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Old 02-28-2017, 05:18 PM
JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
JoannaP79 JoannaP79 is offline
Member
 
Join Date: Feb 2015
Location: South England
Posts: 246
8 yr Member
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Quote:
Originally Posted by teachermom View Post
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.
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