Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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Bluebonnet08 12/07/2016

I just wanted to post about my experience and autonomic testing. There is a strong link between CFS and autonomic problems (like POTS, Orthostatic Hypotension, to name a few). The field is relatively new, but growing. There are only 6 or 7 autonomic labs in the USA. I went to Norfolk, VA for testing at the Sentara autonomic lab. The doctor, Dr. Chemali, used to work at the Cleveland Clinic. I was diagnosed with POTS, which he feels is causing a lot of my issues with fatigue. I am still awaiting results from my other tests, which will hopefully determine a root cause for the autonomic problems. I currently have a treatment plan, which I am about to start. I have some hope that I may see improvements.

I was treated with a lot of kindess and consideration at my appointment. The doctor and test facilatator were knowledgable and professional. It was a long way for me to travel, but ultimately, I feel like I am taking a step forward in my health. Both CFS and POTS are "syndromes" which means they are a collection of symptoms and don't respresent a root cause of a disease. The doctor at the Sentara autonomic lab is looking a root cause, which is not something I've seen from any doctor in my 11 years of suffering. He may or may not find it with me, but he did tests that no one else has ever done and was more knowledgable than any other doctor.

These are two videos made by the testing pracitioner and doctor of the center I visited. I just wanted to share this with others, especially if you have not had autonomic testing. I think it could be helpful to anyone with CFS.

https://www.youtube.com/watch?v=CXcL05eIPh4

https://www.youtube.com/watch?v=ObderQstTO0

triunfadora 12/07/2016

I also have POTS. I was diagnosed at Johns Hopkins Hospital. I found it helpful, since there are no tests for ME/CFS. I feel like my doctors take the POTS more seriously than ME/CFS. So, I think when autonomic testing can produce any answers, then it's a good thing. Thanks for sharing this.

Nina1959 12/09/2016

Thanks for letting us know about this. I'd never heard of an autonomic lab before. I had a tilt table which was negative but I'm certain the fact I was alone in the room with a strange male had something to do with my results, my heart never stopped pounding (ptsd). Perhaps at the Boston lab (an hour from me) they would have female techs/docs.

triunfadora 12/10/2016

Nina, I can understand how being alone with a male could trigger a PTSD episode. I'm sorry that happened to you. Love you.

DarlaC 12/10/2016

I watched the video! Thank you for sharing this! I'd actually never heard of this before! Love to learn something new! Thanks again! xox

Lynx492 12/11/2016

Thanks! This is fascinating. Could you please share a little of your treatment plan and how it goes for you as you get into it, if that works for you.

DixieBlue 12/24/2016

Thanks for posting this. I was diagnosed with dysautonomia and a heart murmur in 1987. Four years later they reversed the heart murmur diagnosis. Hopefully I can go to this lab and learn more to help myself.

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