Muscle Spasms

Does anyone diagonased with lupus suffer from crazy muscle spasms and twitching.

[curlyq3]

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?

[dauphins8]

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.

[lily_kitty]

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.

[Jlisa]

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.

[empressofq13]

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

Cindy

[zmombomb]

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.  

[Krickett81]

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?

[TrudieC]

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.

[scaredguy309]

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.

[karajo]

Could this be a connection w/ lupus of the nervous system?


Common manifestations are:

1.not thinking clearly

2.headache

3.seizure

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.
Kara

[babyde]

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.

[karajo]

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.

[Marie822]

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 (symptoms). ANA 1.80. Do you know if this is just the fibro of could it be lupus.
Sincerely Marie 822

[karajo]

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

[Marie822]

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.
Regards
Marie 822

[Sandi1969]

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?

[Marie822]

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.

[Sandi1969]

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

[jonah7_99]

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.
jackie
ps  exhausted ALL the time. walking across the room is an effort.

[GreyFalcon]

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.

[blondie0227]

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.

[cain123]

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 (inflammation), and pain nothing is helping.

[karajo]

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.  

[Mythteary]

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.  

[lareyna]

Jonah,

It's been a while since I read your post. I just wanted to say that I am praying for you. All my postitive thoughts and prayer go to you.

[whatdabuck]

This is a really old post so I don't know if people are still following it or anything but I was just diagnosed with lupus and i have really bad muscle spasms. Definitely the worst when i'm lying down trying to fall asleep but sometimes they'll happen when I'm standing and cause me to fall down. Just wanted you to know you're not alone!

[jpvandy]

I was diagnosed in 1990. Went through an a couple of bad years, but dr. just had me on anti-inflamatory meds. 7 yrs ago diagnosed with Diabetes and told those meds would destroy my kidneys "it's a matter of when not if". So went off all meds. Lost about 40 pounds at that time, but the weight would creep back up. Year ago started new diet counting fat & calories, as well as carbs. Got the target #s for all and went to work. I am so weight loss resistant, but stuck with it and increased exercise. Have lost ove 50 pounds, so down over 80 from where I was 7 yrs ago. Both Lupus & Diabetes seem to be going into remission. However, these muscle spasms dog me! They come in clusters and have become increasingly more severe. The muscle clamps down and stays that way for hours. One day did it in my hand and had bruising there the next morning. My dr. wants me to go back to the rheumy dr, but not good experience there. They seem to think if your Lupus is mild you shouldn't be there, so I quit seeing mine. I also have RLS, which my dr. now thinks is related to the Lupus muscle spasms. She just gave me new meds, and said if they don't work, I need to see another rheumatologist. Not sure about that one.

[Loyalty123]

I got diagnosed with lupus (SLE) about a year ago and it started with spasms and it happens everyday its very uncomfortable. I didnt knw that was a side effcet of lupus but i do now thanks guys:-)

[Dovemaster]

I Just found this sight by accident. Since April I've had several ER visits, a week in hospital trying to figure out why I have severe problems breathing. Since hospital I've been on o2 100%. I have never smoked or been around fumes but they thought I had copd and emphasema. I'm trying to make this as short as possible. The hospital said I was a mystery, the hospital Dr's didn't know. MSU college Dr's don't know and now I'm starting to go to U of M. Yesterday something clicked in my brain to google some health situations. I will be surprised if they don't find that I have Lupus. Last fall I had severe muscle and joint pain so I went to a rheumatologist. She diagnosed it as fibro. My family members have had MS, rheumatoid and osteo.arthritis and fibromyalgia. The research I found was incredible. I can't believe someone wouldn't have checked on lupus. A list I've made of symptoms has everything listed as a symptom for lupus!

I was sitting in the living room trying to deal with all of my twitching and jerking when I thought I've got to ck. this out, if this is another symptom and I found this sight. I am so glad now I know it's just not me thinking these things and that they are for real. I know lupus is sometimes hard to diagnose and that many diseases overlap. I'm seeing my rhematologist in 2 days and then an appt. at U of M the day after. I would be so happy if my Dr. here would diagnose it so I didn't have to make the trip unnecessarily . So I've rumbled on but it's the first time I've talked about it. Thank you all for speaking up about your physical problems and or emotional.           Have a great weekend!!  FYI, I have also seen a neurologist and he said the twitching and jerking was from medications. Now it appears that it's probably not from that.

