[maygin]

Does anyone know what it feels like to have CRPS in your organs? I've read that it can happen, but I'm not sure how I would know. Last night, I went to my friend's belly dance performance and there was some very loud and very bass heavy music. The bass was the kind that one feels in their chest and I certainly did, but it hurt. It felt a bit like my heart was being crushed and like I couldn't quite breathe. It happened twice, with 2 different songs, and felt a bit different with each, but in general, it was painful and uncomfortable. I'm wondering what happened as it's never happened to me before, though it's been quite awhile since I've had bass up that loud, so it's hard to know if it's from the CRPS or something else. Thanks!

[alaska49]

I have this same issue when it comes to concerts or anything loud that pounds my heart like the base at the concert so if I go to one it has to be in a big arena or outside. Like yours it feels like its being crushed or pulled out and squeezed and all this never happened until my rsd went full body. Even MRIs I cant have without sedation because the pounding goes straight to the heart feeling like a heart attack. So watch which things I listen to. My rsd drs say my stomach and bladder definitely affected. My bladder and stomach has the burning and my bladder shuts down whenever my rsd pain is to high and cant get relief. my swallowing has been affected before where its shut down also when an ultrasound messed with a nerve shutting down the muscles in my throat. Like the dr for my bladder she said that she has had many rsd patients where their bladders shut down and is part of the rsd going internal she was a dr I saw at cleveland clinic. So RSD internal does happen and can go in any organ, guess just depends on the person and how their bodies react.

[maygin]

The doctor you referred to, is she still at the Cleveland Clinic? Would you mind sharing her name? I'm considering going there if I can find a solid CRPS specialist. I had one, but he retired last year and it's been challenging to deal with the constantly changing medical issues without him.

Thank you so much for sharing your experience. Lately, I've been having this thing where I feel like I can't swallow. I always can, but there's this second where I'm afraid I'm not going to be able to breathe because I can't swallow. I hadn't thought that there could be a connection to CRPS. As crazy as it sounds, it's such a minor issue, I haven't thought much about what it is.

I'm also starting to have trouble emptying my bladder. It's hard to describe because it's not like a sensation I've experienced before. I had assumed it was nothing, but now I'm wondering if I need to look more into internal involvement of CRPS. I was already diagnosed as full body a year ago, but didn't have internal organ involvement. So I guess it could be a possibility.

My IBS is out of control lately, but what's weird is things that used to be safe to eat, no longer aren't. Treatments that used to work are working less. And the symptoms are changing a bit as well. Do you happen to know how one differentiates between IBS and CRPS in the stomach?

Thank you again!

[BioBased]

Since the onset of CRPS I have had bladder trouble, stomach trouble, dysphasia, migraines that sent me to the ER, skin that has become texturized-extremely dry, wrinkled fingertips and extreme fatigue. I don't believe it is coincidental that a few weeks/months after my accident these problems started.

Recently there has been significant research on the vagas nerve, which connects the bowel and the brain as being involved in autonomic function disorder. I found it interesting that the glia cells were mentioned in connection with the vagas nerve info, the cells that are activated with LDN.

There is speculation that the herpes virus may play a part in attacking the VN causing autonomic nerve dysfunction. I have had herpes simplex 1 since I was in grammar school, so this seems a rational hypothesis to me.

[alaska49]

