I have had that a few times . I don't know what causes it. Are you over doing things? Maybe one of your meds might be causing this to be so bad. I'd check with your doc. And you could ckeck with your pharmacist. He could tell you if it could be a side affect to something your taking.

I just noticed it one day I think it was the first time it happened to me. It was brief, but went through my arm to shoulder. It felt funny but did'nt come back. Did'nt last long either. Who knows.

This sounds a lot like the other day...Muscle spasms. I would mention it to my rheumatologist!

hugs,
ladybrannon

I know exactly what your talking about! I've had this happen to me a few times. But i've found that when it happens, I have over done everything! With a long nap, things started to feel better. I don't think it has anything to do with my meds, i've been on the same ones for about 3 yrs. But it is a very weird feeling. Try taking it easy for a few days and see if that helps.

Kris

Hi....I was diagnosed about two years ago. I get this wierd vibraytion in my legs....It feels like the floor below me is one of those massage pads...Even when sitting, it can last for several hours. I haven't been able to pinpoint it's origin yet. My rhuemie and family doc don't seem concerned ...It must just be part of the fun of this great disease. Too bad we can't adjust the vibration to where we want....

I really like your positive attitude!!! And your right, if we could direct it where we wanted it, boy, wouldn't that be great! No more achy muscles!
Thanks,
kris

I was hoping that I wasn't the only one who
had a jumpy-twitchy-muscle problem

that is such a relief!

I'm very glad to know others have this. Has anyone had it explained yet? I systemic lupus, antiphosphlipid antibody syndrome and sjorgrens...Not sure which one is to blame. Sometimes when I am standing, it feels like the floor is vibrating, like large machinery in the basement or good music with deep bass....It is sometimes kind of rythmic (sp?)...Let me know if there seems to be a cause or explaination...I have a very good rheumy, but if i'm not in agony or having chest pain, he figures the rest is ok....Take care all

Oh boy. Recently i've been having lots of twitching of the legs from the hips down, especially when I go to bed. That's when I notice it most. Thought it was just me but feel somewhat relieved i'm not the only one. If anyone talks with their rheumatologist and they find out an answer, please share. I won't be able to discuss this new "symptom" for at least a week as I am currently in florida -not enjoying the sunshine- visiting family.

Clarebear

Hmmm....This could be nerves...I don't mean that in the normal sense. It could be a form of cns involvement...I would definately advise you to contact your dr asap and let him/her know of this symptom. Now there could be many other causes, however why take chances? When just a phone call with a question could put your mind at ease?

Stephanie

What is cns short for? I saw my nephrologist yesterday and told him about the twitching and he said it may be a magnesium deficit. I'm supposed to do that 24 hour pee collection next week and take some blood tests (take? Give, I meant). Of course when I told him about the twitching my body just turned off and nothing moved.

I felt like I took my car to the mechanic and the problem "disappeared" when he did a diagnostic.

Oy.

Thanks,

clarebear

Clarebear:

central nervous system (cns) vasculitis

cns vasculitis is inflammation of the blood vessels of the brain. It is the most serious form of systemic lupus. Cns vasculitis is characterized by:

high fevers
seizures
psychosis
meningitis-like stiffness of the neck.

I think that your nephrologist may be being over cautious, your symptoms could be caused by many other things as well....Do not panic, stay calm and talk to your rhumy as soon as you can.

Soft (((hugs))) - stephanie

Cognitive dysfunction
at some point during the course of their lupus, up to 50 percent of lupus patients describe feelings of

confusion,
fatigue,
memory impairment, and
difficulty expressing their thoughts.
This collection of symptoms is called cognitive dysfunction and is found in people with mild to moderately active sle. These symptoms may be clearly documented by neuropsychological testing, and a newer neurodiagnostic test called the single positron emission computed tomography (spect) scan shows reproducible blood flow abnormalities.
The reasons for these symptoms are not known. It may have something to do with changes in how a group of chemicals known as cytokines are handled or may be related to certain parts of the brain not getting enough oxygen.
Other tests including:

spinal taps,
brain wave tests (eeg),
magnetic resonance imaging (mri) or
computerized tomography (ct) scans of the brain may all be normal.
Cognitive dysfunction may come and go on its own, so the management of cognitive dysfunction is often frustrating and currently no optimal therapy is available.
Antimalarials and/or steroids may be useful.
Counseling, cognitive behavioral therapy and other interventions that assist a person in developing coping skills may be helpful.


