Home Forums General Discussion Scleroderma Feet Issues

This topic contains 5 replies, has 3 voices, and was last updated by  enzed 2 years, 7 months ago.

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  • #300459
    enzed
    Participant

    I was searching for information about why people with SD experience foot issues / painful feet. This was all I found. It was on the MedPub website. Does anyone have any information about the blood tests for muscle enzymes? Anyone had the tests? Any treatment outcomes from the testing? I once read somewhere that SD causes foot tendons to shrink, making it painful to walk. Does anyone have any information about that?

    “Myositis (Muscle Inflammation)
    The skin tightening may irritate the underlying muscles and tendons below the skin, causing myositis (inflammatory muscle disease), which often goes along with scleroderma. When this happens, a blood test will show elevation of muscle enzymes. Repeated blood tests for detection of muscle enzymes should be performedat your doctors discretion”.

    #313858
    Lynne G.SD
    Participant

    Hi There;
    I am just wondering if you had this problem before changing to Doxy.I have a lot of blue spots and was vain enough to switch and the darned SD was making a comeback.Needless to say I switched back and the problem was solved.
    I often have sore burning feet and the burning can radiate right up to my knees.I lost a lot of padding on my sole and my job requires standing most of the time and that is what causes the burning for me.A quick nap with my feet up makes it a lot better.
    Ligaments can shrink for the SD and just from getting older.Having been a ballet dancer I just do a lot of muscle/tendon exercises to prevent it from happening.The easiest one is done when going up or down the stairs.Going up put the ball of your foot close to the edge of the step and drop your heels as much as you can.Put the feet flat of the step and raise up your body very tightly so thatonly the tips of your toes are on the stairs.Pretend there is a wire attached to your head that is pulling you up.All muscles from head to toe will be stretched.Try to make your tummy button touch your spine.
    Going down the stairs.Feet flat on the step and lower your bum to touch the step above while keeping your spine perfectly straight.By the time you are all the way down and on the floor,lower your but one last time to the point it touches your heels then pull yourself up onto the balls of your feet and then rise up completely to your utmost height with every muscle drawn tight.After that you can go collapse of the sofa but you have just about stretched every muscle and ligament in your body.
    Have you seen any videos called Classical Stretch? These are fantastic and easy on the body excercises resembling modern dance

    #313859
    enzed
    Participant

    Hi Lynne, These additional bits of information I have found indicate that exercise is the wrong response. The skin tightening in my feet has been there for many years, it predates my AP, so has nothing to do with different antibiotics either. To me it looks like a chain reaction: skin tightening – irritated muscles – irritated tendons – deep tissue fibrosis – causing inflammatory muscle disease.

    “One of the most intense sources of pain in scleroderma is the deep tissue fibrosis that causes joint contractures and tendon friction rubs in patients with the diffuse form of the disease. The traditional anti-inflammatory medications (NSAID and corticosteroids) are not particularly effective and low dose narcotics may be necessary.”

    “Myositis (Muscle Inflammation)
    The skin tightening may irritate the underlying muscles and tendons below the skin, causing myositis (inflammatory muscle disease), which often goes along with scleroderma. When this happens, a blood test will show elevation of muscle enzymes. Repeated blood tests for detection of muscle enzymes should be performed at your doctors discretion.

    Once myositis is diagnosed, its very important to quit exercising, since repeated use of muscles will worsen the inflammation.” (from Sclero.org)

    #313860
    enzed
    Participant

    From Wikipedia, the free encyclopedia
    “Myositis is a general term for inflammation of the muscles. Many such conditions are considered likely to be caused by autoimmune conditions, rather than directly due to infection[1] (although autoimmune conditions can be activated or exacerbated by infections.) It is also a documented side effect of the lipid-lowering drugs statins and fibrates.
    Elevation of creatine kinase in blood is indicative of myositis.”

    #313861
    richie
    Participant

    Hi No publication has ever mentioned this-but it is very common with folks with scleroderma —-save your money for more tests –the answer is very simple –folks with scleroderma for some strange reason lose the padding on bottom of feet –Solution ??????? Padded orthotics –worked well for me —
    richie

    #313862
    enzed
    Participant

    @richie wrote:

    Hi No publication has ever mentioned this-but it is very common with folks with scleroderma —-save your money for more tests –the answer is very simple –folks with scleroderma for some strange reason lose the padding on bottom of feet –Solution ??????? Padded orthotics –worked well for me —
    richie

    Richie, I’ve had to wear well padded sandals or very soft, well padded boots for years now but have always wondered what causes this strange effect on the feet of people with SD. As you say, it happens “for some strange reason”

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