I am very confused. In the past few weeks, I developed pan in the my hips--both of them. Also my knees hurt as well as a spot in my right upper arm and my right big toe (which also has a bunion on it.) My GP said this is bursitis which is directly related to my ataxia because of my strange small-stepped, forward-tilting gait. However my neuro discounted that and said I should see a rheumatologist or an orthopedist. In the meantime, I have done nothing. The pain is pronounced when I move even after 5 minutes of stillness. (I feel as if I am 100 years old which I am far from!!!) The pain then abates and then revisits if I go on a long walk My ataxia is believed to be induced by an auto-immune condition. I have determinedly and probably stupidly refused to walk with a cane or any identifying aide but the end of this vanity is coming.
In the a.m., the pain abates because I do exercises in bed. Has anyone experienced this?
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Right. Thanks for answering. Unlike you, I can sit or lie for hours. This makes my rising into an upright position and walking rather painful and tentative. After a few steps I can walk "normally." But these aches return if I walk too much. In NYC, a PT told me that over-walking is also no good. He said ten blocks a day, max. Nothing heroic.
From what I can glean from "experts," the small steps and tilting forward, can be "helped" to some degree by using mind control, if possible. Like think before you do.
A year or so ago I was very much troubled by pain around my hip joints, especially my left hip. Also I had tightness running down the outside of my thigh (iliotibial band or something similarly named) which was reacting to excessive stress due to my irregular gait. Like yourself I was reluctant to use a walking stick, but have now accepted it is a 'must'.
Back to the hip pain. Initially I saw an osteopath, with no improvement. I became more and more worried, so consulted my GP and he diagnosed bursitis of the hip. He prescribed Ibuprofen Gel Maximum Strength, as I can't take ibuprofen orally. When I had a further appointment with the neurologist, he acknowledged that my way of walking due to my ataxia could be responsible. As with you, the pain worsened after I'd been walking for 5 minutes or so.
The gel has helped a lot and I rarely use it at the moment, though I know the problem is still lurking there. I am just trying to be more cautious and, as I have said, always use my stick when out. The wobbliness and unsteadiness is bad enough without additional pain.
I hope this helps a bit and you do find something to ease the problem.
With regards to walking with a stick I found it a great relief. I feel much more secure after a few embarrassing falls in public places some years ago. Also people used to avoid me and not help me at all before I used the stick as they thought I was drunk or on drugs. They would even cross the road to avoid me. There are many pretty walking sticks out there now. I like to co-ordinate them with my outfit. I think why not, we co-ordinate shoes and handbags so why not our walking sticks???
You are right, of course. But the stick has been my bugaboo. A PT in NYC told me that he gets this from alot of patients, who can't get over the "hump," and believe that the stick or cane "marks" them. He told me that besides being unsafe and unwise, it actually makes me work harder. I agree w him. And I agree with you.
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