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Old 01-25-2016, 06:59 PM
Jerie Jerie is offline
Junior Member
 
Join Date: Sep 2011
Posts: 71
10 yr Member
Jerie Jerie is offline
Junior Member
 
Join Date: Sep 2011
Posts: 71
10 yr Member
Heart

Quote:
Originally Posted by IamJenn View Post
Hi all,

So this has been going on for about a week or so during one of my worst flares of my life. I'm still feeling weak but I've noticed that in my lower right abdomen there's this really weird pulsating feeling kinda almost feels like a heartbeat or something. It's intermittent and there's no pain per se just feels really weird. It's not my appendix because I got that taken out 32 years ago and it can't be because I'm pregnant because I'm on my period sorry tmi. But it's getting me worried! I'm slender by nature but because of this disease I've lost a lot of weight so I'm way more skinnier than I'd like to be but it's really freaking me out! I called my PCP and they were supposed to call me back but never did and I told my husband thinks I'm over exaggerating but I think there's something wrong. If anyone else ever had this before can you tell me what it is or what you did to figure it out? Please and thank you.
Hi, be relieved. I have fb RSD I get that all the time. It's a muscle twitch and annoying as hiccups. I also know another woman with gasteo paresis who gets an annoying Vegas nerve butterfly's. Goes on for days. I call mine liver hiccups. Never died or caused a Heath issue just annoying. Nerve signal weirdness is part of what I think are minor dystonia or muscle spasms symptoms. Muscle twitch is my best guess.
The weight loss is another issue. I lost 30 lbs rapidly was quite sick and thought I was going to die. It was a flare up. Drs saw me wasting and did nothing. It passed and I put it all back on. My best guess is a hormone imbalance caused by RSD. I read a book called Hear my voice by a woman who worked for the WHO and had that happen to her too. She was kind ok ottomh what WHO did to her but I related to her story all to well and could read between the lines. I have found flare ups last 3-4 weeks. Survive it emotionally intact and stuff passes most the time. For me anyways except bladder crap. I get infections and pelvic pain and bladder failure during bladder flare ups. If it dose not hurt ignore it. Support your body with good nutrition and calories during weight loss. I use superfoods too. Good luck and God bless you
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"Thanks for this!" says:
-Spike- (01-25-2016), IamJenn (01-27-2016)