[SusieRae35]

I am going to be 35 this mth and it took up to 6 mths ago to find out i have Lupus, it was my Butter fly rash. my Lupus..Born blind in right eye,,weak ankles. always had something broke or sprung, Knee cap pops out on the side to where one little movement shoots pain through me. Surgery didnt help. was on stage 3 liver failure.
ALL the sub acute skin Lupus I have..No sun, hot water,humity,Butterfly rash, paper thin skin.Toe nails always fell off. Hair lose in 2 places, my hands and feet freeze and go numb . I also would get a twitch up the side of my neck to where people would look I me crazy. pain and heaviness in chest. always hurt all over, went blind in the left eye last month for a day. just got over(sorta) bronchitis.went #2 maybe 1 time a wk most my life. And goin through major muscle spasms in upper arms. I never had a steady hand but there are moments I cant text or hold a fork to my mouth. I am sure I am leaving something out.  but all that to come up with Lupus cuz a rash on my face.  
The thing is. Lupus itself isnt the part that hurts. it attacks every part so you never know whats next.  But It soo helps ,with just finding out about this that Im not alone. ty guys All I can tell my kids is My body is allergic to my body.

[confusedca]

Hi, I have not yet been diagnosed, and could use some advice. Had a positve ANA, and high CK levels, but no symptoms. Then I went away in a sunny holiday, which I recently found out can bring lupus out. Since being back, have been constipated,get muscle cramps very often, but they don't sound as bad as a lot who have posted here, sore feet, although they seem to be more sore when sitting or laying down. When I get up, it feels better. Also , I get a lot  of aches in my lower legs, and have tendonitis in both elbows and a shoulder. Sometimes I get pain in a couple joints in my hands, but they don't last long. About 2-3 years ago, I used to get extreme headaches at night that were never diagnosed, and eventually just went away. None of these pains or aches are severe, but can't help wondering if it could be lupus starting to show up. NOt sure weather to go to dr, or wait till it gets more severe.  Any suggestions would be appreciated.

[karajo]

There are other things beside lupus that can cause the ANA to be elevated.  And sometimes, healthy people can have a low titer.  It doesn't sound like you are having lupus symptoms.  

Surely there was a reason they even checked your ANA.  And the amount and pattern are helpful information too.  

[kamckenzie]

I started out with diag. of Sclerderma from fam. Dr., sent to Rheumatologist, he said no to that, watching me for Lupus.  This went on for a year, I quit going to anyone.  Symptoms became worse,  back to Rheumatologist,  said I had Lupus.  Now, I have Mixed Connective Tissue Disease, along with Raynauds, Schogrens, RA, Demylinating polyneuropathy and Lupus.  Severe anemia, received 8 wks of IV iron infusion.  Was researching muscle twitching, didn't realize it could be a result of Lupus.  Does anyone see a Functional Medicine MD?  I would love to have my disease treated/addressed and not just treating the symptoms.  Looking for a FM dr., don't really care where, traveling would be worth the help.  On too numerous amount of meds to even list.  Thank you for listening!

[kamckenzie]

I started out with diag. of Sclerderma from fam. Dr., sent to Rheumatologist, he said no to that, watching me for Lupus.  This went on for a year, I quit going to anyone.  Symptoms became worse,  back to Rheumatologist,  said I had Lupus.  Now, I have Mixed Connective Tissue Disease, along with Raynauds, Schogrens, RA, Demylinating polyneuropathy and Lupus.  Severe anemia, received 8 wks of IV iron infusion.  Was researching muscle twitching, didn't realize it could be a result of Lupus.  Does anyone see a Functional Medicine MD?  I would love to have my disease treated/addressed and not just treating the symptoms.  Looking for a FM dr., don't really care where, traveling would be worth the help.  On too numerous amount of meds to even list.  Thank you for listening!

[Ricobord]

Magnesium supplements can help alleviate muscle twitching.  Epsom salts baths are a good source.

