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.

For whatever reason, you could be feeling that large artery in that area pumping blood. I can feel and see my mesenteric artery pulsing sometimes.

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

Jerie,

Could this pulsating thing as well as the burning feeling I have in my lower stomach area turn into something considered Full Body? I have other issues too that I mentioned in another post and I really don't know what to do since I'm still waiting for an appointment with another PM Doc for a second opinion. I've been out of work now for 3 weeks and I have no idea when I'll be able to go back. When I wrote this it was going on for a week, now it's been about a month, and it's not intermittent anymore. It's pretty frequent & it doesn't matter what position I'm in I could be sitting, standing or laying down and it'll just go off by itself. You're right it's VERY annoying! I don't know if it hurts because of the burning I already feel or if it's not hurting I can't tell anymore. I'm so confused I've had CRPS for 10 years now but it seems like it's getting worse since a few months ago. I'm so over it. I feel like my life is just wasting away. I'm getting more and more depressed and the pain is getting more and more intense. Argh!! I don't know what to do anymore.....

Hi Jenn,

I remember you mentioned seeing a sub for your PCP at one point in another post. Did you ever get in with your regular person?

I think it's good you are seeing another PM but if haven't seen your primary yet please get your stomach issue checked out. We owe it to ourselves to get new symptoms evaluated in case they are something other than CRPS. I just want to be sure you are getting appropriate treatment.

I hope you get answers and feel better soon,

Yes your symptoms may have generalized which means it's now a central pain syndrome . Ask about nerve blocks to stop the burning. If you had surgery or a recent injury start with those nerves. A splanchnic or hypo gastric block. I'm sorry. This disease USUALLY spreads. The regional thing is a lie. CRPS affects numerous nervous systems. Once centralized anything can happen. Try to get the burning under control by any means. I have core burning. If you think you get that term you have fb RSD. Central oven is on.

Hi Jenn,

It's your mind and body - the good thing is that you get to choose whether you believe all or some or none of the above.

Not saying CRPS/RSD/Sudeck's/causalgia/whatever the medical field wants to call it can't go full body, and isn't an awful thing to deal with, or that Jerie is wrong. It's definitely central nervous system related - which means that your beliefs play an even more central role.

Hi Littlepaw,

I've been so tired and busy with "pain" that I haven't been able to get around to replying to you earlier. I'm so sorry! So here's the scoops....I was actually in the market for a new Pain Management Doc. My PCP has known me since I was 14 and knows all about my CRPS so I'm sticking with him until that man croaks over and dies...lol wait no I shouldn't say that but you kinda get my point right. He's seen me at my very best and at my very worst and I can say he was probably only one of the FEW physicians I saw early on (2006) that BELIEVED me, and didn't think I was crazy. I've seen him about 3 times in the past 2 weeks alone. I've mentioned the stomach issues and if I should be getting blood tests done, another MRI or one of those thermography tests and a sweat test and all kinds of tests and he laughed because he knows me well and said "I see you been doing your research again huh". I told him, hello what do you think I do when the insomnia kicks in? Lol! But he said in regards to all of the tests etc. he wanted me to go see the NEW PM for the consultation first and see what she says and then he'll proceed from there. I don't think he wants to jump the gun because as he said, he's only familiar with the disease because of ME and other than that he wouldn't be the Subject Matter Expert in any type of treatment for me. If the new PM does want those tests done he doesn't want to step on her toes. But I know he's very concerned and I see him again next week after the consult. At this point all I'm doing is living in this hell of pain, and pretty much doing nothing but laying around. It's getting crazier and crazier the spasms the burning the itching the pain is constantly at a 8/9. I'm just trying to make it till next week but it's not easy. Thanks for checking up on me. I'll keep you posted on what happens next week. 😖😫🤕

Visioniosiv,
I'm sure you mean well when you said what you said, but I'm in this forum asking questions on things REALLY happening to me and seeing if there are others here who have experienced it. When you tell me "It's your mind and body - the good thing is that you get to choose whether you believe all or some or none of the above". Kinda makes me feel like you're saying I'm making these things up. I can assure you that I AM NOT MAKING ANY OF IT UP! I don't need pity or consoling. I'm looking to see if what's happened to me has happened to others so I can inform my docs correctly. There's not a whole bunch of docs here in Hawaii familiar with CRPS, so if I can guide my docs towards a better way to treat me then WHY NOT! I DO believe in the new symptoms I'm having and I'm not absolutely sure if it's because of the CRPS or something else. But I'm not sitting/laying here being a Hypercondriac at every little thing that I feel, these new issues have been happening for awhile. So with that said......please don't tell me my BELIEFS play into whether or not these symptoms are happening or not happening, I know they are happening and also do know that what you focus on is what you get BUT in my case I'm not focusing on it like you think I am, I'm merely asking questions. Your comment really didn't make me feel better at all and all it did was remind me of all the people/doctors I've encountered for the past 10 years who didn't believe me when I said something was wrong with me. I'm not sure what your intentions were but just an FYI....your comments made me feel worse than the burning sensations I constantly feel! THANKS FOR THAT!!!!

I'm sorry Jenn - you're right that I do mean well - I didn't mean to say that you're not experiencing what you are, or that it's just all in your head. I have been through similar stuff with doctors too. I was commenting more in reference to some of Jerie's post ie "this disease USUALLY spreads" and "full body RSD oven ON." From what I went through personally I found that reading and hearing scary/negative things influenced what I believed about RSD, which in turn made the actual symptoms worse. Was just trying to say that our beliefs play a big role in how we feel, and I'm really sorry that it came off as an attack on you. Hope you go from an 8-9 all the way back down to zero some day super soon.