There has been some interesting discussion in one of my Facebook support groups about reconditioning as related to POTS, and theories on why so many athletes or highly athletic people seem to fall prey to this debilitating disease.
I was active and athletic before and after I became acute. Born with EDS and Dysautonomia, my symptoms were mostly manageable until a severe herniation at L5/S1 left me with permanent nerve damage and partial paralysis in my right calf/ankle/foot. Because of that damage, there is nothing I can do to improve the ‘second heart’ muscle group responsible for assisting blood return.
Sadly, I am left with atrophy and am not able to even lift my right heel off the floor like you do when you stand on your toes, or like when you push forward to walk. So my POTS will probably remain somewhat severe no matter what I do, though I still keep trying anyway. I am losing strength in my legs despite exercises because of spinal deterioration and progressive nerve damage.
This puts me in a more unusual position, I realize, than most POTS patients. Having said that, I should amend with the thought that more people may have a similar progression than people realize, including the patients themselves. Since many potsies also have EDS, and EDS often causes degenerative disc disease, I think leg denervation to one degree or another is a participant more of the time than people understand. A person can have mild denervation without realizing that fact, and I have seen many complaints of neuropathy that could be consistent with my theory.
So I would advise any POTS patient to verify whether or not they have EDS and/or possible spine issues that could co tribute to their dysautonomic decline. It never hurts to check into these things.
Filed under: Dysautonomia Tagged: awareness, chronic illness, chronic pain, coping, diagnosis, disability, dysautonomia, EDS, exercise intolerance, facebook, hypermobility, invisible illness, pins and needles, POTS, symptoms, theories, therapy
