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Muscle Weakness

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#1 KarenL


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Posted 30 October 2007 - 09:51 AM

I am having a terrible time going up and down stairs and opening jars. It seems to be getting worse. I read somewhere that scleroderma effects your muscles. anyone know what to do to help? I feel like an old woman!

#2 Peggy


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Posted 30 October 2007 - 01:29 PM

When I first started out with getting sick it started out as numbness or peripheral neuropathy of my hands and feet that escalated to weakness and muscle pain of my legs and arms. After a year of extensive medical appointments at Mayo in Minnesota; Innovis in Fargo; and finally at the University of Minnesota, I was finally just diagnosed with scleroderma with sjogren's and raynauds and they also said at first that I had mixed connective muscle tissue disorder. Now when I went to my appointment last week with my doctor she said the muscle pain is from the scleroderma and that I don't have the connective tissue disorder. I am on a pain patch that I change every three days and take oral pain medications also. The pain patch has been a life saver and before that it was so painful.

I don't know about yours, but mine felt like a rubberband was trying to be pulled inside my legs from the top of my leg down to my ankle. I also have no strength and have a hard time even opening up pill bottles or pop bottles. This I guess is all from scleroderma. I'm wondering also if it gets worse and if we continue to get weaker as I know I have continued to get weaker and have had to hire out someone to even mow my lawn due to the pain and weakness.

I hope this helps, especially if you can check out getting the pain patch. I started out with the 50 mg and then now I'm on the 75 mg. I had increased to 100 mg but found it to be too much and left me like a total zombie.

Take care and like they all say.............stay warm.


#3 janey


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Posted 30 October 2007 - 01:31 PM

I have the same problem but mine is due to an overlap with polymyositis, another connective tissue disease. Polymyositis affects the muscles of and around the trunk. My symptoms were weakness in the legs and neck. I was finding it hard to get up out of a chairs, go up stairs and raise my head off the pillow. Then my arms were get really tired when I washed my hair. If you have such symptoms. you might ask to have your CPK enzymes checked. It's a simple blood test that measures the amount of muscle enzymes in the blood due to inflammation. Normal is less than 200.

My hands are definitely weak as well, so I have lots of Jar opening "tools" in the kitchen to help with that. The best one has two legs and large, strong hands. :D

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
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International Scleroderma Network (ISN)

#4 peanut


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Posted 30 October 2007 - 01:36 PM

Hey Karen,
I do too. Scleroderma causes fatigue and weakness in hands. It also may be a result of meds. I'm on cyclophosphamide which definitely causes fatigue and on top of that I'm doing pulmonary rehab... Sooo tired.

There's this cool electric jar opening all the gals in my support group have. Maybe you should put it on your Santa gift list...


You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 RememberingToSmile


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Posted 30 October 2007 - 02:10 PM

I have the overlap [diffuse sclero with (poly)myositis] with the symptoms that janey describes. It took me by surprise.

Janey is right that they should be measuring your muscle enzymes - CPK (also just CK), but make sure you look to see if they are also measuring your aldolase. My CK has never been measured elevated, but my aldolase goes up and down, depending on the disease activity. I just met a woman who had a CK of 3300 (!)

Hang in there- and take advantage of the special jar openers recommended by occupational therapist / arthritis sites.

Also - what is your scleroderma diagnosis? Diffuse, limited, localized....


#6 KarenL


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Posted 31 October 2007 - 12:32 AM

Wow, I never cease to be amazed at the outpouring of love and support and knowledge on this board!! Thank you all so much. To answer your questions, I have limited systemic scleroderma, the 'old' CREST. I also have celiac disease, coronary arterty disease (three stents in 2 years even though my cholesterol is perfectly low!) I had my colon out 12 years ago due to ulcerative colitis, because of celiac I have osteoporosis in my hips and spine. They've also just discovered that the blood vessels in my abdomen are clogging, and I have severe pain even just from exertion as light as housework! They will be stented as well.

Two years ago I was on the pain medication patch, like Peggy, after becoming immune to pain medication when the tip of my finger fell off due to gangrene.

