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Home > Archive > Lupus Support > October 2005 > myositis
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| I see you're discussing myositis. Here's two websites about it.
http://www.myositis.org/about_myositis/faq_general.cfm
http://orthoinfo.aaos.org/fact/thr_...%20orthopaedics
Myositis (my-OH-sigh-tiss) is a rare disease in which the immune system
chronically inflames the body's own healthy muscle tissue. No one knows
what triggers the immune system's attack. Persistent inflammation
progressively weakens the muscles. Myositis can take several forms,
usually develops slowly over time and can range in severity from mild to
debilitating or worse. Both children and adults can get it.
Signs and symptoms
Weakness and pain in the muscles of the hips and shoulders is often a
first sign of myositis. You may have difficulty getting up from a chair,
combing your hair or climbing stairs. You may become too tired to walk or
stand. Myositis can affect the muscles in the front of the neck and
throat, making it hard to speak or swallow (dysphagia). When it affects
the lungs or chest muscles, you may have trouble breathing. People with a
certain form of myositis may also develop a rash on the face, knuckles and
other parts of the body. Other possible symptoms include fever and joint
pain and swelling. See your doctor right away for diagnosis and treatment.
Diagnosis
Myositis can be challenging to diagnose. Symptoms vary by person and your
doctor must rule out other conditions that affect muscles (i.e.,
hypothyroidism, toxin exposure, drug reactions and genetic disorders).
Give your doctor your complete medical history, and describe your symptoms
and when they began. Your physical exam will probably include one or more
blood tests to look for autoantibodies and muscle enzymes such as creatine
kinase (CK). You may also need other specialized tests such as an
electromyogram (EMG), which measures the electrical pattern of the
muscles. Your doctor may request a muscle biopsy, in which a small piece
of muscle is removed, stained and examined by microscope to show
whether/how fibers are damaged. Sometimes your doctor may use magnetic
resonance imaging (MRI) to identify areas where muscle is inflamed.
Forms of myositis include:
Polymyositis (PM): PM inflames and weakens muscles in many parts of the
body, especially those closest to the trunk (proximal). Dysphagia is
common, as is fatigue and pain in the joints and muscles.
Dermatomyositis (DM): DM inflammation damages both muscle fibers and skin.
Like PM, you develop muscle weakness, pain and fatigue. In addition, you
have a distinctive patchy, reddish rash on the eyelids, cheeks, bridge of
the nose, back or upper chest, elbows, knees and knuckles. In some cases,
you may develop hardened bumps under the skin.
Inclusion Body Myositis (IBM): Symptoms of IBM typically begin after age
50 with very gradual weakening of muscles throughout the body. You may
develop dysphagia, weak wrists or fingers and atrophy of the forearms
and/or thigh muscles. Unlike other forms of myositis, IBM occurs more
often in men than in women and, unfortunately, there are no effective
treatments known for IBM.
Juvenile Myositis (JM): Although some children develop juvenile forms of
PM and IBM, children usually get juvenile DM with symptoms of muscle
weakness, skin rash and dysphagia.
Treatment
Although there is no cure for myositis, prompt and aggressive treatment to
reduce inflammation of PM and DM can help prevent muscle weakness from
progressing and might help restore some of your strength.
* Medications: Corticosteroids (i.e., prednisone) and other drugs that
suppress the immune system (immunosuppresants) may slow down the attack on
healthy tissue and improve skin rash. Your doctor will probably repeat
blood tests throughout your treatment for myositis to monitor improvement.
You may also want to use nonsteroidal anti-inflammatory drugs (NSAIDS)
such as aspirin or ibuprofin for pain relief.
* Exercise: After drug treatment takes effect, a program of regular
stretching exercises prescribed by your doctor can help maintain range of
motion in weakened arms and legs. Physical therapy may also help prevent
permanent muscle shortening. You may also want to add whirlpool baths,
heat and gentle massage.
* Rest: Getting enough rest is an important component of managing
myositis. Take frequent breaks during the day and limit your activi
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| Wow, interesting reading...thank you so much.
More and more I have problems at night when trying to go to sleep. I
don't sleep much to begin with but lately when I go to bed at night my
legs twitch and have this funny sensation to where I must constantly
move them. I have read up on restless leg syndrom but I must tell
you....at this point I am beginning to sound like one of those people
who is always complaining..lol. I keep it to myself but something
definately is not right with my body.
