USA
Leslie, Glad you brought up the tilt table test. Jilly have you had one? It's quite an experience! Clarifies what we go through when our bodies
can't maintain
our blood pressure...
I had one many years ago, and like Leslie, I fainted--very positive test. Also, heart monitoring can confirm tachycardia (POTS).
I've had three over the years--all positive (my heart is always in tachycardia, but when I was pregnant with my youngest daughter
my HR went up to 180 and would stay there for two to three hours every morning. I was put on bed rest. OB said it was like
I was running a marathon everyday. Years later when I had the tilt test the cardiologist told me he has worked with quite a few
women with Orthostatic Intolerance who have the tachycardia during pregnancy....so it's all connected.)
Jilly, your experience with docs there in the UK, is pretty much the norm here. For years and years I worked with
my GP, doing my best to guide him with what I knew about CFS.
Recently I found a top CFS doc in a neighboring state and I've been traveling there. She is on the cutting edge. It is a new
experience to have a doc. who knows far more about CFS than I do!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!111
I'll keep passing on what I learn from her.
Do any of you with these Autonomic probs. get swelling around your ankles? I've had some over the years, but suddenly
it's getting worse.
Sure is nice to be able to talk about these symptoms with you who truly understand!
our blood pressure...
I had one many years ago, and like Leslie, I fainted--very positive test. Also, heart monitoring can confirm tachycardia (POTS).
I've had three over the years--all positive (my heart is always in tachycardia, but when I was pregnant with my youngest daughter
my HR went up to 180 and would stay there for two to three hours every morning. I was put on bed rest. OB said it was like
I was running a marathon everyday. Years later when I had the tilt test the cardiologist told me he has worked with quite a few
women with Orthostatic Intolerance who have the tachycardia during pregnancy....so it's all connected.)
Jilly, your experience with docs there in the UK, is pretty much the norm here. For years and years I worked with
my GP, doing my best to guide him with what I knew about CFS.
Recently I found a top CFS doc in a neighboring state and I've been traveling there. She is on the cutting edge. It is a new
experience to have a doc. who knows far more about CFS than I do!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!111
I'll keep passing on what I learn from her.
Do any of you with these Autonomic probs. get swelling around your ankles? I've had some over the years, but suddenly
it's getting worse.
Sure is nice to be able to talk about these symptoms with you who truly understand!
California US
Jilly
Hello Cactus,
Kerry, I have been out of action since Monday, and really
appreciate your last post, bless you. So glad you have found a good doc and thanks so much about passing on the info. No, I don't have any ankle
problems, or swelling problems generally, though I did have peculiar bumping heart rhythms in the early years of my CFS but managed to sort them out with
Hawthorn Berry Tincture.
Amber, thanks so much for your post
and your support about my son. I try to make his life as happy as I can for him. But, same as yourself, it's virtually impossible for me to get him to
leave the house. I can't even get him to sit in the garden on a nice day! Yes, my computer is a lifeline for me, too. It cheers me up no end to be
able to come to Friends. 
by people understanding what I am saying,
unlike the rest of the world, including Doctors, who have no conception at all of what brainfog is like. I'm sure they think I'm just some mad
hypochodriac woman!!
Funny thing is, this thread nearly didn't happen! I
was sitting here one night feeling thoroughly depressed with my brain fog and wrote the opening post. Sat looking at it and thought:- I can't post this,
it's much too self centred and too full of weird symptoms that probably won't apply to anyone else on the board. I came within half an inch of deleting
it, then remembered something Alice had said to me. She said, when you feel like that, it's best to just hit the Post Button. So I did!
I'm glad you had the courage to post this thread. 
you have by putting
that just changed alot for me
