffering with "charlie horses". The doctor tested my aldolase level and it was high, but now it's back to normal but I still have treamors and spasms. They are a nuisance. Hope things are good with you right now.
434278 tn?1324706225
I would love for you to share what you know about lupus.  We are always open to fresh knowledge.

I am doing quite well.  Really I can't complain compared to what I was when I was so  very sick.  How are you doing?

I told someone on MedHelp that I didn't have these muscle jerks, but then the other day I had one.  They certainly don't happen very often.  I have the ripple feeling in various parts of my body, but they are certainly nothing I'm going to worry about.
Avatar universal
Re Muscle spasms. I call them twitches which started in my legs at sleeping and resting a few months ago. Proceed to my hands and now whole bod y will jerk really strongly (feel like I'm jumping). Even once my jax twitched severely recently. I will be sitting and feel a tremor in my muscles. They are hard all the time. Doc thinks I may have fibro but will receive dx in Jan or Feb from Rheum. I also have neuropathy and headaches, hair loss and few more symtoms. ANA 1.80. Do you know if this is just the fibro of could it be lupus.
Sincerely Marie 822
434278 tn?1324706225
Hi Marie,

I don't know if that would be lupus or not.  Most people w/ lupus have joint pain, fatigue and skin problems.  Those are the most common symptoms.  

Sometimes a magnesium deficency can cause muscle spasms and MS could be a possibility.  

Your ANA is considered low and not significant.  If you have lupus, sun exposure should cause the ANA to be more elvated.  I would suggest spending time in the sun prior to your appointment w/ the rhematologist.

Sometimes lupus and other autoimmune diseases come on slowly.  You don't see all of the symptoms at one time.  And they come and go mysteriously.  

Keep us posted
God bless ~Kara
Avatar universal
Thanks again for your response. The muscle twitches have developed into a full body jerk. I think it is myoclonic jerk. Also, now have hematuria. Se the doctor next week and I am really getting worried. Started with neuropahty and progressed downward from the there. I can't wait to finally see the Rheum Jan 26. Maybe then I'll have some answer. Thanks again for replying so quickly.
Marie 822
Avatar universal
I also have the full body jerks.  Was trimming my eyebrows one day and jerked so hard I ended up with half of an eyebrow!  Although I have not been diagnosed with lupus yet all my symptoms are pointing in this direction.  I have a beautiful, butterfly rash even!  I have low C4 levels.  Have you heard anything about this regarding a lupus diagnosis?
Avatar universal
Sorry, but your eyebrow incident gave me a chuckle (much needed). For spasms,for me, its just when I'm falling asleep. But I am going to Rheum on Tues Jan 26 2010 for hopefully a diagnosis. It has been a year since first started illness. Wish me good luck and I will tell all when I get back. Regards Marie822 (Sonia)
PS you might want to look up myoclonic jerk re spasms.
Avatar universal
Don't apologize for the chuckle.  My two teenage daughters and I were rolling with laughter.  I hope all goes well with you.  I too am going to see a Rheum.  Waiting for a call from my doc to tell me the appt. date.  Thanks for the info!  Keep me posted.
I'm praying for you!  Sandi
Avatar universal
I just recently got diagnosed with lupus. Dr said it is attacking my kidneys. Have lost 50 % function of kidney in 6 months.
Been waking up with severe leg cramps (charlie horses) sometimes, my body will just cause me to jerk back and forth in bed uncontrollably.
Severely anemic, and have been hospitilized 4 times since Thanksgiving of this year.  Keep vomitting, severe stomach cramps (like labor pains) and urinating blood. dehydrated.
Any suggestions ?
Are there support groups, or where can I get more information. None of my drs seem to have a clue, beside my kidney doctor, who finally diagnosed me. Am waiting for clearance from hemotologist for kidney biopsy.
ps  exhausted ALL the time. walking across the room is an effort.
1259769 tn?1269642784
I've only recently been diagnosed with Lupis also shortly after it had attacked my lungs and the doctors originally mistakened it for a virus or possible fungs that was not showing in the blood after 8 months of tests and it starting to clear up. My primary care went back through my records and put all the symptoms together to say I had 'text book Lupis' and that he was sorry he didn't see it before.

