I went to UCSF last week and the neurologist dx'd me with CPS. I've been trying to read about it, specifically the "syndrome" part of this. It kind of sounds like I've just gone looney and made my body hurt, but then I tell myself that I keep feeling pain when I'm distracted, when I wake up, when I get a new symptom out of the blue, etc. Tremor in my right hand started in July, and I know that's my brain doing it, not my worry.
In late 2011 I had a surgery and was burned by acetic acid. I mostly healed, still have scars and some pain on the scars. In mid 2012 neuropathy started and it's just been downhill since then. I have major fatigue, brain fog, burning/buzzing mostly in my feet (but I'm on meds that it would be my whole body without the meds), my feet are constantly cold and they hurt more when it's cold, the tremor, a little issue with balance. My MRI was super clean and they said I don't have MS. Blood tests are all totally normal.
Neuro last week said that yes, for sure the trauma triggered this CPS issue.
I've been taking my meds and supplements like I should, including magnesium, B12 and D. The magnesium helps my twitches. Taking oxcarbazepine for the neuropathy. Latest doc said that the neuropathy isn't true neuropathy because I can feel warm and cold, no numbness, but he said if he did a skin biopsy he's sure at least a little would show up.
I work full time, have a daughter and a husband. The DH has gotten better about helping out at home, but it's a struggle. I feel like all I do is work, never have time for me, and if I do I zone out try to get my brain to relax, but I just can't get there. I have never been able to meditate. I tried therapy and it just made me mad about things I can't change (my doc said I was too smart for therapy, ha!)
I do have an appt with my pain doc on Wed. I need to go over with her about a long term treatment. She mentioned a neurostimulator when I was in last. My DH met a woman with CRPS that has one, and that I'll meet this coming weekend. I'll be able to pick her brain about a lot, hopefully. My doc said she won't prescribe opiates because I smoke MMJ. Stupid DEA!! But I know that my body won't deal with opiates well, and does well with MMJ. It's just that I work and can't do it during the day. And even then all I do is get me to a place so I can function, it allows me to get my butt moving.
Due to the hospital burn
, I'm waiting for a medical settlement
My PCP was ready to write me off work when I was in there last. I really need to take time off, but I can't do it right now. I need a long term plan. My work is small and really needs me. If I need to leave I want to be on good terms and be setup correctly. I really think that one of the only ways I'll get back to reasonable shape is to take time off work to both exercise and rest. I've been told exercise is a really good thing with this. I rarely do that because my feet hurt ALL THE TIME. I wish I had a pool, the gyms around here are way too expensive. My DD has gotten me to go bike riding a bit, just around the neighborhood. It helps, but then I want to take a nap.
I really was hoping that the oxcarbazepine was just only kind of working, but alas, I didn't take two in a row and I felt it really horribly. I know the pain is still there, just masked. The depression is under control, for the most part. I don't really have anything for breakthrough pain, except the MMJ and rest. I really wish I had a non-opiate I could take when it was really, really bad.
I would love to know others who have this syndrome, what you've done about it, if you've been mostly healed, etc.