Have you checked in to Alternative medicine? Try contacting Celebration of Health Clinic in Bluffton, Ohio and ask if they have had experience with this type of issue. They do good work there!

RBassett, thanks for checking in, was wondering what route you were on. I've had pain psychotherapy since June and pain PT. I also started using CBD 1000 tincture with 250 THC–helps some in the night. What I had to learn is distraction and pacing. It helps with the pain. Trying to learn how to manage stress which makes the pain flare up. Somehow it helps to know you're out there & sharing. Thx again

Hi Baz10, I didn't have any luck with alternative med…acupuncture, homeopathy or microbiome supplements. It's not any gastric or digestive problem in any way, it's neuropathy and I haven't heard of any magic for that….

Rufus444, I've had 5 steroid/lidocane or marcaine or buvipacaine injections and they were only temporary at best. Glad you're out there though. Somehow it helps to know there are other patients with the same diagnosis and suffering and maybe there will be something out there that clicks for us? Any European treatments or research? Obviously the Mayo clinic has no help to offer–

Go to a Physical Therapist!! Just get a general referral, and let them evaluate you! You likely have a lot of tightness/issues that you aren't even aware of. The injections usually don't help because it's not as simple as just numbing pain in one very localized area. If your pain is (and I say IF) musculoskeletal in nature, it likely is the entire thoracic muscles/tissues that are affected (some more than others). The therapist can help localize the sources of your problems and help your loosen tightened areas and teach you ways to help maintain that on your own.

I think anyone who has had GI issues for a long time, likely has tightness/tension in abdominal wall, even back muscles, because we tend to 'hold' areas of pain tightly.

See another thread on here that just started about MFR, myofascial release,one technique used by therapists.

Most MD's don't understand or have any clue what PT does. I'm surprised you were diagnosed with a musculoskeletal problem and NOT sent to PT! Ask your doctor for a referral, if he/she won't give you one (I can't imagine they wouldn't), maybe you have a primary care or other doctor who would.

It can't hurt, you will learn a lot of things that are helpful, and if it doesn't help at all, will rule out having a musculoskeletal cause for your pain.

juliepm, I am looking into taking cbd to see if it will help me some.Stress also makes mine flare up and it gets worse at night, so sleeping is not very good. It does get better about am, but that's about it and I haven't done anything in 4 months now and still no relief. Where did you get your cbd from?. I would like to order some to see if that helps me any. I will also try distracting, but it's tough when my pain at at 10 like most nights. Thx

3am that is.

@elle1233 Dunno who your message was aimed at. ACNES is NOT GI, it's neuropathy , and it IS relieved by numbing one small area. I've had weekly sessions with a PT who is a PhD pain therapist & exercise on treadmill and weights. So far the only help has been 1. Distraction and 2. pain meds. Has anyone else on this thread had any luck at all with PT for ACNES?

Hi RBassett, I get my tincture from a local store, where they are great at working with people like me trying different formulations. I don't like hemp oil, for example, and started the tincture at 250 CBD and 150 THC which didn't make much difference. Have worked up to 1000 CBD and 50 THC, called "CHILL" and I take it at bedtime. It helps, but it's not magic…wish it were.

I found a great doctor here in my city! She put me on Gapapen 300mg 3 times a day! I can feel the difference already pain is minimal.

Hi Sandyg, so glad for you! Hope it continues to work for a long time for you!

juliepm, My condition is psychosomatic and I need hypnotherapy and CBT to try now. I may still try the cbd oils as well. The pain meds don't work with my condition and I'm not sure about cbd oils.We all wish things were magical.

RBassett, Many doctors also implied that my condition was psychosomatic because they missed the ACNES diagnosis. It took a year and a half before ACNES was confirmed. I hope that you are truly convinced that it's psychosomatic and that hypnotherapy is available to you and that it helps. Take care of yourself OK?

Mine is psychosomatic and because of where it is and how much pain I have had, It may have been physical at first, but it has manifested into psychosomatic and will be next to impossible for me to get any relief. The doctor has told me I need to live with the pain and maybe by chance one day it will go away, but I don't see that happening with me. I am at the end of my rope dealing with this and I'm only getting better sleep and then the pain comes back when I wake up or is there when I wake up. I need a 6 month sleep and then it might be gone.

There is a $10.00 book called “life after pain” by Dr. Jonathan Kuttner. He discusses pain sensitization and also has some online courses where you can retrain your pain system. It works for many.

One more question: have you tried the enzymes nattokinase and serrapeptidase? They may help scar tissue remodel which can cut down on nerve compression which is often the cause of pain. Along with vitamin c, quercetin, resveratrol and stretching and exercise I got rid of a lot of myofascial pain thanks to the package of supplements- but especially the two enzymes. Those are taken on an empty stomach.