To be honest, when I hear of yet another connected disease that might be the cause I feel like going back to bed and covering my head. Usually, I'm very active, happy and really upbeat! But with the winter coming I am getting more depressed with each minute we lose in daylight. I feel like they are holding me together with duct tape some days. I wake up with a headache, stiff knees, sore neck and I just think, "oh great here we go again". By the time I'm out of the shower, I'm a lot better and do well until about 4:00 then I get so tired I almost fall asleep driving! It's like a drug, the sleepiness.

I was a girl scout leader, cub scouts, a very outdoorsy science teacher in a Middle School, Now it's all I can do to drag myself to the store somedays. I am not taking the same pleasure in activities I used to. My last year teaching, I took my classes on a hike. I had just had a stent placed two months earlier and was recently diagnosed with sclero. I was about a mile behind everyone else! I barely made it to the summit. Sigh.

I'm only 49, but my body thinks I'm 65. I'm sorry to be negative, usually I'm not, and if any one of you were to need a pep talk I'd be first in line to tell you to get your act together. Today, the thought of polymyositis or anything else just gets me down. Another thing on the list. If you met me, except for the tell-tale red on my face, you'd think I was a really nice happy lady, with no problems at all.

Sigh, (again) I didn't mean to ramble, but you guys understand. Tomorrow I'll be me again.

#7 jefa


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Posted 31 October 2007 - 01:53 AM

Hi, Karen. I was touched by your message today. I think the overwhelming fatigue of our various versions of this disease is probably the hardest to cope with, especially for those who led very active lives, such as yourself. It can be possitively overwhelming. I am going to include the link to our page on emotional adjustment for you and others who may find some days particularly hard to face. Some useful advice here: Emotional Adjustment
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#8 MicheleM


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Posted 31 October 2007 - 03:11 AM

I understand the legs not working, hands not working, I've had days where nothing works!!!! But ... I have learned that the more I push myself to do, the more I can do. I have found that the body is an incredible machine that sometimes needs to be pushed just a little farther than I think I can. I had a doctor tell me to just keep eating right & do as much movement everyday as is tollerated & check back with him later. At the time I thought it was the worst advice as the pain I was in was unbearable and I thought he was insane. But, the words kept ringing through my brain and every day I try to do a little more and it made a big difference. Don't get me wrong, I have lots of days where the sofa/bed is my world & just getting to the potty is a big deal, some days I have to carry my legs up the stairs with my hands, but then I have other times where I can get to the top of the steps and say WOW I didn't have to think about the struggle today! So, just want everyone to remember a positive attitude is more than 1/2 the battle and a little movement on bad days could be a good thing! I've recently started my Tai Chi and it really helps me in a non-aggressive way to get stretched and I find after stretching I'm able to do much more and I mentally feel better I think because I've done something for positive to help me feel better. Anyway, that's the path I'm on today & might change tomorrow after seeing the pulmo guy, or the next day depending on what drugs I might need, but ... I really am working to help me and you feel better (even if only in thought!) Hang in there everyone. We're lucky cause we have each other!
Soft hugs your way,


#9 susie54


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Posted 31 October 2007 - 07:15 AM

Hi Karen,

I would definitely get those CPK levels checked out but if they are OK then it is just a progressive weakness from scleroderma. I have MCTD and in the beginning or the first two years the new pains and manifestations overwhelmed me mainly because I had never experienced anything like the roller coaster of this disease.
Then I decided to fight back and most days I find if I fight the pain and exercise in some capacity that I will feel better in the long run. Somedays are impossible and I have learned not to fight those days but overall I try to stay active and I think it has payed off. I hope you find relief soon. Susie54

#10 Janice


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Posted 08 November 2007 - 11:37 AM

Wow ... this sounds too familiar. At first, my arms and legs didn't work in the mornings ... right after I'd wake up. I'd tell myself to move, but I couldn't for maybe 5-10 minutes afterwards. Nowadays, like 8 months later, I have muscle aches all the time. It's like they just don't work right anymore and I feel like I'm always off balance and have a "spring" in my step.