Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Do you think its important when they say not to lean on anything, thats going to be difficult with my bad back?
Soooo - my knees looked very mottled -pink - horrible actually after the 30mins. It was very hard to stand still. Here is the result:
Rest 104/60 HR 70
5mins 123/75 HR 80
15mins 128/81 HR 79
25mins 128/75 HR 77
30mins 124/78 HR 83
Any views?
Thanks Tania - I'll try not to wiggle Haven't done it yet working up to it!!
How did your sister do?
Orthostatic systolic hypertension (which can be a type of dysautonomia in some as its shows issues with bodies regulation) is defined by an increase of 20mmHg or more due to standing.
It soo surprises me how much her CFS is unlike my ME. Her POTS test I did on her (unless her moving ruined it).. I was amazed at just how little her BP and heart rate changed from laying and standing.. very very little difference happened right throu (i guess that is how someone with a good autonomic system must appear). Its like she has none of the things I do but different symptoms. If she wasnt my sister and if there wasnt a good chance she caught her illness from me when she drank from my glass.. I'd swear she had a different illness.
Tania maybe she has - so many illness have similar symptoms to ME/CFS
That must be so discouraging!SOC - its very basic testing in the UK for thyroid - no T3/T4 testing on the NHS unless they see the need for it. I would have to go privately again which I will do now, I have had it done before, that is when I was prescribed thyroxine, then after the palpitations, T3 - thanks for your advice.
Re the herpes viruses think they have gone into hiding, my last titre level wasn't anything like the previous 4 but I was really well at the time, suspect it may be different now. Its an absolute pain getting to see someone privately over here,long waiting lists, long tiring journey's, staying in hotels etc, never mind the financial side of it.