[stanggril]

I suffer from leg spasms too mostly while I'm laying down. I was diagnosed with lupus nine years ago in July and diagnosed with fibromyalgia about
3 years ago. It took about a year for me to get my lupus diagnosis. I was a literally a pin cushion! Just constant tests and bloodwork! It was so frustrating! Not to mention the fact that some doctors just look at you like you're a hypochondriac!
I'm not sure if anyone else suffers from this? I get really bad squeezing
pains in my groin area (inner thighs) sometimes one leg at a time or both.
and often times my toes turn purple under my toe nails. While other times it just hurts so bad on the bottoms of my feet that its hard to even walk or put my weight on them. Also I started getting really bad soreness in my hamstrings.  Thanks for listening. I'm new to this forum.
(Ana level 1:640) plaquenil 400 mg daily; vicoden as needed; (refused to take prednisone!)

[ivgirl]

I have had lupus for five years now and always know a flare is coming when the bottom of my feet are so sore I can hardly walk on them. I also have vasculitis so it might be from that

[debkeen]

I was hospitalised 11 years ago for generalised muscle cramps and had a CK rise of over 1000 and a battery of antibody tests where only the ANA was positive. On the strength of that the most lkely diagnosis was SLE, but as I  returned to normal I didn't need treatment and was in denial, although
I later had frequent muscle cramps anywhere in my body and sometimes almost my whole body. But then I learned about magnesium supplements and found a balanced magnesium supplement that included other vitamins, amino acids and potassium. Its called ULTRAMUSCLEZE made by Bioceuticals and is found in Australia anyway, at health food shops and chemists, but its not on display, you have to ask for it. I take it only when I get warning twitches of muscle groups or actual cramps and find that half a teaspoon of the powder straight off the spoon and held in my mouth until it absorbs works within 10 to 15 minutes. It's fizzy and tastes OK, but most importantly if I dissolve it in water and drink it, it takes about an hour to work and often lasts for 5 days or so. Very occasionally I need a second dose and even less occasionally when I think I am proceeding to another  muscle meltdown I take a couple of valium. So far i havven't had to return to hospital for treatment. Hot packs also help.

Magnesium action.The mechanism of skeletal and smooth muscle contraction starts with sodium and potassium causing the first wave of contraction, then calcium and magnesium are transported in the second wave of conduction that is resposible for the maintenance of a contraction. Calcium is responsible for contraction, while Magnesium causes relaxation at that point. Magnesium level is poorly controlled in the cells and serum and is lost easily in urine as the body strives to reabsorb other positively charged electrolytes particularly sodium in preference to magnesium.

As SLE is a progressive disease I bit the bullet and am shaking off the denial since I had the malar rash for the first time a few months ago ( denial me scrubbed it off with an exfoliator and it hasn't returned) and have developed joint swelling and pain. Guess I will have to get referred back to the rheumatologist for some hydroxychloroquine soon.

All the best with the Ultramuscleze. Don't overdo it, it is an important electrolyte and you may develop muscle weakness if you do, but you'll probably get diarrhoea before that if you've taken too much. Cheers, Deb

[debkeen]

I was hospitalised 11 years ago for generalised muscle cramps and had a CK rise of over 1000 and a battery of antibody tests where only the ANA was positive. On the strength of that the most lkely diagnosis was SLE, but as I  returned to normal I didn't need treatment and was in denial, although
I later had frequent muscle cramps anywhere in my body and sometimes almost my whole body. But then I learned about magnesium supplements and found a balanced magnesium supplement that included other vitamins, amino acids and potassium. Its called ULTRAMUSCLEZE made by Bioceuticals and is found in Australia anyway, at health food shops and chemists, but its not on display, you have to ask for it. I take it only when I get warning twitches of muscle groups or actual cramps and find that half a teaspoon of the powder straight off the spoon and held in my mouth until it absorbs works within 10 to 15 minutes. It's fizzy and tastes OK, but most importantly if I dissolve it in water and drink it, it takes about an hour to work and often lasts for 5 days or so. Very occasionally I need a second dose and even less occasionally when I think I am proceeding to another  muscle meltdown I take a couple of valium. So far i havven't had to return to hospital for treatment. Hot packs also help.

