1. < Chronic Pain

ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Mar 28, 2019

Hi. Quick back story. In Nov 2018 I had sharp pain in the top middle of my abdomen right below my sternum. Pain level 10 of 10. They thought it was my gallbladder, had it removed. Still had pain. multiple ER visits, hospitalized 2-3 times for a week each, 20 plus doctor appointments, over 100K spent in medical costs billed to my insurance.
As a last resort, went to Mayo and was diagnosed in under 30 minutes.

In January 2019 had my first trigger point injection, just had my 2nd injection March 2019. Still in a lot of pain. Taking gabapentin as well. **Has anyone else been diagnosed with this AND what are the symptoms & treatments you are receiving? Are you finding any relief?**

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

mmoss | @mmoss | Feb 15, 2021
In reply to @hopeful33250 "Hi @mmoss, I'm sorry to hear that your abdominal pain is not subsiding and that all..." + (show)
@hopeful33250

Hi @mmoss,

I'm sorry to hear that your abdominal pain is not subsiding and that all of the tests have not given you any diagnosis. That can be very frustrating.

Since you mention the possibility of this pain being nerve pain, I'm wondering if you have other neurological issues? I'm thinking of things like neuropathy, or MS or PD, etc. Given the location of your pain, I'm also wondering if constipation and/or diarrhea are also an issue?

I look forward to hearing from you again.

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Hi Theresa, I have no neurological issues. Prior to this pain I was extremely active fit 67 year old with no medical issues. I am constipated from the Vicodin I was given by pain management. I am also on Lyrica. No diarrhea. If you have any suggestions of where I can go for help please let me know. Thank you

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Amanda Burnett | @amandaa | Feb 15, 2021

@mmoss That sounds quite troublesome, Michelle. Pain without explanation is never a cake walk and finding physicians who are willing to go the extra mile can be difficult. What area do you live so I might recommend some places? Also, may I ask, how long did you have the pain before they started you on vicodin?

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mmoss | @mmoss | Feb 15, 2021

I live in Sarasota Florida but been staying with my daughter in St Petersburg. I have had this pain for 8 weeks. Started Vicodin 10 days ago. Was on Lyrica for 3 days but it did not seem to help. The pain management just switched me to Gabapentin 100 mg. I really want to go to the Tampa Memorial Hospital, as it is a teaching hospital, so they can try to monitor this pain and find out what the cause. Unfortunately, if you want to go to the hospital you have to go through emergency and they only give you something for pain and send you on your way.
Any suggestions are appreciated. Thank you so much for your help. Michelle

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Funcountess | @funcountess | Feb 15, 2021
In reply to @mmoss "Hi Amanda, Thank you for the information. My pain is a burning in the lower abdomen...." + (show)
@mmoss

Hi Amanda, Thank you for the information. My pain is a burning in the lower abdomen. It is not a sharp pain. It does not hurt when touched. When I move it doesn’t move or radiate. I was an extremely health vibrant women prior to this pain. It came out of nowhere. I am now in pain management and hate taking these drugs for pain. Do you have any suggestions of a Dr that might be of help? I tried to get into a Mayo Clinic but they said abdominal pain is too unspecific and there was a 3 month wait. Any suggestions would be extremely helpful. Thank you. Michelle

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Hello Michelle,
I’m not Amanda, but have a few suggestions.
Have you tried an anesthesiologist, they work with pain management, what about an OB/gyn doctor, even a urologist for bladder.
Sounds like your discomfort is nonspecific.
Could it be a muscle, or hernia?
Funcountess

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iksuffolk | @iksuffolk | Feb 20, 2021

Not familiar with this diagnosis..I use “g” pain 2xs day for knee pain. Know there are numerous diagnosis for various issues that use “g”

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patsy2222 | @patsy2222 | May 8, 2021
In reply to @rritam "Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23)..." + (show)
@rritam

Almost 3 years in severe pain with NO HELP. I finally diagnosed myself! Twenty three (23) doctors claimed they "never heard of A.C.N.E.S." so my stack of medical literature was ignored, as was my horrendous pain. Can't sit for nearly 3 years. I repeatedly posted on this site and others, no response to A.C.N.E.S, and NOW you're saying it's COMMON? Central sensitization has worsened the pain. I had all the hallmarks: prior abdominal surgeries, positive Carnett's, and trigger point injections but only temporary relief..21 stupid prescriptions that did nothing. This month I FINALLY FOUND A PHYSICIAN WHO LISTENED, and I underwent resection of anterior cutaneous nerve branches at T7, T8, and T9, with pathology reporting three traumatic neuromas. Gee, I'm SOOOO glad you figured it out. Congratulations.

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which doctor did you see at the may clinic? thanks

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3 replies
patsy2222 | @patsy2222 | May 8, 2021
In reply to @patsy2222 "which doctor did you see at the may clinic? thanks" + (show)
@patsy2222

which doctor did you see at the may clinic? thanks

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My son has had the same pain like this for 6 years. He was just recently diagnosed with Acnes, but the doctor only gave him one shot and some medicine. He still has pain. This doctor doesn't seem to think it is really a big problem. He said the one shot should fix him. He is desperate. Please tell me what doctor you used.

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Amanda Roe | @amandajro | May 8, 2021
In reply to @patsy2222 "which doctor did you see at the may clinic? thanks" + (show)
@patsy2222

which doctor did you see at the may clinic? thanks

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Hello @patsy2222 and welcome to Mayo Clinic Connect. I can see from both of your posts that you are interested in helping your son by connecting with @rritam to find out the name of the doctor he/she saw at Mayo Clinic.

How is your son doing with his pain and what are you using to keep him comfortable?

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1 reply
patsy2222 | @patsy2222 | May 9, 2021
In reply to @amandajro "Hello @patsy2222 and welcome to Mayo Clinic Connect. I can see from both of your posts..." + (show)
@amandajro

Hello @patsy2222 and welcome to Mayo Clinic Connect. I can see from both of your posts that you are interested in helping your son by connecting with @rritam to find out the name of the doctor he/she saw at Mayo Clinic.

How is your son doing with his pain and what are you using to keep him comfortable?

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He had a shot in his abdomen last Wednesday. Do not want to use pain medication......want to do whatever it takes to resolve the problem

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1 reply
wishingtobepain | @wishingtobepain | May 10, 2021
In reply to @mkirby19 "Hello, my question is how did you get diagnosed with Acnes? My 14 yr old daughter..." + (show)
@mkirby19

Hello, my question is how did you get diagnosed with Acnes? My 14 yr old daughter has been in unbearable pain right side stomach for 3 years. Every test is normal. She is missing school and friends and we still are in same place we were at from the beginning . She is currently on cymbalta from her neurologist. We have gone through all(most) meds for GI. She also has nausea and vomiting ( up to 17 x a day) She just had an MRI done and of course normal! Any advice you can give ? We have been to three hospitals. Still no diagnosis. Thank you for any help you can give.

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I know your post is a little older, but curious if she has had a diagnosis? I suffer from something similar called AIP (accused intermittent porphyria). I'm now 60, but a lot of times starts in girls when they start their period. By her age wondering if maybe worth looking into by a hematologist. A lot of doctors have never heard of. How they found mine is I had given a urine test and by following morning had turned black in fridge at doctors office.
It is intermittent so unless happening at that time, hard to diagnosis.
I wish you and your daughter all the best, she is way too young to deal with that much pain.

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