t is an interesting question and I went through the same thing myself in 2016 when my doctor and I realized that ME/CFS was not my diagnosis after all. Can you remind me if you have been tested for the various autoantibodies that correlate with Autoimmune POTS (through Cell Trend Lab in Germany)?
Hi
@Gingergrrl No I haven't been tested at all. At the Dysautonomia Conference last weekend I listened to a few of the expert speakers and one of them was of the opinion that he couldn't recommend the Cell Trend test because in research he had done, healthy individuals also came up with many of the antibodies tested. He therefore felt that more research was needed but couldn't recommend this test at present.
That is not to say that he didn't believe antibodies were raised with POTS he just wasn't convinced that particular test was good enough at present.
In August Dysautonomia International are going to be putting up all the talks on their website which you might be interested in . It really is a great annual Conference that appears to be free though they do ask for a donation which I have been more than happy to give.
My BP was 80/50 for 3-4 years and what turned this around (permanently) in my case was IVIG.
Several of the speakers mentioned IVIG being helpful for many of their patients btw.
Do you mean that you are currently walking an average of 10,200 steps every DAY
Well I did last week and my Fitbit called it 4.1 miles daily on average but I did develop very bad leg muscles by the beginning of this week so have done less this week but still up to nearly 9000 daily. Today though its under 8000 cos I have got a bit of a respiratory virus.
I don't think for a minute I am actually walking that distance, I think the Fitbit that I have got indicates I am doing steps when I am just moving my arms so really it isn't anything like that amount I am sure. What it does do is to show that I am fairly active but it does give a false picture. This week has been really difficult because it turned very hot all week and so I suffered badly by Tuesday and needed half a Fludrocortisone which made a huge difference. My heart rate was up all the time and I couldn't stop sweating plus my leg muscles wouldn't stop hurting. The Fludro sorted most of it out and I haven't needed anymore.
To be honest I find the dosing of Fludrocortisone really difficult. Most of the time I don't need any but once summer comes things get more difficult. I cannot take it regularly because it pushes my bp up too much, at least in the morning after taking it but it did settle down in the afternoon.
I am currently able to walk 1-2 miles per day (again if I HAD to
!) but the ideal pace for me which improves my functioning without causing negative consequences is for me to walk 1-2 miles three times per week (so I always have a day to rest in between my walks). I am thrilled with my current ability to walk after 4 years of using a wheelchair and am not complaining whatsoever! But I am in awe that you are walking 5 miles per day if I am understanding you correctly (which I might not be)?!
I think your situation is very different from mine in that you had to use a wheelchair from what I remember for a couple of years and so you couldn't exercise at all. Although I had periods of being bed bound when first sick in 1980 that gradually improved and my strength came back even though the vertigo attacks/migraines didn't disappear so I didn't have very long periods of not having short daily walks and that has continued but obviously there are many days when I cannot walk Snoopy, yesterday was one of them.
My legs were poor anyway in the morning but I really needed to go and pick up an order from a fairly local shop which meant parking a short distance away and walking there. It was also quite hot and basically it was only will power that got me back to the car but my nervous system was screaming at me to get in the cool and lie down. I just couldn't recover enough to take Snoopy out later in the day like I normally would so just had to rest. Thankfully apart from having an early morning mild migraine (which I am sure is connected) my legs recovered but it is also cooler thankfully.
After reading many of the posts on the POTS UK Facebook group I realise I am extremely fortunate to have had some treatment because many on there aren't getting any help at all from their GPs, in fact they seem to be gaslighted. It seems to be an appalling situation and not unlike the way ME patients are treated in the UK.
Pam
