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Living with OPMD

Painful upper legs


#1

jonana
8 posts
April 22, 2015 2:27 PM MDT

What do you do for painful upper legs ?

purplebutterfly
3 posts
April 25, 2015 8:24 AM MDT

I have found that a warm bath helps and also massage. I have rest less leg and after starting meds for it that has also helped.

Jersey Girl
65 posts
April 25, 2015 9:24 AM MDT

I am most fortunate in that I do not suffer from pain in my legs.

However, I have chronic neck pain for a poorly healed laminectomy incision and my doctor has prescribed lydocaine patches. You can also buy the large Salonpas patches across the counter. They really work!

You can buy them at any drug store, but I get them on Amazon.com.

JG

Lbeeps
1 posts
April 25, 2015 10:59 AM MDT

It is more my hips that give me trouble… I get cortazone shots in the hip…I can get 4 a year. It is not a fix but, does help with pain. I have a jacuzzi tub which is also very helpful!!!

jonana
8 posts
April 25, 2015 3:03 PM MDT

Has physical therapy helped anyone? I finally got an appointment with an MDA clinic and hope it will address some of my issues ! Want to be proactive with this disease so all information I can glean is helpful ! Thank you

Jersey Girl
65 posts
April 26, 2015 8:09 AM MDT

Physical Therapy isn’t something that I really “need” for OPMD. I do go to a PT for chronic neck pain.

I bought a Theracane online, which is handy for unreachable trigger points (where muscles spasm) and cause pain. It was $35 and I got it on Amazon.

JG

purplebutterfly
3 posts
April 26, 2015 8:17 AM MDT

I go to aqua therapy for lupus and arthritis. The warm water and gentle movements help me feel better and keep my joints and muscles moving better.

Jersey Girl
65 posts
April 26, 2015 2:21 PM MDT

Ooooooh, I absolutely adore aqua therapy!

I can’t go during the cold weather months, however. The only pool less than a hour’s drive from my home will not heat the locker room above 55 degrees to avoid mold. That means that in the Winter months you are climbing out of a heated pool and walking into a veritable chill box to dry off and get dressed. Because of my OPMD and leg weakness, I can’t just throw on a pair of jeans and run out the door. It takes sitting down and some time to get my clothes on, and it is so uncomfortably cold that I just avoid it altogether when it is extremely cold outside.

JG


#2

I was told, that physical therapy (for me) was a bad idea. The higher the CK rises, the more pain, the more muscle loss. I do have pain in my hips and knees. Part of the problem is for the hips, is basically squareish joints in a round hole. The knees hurt often, especially with the barometric pressure goes up. There is some fibro pain as well. After my local physician left, I have been trying to find another doctor with half the sense she had in town. The current male doctor, no matter how many times I tell him my shoulders hurt, clamps down on my left side. It makes me wince every time. It has been 3 times already. Some days just touching my knees hurt and I don’t want my wife to touch them.

I have fantasies of taking the new doctor by his own sensitive area and twist if he continues slapping and clamping on my shoulder.