Muscle Pain/weakness in legs

I have just been dx with systemic scleroderma (finally - a diagnosis....was a very long process to get here....) Anyway, the biggest problem I'm having is difficulty walking. It is difficult for me to "pick up" the front of my feet to walk. The pain radiates all the way up the front of my shins...both legs..... At times, it's almost like I have to walk "flat footed" - not lifting up the front of my feet. Here's what's really odd to me...2 weeks ago, when I was dx - she started me on prednisone (10 mg/day) - within 24 hours I was out walking for 2 hours that day...no pain. I was able to do this again (I LOVE to walk) for the next 4 days...and then...the bottom dropped out again...still on the prednisone..but pain and weaknees in "shins" and front of ankles is back. My walks the last 2 nights have been approx. 8 mins long...just can't do it.... Does anyone have any 'thoughts' on this type of pain/weakness??? thanks!!! Di

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It is part of SD. Somedays are better than others.

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I had muscle weakness in my quadriceps muscles abd due to this, I also had weakness that caused me to fall pn one occasion. You can read my posts on this site for the details on what I did to regain my health. I wish you the best.

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Thank you both for your replies....

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I've read research that indicates that the muscles of people with scleroderma metabolize creatine differently than normal muscles. Since our leg muscles are some of our largest ones, it makes sense I guess that we would feel the pain and stiffness most there. I have the same problem. When I am having a flareup, even a short walk makes my muscles feel like I've run a marathon.

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Whatever you do; I advise that you force yourself to do something everyday, walk as far as you're able, do leg raises off the edge of your bed. Don't allow yourself to become lazy; it will help with the mental stress of this thing. I was dx sys. scl., CREST, PAH, CHF, and ILD in 2008 and being a former college football player with degrees in Psych, and Phys. Ed. I've determined that if I do SOMETHING even on the bad days when my breathing is rough going 20 steps; that it staves off the depression and helplessness that the condition can set forth.

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Thanks Sid and CoolhandsLuke (love the name... :) )

This is something I will be asking my Dr. at my next visit...but aside from the pain...does anyone know if you can do any permanent "damage" to your muscles, joints etc...if you "push through" the extreme pain and fatigue when walking, lifting weights etc.???

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I have been taking methotrexate , it helps with muscle weakness. I had those same symptons also, meth. has helped.

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If you are having that much weakness and it has been that much of a decline in a short time, I would let the rheum know now. Could be that you are having an acute inflammation of the muscles, i.e. myositis which may require higher doses of prednisone for a while. This is what happened to me early in the disease which I have had for 19 years. As far as excercising goes, I have benefitted from a regular practice of yoga, biking and walking. I tend to push too hard sometimes and usually find out the next day or 2 by increased muscle soreness and fatigue. Every day is different, and I try to do something every day, but with perseverence you too will become the expert on your own level of optimal excercise tolerance (which may change from day to day). My pulmonologist gave me instructions not to exceed a certain heart rate and if I stick to that it helps. Also, I take care to warm up each time and a rest day to allow for recovery is not a bad idea once in a while.
Hang in there. I wish you strength.

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Thanks to all of your for your helpful comments...they are VERY much appreciated !! My best ....to you all !!!

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I have permanent damage but it was due to a polymyositis flare up. My doctor said I could try weight training to stengthen my legs. Bike riding just made me sore and I never seemed to improve from it-- just have some days that are sore and some better. I use SalonPas pain patches and Activon quite a bit.

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I have pain in my calf muscles and I had to buy a walker. With the walker I can walk more than 3 miles. I am also not afraid of falling. Ever since I got diagnosed with Systemic Scleroderma, I sometimes fall, just because I am clumsy and I feel weakened. I also weight train. I don't let minor pains bother me, if I have to use a walker - then that is okay with me.

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8ajunebug - if you don't mind me asking...how did you (or your Dr.) "know" that you have permanent damage? The pain I have is only when I'm walking...feels like very severe shin splints...but goes lower...to the fronts of my ankles. Once I stop walking...the pain goes away....for the most part...aside form a little "achiness"....

JIJ - 3 miles - that's fantastic - I admire your determination - keep it up - it inspires others...like ME !!

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I had an EMG study done and 7 years later I switched doctors and she said my upper theighs do not flex deep. She thinks the deep muscles gave atrophied and the damage was probably from the attack years ago. However I have since read that many scleroderma patients experience muscle weakness without polymyositis. I don't let it slow me down--I have a full time job and three kids!

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When I told my Rheumy that I had pain and fatigue and that it affected my abilities to take care of my family and home, she promptly diagnosed me with fibromyalgia and talked about central sensitization. I was upset at first, thinking that I had read so many posts here from people with limited systemic scleroderma that had the same kinds of aches/pain and fatigue that I was going through. I think it is part of the disease, but Dr.s are quick to use fibromyalgia as a "catch all" diagnosis for symptoms they can't understand. I also have pain and weakness in my legs, and walking was always something I was able to do a lot before this happened. If you push through it and have worse pain and fatigue later, then I would advise that you "listen to your body". You might need to have some further lab work to see if you have active inflammation and, if so, then it could be damaging your muscles. Best to talk about it with your Dr. One thing we all seem to share is that there are good days and bad. Take care and please let us know how you're doing. There are lots of caring people here.

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I stopped my walking altogether and boy do I regret that. I thought it had to be all or nothing. I read cubby's idea and it works. Just a little a day. Now I walk on my treadmill 20 minutes every day and no more even if it is a good day so I can do it every day.

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This is not unusual for this to happen with scleroderma...I was dx in the fall of 2008 with systemic/diffuse scleroderma and found out I cannot take prednisone. The solution I came up with was to start with floor exercises, toning, strengthening and then after about 4 mths started to include an eliptical. I exercise twice a day everday and I am still walking and doing many things I like to do...but when I started it hurt really bad and it was hard for the first 6mths, but I am glad I have continued. My feet have lost much of the padding due to the sd and that was really painful,but my foot dr. was able to get some inserts made for me and that has also made a lot of difference. I really would recommend starting physical therapy and go from there...your dr. maybe able to help start this process for you.
becjo

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Thank you all for your GREAT information and suggestions !!! Dianne

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I struggle to climb stairs and walk up hills, but I force my self to climb one flight of stairs every day. I also walk long distances at work (our building is huge). Somedays I dont feel a thing and other days it feels like I have run a marathon the day before. The rheumotoligist has prescribed anti-inflammotaries. It works most of the time, although I cant take to much of it as a side affect is that it gives you stomach problems. And when my husband and I go for walks with the dogs and I get to tired, he just has to pull me along....hahahaha

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I have been on Prednisone and cell cept since August. I have been having the shin pain, but thought maybe it was a side effect of the drugs. It's mainly one shin, and at times it's so bad I can't bear weight. A pain pill gets it to settle down and I keep on moving. I did get to the gym today for some exercise bike and stretching, that felt ok with my shins. It's a little better this week, and I am hoping for even better next week! I am looking into yoga and stretching with a trainer. I feel like all my joints are tightening. In June I was working out 3 X a week with a trainer and 2 X by myself.... how quickly things change!

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Hi Diane;
Did you know that a lot of pain is caused by lack of ATP.When I was at my worst I could hardly walk to the end of my driveway without the feeling of "hitting the wall"D-Ribose and magnesium helped me a lot.I used to take it when I was a ballet dancer and every muscle was screaming at the end of a performance.Took it when my SD was bad and now take it at the end of a day of teaching ballet as I sure don't have the endurance I had 40 years ago.
Here is a bit more info from one of my files.

http://www.prohealth.com/library/showarticle.cfm?libid=3809

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