Looking for answers. No diagnosis yet. What next?

Erythromelalgia was not considered because the areas effected by this disease are more centralized in the legs and hands. Her pain has been in the mouth, arms and neck predominantly. The results came back from the ENG and tilt table as well as another skin biopsy were all negative for small and large fiber neuropathy. We were referred to a pain doctor (first at Brigham's but had two from Dartmouth that were not able to resolve) The Pain Doctor felt that it was time to have a treatment plan and further test would probably not result in a diagnosis. He put her on Amitriptyline at a low dose and it has improved her condition to the point that she is now getting some sleep. (interrupted but at least some sleep) and her pain level has gone down (improved). His comments were that if we could at least get her pain down and sleep level/quality increased then maybe her system would be more normalized and it could potentially go away. Her diagnosis is Centralized Pain.
Curt

@curtj Curt, I understand now why she doesn't have Erythromelalgia. Thanks for clarifying. With a diagnosis of Central Sensitization, you might want to study Dr. Norman Doidge on you tube, and hear all his teachings on Neuro plasticity. If she has energy, she really should try to lower her pain through consistent use of neuro plastic pain strategies. You might also want to consider buying the Curable app for your phone or computer, that teaches various methodologies in dealing with pain. It is now on sale for about $50.00. It includes relaxation breathing techniques, "talking to your brain" methodologies in lowering pain, writing/journaling, science lessons to teach you about central sensitization and the neuro plastic brain, etc. I am so glad that sleep is beginning to help your wife, and her pain is lowering a bit. All my best to you, LoriRenee1

Erythromelalgia was not considered because the areas effected by this disease are more centralized in the legs and hands. Her pain has been in the mouth, arms and neck predominantly. The results came back from the ENG and tilt table as well as another skin biopsy were all negative for small and large fiber neuropathy. We were referred to a pain doctor (first at Brigham's but had two from Dartmouth that were not able to resolve) The Pain Doctor felt that it was time to have a treatment plan and further test would probably not result in a diagnosis. He put her on Amitriptyline at a low dose and it has improved her condition to the point that she is now getting some sleep. (interrupted but at least some sleep) and her pain level has gone down (improved). His comments were that if we could at least get her pain down and sleep level/quality increased then maybe her system would be more normalized and it could potentially go away. Her diagnosis is Centralized Pain.
Curt

Just a thought... does she have problems with her liver?? That’s the key organ for detoxification. If she’s having side effects from meds it could be due to poor liver function and/or methylation. I was recently diagnosed with MTHFR mutation and I can’t tolerate many meds either. Maybe this will help you in some way! Good luck & I hope she finds the answers she deserves!!

@curtj
Curt, my wife who has neuropathy in her feet/ankles is also ultra sensitive and even allergic to most drugs. The only things that help the extreme bouts of pain are MJ (marijuana) and kratom, a leaf from SE Asia that can produce opiate-like qualities. And the kratom makes her so relaxed and out of it (sometimes for a whole day from just one dose) that she prefers the MJ. Meanwhile, in the quest for longer term pain relief she is experimenting with taking a supplement called PEA (Palmitoylethanolamide) which has a few studies where it has helped people with pain but jury is still out for my wife. Another member, @elizm , has had good success with it. Her profile page has her posts where she discusses it. Another thing my wife has been taking is a product called Theracurmin (supposedly a super curcumin) for inflammation. Inflammation causes long term bodily damage in pain sufferers. She is guardedly thinking that it has helped her so far. Like many here on Connect she has tried many things looking for relief and is still on the hunt after 6 years. In your wife's case I find it a hopeful sign that they have ruled out peripheral neuropathy. PN is usually intractable and chronic with no cure for most. But I know you guys would love to at least have a diagnosis. It's so frustrating to be in pain limbo with no answers. My heart goes out to you in a big way and I hope you are able to find answers and more importantly, relief for your wife's horrid pain. Best, Hank