Magnesium action.The mechanism of skeletal and smooth muscle contraction starts with sodium and potassium causing the first wave of contraction, then calcium and magnesium are transported in the second wave of conduction that is resposible for the maintenance of a contraction. Calcium is responsible for contraction, while Magnesium causes relaxation at that point. Magnesium level is poorly controlled in the cells and serum and is lost easily in urine as the body strives to reabsorb other positively charged electrolytes particularly sodium in preference to magnesium.

As SLE is a progressive disease I bit the bullet and am shaking off the denial since I had the malar rash for the first time a few months ago ( denial me scrubbed it off with an exfoliator and it hasn't returned) and have developed joint swelling and pain. Guess I will have to get referred back to the rheumatologist for some hydroxychloroquine soon.

All the best with the Ultramuscleze. Don't overdo it, it is an important electrolyte and you may develop muscle weakness if you do, but you'll probably get diarrhoea before that if you've taken too much. Cheers, Deb

[shannon2732]

i have all these symptoms i have been suffering for yrs and dont know what it is. 3 yrs ago i found out i had Lyme which was undiagnosed for 2 yrs and now im on so much medicine idk if its a side effect or what but right before it rains i get these twitch feelings in my legs and pins and needles and it does happen more when im on the couch or in bed and my whole body aches i do also have arthritis but i also get migraines i can barely walk up the stairs the MRI was normal, how do they test for lupus im gettin frustrated i cant find out whats wrong i feel the doctors dont understand the twitching feeling its hard to describe i feel im being brushed off, and i can see tiny white patches on the MRI they say its from moving. i am exhausted and cant play with my kids due to pain, i have lost some hearing and now wear hearing aids which is part of MS i think?

[bugsy0301]

Thanks for your info. I have had Lupus for 6 years but am finding its hitting me pretty hard at the moment. Fevers like crazy, pleurisy, kidney infections, but this I am unfortunately used too. What is worrying me is these bizarre twitches and really violent spasms or ticks as I call them as the almost replicate Tourettes  Syndrome ticks. They generally affect my arms, neck, legs and hands. I've also started shaking all over. My vision is deteriorating and I;m dizzy and have balance problems. I fear its targeting my central nervous system now. So getting back to BFS, did you find that medication Methocarbomal helped??n

[aborre]

I am not sure if you are sill reading this..but once again I am on the search in the middle of the night due to muscle spasms. This all started for me in Feb 2012. I have seen so many doctors and we are down to a few things: positive ANA homogenous cells, 1.68  a B12 deficiency and also low vitamin d. I have lost my job and my home and am so tired of whatever this is! I have ruled out all vasculitis,connective tissue disorders and infectious diseases. I have and no fever (but one ear infection) uvietis, impentigo, and constant UTI's. My rhum thinks it is Lupus due to no lesions found on MRI for MS. I am not sure if my symptoms are matching though. I cannot look up with my eyes and they are in severe pain all the time!! It feels like the muscles are contracted for about four to six hours at a time on the eyeball. WEIRDEST THING! I was wondering if anyone had any insight? Thanks to all and I am sorry you are all going through similar situations!!

[aborre]

I am not sure if you are sill reading this..but once again I am on the search in the middle of the night due to muscle spasms. This all started for me in Feb 2012. I have seen so many doctors and we are down to a few things: positive ANA homogenous cells, 1.68  a B12 deficiency and also low vitamin d. I have lost my job and my home and am so tired of whatever this is! I have ruled out all vasculitis,connective tissue disorders and infectious diseases. I have and no fever (but one ear infection) uvietis, impentigo, and constant UTI's. My rhum thinks it is Lupus due to no lesions found on MRI for MS. I am not sure if my symptoms are matching though. I cannot look up with my eyes and they are in severe pain all the time!! It feels like the muscles are contracted for about four to six hours at a time on the eyeball. WEIRDEST THING! I was wondering if anyone had any insight? Thanks to all and I am sorry you are all going through similar situations!!

