I’m so sorry to read your post. I think many of us have felt (if not currently feeling…) similarly. I was 30 at my onset as well (32 now). The first year was the scariest for me I think because of the shock. I didn’t know wtf was going on, and just kept thinking it was a nightmare I would wake up from.
One concrete thing that helped me was, reading all the literature on EM and SFN I could, and just trying to understand it all. Because for a long time, it seemed like I couldn’t rely on doctors to give me direction. It is so hard feeling so out of control. For me at least, reading obsessively about EM, SFN, and just generally how the blood vessels / nerves worked, I felt like I was able to have some control back, and felt less panicky … even if it was all in my head … if that makes sense. Also, I get the feeling that, the better I was able to converse with doctors, the more treatments became available to me … unfortunate that that is the way things seem to work. For example, I had brought up the possibility of lidocaine infusions earlier this year after reading about how helpful they were for EM + some people on here. My derm agreed and referred me to a pain doc who sent the order through … While I’m grateful this is an option for me, it is a very queasy feeling, to wonder … what if I never brought it up?
One thing I’ve noticed – It’s very easy for me to feel defeated/hopeless about my situation. Like … very easy. Objectively, if I try to view my situation from someone on the outside though, I don’t know if the situation is as defeated/hopeless as I feel, if that makes sense. My best doc I remember had told me a long time ago – that he wasn’t sure that my life would be the same, and maybe I would never find out why exactly this was happening to me, HOWEVER because there are so many meds out there to try (antiepileptics, antidepressants, topical analgesics, vasoactive drugs, … ) he was very hopeful I would at least experience partial relief. I for sure did not feel his hope at all at the time, and often still do not … but i do realize it’s hard to look at our own situations in an objective lens. It’s a tough balance, that I don’t have an answer to – to allow oneself to acknowledge feelings + mourn for what this has taken away from them, while remembering that someone else could look at our situation and feel hope. If that makes sense at all!
I don’t know about inflammation + autoimmune stuff at all (doesn’t seem to be an issue for myself) but my sense is that a rheum is the doc to see for exploring that. Sorry your appt is so far down the line. In the meantime I would try to see if your PCP would be ok prescribing any “EM drugs” and monitoring so time isn’t just being wasted waiting for a doc that may or may not be helpful? I also wouldn’t trust just one specialty either – docs in neurology, dermatology, pain, vascular specialties, might each bring something to the table.
In the meantime keep posting here if it helps you. Take care Dave