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.

HI THERE I am exhausted trying to figure out what chronic pain syndrome means too...my diagnosis for now is 'hypersensitivity of the central nervous system' but this all started with tingling and burning sensation in 2002 and now I have all over limb weakness and walk with a walker when out side of my home...no one is addressing the leg weakness, cramping feet and hands, spasms in my calf and butt...I think its MS and I read that chronic pain from the CNS can turn into devastating diagnosis....has anyone suggested this to you...as I don not accept the diagnosis of chronic pain syndrome of any kind there has to be more to it!
keep in touch.

Yeah, I don't really accept this either. It's like saying "you have a virus" instead of saying "you have mono" or something specific. I've been looking at the RSD symptoms, and I fit all of those, but we all know that so many of our symptoms match a bunch of things.

CPS isn't easy to define/explain, and isn't necessarily any single condition (many conditions may fall under it), but as I understand it, (and I think I mentioned this before) it is a psychosocial disorder that occurs in some patients with (noncancer) Chronic Pain in which symptoms of the pain consume the attention of the patients and becomes incapacitating. It often/usually involves 2 or more co-existing pain conditions or wide spread generalized pain.

There's actually more to it than just the DEA. E.g. spoze a MM patient (not talking about you because you don't have any ) forgot they took their opiate, and took them again... or several times. Not good.

If you'd like, you can pick a lot of brains here about neurostimulators in the SCS & Pain Pumps forum.

Doc