Again, thanks for the info.
~Lisa~
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| Yes, thank you to J for the good info. Lisa, this post of yours made me want
to ask if you have had your B12 levels checked. This kind of problem can be
associated with that.
BJ-Sk. Canada
"Lisa" <jimenez.lisa@gmail.com> wrote in message
news:1127994115.938829.191860@g47g2000cwa.googlegroups.com...
> Wow, interesting reading...thank you so much.
>
> More and more I have problems at night when trying to go to sleep. I
> don't sleep much to begin with but lately when I go to bed at night my
> legs twitch and have this funny sensation to where I must constantly
> move them. I have read up on restless leg syndrom but I must tell
> you....at this point I am beginning to sound like one of those people
> who is always complaining..lol. I keep it to myself but something
> definately is not right with my body.
>
> Again, thanks for the info.
>
> ~Lisa~
>
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| Lisa wrote:
> Wow, interesting reading...thank you so much.
>
> More and more I have problems at night when trying to go to sleep. I
> don't sleep much to begin with but lately when I go to bed at night my
> legs twitch and have this funny sensation to where I must constantly
> move them. I have read up on restless leg syndrom but I must tell
> you....at this point I am beginning to sound like one of those people
> who is always complaining..lol. I keep it to myself but something
> definately is not right with my body.
There's some causes to rule out listed on these webpages (and yes BJ, Vit
B12 deficiency is one of them)
http://www.ninds.nih.gov/disorders/...stless_legs.htm
http://www.postgradmed.com/issues/1...99/evidente.htm
This one also lists some meds that cause RLS - I had to quit one that I
was on for years because of RLS
then if the problem persists, there's meds mentioned there.
I've been taking a low dose of one of them for years.
re: VitB12, some of us can't absorb it. So just popping vitamin pills
doesn't fix it.
It has to be checked in the bloodwork and if low, get injections. Some,
like BJ, have to have ongoing injections.
I can't remember if she still is or has been trying something else.
J
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| Lisa wrote:
>
> More and more I have problems at night when trying to go to sleep. I
> don't sleep much to begin with but lately when I go to bed at night my
> legs twitch and have this funny sensation to where I must constantly
> move them. I have read up on restless leg syndrom but I must tell
> you....at this point I am beginning to sound like one of those people
> who is always complaining..lol. I keep it to myself but something
> definately is not right with my body.
whoops I forgot something.
http://www.sleepdisorderchannel.net/rls/
And, surprisingly, fever seems to decrease it.
So maybe people with Lupus who have low grade fevers, have it less or less
severe or not at all, when they're having the fevers?
J
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| Hi J,
I am still taking the injections. In fact they have increased the number of
times I get it to twice a month. My MCV and MCH were getting higher and
higher. My macrocytic cells were increasing dramatically, while my
hemaglobin, rbcs, and hematocrit were going even lower. Apparently, there is
a new protocal for pernicious anemia. The doctors now suggest the use of
sublingual B12 tablets.(1000mcgs) They are used daily, thus eliminating the
need for IM injections. The doctor had me try them, but they would not
dissolve under my tongue. My mouth is so dry all of the time. I was to get
one shot a month and use the tablets. My counts worsened, so now I am back
to shots twice a month. There is a B12 strip that you put on your tongue,
much like the breath freshing strips you can buy. It dissolves rather
quickly, so it may work better for those with dry mouth. I may try that, so
I would only have to drive to the city once a month during winter. That
would be far easier for me.
BJ-Sk. Canada
"J" <fakedmail@example.com> wrote in message
news:433E4B62.61DDF11@execulink.com...
> Lisa wrote:
>
>
> There's some causes to rule out listed on these webpages (and yes BJ, Vit
> B12 deficiency is one of them)
> http://www.ninds.nih.gov/disorders/...stless_legs.htm
> http://www.postgradmed.com/issues/1...99/evidente.htm
> This one also lists some meds that cause RLS - I had to quit one that I
> was on for years because of RLS
>
> then if the problem persists, there's meds mentioned there.
> I've been taking a low dose of one of them for years.
>
> re: VitB12, some of us can't absorb it. So just popping vitamin pills
> doesn't fix it.
> It has to be checked in the bloodwork and if low, get injections. Some,
> like BJ, have to have ongoing injections.
> I can't remember if she still is or has been trying something else.
> J
>
>
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