Dearest teachermom,

the phrase: "my body hates me" says so much.

Learning to love and accept yourself exactly as you are will go a long way towards relieving some of your stress.

I know that is so difficult when our bodies are not as we had hoped and expected.

And yet, care and kindness towards yourself are important with any chronic condition.

Hugs, ElaineD

Thank you. You are absolutely right. I just mentally don't feel ready to give up my physical activities yet. I can't because it causes autonomic symptoms to worsen. I feel very lucky because other than the first 6 months after diagnosis I slowly felt better and was able to move on. The day I wrote that post I was so upset thinking about the possibility of having a club foot and needing a walker. I have seen a specialist at a teaching hospital about the tendon and he has made me feel so much better. I am still going to run a little, but I am starting to use a recumbent bike and a rowing machine. Both of these have been much kinder to my body. I ache all over most days, but I keep hoping that I am just experiencing a flare and I will get back to my new normal soon.

One of our regular posters here had a DNA test and found this mutation, discussed in this link, and my follow up answer:

https://www.neurotalk.org/1238782-post301.html

While this appears not to be very common, she is the first here to get definitive proof with that test. Don't expect a doctor to know much about this as it is still new information.

People here with muscle difficulties should also get their DNA tested to see if some metabolic genetic error is present which may be causing symptoms. This particular Biotin error, presents as muscular weakness and some acidosis from Lactic acid build up in the muscle cells. Janieg is heterozygous for this so has some limited function. If a person is homozygous (missing both copies of the gene) they manifest symptoms, as infants and young children. Adults with one missing gene, only, show symptoms in adulthood sporatically and during stress, either exercise or illness or traumas.