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10+ Years diagnosed, on Remicade/Methotrexate/Amitryptiline, still in pain.

As my title states, I am 10+ years diagnosed, small bowel resection, ostomy due to recto/vaginal fistula, Humira stopped working, now on Remicade, Methotrexate, and Amitryptilie. As well as prilosec. Recently had MRI and colonoscopy, which both showed the disease is managed.

Here is my dilemma, I still have frequent, almost constant lower right abdomen pain, front and back. At times it's debilitating. I am out on short term disability, and a couple of days away from losing my job, due to STD not extending far enough, due to no "medical" reason I should be in pain.

Trying to find a pain clinic, and all the ones close to me only treat orthopedics. How is that even possible, there are more types of chronic pain than orthopedics. Anyone else have anything close to this happen? I am at a loss.

Thank you for reading!


Staff member
My daughter is 19 and has done a pediatric pain rehab program for amplified pain. Amplified pain essentially means that because there has been inflammation for so long (in her case, in her joints since she has AS), her nerves have continued to send pain signals even though the inflammation is now mostly under control, so everything just HURTS.

The idea is to desensitize the nerves through physical and occupational therapy and learn ways to cope with the pain through cognitive behavioral therapy.

The program she did had 3-4 hours of intensive PT/OT and aqua therapy every day. She also saw a psychologist nearly every day. She learned a lot about living with chronic pain and how to live relatively normally.

She went into the program lying awake every night till 4 am because of pain and within a day or two was sleeping normally! Hers was an inpatient program -- two weeks inpatient and one week outpatient. They try to avoid pain medications and helped her start weaning off her pain medications (which she has REALLY wanted to get off). They also started her on Lyrica in the hope that it would help the nerve pain.

I know that Cleveland Clinic has a similar program for adults but I don't know any others for adults. We mostly looked at pediatric programs since my daughter was 18 when she did it and still sees pediatric doctors. I think Mayo Clinic may also have a similar program for adults, but I'm not sure. I know Boston Children's Hospital also has a pediatric program, but not sure about adult ones.
Thank you both for the info. I will definitely be checking for anywhere that focuses on Amplified Pain. I am an hour away from Boston, and was hoping that my UMass University hospital would be able to help, unfortunately not. So, I will be contacting BCH to see if they can point me in the right direction.

Thank you again, so much!