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@rwinney

Hi there @rajiv33, welcome to Connect. Wow, what a story! Thanks for sharing your journey, and the message of not giving up. I'm glad your doing better since the ENT stepped in. Who knew, right?!

Learning about our central nervous and peripheral sensory input systems is powerful stuff! We may never really stop to think about how they are our bodies computer system until being faced with odd symptoms like muscle twitching, spasms, vibrations, etc... and not knowing how to connect the dots or why things are happening.

Have any of your doctors educated you about central sensitization syndrome (CSS)? Here is a video you might be interested in from Dr. Sletten of the Mayo Clinic's Pain Rehabilitation Center:

I live with CSS and went through a similar journey. This video may be helpful in explaining some of what you have experienced also. Do you mind letting me know if any of it resonates with you?

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Replies to "Hi there @rajiv33, welcome to Connect. Wow, what a story! Thanks for sharing your journey, and..."

Hello Rachel volunteer mentor
Thank you so much for taking the time to read my story and Also reply with great advice.
Firstly I must say oh wow living with css, it must be hard also difficult in daily life routine
My doctors never told me about css but now I know and after listening to the video some of the symptoms he talked about and how it affects the body have me thinking!
On my next check up I will mention it to my physician.
Currently I was tooken off my meds and because of bad side effects.
As I'm off my meds my bp readings are very high for example. 160/102
Thank you once again Rachel
Keep up the positive fight in life