Maygin, I dont remember the doctor who I saw that had said she had seen it internal many times before but will try and look through the doctors on the website and see if I can find her, she didnt treat rsd, I was seeing her for my bladder as to why it shut down she is a urologist, but she said she see's and tries to help many people who have RSD and said that their complications were or are due to the RSD giving issues with the nerves causing the bladder to have issues and she said many of the people with rsd have many other organ issues which the other specialists attributed to rsd. The swallowing shut down was awful the muscles in my throat couldnt move at all as my nerves werent sending the message to do it. Like about more than a year ago I have been having issues again but now solid foods at times get stuck half way down and cant seem to swallow them down. The bladder issue is really bothersome, I usually only have issues if Iam having a flare and what happens to me is like my bladder goes numb and not only dont I have a feeling of when I have to go, I just cant and eventually what happens is my lower stomach just becomes so painful because its full and the nurses ultrasound my bladder to see how full and its so full they cant believe it and they have to put in a fully catheter until I can use my bladder again. I mean like 1 time a doctor didnt believe RSD could shut it down so gave me several bags of fluids along with meds that make you have to go and made me wait several hours but nothing worked other then causing me lots of stomach pain.
Iam afraid I dont know how to differentiate between IBS and RSD in the stomach sorry. With the burning pain in my stomach and how it gets so much worse during flares with even my skin on top of my stomach getting warm and cant be touched thats some of the symptoms my doctors went by to diagnose having rsd in my stomach. I mean I have other issues to with my stomach so I know what your mean of not really Knowing how to know which issue could be 1 or the other. Its like I have another disease sarcoidosis and with it in the liver, then have gallbladder issues and then the stomach issues its always wondering which, which is which.
I know how all of this is always making like my head spin, things nerver seem simple and rsd going internal just adds to the box, and learning to know what is what or if its rsd or not is hard. Also finding drs who know about RSD and know how to know how to tell if its internal or not is very hard. I went through 113 drs in 13 states looking for help and treatments and there were some helpful things and tips and treatments found along the way but finally found my dr now but this RSD monster sure doesnt make it easy for anyone to find help, or treatments.

Samantha

[maygin]

Samantha,

Thank you so much for your detailed reply. You have had a extensive experience with finding answers to your medical problems. I admire your perseverance. I am so sorry CRPS has caused so many issues for you. I am glad you have found a few supportive doctors.

After reading your experience, I am more convinced I have CRPS in my bladder. Like with you, my problems with emptying my bladder follow my flares to a certain extent. I will continue to monitor and track it so I can talk about it with my doctors.

It is hard to distinguish one issue from another sometimes. This is why sometimes I feel like a holistic approach would make a lot of sense. But it's not something my insurance covers.

Thank you again for sharing your experience. I greatly appreciate it!

Originally Posted by alaska49

Maygin, I dont remember the doctor who I saw that had said she had seen it internal many times before but will try and look through the doctors on the website and see if I can find her, she didnt treat rsd, I was seeing her for my bladder as to why it shut down she is a urologist, but she said she see's and tries to help many people who have RSD and said that their complications were or are due to the RSD giving issues with the nerves causing the bladder to have issues and she said many of the people with rsd have many other organ issues which the other specialists attributed to rsd. The swallowing shut down was awful the muscles in my throat couldnt move at all as my nerves werent sending the message to do it. Like about more than a year ago I have been having issues again but now solid foods at times get stuck half way down and cant seem to swallow them down. The bladder issue is really bothersome, I usually only have issues if Iam having a flare and what happens to me is like my bladder goes numb and not only dont I have a feeling of when I have to go, I just cant and eventually what happens is my lower stomach just becomes so painful because its full and the nurses ultrasound my bladder to see how full and its so full they cant believe it and they have to put in a fully catheter until I can use my bladder again. I mean like 1 time a doctor didnt believe RSD could shut it down so gave me several bags of fluids along with meds that make you have to go and made me wait several hours but nothing worked other then causing me lots of stomach pain.
Iam afraid I dont know how to differentiate between IBS and RSD in the stomach sorry. With the burning pain in my stomach and how it gets so much worse during flares with even my skin on top of my stomach getting warm and cant be touched thats some of the symptoms my doctors went by to diagnose having rsd in my stomach. I mean I have other issues to with my stomach so I know what your mean of not really Knowing how to know which issue could be 1 or the other. Its like I have another disease sarcoidosis and with it in the liver, then have gallbladder issues and then the stomach issues its always wondering which, which is which.
I know how all of this is always making like my head spin, things nerver seem simple and rsd going internal just adds to the box, and learning to know what is what or if its rsd or not is hard. Also finding drs who know about RSD and know how to know how to tell if its internal or not is very hard. I went through 113 drs in 13 states looking for help and treatments and there were some helpful things and tips and treatments found along the way but finally found my dr now but this RSD monster sure doesnt make it easy for anyone to find help, or treatments.

Samantha