Fortunatly for me, 6 months after it had started attacking the lungs it stopped and healled slowly.  What my primary care said was if it happened again, they would know what it really was and put me on sterroids and immune suppresent drugs to back the immune system off the lungs. In a worse case situation I would be hospitallized and placed in an oxygen bubble while they 'shocked' my immune system by knocking it out intirely then after my body healled to slowly take me off the drugs and allow the immune system to recover.  This was a last ditch, save your life, situation he explained.

Currently experincing the shakes and twitches in muscles. Less since having had physical theripy... but after my insurance no longer covered it, 3 months later while still using the bands and things I was given, I am starting to have them again and also losing strength again.

Still, at first took my GF about a month to bring me out of the depression I went into that it wasn't as fatal of a dissease as it was over 10 years ago and over 90% survive with it now. Of the 10% I read most were from misdiagnosses thus mistreatment and others from not seeking medical help when it was needed.  I burried 2 friends with this and felt like the doctor gave me a death sentance innitially.

Avatar universal
i have bad muscle spasms  but i have never been checked for lupus and they get in my back around my heart  my arms  but the doctor dont no what it is ,but lupus run in my family.
1431296 tn?1283270662
I have had Lupus since I was 19 and now I am 44 I been having problems with my Lungs and just stated having very bad muscle spamsms in my upper back, shoulder and neck I have been in very bad pain I couldn't move my neck in no direction, I couldn't lay down in any positions could any one tell what should I do the doctor gave me medications for the spamsa, inflamation, and pain nothing is helping.
434278 tn?1324706225
You certainly could try magnesium supplements.  

Also, some phisical therapist and chiroprators use a tens unit.  You could also check your pharmacies to see if they sell them.  I would encourage you to go to a chiroprator before you try using one yourself.  
Avatar universal
I was first loosely diagnosed with Lupus almost 2 yrs ago. My medical is predominantly military, so in the last year I have gone through 13 medical providers. One only for one day, since they keep deploying my doctors. And basically they really don't know how to treat Lupus, just attempt to diagnose it. So I have been treating myself this whole time. (More on that later)

The first inclination of having something going on was years of Osteoarthritis. Serious stuff for mobility. Then on a trip to Los Vegas where they walk everywhere, I was jaunting across the street and ripped both my hamstrings and the achilles tendon of the left foot. I went down like a ton of bricks and luckily my friend caught me. The sobbing began immediately.

I spent the rest of the evening on the couch with ice packs. The next day I actually felt better and the pain and cramps were minimal. With an average hamstring injury you don't recuperate so quickly. I was slower the next few days, but I could walk. As soon as I got back home I went to the hospital and got it checked out.

The doctor confirmed the injury and wrapped my legs and sent me home on crutches. Soon after that the natural medicines I had been taking for my "arthritis" were not enough to stave off cramps, spasms, swelling, aching, creaking, popping and my knees coming out of joint while walking. The backs of my calves, thighs and lower back began to have more problems. I would have tightness across my chest and into my shoulders.

I went back to the doctors and let modern medicine do what it does best....diagnoses. And my doctor at the time called me up and said that the last 3 tests that he did showed that I probably had Lupus. It was a blow I really wasn't ready for. Just a year before I had a surgical procedure for a ripped rotor cuff in my right shoulder and it was taking a long time to heal properly. Since then I have been told that it is not uncommon for people with the tendency toward Lupus to have their first flair after some physical trauma and surgery is just that.

The problem is, that Lupus is a scattered condition that can have many symptoms and levels of seriousness. At the root of it Lupus is an autoimmune disorder where your body fails to recognize certain proteins as belonging in your body and then attacks them.

For me, it means I have cravings for protein and I am more of a carnivore than most. It is my body wanting to replace the protein that it is at the same time destroying itself. I do supplement with "emdamame" (soy beans) 50% protein, but for the most part I eat meat: bison, beef, fowl, fish. Salmon is great and Bison is fantastic.

I have an entire regime of herbal and mineral supplements to help with my condition....an entire other note should be for that.

If this sounds familiar to any of you or you have something to contribute or disagree, please respond.  
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