First of all, I am ok, but I honestly thought I was dying this summer. I have tried really hard to keep my life "normal" since all of this began a few years back. I have tried to keep on running, working, and enjoying life. But I get that I will have more aches and pains along the way than other people my age.

So, I ignored the aches and pains in my feet. I kept thinking it was just par for the course with sfn and I ran on. Last summer, I had severe silent reflux, but didn't know that was what I had. I got to the point that I couldn't swallow solid food. My heart rate was constantly high or low and I was too tired to stand most of the time, but I still tried to at least walk a mile each day.

I was prescribed protonix and began jogging again. The foot pain was a little more pronounced. So I decided to see an ortho (may as well, met my deductible). They felt it was probably my posterior tibial tendon, wasted months trying a walking boot, and gave me many warnings that it could rupture and to not do any running until I had an MRI. So, I went this week for the MRI and they discovered that my tendon is not there at all. They've never seen anything like it. I asked about running. Said they had no idea if it would be safe because they've never had a patient without that tendon. They want to do another MRI to see if they can find it in my calf.


I'm thinking about going back on low dose amitrip. because when I was on it my feet felt fine. But then again, should I try to hide pain that might be telling me something about my body? Why is my body attacking me?


One more thing, when this began I had high levels of anti-jo 1---polymyositis antibody. So...one more thing in the back of my head at all times. Is this active again causing new issues? I feel like a hypochondriac.

Hi Teachersmom, are you under the care of a neuro or Neuromuscular person. I was looking at the various myositis' as a possible cause of my weakness and atrophy but don't have anything pointing to that blood wise. With all the issues you have described including the autonomic issues I'm hoping someone is overseeing it all to try understand the underlying cause.
If you have other symptoms pointing to a myositis I'd seek further testing to confirm.

Yes, my neuro is one of the best for myositis and I see him for yearly check ups. At my last appointment, he felt that my summer issues pointed to the antibody being active again. However, by the time I had my visit, I was doing better. He said that I didn't need to repeat testing until I am experiencing weakness again, which makes sense to me. I go back in July. I will tell him about my tendon at that time.

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.