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Autonomic or ...weird symptom

Messages
90
Very hard to explain. Its a wave of what feels as dysfunctional ion channels or cellular, feels horrible, in the whole body, unable to stand, turn pale, unable to do anythying whilst it lasts. Its not as if you are fainting, uncomfortable sensation in the body, not muscle, not bones, not organs...can't quite explain. I suffer no panic attacks, no depression and take no meds. I have not had this symptom for a few years, then, suddenly, it reappeared, along with other symptoms.

Many thanks for your input.:thumbsup:
 

Seven7

Seven
Messages
3,444
Location
USA
yeah, I thought so too...feel too weak & ill to do the TTT, oh, I get similar when I have a bowel movement, or sometimes after eating...
almost as if its a stress to the body to have a bowel movement or digest..
I saw your chat and I see much of you in me.I thought I was the only one that had to be careful not to pass out during a bowel movement:aghhh: .
I used to go paralyzed a lot due to weakness and feeling like you describe, I am on midodrine and florinef for OI. It has taken all that away (except when I skip to many times the meds). You should look into OI, EVEN when the TTT is negative.
 
Messages
2,565
Location
US
How long does a wave last for you? How often do you have them? I have some kind of wave that I hate which I think matches your description. Mine are very brief.
 
Messages
90
I saw your chat and I see much of you in me.I thought I was the only one that had to be careful not to pass out during a bowel movement:aghhh: .
I used to go paralyzed a lot due to weakness and feeling like you describe, I am on midodrine and florinef for OI. It has taken all that away (except when I skip to many times the meds). You should look into OI, EVEN when the TTT is negative.

Thanks, I will look up OI and EVEN. I didn't do the TTT, too ill for this. Do you at times feel as if you are passing out, hot and sweaty, and weak?
 
Messages
90
How long does a wave last for you? How often do you have them? I have some kind of wave that I hate which I think matches your description. Mine are very brief.
Hi -- waves come and go, does not last long, but the uncomfortable feeling of feeling unwell can last sometimes an hour. The waves comes on for a few minutes.
 

Seven7

Seven
Messages
3,444
Location
USA
Thanks, I will look up OI and EVEN. I didn't do the TTT, too ill for this. Do you at times feel as if you are passing out, hot and sweaty, and weak?
Yes the about to pass out is presyncope. I do not get hot nor sweaty. I get cold like shivering and I NEVER sweat. I have sudomotor issues, but w OI some people don't sweat some sweat too much.
 

Shell

Senior Member
Messages
477
Location
England
I get this with standing up. Not all the time but it comes in waves. My GP says is pre-syncope and I know it's related to OI. It is utterly yuk and completely random for me. Sometimes I can be standing and only get tacky (120+) and sometimes this blacking out and lose of hearing happens. Not fainted yet thankfully.
 

SOC

Senior Member
Messages
7,849
Thanks, I will look up OI and EVEN. I didn't do the TTT, too ill for this. Do you at times feel as if you are passing out, hot and sweaty, and weak?
I used to get like that. For me, it appears to be related to exceeding my anaerobic threshold (which I can do just by standing too long) and low blood volume. It's mostly the low blood volume, I think.

Fluid loading (3-4 litres of electrolyte drink daily) and fludrocortisone (Florinef) have helped me quite a bit. And pacing, of course. :)

Have you seen this article here at PR? http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing