Hi, dear. I just saw this post. Yes, I have POTS and NMH (Neurally Mediated Hypotension). It is true that some people with CFS also have POTS. The way it was explained to me is that it is not that they don't have CFS, just that, for them, the cause is NMH and POTS more than just regular CFS. Honestly, I have found no help in trying to treat POTS. I was told to liberalize salt to increase my blood pressure. I have tried BP meds to slow my pulse, but nothing has helped me. If you find help for the POTS, please let us know because I have yet to find anything that helps me. Pouty also has POTS. I know she has suffered terribly with it. I get so awfully dizzy if I stand for more than a few minutes at a time. Ask for a tilt-table test to diagnose NMH and POTS. Many blessings. Let us know what happens. Much love.

Thanks for the info. I hope I will find out more once I get the evaluation. I really hope I can get some type of treatment for the POTS symptoms. When I have a relapse, they can become extremely severe. If I could get rid of the dizziness and heart palpitations, I would be so happy! :) My appointment is still a ways off, unless there is a cancellation. I will let you know how it goes!

Hi Blue, do you always have low blood pressure or how gh blood pressure? I was dx'd with PoTs in 2009 and it is very difficult to manage even with meds. My blood pressure is usually have high with a resting heart rate of 130. I'm still in limbo land with a galore of doctors trying to figure out what I have with my other symptoms for almost 6 years.

Yeah, I have that issue that Dixzeland mentioned. My BP is not consistently low. In fact, it can be high at times, but it drops drastically upon standing. Most doctors don't seem to know what to do with it (or don't care). I know you have to wait for your appointment, but let us know what you find out. And Dixzeland, a resting pulse of 130--that's insane! My resting pulse is about 100-110. I had a friend who told me to lie on my back on the floor and put my legs on the couch. She said to spread my arms wide and lie there for a while to let the blood come back to my heart again from my legs. I don't do it as often as I should, but she said it might take some stress off my heart. That's the issue, really, that over time, a high pulse causes a lot of stress to the heart. Many blessings.

Hi Blue, that'd be good news to have a treatable condition. May I ask what Fitbit you use?

Triunfadora my fast and high resting heart rate is the reason I use my wheelchair most days. By using my wheelchair it keeps my heart rate down some.

Yeah, I guess a wheelchair would help with that. Also, it would prevent you from standing too long. My worst issue is standing. Lines kill me. Many blessings.

My blood pressure is quite low, especially when I'm having dizziness. My resting heart rate is around 72, but elevates to about 130-140 when I get up in the morning. It settles down during the day, but is still high (110 or so) when I stand for any period of time. Sometimes I experience tachycardia of 150 out of the blue.. it is really scary. Hopefully I will get some answers soon. My appointment moved up to next week! I'm not sure if this is just part of my CFS or something different.. maybe a reason for a lot of the fatigue.
Spacepony- I just ordered the regular fitbit.. you can buy them on amazon. I really like mine.

I'm so glad your appointment was moved up. It is really scary when we get tachycardia out of nowhere. I know what you mean. Many blessings.

My Fibromyalgia specialist told me that POTS and NCS are co-existing conditions common with CFIDS.

Thank you BlueBonnet. I hope you get your questions
answered. I'm not as extreme with this, but I do have low
BP. I can stand without getting dizzy but I do get dizzy
driving on winding roads. Also, I don't stand as often as I
used to. This summer I had the tachycardia but I feel it was
due to the heat, and now I barely notice it. I too have an
appointment in a couple of weeks to have this checked.
It's helpful to read the shares in terms of knowing what
to expect from treatment or not to expect.

I was tested for POTS because I get weak and dizzy after I've been standing in one place for a while...and it was negative. I didn't even get dizzy and weak like I usually do when I stand at the deli or on line at the bank, etc. I think it may be because 1. being strapped down to the table was keeping my heart rate up (anxiety) and 2. when they brought me up to "standing" I was still leaning back, not really upright. My blood pressure is low, period. I've not seen it over 110/70 in years and that was in the hosp. Generally it's more like 95/63 and does drop a bit more if I stand for a while. I notice this more at home than at the doc's office, perhaps because I am standing longer. My body temp and blood glucose run low as well, temp about 96.8 and avg glucose is 82. I also have Hashimoto's so I always figured this was all part of what they call Wilson's temperature syndrome, especially since I am much less dizzy and weak now with my t3 increased. I think there can be more than one reason we feel this way when we stand, but as you have heart rate issues, it would certainly seem that you are in line with POTS. I hope that if you are, they get a good reading on you and get some meds that help!