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Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

Chronic Fatigue Connection

Just checking to see if anyone has CFS with POTS.  I have been horribly sick, mostly bed bound for the better part of six years.  Over the years, have been to Mayo/Jacksonville several times, Vanderbilt, University of Florida, Cleveland Clinic/FL and currently the University of Miami.  I get conflicting opinions CONSTANTLY and it is discouraging.  The UM doctor, an immunologist, feels I have Chronic Fatigue and that is what brought on the POTS, as well as severe sleep disorders and diabetes.  The list of debilitating symptoms is too long to list.

Hoping someone is just like me :)  

Thank you~
Cathy
6 Responses
886699 tn?1270783344
Hi cathy, what dr do you see at um? Is it Dr Klimas or Dr Rey?  I do have cfs also and did develop POTS secondary to CFS ( almost 80 # of us do)
I also go see Dr Klimas
Avatar universal
Hi Maritza ~

Approximately one year ago, you recommended that I see Dr. Adams.  I did and he referred me to Dr. Klimas. (although, we stil have unfinished business)

UNFORTUNATELY, she is no longer taking patients, so I see Dr. Rey.  Today, I went to their support meeting in their conference room, in their offices.  Dr. Klimas was present and I felt like I was meeting a celebrity. I wish, SO MUCH, that I was seeing her rather than Dr. Rey.  At least I am in their program.  I have many unanswered question and I don't think Dr. Rey is as understanding as Dr. Klimas.

Have you ever been to their support meetings?  They are once a month.  Next month's is on 5/18 at 1:30 and Dr. Klimas will be there again.

I have been through so much over the last six or seven years, and just hoping this CFS dx is accurate, I have my doubts. but wouldn't bet against it either.  The POTS is in full force as well as other autoimmune issues. I  have a long road ahead of me, and Dr. Rey really isn't giving me much hope.

The meeting was very difficult for me physically.   At one point, vocal cords went and had to be "horizontal"...the next step would have been crying - which would have been horribly embarrassing - uhg

How are you doing?  How often do you see Dr. Klimas and do you go to the meetings?   For all I know, you could have been there today :)  I would love to talk to you over the phone or e-mail to compare notes.  I remember that you are approximately my age and we share other physical issues.

To keep my family and friends informed, I (at my therapists request) began a blog...cathysjournalupdates.blogspot.com, it you would ever want to stop in and check out my insanity :)

Thank you for the referral to Dr. Adams and answering my post!

Cathy
Avatar universal
Thank you Maritza for your private message.  I appreciate it more than you could know.  I am SO jealous that you see Dr. Klimas!!!!  I will give you a call, the next time I am up to a phone call...I'm sure you understand :)

Thanks again!
Cathy
701581 tn?1279139638
Hi Cathy, I was just diagnosed with POTS and Chronic Fatigue by Dr. Klimas.  I guess I was one of the last new patients to see her.  I took me a while to get diagnosed-I really feel for anyone who has this condition-it is really challenging-to say the least  :(.  I was told last year that I had Lupus so was suprised by CFIDS but grateful to finally know.  I also have alot of immune deficincies low-natural killer cells-EBV, HHV-6 Coxsackie-did you get tested for these.  I would love to chat with you- do you live in FL?

Karen
Avatar universal
Hi Ktmom - so sorry it has taken me so long to respond.  I am rarely on this site and did not realize that you had responded.

Lucky, lucky you that you have Dr. Klimas!!!  I am seeing Dr. Rey.  I went to one of their in office support meetings and, luckily, Dr. Klimas was present.  She was so impressive and would love to be her patient!!!  I must have just missed the cutoff :(

I live in Coral Springs FL....where do you live?  I would also love to talk to you about all of this...misery loves company :)  It is always great to compare notes and realize that we aren't crazy!

Thank you for responding.
Cathy
Avatar universal
Ihave been diagosed with cfs. I have had sometimes POTS (my own diagnosis). At postural change my heart reacts very differently at different times. Nowadays I usually have no problem. My thyroid medication is working well.
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