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    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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what work for you for orthostatic intolerance?

MartinK

MartinK

Senior Member
Messages
364
Hi all!
one of my biggest problems in my CFS story is orthostatic intolerance.

I think, many doctors overlook this symptom and I want to get good information for further discussions - next month I go to visit KDM with results from blood and stool tests.

I dont have POTS, only my body hate long staing and sitting (long = 10 minutes staying, 30 minutes sitting)
Walk is better, I try every day walk 500m or 1km (this is limit without crash next day).
After a while the muscles will start to hurt, spine hurt, legs are really heavy and hot...

My OI starts from day to day - as my CFS (fatigue, inflammation, flu like feelings, chronic rhinitis) and I notice when flu like symptoms and inflammation are bigger, bigger is OI too.

I have a bad back (hyperkyphosis), but I've never had any trouble with it.

Who have bad back and have OI?

Please, let me know, what help you with this problem...
Or, is there any need for special examinations?

I would like to group here a list of things that can help - for all, who have same problems with standings.

thanks a lot! Martin
 
Diwi9

Diwi9

Administrator
Messages
1,780
Location
USA
@MartinK - Most of us seem to have POTS, but there are a few with neurally mediated hypotension (NMH). It presents differently than POTS, and possibly worth looking into. Others can speak better about it. I do not quite understand the condition.
 
Tammy

Tammy

Senior Member
Messages
2,185
Location
New Mexico
Orthostatic intolerance was also one of my biggest problems. It is about 80% better after being on anti-viral protocol. I wish I could simplify for you and say just take these supplements but it is more involved than that.
 
Last edited:
MartinK

MartinK

Senior Member
Messages
364
@Tammy Hi Tammy, please, let me know ...here or message, what was your anti-viral protocol! ;-)
because, Im on anti-viral protocol last month and Im waiting for results from Brussels - KDM.

Anti-viral protocol is from my immune-doctor in Czech Republic - because my EBV looks like reactivated.

Valtrex 2g / day and Immunovir (Isoprinosine) pulse protocol
+ Sub Immunoglobulines 1x 14days

80% is great!!! all best for you!!!
Anything else in your treatment? ;-) Thanks for info!

Martin
 
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