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Muscle weakness or aches?


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#1 smac0719

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Posted 12 July 2008 - 11:13 AM

Does anyone experience problems with their muscles? Today I was out and about and had the hardest time walking, pushing the grocery basket and lifting. It is a weird feeling but it's like all the muscles in my body are weak. Even typing is a chore right now. It has left me very tired. Any thoughts?
I may have Scleroderma, but Scleroderma doesn't have me!

#2 Sheryl

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Posted 12 July 2008 - 02:10 PM

smac0719,
I have muscle issues. Some days I am fine other days my muscles just ache. Sometimes they lock up when I am in a grocery store or walking and pushing a cart. I have to stop and slowly move or wiggle or shake my legs to get them to unlock. They make me skip or limp or get jerky, (quirky). Then they return to normal. I live with leg and muscle cramps. I also have a frozen shoulder that is in a cramped position and have been in therapy to restore muscle tone and tendon strength. I know I have lost strength in all my muscles this past year. And I do exersize. Your muscles can get very fatigued and resting them never seemed to help me. I keep using them so I can keep them as strong as possible.
Strength and Warmth,
Sheryl

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#3 truman

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Posted 12 July 2008 - 02:25 PM

My childhood friend is diagnosed with polymyositis which concerns the muscles. Has your rheumatologist tested you for this?
Tru

It is what it is...........

#4 nan

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Posted 12 July 2008 - 05:19 PM

Yes, I now use a scooter when I shop. It used to kill me to push the grocery cart. I had a stress fracture in my foot for 27 weeks, that's when I really started using the scooter. I do exercises also. I have fibromyalgia also which makes my muscles really hurt. Take care of yourself!
Nan

#5 jefa

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Posted 12 July 2008 - 11:54 PM

Hi, smac0719

Please note that we are not medical experts and can not give you specific medical advice. You should be raising these issues with your rheumatologist. A simple muscle enzyme test will help the doctor determine if there is any inflammatory muscle disease. If this is the case, exercise can be a problem, as repeated muscle use can worsen the inflammation. You can read more on our page of Scleroderma Muscle and Joint Involvement in the section on Myositis.
Warm wishes,
Jefa

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#6 smac0719

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Posted 13 July 2008 - 02:23 AM

Thanks all. I was hoping resting yesterday evening and getting a good night's sleep would help, but I'm having the same issues today. Fixing my oatmeal was an effort. I feel really bad because I'd promised my family and a couple of friends that I'd cook today. That doesn't happen often due to the illness and I've had to reschedule for the past two weeks. They are very supportive and they will understand so that's not the issue. I was also looking forward to getting back into the kitchen. Oh well, that's the way it goes sometimes. :(

I'm going to email my Rhuemo today and hopefully I can get in to see him this week. I'll keep you posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#7 Karenlee

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Posted 13 July 2008 - 04:53 AM

smac,

Sorry your having muscle fatigue. Going to see your Rhumetologist is your best bet. Just do what you can do for now and try not to push yourself.

Karen

#8 Peggy

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Posted 13 July 2008 - 05:35 AM

I have terrible muscle pain in my arms and legs. It is to the extent that I wear a prescription pain patch either 75mg or 100mg which administers pain meds throughout the day. I change it every 3 days. My sclero started with peripheral neuropathy of my hands and feet and swelling. They first tingled and then went numb. Then from there it went to the pain in the muscles and joints. Just 3 months ago I was also diagnosed with Polymyositis and the next appointment I plan on asking if this is from the sclero or from the Polymyositis. I have had IVIG therapy for 3 months which brough my CPK muscle numbers down to normal but I haven't noticed any difference in the muscle pain and weakness.

I also notice if I try to do to much it will really knock me down. I really pay for it then. I tried mowing just the lawn as lawn work WAS something that I loved to do and I really enjoyed a manicured lawn. Now I'm not able to do that or I really pay for it. So now I pay a neighbor boy to mow. It bothers me still that I can't do it.

The doctor put me on Lyrica just 3 weeks ago and I haven't noticed any change in that it's helping either. So if this is from the sclero or from the Poly would be nice to know.

Warm hugs,

Peggy

#9 janey

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Posted 13 July 2008 - 05:53 AM

Smac,
After reading about your symptoms I would like to suggest that you ask your rheumatologist to run some bloodwork for your CPK (also called CK). There has been a lot of mention of polymyositis (PM). Like Peggy, I have both PM and scleroderma. Unlike Peggy, I don't have any pain, but I use to have lots and lots of muscle weakness and fatigue as you describe. We do have some information on Polymyositis that you might want to review. You might find some symptoms that sound familiar. It is a connective tissue disease just like scleroderma, so many people do get such an overlap.

