My condition was so bad that I couldn't leave my house for about 2 years. I couldn't sit on normal furniture. Every little thing was such a struggle. I improved so much to where people can't tell that anything is wrong with me now. I still have a lot of pain from my illnesses, but I am able to function pretty well now.
You might not want to hear this, but one thing that really helped was getting off all of the medication. The only thing I take now is my blood pressure medicine. The medications were making me worse. At first I thought they were helping me, but all they were doing is making my body dependent on them.
Now I try to take all the supplements I can. I don't bother with a multivitamin. I take everything separately. I also try to eat healthy. I make sure I get a lot of protein, vegetables, fruits, nuts, and fiber. I also drink a lot of water. I stay away from white flour, sugar, and aspartame.
I think one thing that helped me was not having anyone around to help me. I was alone most of the day, so I was forced to have to do everything for myself. I was always having to figure out ways to work around my limitations. I would always spend time just trying to push my different muscles as far as they could go. I remember being so happy when I was finally able to lift my arms above shoulder level again.
When I was able to start getting out of the house again, one thing that really helped is working out. Especially using resistance training with weights. Of course I wasn't able to use hardly any weight at first, but I soon was getting stronger and stronger. Using weight machines is so good for muscles and joints. It really helps with the connective tissues too. Also, when I was just resting or watching TV, I would always be trying to move different parts of my body past their limits as much as I could.
I know it might seem like it would be too hard to try to do all of that, but you would be surprised how much better you could get. It wasn't easy for me. It was such a struggle and I had to go through so much pain. You can't let the pain and weakness stop you. You have to fight through it as much as you possibly can. Try to not ask for help with anything. Even if it takes you a lot longer, try to figure out a way to do things yourself. Try to push past your limitations. Push through all the pain. You should gradually see some improvement. Every little bit of improvement will be getting you closer to a more normal and functional life.
Have you ever tried an anti-biotic. I take 500 mg every friday with 8 methrotrexate pills. My cpks are staying around the low 400's. If that is good or bad I don't know. My rheumatogist doesn't seem to get too excited about it. I am 65 and was diagnosed in 2008 but I probably had it for 2-3 years before. I took prednisone when I was first diagnosed but haven't taken it in over 2yrs. I'm diabetic and it does havoc on my sugar levels. My cpk's were 6900 when I was diagnosed and the Dr at Vanderbilt could not believe that I wasn't in a wheelchair. You have had PM a lot longer than me-do you have problems with your throat. I dread that I would get that problem.
I am currently doing the antibiotic treatment. I have improve and i feel great that i am. Although your cpk is 400 is still a little high. The normal number is suppose to be 0-225. I am hoping that my number be around that when i see my doctor again. Last time i check it was 1400. I've come a long way when i was diagnosed it was over 10,000 i guess i was lucky i was not in a wheelchair. Before i started the antibiotic my number was 5-6,000. That was last year this time. How long have you been taking methotrexate? I still take methotrexate and i take 5 mg of prednisone a day. If my numbers come down some more i will reduce the methotrexate.
I have been taking methotrexate for almost 2 1/2 years. Eight 2.5 mg every friday. My reumatologist would not discuss taking an anti-biotic but my primary Dr. put me on it. I have been on the antibiotic for 4 months. My numbers have gone down from 470 to around 433. I can't wait to have them checked again in August. I wish my primary Dr would handle this and I wouldn't have to go to a reumatologist.
I can agree with you. Its frustrating to go to your rheumatologist an you n=know that they do not support th A/P treatment. As long as you are improving its ok. I am just glad i am getting better and i know that antibiotic is the main reason that i am getting better.
The following user gives a hug of support to shar621: waddles (07-01-2011)