Hello, I know this is a rare condition but you sound like my twin. I also was misdiagnosed several times before my confirmation but I was persistent in my search for answers and a cure. I choose to call it my "dis-ease" versus disease. It has been very crippling for me as well and I am on depression meds (seeing a therapist). I was in the clinical trial which consist of an infusion which is now FDA approved Brentuximab. I have tried methotrexate (absolutely did not work, can not believe they have had you on this for 9 years). I have tried Targretin , nitrogen mustard, PUVA and the list goes on. Brentuximab works (infusion is a painful process for me, just being honest) temporarily but stress is a main factor. The condition is stressful so that is an oxymoron. Meditation and long walks help but you have to devote time an energy to it (I still work so the walks are a bit more difficult to get in but I try to make time most days). MD Anderson has the best doctors in the world (personal preference, been seeing them so long that the team is practically family) and the advances in research are extraordinary. I patiently wait for a cure (it is coming but slowly because it is rare and the test populations are small). The sun is a shower of healing in this case (it's like having PUVA treatments for free). I hope this helps. I know this may sound crazy but I'm just glad to see I'm not alone. My family and friends have observed my painful experiences but they don't know what this feels like. Now I see that I'm not alone and we will all get through this together.