[karma13]

Hey peeps out there. I hope you are having a tolerable pain day. I had surgery in Sept. 2012 I am experiencing massive nerve pain in my foot. Dr put me on gabapentin 600 mg 3 times a day. Lyrica too. neither of which do anything at all. I also had a tens machine and had been given lidocaine patches. Such a joke. Surgery was done by dr Steven Raiken at the Rothman Institute in Philadelphia. He released me and said I was healed. I went to a neurologist who had me have a emg. This came back normal and I proceeded to tell dr I was having nerve pain. He wanted to hear nothing. Basically said deal with it.The pain has increased and my scar has become white. Little red spots pop out and it is to the point now that I cannot even put on a shoe. I have been insisting to see another dr. Since this is a workmans comp case I am limited. I decided to go to the hospital for special surgery in NY where I saw a wonderful dr named Mark Drako. He said Rsd. He wanted me to see one of his anesthesiologist who does not take workmans comp. They gave me another name and he only takes ny workmans comp. I am trying to get to a dr that can control this pain. I have blood vessels popping out over the top of my ankle and occasionally I slur my words. I have massive sweating all over my body. I never feel well. Can someone help me with a dr to see in NJ or Pa. I know of this dr swartzman is he the only guy that can help??? I need to see someone soon as this is progressing and I feel horrible. Any advice would be great.

Hi Karma. I'm a newbie too. I developed CRPS following surgery in Dec 2012. I am sorry you have had such a tough time with doctors. I was really lucky because my surgeon recognised it right away and referred me to an experienced pain specialist. I am still seeing both of them along with a physiotherapist.

I'm in London so I don't know of any doctors in your area. Sadly, there are lots of people on here who have been dealing with this disease for a very long time and I'm sure they will have plenty of helpful advice for you.

I'm still trying to figure this thing out myself. One thing I have figured out, though, is that the people on here are wonderful. Their support is priceless.

[Brambledog]

Hi Karma, welcome although obviously we would rather you didn't have to be here, we are a select bunch of lovely people honest...

I'm UK as well, and always feel so sorry for you folks dealing with insurance companies and workman's comp on top of dealing with this horrible condition, which alone is another to drive us all a bit loopy.

Sadly, it's not easy for any of us to find a good doctor that is willing to both work with us, and learn themselves to understand a condition very few really know about. It's a rough time finding someone, but it will be worth the fight, so keep at it until you can feel more confident with someone on your side. Good luck wi the search.

I'm sorry you're feeling so rough, I would say that after feeling really crappy for the first 4-6 months with this, I did very slowly start to feel a bit more human again. A lot is to do with learning to cope better with the things it throws at you, but also I think the disease settles down a bit after initially going berserk. I have good and bad patches now, but more good at the moment. I hope yours eases off a bit, must be a frightening time.

The sweating/body temp issues are fairly common I suspect. I don't deal well with heat or cold now.. Brain issues are also common, there is a thread at the moment discussing the weird things that go on for many of us - slurring speech, not being able to find words, losing focus, all manner of frustrating and scary things. Hang in there and keep believing that you can find a way through this to a full life again It might not be the same, or what you hoped for, but it can still be good...

Best of luck,

Bram.