I use a heating blanket and a heavy blanket for my legs, it’s the only thing that calms my legs down. But am having consistent difficulty swallowing. Diagnosed with Myositis due to being hospitalized and CK levels as high as my Rheumatologist has ever seen. He feared necrotizing myositis but it all calmed down. But no muscle biopsy, seeing him 2/21/21, going to ask for biopsy. Can’t take co consistently swollen thigh muscle, dark or red urine, with blood clots. Ugh! Went to Urgent care, they said, “you are fine”???? He saw this and said do not go there again, with this issue, call my office directly. He’s a good Rheumatologist as I have had SLE (Lupus, most of my life). Hoping for the best, as usual, but trying to be my own advocate. Myositis is painful and makes me oh so weary.
I was diagnosed about 2 years ago with IBM. I now use a walker to get around my house. I was using a cane but keep falling. I'm a female 69 years old. I started having symptoms around 2012. Any sharing with me would be great. I feel so alone in this. Thank you
I Have A Cane And I Have Frequent Falls. I’ve Had These Symptoms Since My Early 40’s. I Had A Extremely Difficult Time Getting Social Security. My Brain & My Spine Affects My Entire Body.
The worst thing for me was feeling that my future was cancelled; I no longer had future, just happy past. I can relate to that piano playing, because I am losing ability to play guitar as my left hand is getting weaker, or at least, was getting. I have big boat, few cars, couple of motorcycles etc, so my life was supposed to be happy from now on. I can still use them, but the uncertainty is torturing me, can I still use them next summer? I designed a treatment for myself. Instead of taking daily Prednisolone, I only take a big dose once a week, saturday morning 20-25 pills of it, 5mg a pill. It brought the lab results to normal, and allthough it does not bring back the destroyed muscles (should have started earlier...), it has stopped the IBM, no change in the last year or so. I also take creatine supplement and HMB, and that has helped other, compensating muscles. Once a week dose does not cause muscle- and bone loss, and boosts the body's own repair system.Daily doses shut it off. It worked for me.
DONALD1951 yes, progressive, i’ve had it for 10 years, just bought a hospital bed, have a lift toilet, or i would have been in a care home 2 years ago, now getting fitted out for a lift wheelchair....
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Today I was diagnosed with I IB M. . I was loosing my mind looking for Answers I am a retired nurse too.
I use a heating blanket and a heavy blanket for my legs, it’s the only thing that calms my legs down. But am having consistent difficulty swallowing. Diagnosed with Myositis due to being hospitalized and CK levels as high as my Rheumatologist has ever seen. He feared necrotizing myositis but it all calmed down. But no muscle biopsy, seeing him 2/21/21, going to ask for biopsy. Can’t take co consistently swollen thigh muscle, dark or red urine, with blood clots. Ugh! Went to Urgent care, they said, “you are fine”???? He saw this and said do not go there again, with this issue, call my office directly. He’s a good Rheumatologist as I have had SLE (Lupus, most of my life). Hoping for the best, as usual, but trying to be my own advocate. Myositis is painful and makes me oh so weary.
Thank you for sharing your routine. It really helps to see how others are managing with IBM
Thank you for sharing. I've been through it and I think you shouldn't worry. God bless you. :)
I was diagnosed about 2 years ago with IBM. I now use a walker to get around my house. I was using a cane but keep falling. I'm a female 69 years old. I started having symptoms around 2012. Any sharing with me would be great. I feel so alone in this. Thank you
I Have A Cane And I Have Frequent Falls. I’ve Had These Symptoms Since My Early 40’s. I Had A Extremely Difficult Time Getting Social Security. My Brain & My Spine Affects My Entire Body.
The worst thing for me was feeling that my future was cancelled; I no longer had future, just happy past. I can relate to that piano playing, because I am losing ability to play guitar as my left hand is getting weaker, or at least, was getting. I have big boat, few cars, couple of motorcycles etc, so my life was supposed to be happy from now on. I can still use them, but the uncertainty is torturing me, can I still use them next summer?
I designed a treatment for myself. Instead of taking daily Prednisolone, I only take a big dose once a week, saturday morning 20-25 pills of it, 5mg a pill. It brought the lab results to normal, and allthough it does not bring back the destroyed muscles (should have started earlier...), it has stopped the IBM, no change in the last year or so. I also take creatine supplement and HMB, and that has helped other, compensating muscles. Once a week dose does not cause muscle- and bone loss, and boosts the body's own repair system.Daily doses shut it off.
It worked for me.
How do the doctors diagnose this condition and does IBM occur mostly in the senior population ? Thank you.
Is this a progressive disease typically? Do many end up in a wheel chair or a walker.
Yes it is. Very rare. Not much research on it. Most eventually end up in a wheelchair. Hope for a cure soon. 😎
DONALD1951 yes, progressive, i’ve had it for 10 years, just bought a hospital bed, have a lift toilet, or i would have been in a care home 2 years ago, now getting fitted out for a lift wheelchair....