[Teri001]

Hi, I am so sorry that you are going through such pain and uncertainty but I do understand and sympathize with your questions.  I too was hit like a ton of bricks last December 2011 when on a routine BP check and my internist ran the usual CBC and I received a call that my blood platelets were 53,000 when the low range is usually in the 140,000.  The next words out of his mouth were I am referring you over to an oncologist at our cancer center.  What I did not know was that all of my blood counts were out of whack and the search started for what was wrong with me.  Cancers were ruled out thankfully but I too then began this journey and have been stuck and poked and prodded so many times that I am used to it and I used to faint at the sight of blood.  Now, I just sigh and go on.  
I had a lot of muscle and joint pain and my left shoulder even froze in place before I was diagnosed by April 2012 with Lupus. I have had some restless leg but was put on Gabapentin which is used for Fibromyalgia pain and restless legs and it seems to work well. I have also had bouts with anemia throughout my life and it seems as the Lupus was around before I was aware it was around.  
My eyes have changed but I believe it has been due to the Prednisone doses.  I hope that you find a great RA and can get some relief for your symptoms.  
My biggest discovery yet is that no person wears the same Lupus hat and that each individual has their own set of issues to deal with.  Good luck to you and God Bless.

[aborre]

Thank you for your concerns! I am sorry you are going through the whole "health battle". I am at a dead end right now and about to start planquinel or something like that. I have had severe reactions to medications and cannot take anything for pain becase it KILLS my eyes when they get tired. I am going to go to a teaching hospital if this med does not work. The eye pain is by far the worst thing I have ever exp in my life! Hopefully I can get some answers soon. Until then its just me, the computer and my bed lol. Thank goodness for down comforters!!! ;)

[Teri001]

Hi,

I am so sorry that your eyes are giving you such trouble.  I went yesterday to our teaching hospital in Louisiana and had more labs run.  The doctor seemed very knowledgeable and strangely enough said that my Lupus diagnosis could be wrong.  That opened another can of worms but she did tell me I could keep lowering my Prednisone dose and get off the Imuran.  These were great words indeed as the medications have made me feel worse than before I started treatment.
I do wish you great luck with finding some answers and some relief.  These immune diseases are really rough on all parts of the body and there is no one place to try to fix, really challenging.  
Please keep me posted on your progress and yes you are right down comforters are nice although here it is still 82 at 245a and another 100 degree day tomorrow.  Life in the south and summer, ugh!

[patti315]

Wow this is all so illuminating! I've had a tentative diagnosis of Lupus since last September but the rheumatologist seems hesitant to make the commitment, not that an official diagnosis would change anything really. I deal more with my PCP who is sympathetic but admittedly knows little about treatment for any form of Lupus, and my nephrologist who seems a little more knowledgeable but again, reluctant to cross the line. Does anyone have a recommendation for a rheumatologist in the Dallas/Ft. Worth area that is good with the disease?

PJ

[Teri001]

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

[Teri001]

Hi Patti,

Here is the name of an RA at Presbyterian Hospital from my friend in Dallas.
These are her words about her doctor.

yes, I love my Rheumatologist. Her name is Dr. Kathryn Dao. Her PA is great too, Leilani Law. Her clinic is the Arthritis Care and Research Center, ph 214-373-4321. They are associated with Texas Health Hospital (Presbyterian). Very very well respected. She was referred to me by my neurologist (Gerhardt). She was very very thorough with me and Leilani was great.

Hope this helps you.  Please keep me posted.

Teri

[Taylormade52]

Hi,
I am what they call C4 deficient Lupus. From what I understand, that means that testing for Lupus is spotty. I can be positive one day and not positive another. Although the symptoms are always there!

[amlat311]

I am seeing a rheumatoid for the first time in NOV. "new patients can start being seen on NOV 3RD" really? thanks.

Anyways I started out having CRAZY muscle twitching in my arm associated with kind of a "bone pain" then my whole arm swelled up and went numb. i was put on NSAIDS for the pain, then my blood work came back that i had positive ANA and LOW platelets. the twitching in my arm moved to my WHOLE BODY. legs, arms, hands, back, butt, feet, back. I CAN SEE my muscles twitch. its gross!

had more blood work done and my labs came back worse. I also feel like i have restless leg syndrome. it *****. and there are morning where i feel like i cant get out of bed and i feel so bad bc I have a 2.5 year old lil guy.

i started taking 1000 mg of vitamin C, juicing and taking this immune probiotic  shots bc i feel like crap all the time and get sore throats, etc... they help out a lot.

any thoughts? lupus?! i cant wait till NOV so i can find out whats wrong with me. btw my leg just had a crazy twitch.

