advertisement
Reply
 
Thread Tools Display Modes
Old 02-26-2017, 09:09 AM #1
teachermom teachermom is offline
Junior Member
 
Join Date: Nov 2015
Posts: 55
8 yr Member
teachermom teachermom is offline
Junior Member
 
Join Date: Nov 2015
Posts: 55
8 yr Member
Default feel like my body hates me--long one

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.
teachermom is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ElaineD (02-26-2017)

advertisement
Old 02-28-2017, 05:18 PM #2
JoannaP79 JoannaP79 is offline
Member
 
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
Default

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.
JoannaP79 is offline   Reply With QuoteReply With Quote
Old 02-28-2017, 05:45 PM #3
teachermom teachermom is offline
Junior Member
 
Join Date: Nov 2015
Posts: 55
8 yr Member
teachermom teachermom is offline
Junior Member
 
Join Date: Nov 2015
Posts: 55
8 yr Member
Default

Quote:
Originally Posted by JoannaP79 View Post
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.
teachermom is offline   Reply With QuoteReply With Quote
Old 03-11-2017, 10:25 AM #4
ElaineD's Avatar
ElaineD ElaineD is offline
Member
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default

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
ElaineD is offline   Reply With QuoteReply With Quote
Old 03-15-2017, 06:04 AM #5
teachermom teachermom is offline
Junior Member
 
Join Date: Nov 2015
Posts: 55
8 yr Member
teachermom teachermom is offline
Junior Member
 
Join Date: Nov 2015
Posts: 55
8 yr Member
Default

Quote:
Originally Posted by ElaineD View Post
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.
teachermom is offline   Reply With QuoteReply With Quote
Old 03-15-2017, 06:25 AM #6
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 03-15-2017 at 08:17 AM.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
echoes long ago (03-15-2017), janieg (03-15-2017)
Reply

Tags
body, low, mri, running, tendon

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Help! How long should I feel like this? Blairzo Peripheral Neuropathy 8 11-22-2015 06:34 PM
Left and Right sides of body feel different trappednerve General Health Conditions & Rare Disorders 6 11-25-2014 04:40 PM
I feel like Einstein trapped in the body of a Stooge no_tbi Traumatic Brain Injury and Post Concussion Syndrome 13 05-11-2010 06:54 PM
Progesterone Birth Control Pills-how long before you feel like yourself again? Pamster Women's Health 2 08-11-2009 03:43 PM
I literally feel trapped in my own body. diagnonsense Peripheral Neuropathy 4 06-29-2009 11:17 AM


All times are GMT -5. The time now is 05:08 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.