Posted 30 October 2007 - 09:51 AM
Posted 30 October 2007 - 01:29 PM
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.
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.
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Posted 30 October 2007 - 01:36 PM
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...
Posted 30 October 2007 - 02:10 PM
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....
Posted 31 October 2007 - 12:32 AM
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.
Posted 31 October 2007 - 01:53 AM
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Posted 31 October 2007 - 03:11 AM
Posted 31 October 2007 - 07:15 AM
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
Posted 08 November 2007 - 11:37 AM