ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated this could be ACNES. She has been on nortriptyline with little help. She cannot take allot of meds. She cannot not walk far, sit or bend. Only able to lay on her bed in a reclining position. Heat helps and when she has this horrible pain Bentyl ( antispasmodic) helps. Doctors are bewildered. Has any had this or know someone. Thank you

My mother is 78 and has seen numerous specialist for chronic abdominal pain. The neurologist indicated this could be ACNES. She has been on nortriptyline with little help. She cannot take allot of meds. She cannot not walk far, sit or bend. Only able to lay on her bed in a reclining position. Heat helps and when she has this horrible pain Bentyl ( antispasmodic) helps. Doctors are bewildered. Has any had this or know someone. Thank you

Hello @owenst. I would like to add my welcome along with @colleenyoung. I am so sorry to hear your mother is going through this. It is great of you to join Connect in order to support her.

Members @jgroudan @jimpain and @benacnes have all shared their experience in this discussion and may be able to come back in to share more with you.

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic for your mother?

Who was your doctor - was it Dr Gillespie in Phoenix?

Hi. I have had ACNES in my sternum & left chest for over 2 years. This is what I have learned so far with treatment that works for me: gabapentin medication, multiple cold laser therapy which lessens the pain events I have each week which I found at Mounds View Chiropractic clinic, Garden of Life CBD 800mg lotion. I have found there are no real specialists for ACNES. You will most likely get referred to a pain clinic. I went to a pain clinic & I felt their treatment was pretty radical with nerve blocks (had them didn’t work well), pain pumps (don’t want to be on narcotics) etc. this was the best balance I found that allows me to live a pretty normal life. I still have pain days but they aren’t as intense or last as long as they previously did.

Hello, I am posting for my father 57M. For over 16 years he has been dealing with chronic pain in his right mid-upper abdomen. Pain is severe, can be a 10/10 certain days. Causes insomnia and can be made worse from eating. He has had a gastric bypass with a supplemental surgery a few years later. He has had his appendix and gallbladder removed. Despite years of trips to different doctors all they did was prescribe painkillers and send him away. We were so excited when we found ACNES but even after 2 trigger point injections NOTHING. The injections did not even give temporary relief, they made no difference. Now, we are worried it may not even be ACNES. Perhaps it is MALS? If anyone can PLEASE let us know a possible diagnosis or referral to a doctor or surgeon in the NJ/NY area, it would be a godsend! Please respond if anything rings a bell!!!!!

Hello, I am posting for my father 57M. For over 16 years he has been dealing with chronic pain in his right mid-upper abdomen. Pain is severe, can be a 10/10 certain days. Causes insomnia and can be made worse from eating. He has had a gastric bypass with a supplemental surgery a few years later. He has had his appendix and gallbladder removed. Despite years of trips to different doctors all they did was prescribe painkillers and send him away. We were so excited when we found ACNES but even after 2 trigger point injections NOTHING. The injections did not even give temporary relief, they made no difference. Now, we are worried it may not even be ACNES. Perhaps it is MALS? If anyone can PLEASE let us know a possible diagnosis or referral to a doctor or surgeon in the NJ/NY area, it would be a godsend! Please respond if anything rings a bell!!!!!