I am new here and find it impossible to navigate this forum. I can't even change my password.
I'm Verleen from upstate NY. I have post polio syndrome that affects my entire body, but the most affected is my back with muscle weakness and pain. In March, I had triple by-pass surgery that has given me one serious complication after another. My back and left lung are very problematic for me. Both are hindering my recovery. The doctors, both thoracic and pulmonary, want me to go into rehab. Hoever, exercises require that I have a strong functioning back. They do not have a back exercise nor do they seem able to incorporate one into the "canned" program. Their response is to write me off as refusing to to the rehab. I never refused anything. I just wanted them to modify it so that my back COULD do it. I use a power wheelchair and yet, they still wanted me to walk a 30 minute stretch. My back collapses after a quick trip to go potty.
After the surgery, my left lung got pleural effusion. After draining it, one-third of the lung still did not fill with air. They said my diagphram is too weak to draw up the air. They said there is nothing they can do. Isn't there some exercises to strengthen the diaphram? The Rehab hospital in Schenectady didn't have any to offer me.
The only services I can find are the "canned" ones for the common lucrative procedures that are done.
To breathe and sleep, I have to sleep, sitting up in a recliner. I have sleep apnea which they can't assess and treat until I'm healed of all the surgical problems. So I'm not sleeping at night because I stop breathing and afraid the time will come when I won't wake up. So they are treating the anxiety with ativan. That way, if I should stop breathing, I won't mind as much.
I have chest pain and the incision is slowly healing. I'm taking longer than most people to heal, says the surgeon. He has refused to prescribe pain killers and basically has signed off all my care even though I'm still not healed from the surgery itself. Thank god, my primary is willing to prescribe the pain meds that I can take every 4 hours. Because of fear of getting more down the road, I have been very conservative and taking just one a day in the evening so I can fall asleep without pain. My primary just gave me a lecture about not holding back on the pain meds. She says when I have chest pain, my body takes little, shallow breaths and my lungs will never fill up. The result is I have been making my breathing and left lung worse by holding off on the pain meds. I just realized I went on and on. I'm sorry. I guess I needed to vent my frustrations.
Has anyone had back weakness/pain due to polio? What did you do for it? Likewise with the diaphram weakness? I would appreciate any help. thank you, Verleen