Lupus headache
people with lupus experience headaches which are unrelated to their lupus, i.E., sinus headache, tension headache and bone spurs from osteoarthritis. Approximately 20 percent of patients with sle experience severe headaches which are related to the disease and known as lupus headache.
The lupus headache phenomenon is similar to migraine and may be seen more often in people who also have raynaud's phenomenon.
Spect scans indicate abnormalities in blood vessel tone or the ability of a vessel to dilate or constrict.
Lupus headache is treated like tension headaches or migraine, although corticosteroids are occasionally useful.
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the antiphospholipid syndrome (aps)
one-third of all people with lupus have a false positive syphilis test, a positive anticardiolipin antibody or a prolonged clotting time test (ptt). Collectively these are known as the lupus anticoagulant or the antiphospholipid antibody.
One-third of these patients (one-ninth of all people with lupus) will develop blood clots in various parts of the body. These patients have the antiphospholipid syndrome. When a blood clot occurs in the nervous system, it can cause a stroke.

Symptoms of stroke usually include the painless onset of neurologic deficits (e.G., paralysis on one side of the body, inability to speak) without any signs of active lupus.
A stroke is managed with blood-thinning medications such as low dose aspirin, coumadin or heparin.
The type of blood vessel involved and the patient's symptoms are considered when determining which medical therapy should be used.

Organic brain syndrome
patients with a history of stroke or vasculitis experience damage to the brain that is repaired by scar tissue. This results in seizures as well as varying degrees of difficulty with muscular movement, memory, concentration and orientation.

These patients have organic brain syndrome and usually show no evidence of lupus activity in the blood or spinal fluid.
Steroids make the symptoms worse.
Organic brain syndrome is treated with emotional support.

Fibromyalgia (fibrositis syndrome)
up to 20 percent of people with sle have a simultaneous fibromyalgia (fibrositis) syndrome manifested by tender points and increased pain in the soft tissues. In addition, patients may experience:
cognitive dysfunction
decreased ability to concentrate
difficulty sleeping
lack of stamina.
This syndrome is treated with
anti-depressants,
counseling and
physical therapy if needed.
People with symptoms of fibrositis who have no physical or laboratory evidence of increased lupus activity should not be given corticosteroids, since this treatment may make them worse.

Central nervous system symptoms due to medication
medications used to treat sle can cause side effects that are similar to the symptoms of central nervous system lupus:

non-steroidal anti-inflammatory drugs (nsaids) occasionally cause headache, dizziness, and, although rarely, meningitis-like symptoms.

Anti-malarials in very high doses may cause psychosis.

Anti-hypertensive medications may be associated with loss of libido or depression.

Corticosteroids are associated with agitation, confusion, mood swings, psychosis, depression, and in high doses, seizures.

Withdrawal from steroids can lead to: fatigue, aching, weakness, seizures.
The physician must determine what is a side-effect of medication and what is a symptom of cns lupus.

Uncommon causes of cns symptoms in sle

a research study of people with both lupus and sjogren's syndrome showed these individuals may be inclined to develop vasculitis or cognitive dysfunction.
Certain circulating proteins in the blood can occasionally lead to cryoglobulinemia or hyperviscosity syndrome, where the blood is too thick and slows blood flow to nervous system tissues. These complications are alleviated with plasmapheresis, or filtering of the blood.
Sometimes, marked decreases in platelet counts (blood components important in blood clotting) may be associated with bleeding. People with lupus, idiopathic thrombocytopenic purpura (itp) and kidney failure may bleed.
Those with thrombotic thrombocytopenic purpura or who lack protein s or protein c may clot.
Occasionally, infections of the central nervous system can be present and mimic lupus.

Signs and symptoms of peripheral nervous system lupus
in peripheral nervous system lupus, a variety of symptoms may occur depending on which nerves are involved.
Involvement of the cranial nerves can cause:
visual disturbances
facial pain
drooping of the eyelid(s)
ringing in the ear(s)
dizziness.
Inflammation of the blood vessels supplying the peripheral nerves can lead to symptoms of
numbness or
tingling in the arms or legs
occasionally, loss of sensation or muscular weakness in the extremities (e.G., carpal tunnel syndrome in the hands) can occur.
These symptoms may be due to conditions other than lupus. Electrical studies, such as electromyogram (emg) and nerve conduction tests are usually helpful in determining if symptoms are due to some other cause. For example, a herniated disc or a metabolic abnormality as in diabetes can cause similar nervous system symptoms, but show different electrical study results.
Inflammation of the peripheral nerves (called mononeuritis multiplex) is treated with corticosteroids.

