Guest tearose Posted November 7, 2004 Report Share Posted November 7, 2004 First, this is my personal experience and it may not be what would happen to you. I just want to keep anyone from overdoing and having similar consequences.It was 1998, just after my first TTT, and seven years after showing pots symptoms, that I heard the term POTS from the doc in the Colulmbia Presb. ANS lab. He was the first doctor to explain what they knew then and he along with many suggestions, said to be sure I didn't ever allow myself to become deconditioned. In addition to the many symptoms of dysautonomia,I had trouble opening doors, jars and walking. I felt weak and my legs had trouble with strength.My muscle weakness/wasting was evident but my painful EMG showed normal results. So I decided to push myself...maybe I was a bit out of shape???? I pushed more. I am a tough cookie and at 107 and 5'3 1/2" I was not going to let anyone say I was lazy or out of shape! This pots stuff was NOT going to be blamed on lack of exercise!!! Although my inner voice said the doctors were wrong and my muscles were weak for another reason, I wanted to keep an open mind and try things "their way".I found that I would get worse after exercise and so I learned about exercise intolerance. But how to find the balance? So I pushed a bit more, afterall "no pain, no gain" right?I began to have more pain in my pelvic region. I had trouble digesting food. (no doctor ever talked about slow motility and fermenting food at that point) My gallbladder came out and still I had worsening pain in my pelvic and abdominal areas. Still, I pushed on...In 2002, after more trips in the medical maze, increasing muscle weakness, and now evacuation problems... I finally found a urogynecologist who dx my problem. I was in stage three pelvic organ prolapse! I had pushed my weak muscles so hard that my weak, remaining muscle tissue had torn off my pelvis and colapsed down. My inside muscles would need to be repaired with mesh and tied up again!I had a hellava seven hour surgery, problems with blood pressure, two blood transfusions and let's not go there right now recovery...This is where I learned about peri-bottles. The soothing warm waters externally worked then and work now to help movement down under.What I learned is: Be really careful not to be under OR over active. Don't let the doctors separate symptoms out from POTS!!! Many things are related to the dysautonomia. If I knew then what I know now. I would have pursued exercise with a much slower and careful pace. I would have been much more careful when lifting heavy objects. I would have worked with a physical therapist and nutritionist and occupational therapist to try and rebuild my muscles. Anyone else have muscle weakness/wasting experiences? How are you managing?Best regards, tearose Quote Link to comment Share on other sites More sharing options...
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