Hyperesthesia and CP/Pain all over to light touch

Pancreatitis
#1

Hi, all:

First, sorry it’s taking me a while to get back to everyone’s notes and hugs-- You’re all too awesome and help so incredibly much! I’m still having a tough time–and they’re worried because I’m still getting low grade fevers on the IV antibiotics that there still might be an infection in my port. I can’t stand the thought of another admission and more surgery!

Anyway… for months now I keep getting really bad episodes of what I had known as allodynia-- like my nerve endings are outside my skin-- from head to toe-- and I can barely stand any touch (from the water in the shower to my clothes on my body to sitting or lying down-- it’s so incredibly painful I want to scream sometimes-- even with the lightest touch). My sister-in-law (a doc) said that it might, more accurately, be hyperesthesia, and that it’s not uncommon in CP. She described it as “a change in the processing and interpretation of nerve stimulus” and that when you have CP, this can happen because your nerve sensors get messed up and perceive this pain when there’s nothing there to be hurting.

Does anyone else get this? It seems to flare and then calm down and then flare again. It got really bad again today and I thought I’d check if anyone else gets this. If anyone else experiences this, have you found anything that helps the pain or makes it stop? My GI doc is clueless, as is my PCP. That’s so frustrating. There’s info all over the net on this being caused by CP in some cases.

Thanks, as always, for all your help and compassion! Hope you’re all doing okay!

Many hugs,

Lisa

#2

My daughter also suffers from what you are describing. She is a pediatric patient at this point, and I have taken her to the best of specialists all over S. Calif. I’ve heard of everything from "she’s faking it to get more opiods, to “overstimulated nervious system”. I know that when she has a flare-up, I can’t stroke her arm to try to comfort her, it only hurts her. So far, we have had not much luck, I wish I could give you some hope, but, I’m relieved there is at least a name to put on this condition. Thank-you
Jill
P.S. I’ll let you know if anything helpful comes up, I pray you will do the same.

#3

Lisa,

I am so sorry to hear of your personal pain and your condition. I just finished writing another person in an email titled “How full must be our negative bounty?” as she is also going through so much. I wonder if there is a topical form of morphine or some sort of analgesic that you can apply to your skin so as to alleviate your suffering somewhat.

You and I have a few things to do together and I want you well so that we can!!

You are an inspiration to me as you well know.

Your are so much in my thoughts and I may personally email you later.

Anyse

#4

Dear Cager21

I am so sorry that your in so much pain. I feel that I have no need to complain for how I feel when you are in so much pain. I do hope that at some time they find a cure for you and everyone maybe through stem cell to rebuild a new nervous system and or pancreas . I hope you get some relief soon

Love,

Kathie

#5

How horrible that must be!! I know what I want most is to be touched and held when I don’t feel well.

#6

You’re right-- it’s really hard not be able to be touched at all especially when you need it most!

Interestingly, this hyperesthesia/allodynia seems to have much abated since I went off the IV TPN (on it almost 8 weeks then). I’m wondering if there might have also been a connection there-- or maybe a sensitivity to one of the ingredients.

Many hugs,

Lisa

#7

Hi Cager21,

I do believe it is possible to be sensitive to the TPN I think that it doesn’t agree with me. I was vomiting at one time on it, then the next I had extreme diarrhea. When I stopped it it slowed down and stopped.

Kathie