You are such an incouragement! I hope that I can do as well as you. I am waiting to start my meds. I am hoping to be able to exercise soon.,
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how long should you exercise a day, what vitamins should you take and what do you take to keep your immune system strong. thank you
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how much do you really have to exercise with this disease. without over doing it. I dont know if i am doin enough. I do 20 min of tai chi in morning along with 20-30 stretches for my legs and hips. then in afternoon, i do quad and cafl stretches along with a few 3 lbs weight for my arm , but only one set of 10 ea. then late afternoon i walk on treadmill 1 1/2 mile to 1/3/4 mile in a 1/2 hour. then 5 minutes on stationary bike . then few stretches to cool down. and around 6 :30 pm i do hip stretches agin before getting comfy for night. any info would help
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Had Pm in 1980, was cured inside of a year thru Remission? Youth? Meds?Prayers.
I got it back in 2001 to present date.I was in hospital for a month 4 years ago and all tests showed maybe acute Pm. Went in in a wheelchair and came out in a wheelchair. I could not stand up or walk with tons of physical and occupational therapy. They gave me a transfer board to get from wheelchair to toilet,couch,bed.
Months later, all of sudden i stood up and started to walk with cain up to 90 ft.
But i am still in chair and do not use transfer board any more. I am going to be 74 years old. On meds and prayers.
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I have dermatomyositis polymyositis an scleroderma sclerosis diagnosed 2 years ago with a biopsy by UCSFI had a skin rash for 2 years maybe more never itch then one day it did all the sudden I lost ability barely walk get up off the toilet was impossible climbing stairs was like looking at Mount Everestthen I started choking on even little pills I got dysphagia it attacked my esophageal muscles it attacked almost all my muscles it got to the point I was almost paralyzed I couldn't even turn over in bed at one point I tried I could not move my neck and use my arms and almost suffocated in my pillowat that point I really want to just leave the earth my life behind I was very physical and this it means very hard all of the diseases but they put me on prednisone 60 milligrams then they have to taper me off quickly because I got a bone marrow death and both femurs so now I'm only on 10 milligram daily and I was on methotrexate but now I do not want to do it anymore for the last 15 weeks because in September at 2013 I had infusions of rituxan and I start my second round this month March 2014 amazing my mobility is very good and there are some things that are still a challenge but I can help get dressed button zip zipper people think like I did no big deal but when you hit with this you don't take anything for granted so when you can finally do the simplest things in life after 2 years of not being able to do barely anything and I am self employed it was so frustrating and you're so tired and chemo made me so fatigued the methotrexate. Rituxan is also chemo but I had no side effects except boredom sitting in the chair for hours. but I will say is worth it god bless you I wish you the best feel free to contact me. Kimberly
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Hi,I am 74 going on 75 years old.I was diagnosed Feb 2011,had symptoms Sept 2010 ,dysphagia,& muscle wasteing .I feel that I have been fairly lucky in as much as I have not had any pain that I consider part of the disease.I was weak for about the first 6 months ,which slowed me down for a bit but we had started a big renovation on our house so had to keep going.We have done 95% of the work ourselves,which has helped build up my upper body but am getting weaker in upper legs ,not much thigh muscle.I still climb ladders & scaffolding ,carefully(the Professors that I see every 3 months frown on that but shake their heads & smile ,because they know if I can do it ,I am going to try to do it.)I take 25 mg Prednisone (increased from 7.5 mg a month ago to try & help with leg weakness)2000mg of Mycophenolate which replaced 75 mg of Imuran that I was taking.I have an Octogam infusion every 4 weeks at nearest hospital ,takes about 3 hours.None of my meds seem to affect me adversely ,which is good.I have faith in friends ,family & my medical team .I used to be a believer but not for a very long time ,but I wish you well with your prayers.
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Please do not give up on believing! One day we will know why we have suffered. We do not know how this disease may have changed others. It may have given understanding to a family member or made them a more caring person God uses us for many things that we are unaware of. Thank you for caring enough to write. You are a very caring person to share
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Can you tell me what was the path that his illness took him on? Some people have been in wheel chairs, some have recoverd for several years, then have setbacks. How has his recovery been?
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Hi there, my husband passed away with polymyositis after being diagnosed 6 years prior to his passing. I do not know what the life expectancy is but, I do think that the medications he was on had a lot to do with his organs felling on him. they were very strong and not good for him. The doctors told us at the time of his diagnoses that the disease was not curable but it could be controlled with meds. The meds made him worse. he told me before he passed away that he could feel them poisoning his system.
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That has been my question. I was diagnosed with mild to moderate polymyositis. I feel sorry for those that are worst. I have no energy, I cannot climb stairs, terrible neck and shoulder tight muscles. Hips to knees pain and weakness. I am on 15mg. Of methotrexate at the moment.
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Hello, I have been diagnoised with Polymyositis just a couple months ago. I had back surgery and about two weeks after my surgery I couldn't walk I couldn't do anything for myself. After a biopsy we learned I have this decease. I am on steroids, with losts of praying I am doing very well. My enzyne levels are back to normal and I about about to go back to work. I believe in GOD that is who I asked to help me. I believe that prayer does more than any Doctor can do. I asked God to heal me and so far I am doing better than the adverage person. Good Luck to you as well.
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My mother-in-law was diagnosed with polymyositis around 5 years ago, she went to several doctors in several states. She was finally diagnosed after feeling like they could not figure out what was wrong her. She would be working for 6 months straight and then be so sick she could not move for the other six months of the year. It went back and forth until her death this past year. Her lungs started continuously filling with fluid and that is what put her in the hospital in her final days. She was 55.
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The drugs I take courses me to gain weight, and I cannot run or jump without falling. As a matter of fact by me not being able to do those thing that how I notices there was a problem. I have living with this for 10 years now. And yes exercise is very important element in keeping your body from braking down.
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