Celiac Plexus/ Centralized nerve syndrome

Posted by anniesezu812 @anniesezu812, Mar 28 10:16am

Does anyone have advice regarding Celiac Plexus nerve pain and totally disregulate nervous system...I am recently diagnosed CP pain, had extreme pain for 17 yrs, now im sure i have Centralized Nervous system.
I am pretty much totally bedridden. I am constantly having terrible/ frightening spinal flare ups and my colon hurts so bad I cant stand.
Now my legs go numb / suffering other serious Neurological bowel issues.
ER keep sending me home, no Dr seems to realize how very ill I am. I cant eat due severe digestive pain.
Has anyone been treated for disregulate nervous system.
I just read severity of pain can cause brain's grey matter to shrink.
I want to go to hospital but they dont know how to help me.
Im desperate...the pain in my spine is now excruciating.
Thank you.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Heating pad hot shower or bath I have a chair that massage I put a heating pad inside of it

REPLY

Hello!

I have 24/7 abdominal pain that was developed after food poisoning. Is your pain 24/7? Any non conventional treatments?

REPLY
Profile picture for invisiblepain2 @invisiblepain2

Hello!

I have 24/7 abdominal pain that was developed after food poisoning. Is your pain 24/7? Any non conventional treatments?

Jump to this post

@invisiblepain2 Hello,
Yes my pain is 24/7. If its CP pain ( celiac plexus) it will affect upper abdominal area. I have had it for so long its now causing severe pain throughout my spine, legs etc. The intensity of the pain is blood curdling....only treatment I know of is a block. I have had so many other procedures, I haven't yet explored that avenue.
My pain has now caused bulging discs/ herniations...core is so weak soon as I try to do anything back gives out.
CP is notoriously hard to treat, for me its left side of colon, stomach and upper portion of small intestines, but on most days my whole body screams in pain. I hope you dont have it , its horrendous. I can't think that a bout of food poisoning would initiate CP pain but maybe. It's often sharp, stabbing as if piercing thru the whole body. Sorry, so far, despite much research block seems only possible solution.

REPLY
Profile picture for anniesezu812 @anniesezu812

@invisiblepain2 Hello,
Yes my pain is 24/7. If its CP pain ( celiac plexus) it will affect upper abdominal area. I have had it for so long its now causing severe pain throughout my spine, legs etc. The intensity of the pain is blood curdling....only treatment I know of is a block. I have had so many other procedures, I haven't yet explored that avenue.
My pain has now caused bulging discs/ herniations...core is so weak soon as I try to do anything back gives out.
CP is notoriously hard to treat, for me its left side of colon, stomach and upper portion of small intestines, but on most days my whole body screams in pain. I hope you dont have it , its horrendous. I can't think that a bout of food poisoning would initiate CP pain but maybe. It's often sharp, stabbing as if piercing thru the whole body. Sorry, so far, despite much research block seems only possible solution.

Jump to this post

@anniesezu812

How were you diagnosed? I did the CP block it wasn’t that effective for me since my pain is functional. What is causing your CP pain? Cause CP is a network of nerves not a diagnosis. For example pancreatitis can cause CP pain.

REPLY
Profile picture for invisiblepain2 @invisiblepain2

@anniesezu812

How were you diagnosed? I did the CP block it wasn’t that effective for me since my pain is functional. What is causing your CP pain? Cause CP is a network of nerves not a diagnosis. For example pancreatitis can cause CP pain.

Jump to this post

@invisiblepain2 Yes I understand CP is a network of nerves, and not an " official" diagnosis but I was told by a gastric Dr who accessed some post op notes from abdominal wall repair surgery, that was likely source of my pain and was noted by operating surgeon back then . It was never explained to me at time of my surgery in 2016.
The abdominal tear occurred in 2010 and I was left bedridden in horrendous condition for 6 yrs...Dr refused to operate because tear did not show on any scans but the intense pain was theorized to have traveled to CP because of the location. My tear was epigastric. After extensive googling, symptom checking, inability to eat easily, I absolutely believe this " diagnosis" is correct.
I also understand it is commonly caused by pancreatic cancer. I am an anomoly/ Drs dont know what to do with me. I don't quite understand " functional" but guess im probably the same...
I'm now schedule for Spravato to help severity of pain....reluctantly.
A lady on this blog said she had a Splanchnic nerve block and got decent relief...studies show it gives better relief. I can't find a Dr to do it..??
I was given a spinal cord Stimulator with disastrous results because the pain is affecting my thoracic spine severely but pain doesn't originate in the spine.
Drs wouldn't listened to me. Stimulator now removed.
Sorry this is long....the pain is excruciating and worse after eating.
Do you have trouble eating??
Gd luck.
Thank you.

REPLY

Mine also gets worse with eating. I did splanchnic nerve block but it only helped with my bloating pain not my actual pain. By functional I mean disorders like IBS. Nerve blocks are not that effective on functional pains.

REPLY
Profile picture for invisiblepain2 @invisiblepain2

Mine also gets worse with eating. I did splanchnic nerve block but it only helped with my bloating pain not my actual pain. By functional I mean disorders like IBS. Nerve blocks are not that effective on functional pains.

Jump to this post

@invisiblepain2 Thank you for telling me!! I'll stop searching for that remedy.
Can I ask how long you have had this problem?
I can't believe it came after food poisoning! Wow!
I have all the ibs issues /symptoms...living is really miserable...is your pain severe?
I have never had the pleasure of talking with another sufferer....I have felt sooo alone on this journey.
How were you diagnosed.
If you are kind enough to answer your welcome to private message.
Thank you so much!!

REPLY
Please sign in or register to post a reply.