Considering Pain rehab? Any experience?

Posted by pshack76 @pshack76, 22 hours ago

I'm strongly considering going to pain rehab at this point. Anyone's experience with any of them would be beneficial. Mayo (most likely the Rochester campus) is an option.

First a little background:
I have a rare neurological disorder, achalasia, that is somehow related to an autoimmune disease that I was diagnosed with in my early twenties, called Graves Disease. Nobody can tell me how they are related, just that around 40 percent of achalasia patients have graves disease as well. I was originally misdiagnosed with Bipolar in my mid twenties, and was on miss medicated for over a decade. In total I've had 5 surgeries. One was almost twenty years ago, the other four were in the past five years. Two were major; I've had both my esophagus and thyroid removed. The esophagectomy surgery was the last and it was about a year and half ago. It is a very long, about nine hours, and complex surgery. It did achieve one of the main purposes; I no longer need a feeding tube, but the pain level is no better. The pain level is no better. At this point I can't remember my last pain free moment. It's not always horrible, but it's always there. I only sleep around four or five hours at night. I can nap during the day, but not for long. Heat and allergy symptoms make much worse. I've identified a few other things that make the pain worse. I don't take much medication, because we've narrowed it down to primary nerve pain.

The questions I still have:
Achalasia with graves disease is very rare. (There are probably under 10,000 patients in the country.) Something could have been missed. Do pain rehabilitation centers look to see if something has been missed?
It's come to my attention that this whole chronology: the autoimmune, disease, the misdiagnosed and inappropriate medication (several medications I was on can contribute the development of central sensitization), and the achalasia plus multiple surgeries have put me at risk for something called "central sensitization." Especially when you consider that achalasia causes nerves in your Vagus nerve system to misfire as they are degenerating, and during an esophagectomy surgery your Vagus nerve is cut.

My main question is (in case it's not clear yet) because this is all really rare and extremely complex, I need to go somewhere who will look at the entire picture and to there best of their ability tell me what my best way forward is. I've pieced everything together so far from multiple doctors in something four states. It's a bit maddening. I have insurance that would cover a stay at Mayo, I would have to pay travel expenses. I live on the West Coast. It would likely have to be by the end of the year, as I don't know how much my insurance is going to cost next year and may have to make a major change because of it. I know given you a lot to try and take in, any experience with pain rehab would be helpful.

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

@pshack76
Yoo have been through a lot.

What medications are you taking now? How are you being treated for your thyroid?

Where are the majority of your pain symptoms? What would inpatient pain treatment do and how would they do it to address your source(s) of pain?

I would think they need to know exactly where your pain is coming from and what is causing it in f they are going to get to the root of the problem and know how to stop the pain.

REPLY
Please sign in or register to post a reply.