[karajo]

Another thing you might could try in the mean time is magnesium.  1200 mg calcium and 600 mg magnesium.  

Have your dr. test for vit. D and B-12 levels.

[Teri001]

Hi,

I don't know if you are in small rural area or a city but maybe you could be referred to another RA before November.  I do know that they will work you in if you are having severe problems.  I was diagnosed with SLE Lupus back in January of this year and because of my platelets was sent to the front of the line so to speak.  I am on my 2nd RA and like her much better than my first one.  If you have research hospital or teaching hospital you will find they are wonderful because of all the new information they are privy to.  
My 2nd RA is the head of the department in a teaching hospital so she is really up to date and caught the fact that my platelets were not coming back up at all and I have just been diagnosed with liver disease caused by the undiagnosed Lupus which is the root of my platelet problems.  So, while I am very disturbed at the new findings I now am pointed in the right direction to find out how bad things really are.
There is another support site that I have found that is really wonderful and people respond on it everyday so you might have more information to sift through.
Hopefully you will be able to be seen earlier than November.  I am in Louisiana and could steer you to doctors in the south if you are close.  Anyway hope this helps.  The other site is mdjunction.com .  It never hurts to have other opinions and hear other peoples stories, it has been very helpful for me.  
Please feel free to keep me posted or ask any questions you like or just to vent. I am Mina001 on the mdjunction and in the Lupus support group....

Teri

[In_sickness_n_health]

My bf was diagnosed with lupus nephritis at 15 and is now 39 and has been in remission for almost 20 years. Yay for that! But I have noticed that he has always had these muscle twitches/tics that he says are painless. another yay! recently the twitching has become more frequent. Through many hours of research we have found that you must be careful with immune boosting drugs/herbs ect. He was taking a supplement that was a blue/green algea called chlorella, it is wonderful for the normal person but not for him. Since lupus is and autoimmune disease that can exacerbate the problem and even cause more flare ups. He has a yearly physical and has always had trace protein and trace blood in his urine that will most likely never go away due to the scarring in his kidneys. his diastolic blood presssure is also slightly elevated 130's/90's which we have been told is also "normal". I pray that he remains in remission. To help ensure that we eat low protein meals and juice often using alot of dark leafy green veggies. Good luck in all you do!!!!

[cavery700]

I get them and it's horrible...use to only get em in my legs but it has progressed over my whole body and sometimes it feels as if I'm getting a heart attack ! Very scary...God bless~!

[KristineHolly]

I have lupus and have had spasms starting in my tummy then extending to my limbs. I also get a burning numbness before the spasms.  I do not see a Dr (I don't like them), but u all's posts was very helpful ty.

[KZDJNLA]

WHAT PERCENTAGE FIND HIMSELF/HERSELF IN REMISSION?

[karajo]

There is a 2-10% chance of remission.  Also, the onset of menopause is associated with milder disease.  

[kincera2]

Well all dis is new to me I had been sick since June 2011, and since oct I started getting muscle spasms real real bad to the point that I thought I was having a heart attack, they will start on my legs and they will make my foot get so tight that I was unable to move it and I would get a burning sensation on my other foot that went all the way to the middle of my chest and to the point that would take my breath away and once I get one of those bad ones Im left with no straight,  can anyone help me.  Oh I'm taken lots of meds as well.

[karajo]

Welcome to the forum.  Sounds like you are having a terrible time w/ spasms.  Have you been diagnosed w/ lupus?  What medicines are you taking?

[hamheff]

Hi there everyone. - New here
I've been almost a year with no exact diagnosis. Started with a complaint of Carpal Tunnel. After having blood work, the doc said I had lupus. Sent me to a Rheumy who said it was not lupus. He tested me for everything under the sun but ended up referring me to another doctor. That doctor said it was probably rheumatoid arthritis even though rh factor was negative 2x. She also found a pinched nerve in my neck.
Stopped going to the doc. Felt I was wasting my time. Pain is still strong in my hands with swelling, joint pain, warmth, aching, sharp and sometime pins and needles. Pain is also in my neck, feet, knees and back. In the last few months, I've been getting random muscle spasms(mostly at night) and a lot more pain in my feet and lower legs. Almost feels like muscle cramping in my calf. But also, for the last 6 weeks, I have had vertigo steady. Worse at night when rolling in bed but have had to leave work(unable to drive) and have almost fell down at home. Feel at a loss..... But back to the doctor I will go..
Anyone else ever been told it was Lupus, It's not Lupus?