How your doctor evaluates nervous system symptoms
if you have any nervous system symptoms, it is important for your doctor to know. The cause of your symptoms may be due to a condition other than lupus, or a medication, or a particular aspect of your lifestyle. The proper clinical evaluation will consist of:

an interview with your doctor,
a physical examination, and
a laboratory evaluation, including:
a blood chemistry panel
complete blood count (cbc)
urinalysis.
Diagnosis is difficult, as there is not one specific diagnostic test to detect nervous system involvement in lupus. However, certain diagnostic tests may be useful in determining nervous system involvement:
diagnostic blood tests such as:
sedimentation rate
ana
anti-dna
anti-ribosomal p antibodies
complement.
Neurodiagnostic tests currently available include:
ct, spect and mri brain scans
brain waves or electroencephalogram (eeg)
spinal taps
pet scans are only available in a few hospitals.
The spinal fluid may be examined for cells, protein components and antineuronal antibodies.
Neuropsychologic tests may be helpful in patients with cognitive dysfunction.
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how your doctor treats nervous system symptoms
as noted above, the treatment of nervous system lupus depends upon its source. If any diagnostic difficulties are evident, a rheumatologist and/or neurologist should be involved in your care.
Treatment may include:
steroids
immunosuppressants
blood thinners
antibiotics
anti-convulsants
anti-depressants
counseling
surgery.
Response to treatment may be dramatic, or gradual improvement may occur over several months.
For many people with lupus, nervous system involvement is completely reversible.

I have a question. I get what I refer to as the shakes. It feels to me like my whole in sides are shaking, not obvious on the outside, but inside only. Jittery maybe? From head to toe. Usually after over doing it fisically. Which I seem to do alot around here. i'm now wondering if it's the same as others discribe as vibrations? I've been having this as far back as I can remember. I don't remember ever telling any of my doctors about it. I guess I felt kinda silly. You never can tell how a doctor will react to what you tell them. And I never thought it had anything to do with lupus. It's just always been there............Sharon

Lady b I read your informative ost on cns. I have noticed that I do have some meory impairement and difficulty explaining my thoughts, and chalked it up as too much on my mind or I was worried I was getting alzi. How is one to know? I can't afford all those tests you mentioned. Plus it seems to come and go. Is it more common however with lupus? If so I will bring it up to my doc on next appt.

Hi sue!

It is very common among lupus patients to, at some point in their disease course, to complain of memory loss, etc.

I would certainly relay this to my doctor...Does your doctor's staff relay messages well? If so, call and leave a message about your cns concerns. You may find that he just calls you back and says that you will address it at the next appointment *or* he may ask to see you sooner. Either way, I think you may feel better about it, you know? And the less stress, the better!

Hugs,
ladybrannon

ps- keep us informed!

Lady b and sam43 (43? Yeah).

I don't have any other symptoms like the seizures headaches etc. Just twitching. Involuntary. If you have dogs and you watch them sleep sometimes, they twitch. At first it's their paws but then it's like they're running after rabbits or cats or something.

The twitching I have is the beginning -- just a slight movement of a toe, or a muscle twitch (like an eye twitch).

That's the extent of it.

Clarebear

Ladies, I recently went through testing to find the reason for the vibrations, in my case I call them electrical shocks. I had an eeg, brain mri, neck mri and an ambulatory eeg, 25 probes attached to my head that I wore for 3 days. After the ambulatory eeg was detached from my head I was very exhasted walking back to the car, and the electrical shocks started running through my body. All of my tests came back normal. My neurologist and I concluded that it is caused by fatigue. The sensations in my legs, are different sensations, I feel like I can't shake off the ache. I was recently told this was called "restless legs". I find I have to take a vicodin to help relax my legs so I can fall asleep. I hope this gives some of you some kind of answer to two of the many ailments that comes with our having lupus. :p

I was told a year ago, that I had antibodies attacking my nervous system. I have weakness and then I have this weird feeling running through my body that when you tell someone, they look at you like you are crazy. It is hard to describe so I tell them it is almost like you are being electrocuted. I was on medication last year and it finally went away. After a check up last week, I had to have more blood work, to see what is going on because the weird feeling started a couple of weeks ago, again. I had already been diagnosed with Fibromylagia. Now, I don't know what is going on. They checked for MS and Lupus last year and said they could rule it out but her I am again.
Just wondering if anybody else is feeling this bad. I feel like my legs are going to fall out from under me. I am litterally exhausted. Can't seem to get my body rested. Sure makes it next to impossible to try to work but I am still trying!
Janet from Vandalia, Missouri