Hi Karen,

I do understand where you're coming from. When lying down my pulse usually around 110/70, but when I stand it drops to about 95/60....and my pulse rises to about 120 - 125, so I totally understand what you mean you say it makes you feel dizzy and dissorientated. Like you, my PEs caused my heart to become very enlarged too. I have seen a cardiologist and and having some heart tests later this week, as it too, seems that the PEs have caused some permenant problem...although who knows what yet - guess we will have to wait and see!!! Think it will be really useful for you to see the cardiologist, who will hopefullu give you some insight into why you are feeling so poorly! x x x

Hey Robyne

Gawd it feels like there's no end to this damn journey :-/ I've spent months trying to explain to my parents especially that I am physically unable to do things. They seem to think that I should be back to "normal" by now and walking miles with the dogs. It's so frustrating!!

It sounds like you and I have a very similar story and symptoms *hugs* My gp thought I had chronic fatigue syndrome because my muscles hurt so bad and I'm always exhausted. Now it looks like I'm just not getting enough oxygen round my body.
I'm lucky to have a great heart hospital on my doorstep so hopefully have some answers soon. Best of luck with your tests hunni xxx

HI Karen, I had the same thing -only my "normal BP" is 90/60. I was tested for a syndrome called postural hypertension syndrome along with a lot of other tests after seeing the cardiologist, I finally ended up with a diagnosis of atrial tacchycardia caused by the PE. I take medicine for it and it helps a lot- but too much can drop my pressure further, then the dizziness returns. It sounds like the cardiologist is the right person to sort it out for you. Anothher reason that the BP can drop that is easy to fix is dehydration -the Dr kept telling me that was my problem- but no matter how much fluid I drink or got by IV, my body just flushes it out, and my BP is what it is. No standing up fast for me or I see stars. I hope they find the problem soon so you can feel better. Blessings, Teri
P.S. I also do have chronic fatigue syndrome and fibromyalgia -so it could be both.

Hi Teri

Did you have CFS before your clot or after? My bp was usually high but then I had the clot and that's lowered it a lot. I get so many different symptoms that it's almost impossible to work out what belongs where lol

Karen xx

Karen, I had a lot of fatigue before, but nothing like what I had after the PE. I was really tired before, but managed. After the PE my body just wouldn't do what it was supposed to. It has taken me a year and a half to figure out all that needed fixed and what treatments worked for me and those that didn't. Some of them were not conventional, but worked. My x-PCP did not agree with some of these treatments -that is one of the reasons I ended up leaving. He couldn't make me feel better -so I had to do something to get myself better-you can't just give up or you will be in a worse mess. You have to be your own advocate too. If something isn't working, then you need to find a treatment that does. I have done a breathing class -Buteyko method, accupuncture, a CFS specialist, medication changes, lots of vitamins and supplements, chelation therapy for heavy metal toxicity. You have to figure out what is contributing to your fatigue and then take steps to fix it. Never give up! Blessings, Teri

my Bp has always been in the 120/80 range until yesterday at my Drs appt it was 90/60, he thinks maybe i'm somewhat dehydrated. Take in more fluids, gatoraide or other hydration drinks without caffiene. Going to be hard to give up my coffee but oh well could be worse.good luck to you and try taking in more fluids.

Hi Teri

He's sending me to a cfs specialist to learn how to manage it. Lol I feel like I've lived in clinics and hospitals for the last 8 months!

You're right about drinking more, David. I do aim for the 8 glasses of water a day but usually manage 6/7 plus a couple of cups of tea. I've felt lightheaded and had a mad heartbeat since the clot so I have a horrible feeling it's probably more to do with that. Fingers crossed it's not but my gp seems to think it is.
Thanks for all of your replies :-)

Karen xx