[karajo]

Oh yeah.  It looks like lupus, well, maybe not, well, it's something autoimmune..... yes, it happens all the time.

Have they checked you vit D level?  

Some things that you might want to give a whirl is magnesium along w/ calcium.  I was having some vertigo along w/ some headaches.  I took some distilled salt water and irrigated my sinuses w/ a nette pot.  That has helped quite a bit.  

I have a lot of muscle spasm, twitching, cramping symptoms too.  Sometimes charlie hoarses.  Very painful.  I think it's perhaps calcium deficiency.  Do you drink soda pops?  They can pull calcium from your bones...too much phosphorus in cokes.

What lab lead the first dr to decide it's lupus?

[hamheff]

I'm not sure if they have checked my vitamin D but I have an appt. in 2 weeks so I will ask. I was first diagnosed with Lupus from a blood test. I was later told it was a lab error and that it was actually negative. I'm wondering if the negative result was actually the error. When I read these forums, I can relate to most of what everyone is saying. My mother-in-law has Lupus and she thinks the same thing - that maybe it was a wrong diagnosis. I noticed this morning a bruise on my leg that I don't remember doing - second time that's happened in 3 weeks and they're dark purple bruises - not real big but noticeable and not sore.
When I go in, I'm going to ask to be re-tested.
I do drink soda, maybe too much, but I will cut down and try some of your suggestions.
Thanks for the help

[hamheff]

Been reading some other posts. I wonder if maybe my ANA was down on the day they repeated the bloodwork. My doc seems to be basing the whole diagnosis on that bloodwork. The bloodwork was negative, so I don't have Lupus? I had x-rays, ultrasounds, emg plus I've been tested for ankylosing spondilitis, carpal tunnel, rheumatoid arthritis, leukemia, lupus... plus a bunch of tests with letters in them.. lol. Don't know what they were for but I am anemic and a migraine sufferer. I take a pile of vitamins everyday to help and sometimes it does. Never been tested for MS but I think my symptoms are more like lupus then MS. I work in trucking selling parts so hopefully if it is lupus, I can get some modified duties. Been at this job 4 months and am finding it very difficult - but maybe this is just a flare up

[karajo]

OK, when you go back to the dr. ask if they could repeat the ANA.  I am under the impression that they have to wait a certain time before they can repeat the ANA due to insurance issues.  Anyway, when they agree to re-do the ANA, spend time in the sun prior to having the test done, even if it's cloudy.  Depending on the exposure - how many clothes you have on and cloud cover - but around 15 min.  "If" you have lupus, this will cause an immune response, thus causing your ANA to be elevated.  A positive ANA is not the only thing they look at, there are other symptoms.

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation (inflammation) of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever (90-95%)
low vit D levels
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few

Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.  

[CMarieD]

OMG! Some people that know what I am going through. My spasms sound identical to most of you. It usually happens when I'm comfortable in bed almost sleep or when I am asleep and it wakes me up. It is so frustrating when I go to my doc and all he says is "I don't know what can be causing it". Recently, it has gotten more painful and more frequent. I have the 5 mg flexeril but it makes me so sleepy so I break it in half and it still leaves me groggy for the next several days.

[karajo]

I'm still learning about all of this, but I'm thinking the muscle jerks can also be associated w/ fibromyalgia too.  It must be common for people who have had a busy day for their muscles to jerk at night as they are unwinding.  Is your sympotoms only at night or does your muscles jerk during the day too?  Is this your only symptom?

[sweetheart1990]

I'm new to this page,was reading comments on muscle spasms,I suffer from them also, usually when extra tired. I have found for me a glass of oj helps, I still get them but it slows them down and not as many at one time.  My are usually in my back.

[TeppiK]

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.  

[hamheff]

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?

[karajo]

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.  

[MelMarie123]

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 (migraines), 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.  

[karajo]

Yes, I would definitely push the issue.  Just because there is a neg. ANA does not totally rule out lupus.