I have CRPS stage four in my lower body and stage three in upper part. It just moved to my chest and it always feels like I'm having a heart attack but I'm not. What is going to happen next? Anyone have experience with that. I already had a strange EKG once about six months ago. I've always had a very healthy heart. Anyone with advice or any stories? Please tell me anything. Thanks.

Hi Tom and welcome to NeuroTalk. Here is the link to our CRPS forum

http://neurotalk.psychcentral.com/forum21.html

You'll find lots of good information there. I'm glad you've joined us but sorry for the reason.

Iam sorry tomcrps that you are dealing with this nasty disease... can I ask you.. With your chest crps...does it feel like you are breathing cool air always along with incredible mid back pain..ESP. While taking a deep breathe????

We are here for each other..Hang with us and lean on us for answers and support...

take care...KS

Hi, keep smilin and tomcrps:

I have full body RSD (CRPS). When I feel icy cold running through my blood vessels and when this type of RSD flare-up or attack gets very violent, I have the feeling I am breathing icy cool air, especially with each inspiration (deep breathe). The problem is not as bad with each expiration. I do have mid-back pain also, but it is my lower back that is concerned.

Does it mean the full body RSD is not external only anymore, but is starting to become internal also? After all, it is the lungs that are doing the job of breathing, so this is why I thought RSD was becoming internal full body RSD, as opposed to external full body RSD.

Keep smilin, you call this "chest CRPS"; I call this "lungs CRPS", but in the end, it is all the same, because the lungs are in the chest. Correct me if I am wrong.

Have you discussed this with your doctor?

yes, I discussed my chest/lung cool air...back pain with Dr. Schwarztman at my last appointment...He confirmed what is happening...RSD/CRPS is considered internal, full body when organs within our bodies are now pain involved...The reason our chest, lungs hurt is due to the sympatheic nerve and it's pathway it takes inside our bodies to our messaging part of our brain.. A big circuit system which has a big short circuit flaw..Funny but we most likely are not having pain within our lungs but it's the area the nerve is sending the message wrongly to our brain...Now my tummy is burning also so the same thought process is in action too..

I'm so glad I can share and hopefully help you all!!! Tender easy hugs for each of you...

kathy

Hi, ballerina and keep smilin:

Ballerina, the only doctor who is willing to take care of my RSD in the little island where I live is my primary care physician. He is wonderful but he does not know that much about RSD, so he does not know what is going on.

Quote: "RSD/CRPS is considered internal, full body when organs within our bodies are now pain involved..." At first, I was disappointed and angry to learn I have generalized internal RSD with involvement of my lungs and gastro-intestinal tract but, on the other hand, I prefer to know the truth than to be lied to.

What about the brain? Since it is involved (I feel electrical discharges in the brain), can I add the brain to the list of internal organs involved or is the brain not considered an internal organ, even though it is inside the body?

What about the blood vessels? Because they are involved (I feel icy cold and insects running through them), can I also add the blood vessels to the list of internal organs involved or are these blood vessels not considered an internal organ, even though they are inside the body?

Quote: "The reason our chest, lungs hurt is due to the sympatheic nerve and it's pathway it takes inside our bodies to our messaging part of our brain.. A big circuit system which has a big short circuit flaw..Funny but we most likely are not having pain within our lungs but it's the area the nerve is sending the message wrongly to our brain... Now my tummy is burning also so the same thought process is in action too... " Thanks for providing this explanation. I wish I had a doctor like Dr. Schwartzman on hand so I can find the perfect treatment for my RSD.

Keep smilin, if it is okay to ask you, what does your doctor give you to control the problems of cold you have with your lungs?

Thanks again for the information.

I am so sorry you have full body but you are obviously in good hands with Dr. S. Did Dr. S recommend Ketamine infusions and if so did you experience any relief?

Dear Kitty and Ballerina,

I'm like you in that I want to know exactly what is happening with me even tho it paints an ugly face on my RSD.... I have had this monkey for 5 years now.. It's work but I try to replace my pain and heart ache by happy stuff.. Like a smile or kind word or helping someone just by making them feel good...

I have Dr. S as one of my Dr. He has asked me to have the 5 day Ketamine infusion but it is nearly impossible due the non approval of my insurance, (3different appeals...) As far as current meds, no pain meds!! Sensitive tummy but I do take 3 meds to help with my burning tummy, (Reglan, prescription prolsac, and an spasm med.).. And ambient to sleep, The cool air breathing, I just live with it as I do my RSD pain... Not easy as you know...it can make me somewhat an impatient person but I try to smile anyway..

My unqualified thoughts concerning the ice water running thru your veins, I have to believe RSD will and can do anything...go anywhere it pleases, so it is possible that is RSD also...

I sure hope I have helped you in a good way...I can tell you with all of my heart that you have my support and concern as I truly understand what a bear... A 4 headed monster RSD can be...!!

be well...and have a wonderful night...

Hugs, Kathy

How ironic Kathy. You desperately want the Ketamine treatment but the insurance has denied it. I have both a primary and secondary insurance that will pay 100% for any Ketamine procedures but I am severely allergic to Ketamine. Guess you re right- no matter what the symptoms we all have to keep smiling!