I am no doctor no do I have any formal medical training, but this is how I understand the CPK to work. The CPK test will determine the amount of muscle enzymes in your blood. (normal is less than 200). The more inflammation you have in your muscle, the more of these enzymes end up in you blood. My first CPK test was at 3000 which is actually low compared with others I've known with PM. Now with my IVIg treatments it's down to 100. Muscle inflammation causes muscle weakness, fatigue and sometimes pain. My original symptoms were the inability to get up from a chair, walk up steps and eventually raise my arms up to wash my hair or even lift my head up off a pillow. Any exertion caused my whole body to feel so tired. So if any of this sounds familiar, please talk to your rheumatologist about it.

I hope you make it through the day. Can you turn it into a cooking party and have everyone pitch in and help you? Please let us know how you are doing.

Big Hugs,
Janey Willis
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#10 luvbnmom3

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Posted 13 July 2008 - 10:07 AM

I would for sure talk to your rheumatologist about it like others have mentioned. Hopefully he'll be able to help out.

Yes, my shoulder blades/upper back & upper arms tremble when I am working at the computer, my shoulders do if I am laying on my stomach & resting on my elbows. It feels like my shoulders are tight, the range of motion, so when my arms are forward, resting on the desk I get burnt out or something.... I don't know.

My mouth trembles sometimes when I try to smile or talk, and my left thumb & right leg will jump periodically... sometimes for no apparent reason (not at the same time) & othertimes in response to any noise or voice that normally wouldn't be the least bit startling.

Lastly...lol, often when I lay down in bed at night, my muscles & tendons don't just relax into the mattress, I instead jerk into a relaxed postion... it isn't a smooth or immediate transition.

So yeah... seems lots of us have some muscle issues. Talk to your rheumatologist... I'm curious what they have to say. I'd read that Polymyositis link too... I'm going to.

#11 Purr

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Posted 13 July 2008 - 01:07 PM

Hi SMAC,

I have polymyositis along with sclero, lupus, and raynauds. According to "The Scleroderma Book, second edition" by Dr. Maureen Mayes, it affects the shoulder and hip muscles more than the hands or feet which is the case with me. I knew something was wrong when I thought the power steering had gone out in my car. I could hardly lift anything. It was a real effort to just carry a set of sheets to the washer (about 10 steps away). There is no pain. At least I didn't (don't) have any. Also, I had difficulty keeping my balance for awhile. If I tried to run I would start falling forward. The same thing would happen when I bent down (can you imagine falling into a dirty litter box? eeeewwwwwww! Fortunately, that didn't happen.). Methotrexate and prednisone are the medications I take. Besides the poly, it also works for my sclero and lupus.

You should see your doctor so they can check your blood work. That's how mine was diagnosed. My CPK count was up around 3000. Now it's back down to normal. It's taken about 9 months to get there.

I hope you get things straightened out. Take care.

Christy
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#12 smac0719

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Posted 14 July 2008 - 06:35 AM

I was able to schedule an appointment with the rheumatologist for Wednesday afternoon. I could not get lab orders prior to the visit and my Dr has changed his email address so my email to him came back undeliverable. I'll follow-up after my appointment.
I may have Scleroderma, but Scleroderma doesn't have me!

#13 Sweet

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Posted 14 July 2008 - 08:06 AM

Hi,



Yes, I do have problems with that off and on. There doesn't seem to be any reason for the pattern in which it presents itself. Today is a very heavy, weakness feeling for me.
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Pamela
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#14 jaateach

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Posted 14 July 2008 - 10:28 AM

Hi,

I also have sclero. I had developed some muscle issues; weakness, fatigue and cramping pain. My rheumatologist tested me for mitochondrial disease and the tests came back positive. It is a simple enough blood test. My rheumatologist sent me out to Irvine cal. where they are doing some cutting edge research on mitochondrial disease. The doctor there told me that they are seeing sclero patients with positive mito. They actually think that mito may have caused the sclero. Hard to get my bbrain around this. Sclero will always be my first love... ha, ha, ha....

Goood luck,

Joe

#15 Sherion

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Posted 14 July 2008 - 02:11 PM

Joe,
What is mitochondrial disease? I've never heard of it.

Sherion

#16 jaateach

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Posted 14 July 2008 - 03:42 PM

Sherion,

Mitochondrial myopothy is a muscle disorder, sometimes called adult on-set muscular dystrophy. If anyone wants to learn more there is a very friendly site: umdf.org.

I think the mito stuff puts me down harder than sclero stuff.

Joe

#17 Sherion

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Posted 14 July 2008 - 04:36 PM

Thanks, Joe. I'll have to check that site out.

Sherion

#18 Bird Lady

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Posted 15 July 2008 - 11:17 AM

Hi Smac, I have diffuse sclero. I have muscle pains primarily in my arms. The only thing I've found to keep it under control is low dose prednisone. Good luck working this out with your doctor. Birdman
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