Leg weakness and pain, advice

can I ask you how your leg issues evolved?

I have had problems with mine for years now, start getting bad, then get better.
when they used to be bad, it would last for a month or two then get better for a long period. now I find that they are bad most of the time. excessive weakness and pain.
as this is such a rare condition, there is no one else I can ask if my symptoms are normal for this delightful condition

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This sounds similar to what my husband experienced.

I went through this. It hit hard, then let up briefly, and then came on strong and stayed there. My movement disorder specialist gave me a four wheel walker, which has been a G-d send. It balances my legs for distance traveling, and if I get tired, I can use it as a chair. And I agree with the pain. I have found that hydrocodone helps with the pain. I get 30 325 tablets a month. I find some days that is not quite enough, after strenuous activities like laundry. However, I was warned that I should slow myself down (something I was never taught to do from 13 on), but the more you exert yourself, the higher the CK levels rise. When they rise they are muscle that is dying. It does not come back. As a stop gap, I have been put on mega doses of Testosterone. I have always been a nice, helpful afiable guy. That stuff turns me into a raging jerk. I don’t like it. I don’t like growing more hair and then having acne in it. However, I was told that would at least slow down the degeneration longer.

Weakness started approx. 3 years after eyelid drooping. The weakness, however was centralized in the pelvic girdle, and started with a “myopathic” gait - a wide-stanced waddle. I required a cane for stability. After 4 months of brutal PT at Shirley Ryan Ability Lab (in Chicago burbs) which focused on CORE strengthening, I am able to walk with a normal gait, and without a cane! I have to walk 20 minutes on treadmill every other day - forwards, backwards, and side-stepping. Also numerous CORE exercises: bridges, planks, and standing leg adductions. Pain? You bet! It is centered in the glutes and hips. It is a soreness that never goes away. There is sometimes wicked aches my quads - nature’s way of saying “enough!” I treat with Tylenol and a nap.
Pain and soreness are always there. I just look at it as the price for my mobility.

I am wondering about this statement. Do you mean the more I exert my muscles, the more they die and they do not come back? A “normal” person’s muscles recover to handle the new load/workout.

The problem I believe that we are facing is that the muscles do not recover and that is the constant pain that we feel.

I was thinking the harder I push myself, the more I can prolong the onset of this disability. I am worried now that I am exacerbating it.