ME/CFS and Osteoporosis

12mo ago by MyPatientMatch User

Hi everyone. I recently was diagnosed with five vertebral compression fractures in the lumbar region. (Thats when the vertebrae -the bone- fractures and collapses.) theyre very very painful and Ive lost three inches in height. I Underwent a kyphoplasty which helps restore some of the vertebral height, but because of the stress of the entire procedure, the anesthesia and all the stuff I had to go through just to get medical clearance, ive had yet another decline in functioning. Subsequently diagnosed with severe osteoporosis and all my doctors want me on the osteoporosis medications, but everything Ive read about them and patient reviews said they exacerbate me/cfs and all but one woman chose not to take them. Its not much of a choice but I cannot afford any more declines.

Today I found out I have three more fractures in thoracic region and have to have the kyphoplasty done again next week. The orthopedic surgeon painted a pretty dismal picture of my future as the fractures will continue and my spine will continue to deform, putting severe pressure on my lungs, internal organs and nerves and soon unable to breathe and walk.

I felt the usual anxiety well up as he of course wanted to discuss the global issue meaning living such a sedentary life and being housebound and that I need to come in for physical therapy. Hes a good doctor and kind but he admits he knows nothing about me/cfs and PEM. And when I said the PT would have to be home health, he went along with it but referred to being housebound as a self-fulfilling prophecy, having no idea whatsoever how much that hurt to hear and made me angry as well. As if Im choosing to live my life this way. And again today encouraged me to get out of the house and come in for rigorous physical therapy, which I know (having been sick for over 30 years!) I cannot do and how badly that would affect me.

So...I think Ill ignore my phone (only doctors offices and pharmacy call anyway!) and be with my little dog and watch tv! And pick up dealing with all this tomorrow. Thanks for listening.

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