Originally Posted by momzpeachy

Thanks to all that replied

I am trying to enjoy the nice weather we are having this weekend. Yesterday was a nice sunny day and forgot sunscreen. I ended up with a bit of a sunburn on my shoulders. I didn't even notice it. My family keeps asking if it hurts but I say no..the burning pain I am having is far worse and I don't notice the sunburn. Today my system is out of whack. The fans on are driving me nuts every time I walk under them or near one. I feel like I'm on fire and the breeze is HORRIBLE! I am having issues with walking now also since the RSD has spread to my left foot. I seem to be limping alot and having trouble using the left foot. It gets numb and burns...kinda hard to explain. I seem to be walking on the side of my foot also. It's hard to put my foot flat. The burning is also starting on the left arm as well. The Dr said I have full body RSD and I guess this is what goes with it. I just cried some this morning because i am so limited to what I can do.

I am 36 yrs old and have teenagers at home. I am currently on neurontin 800 mg 3x a day but now taking a bit more because that doesn't quite cut it, fioricet for the headaches and pain, 60mg cymbalta to help with nerve pain. I have been lucky and not been hit with depression yet. I am a very tough and stubborn person. I am more angry then anything. I do get upset and down but depression has not set in. I've been fighting this whole time but I am starting to get a little tired of fighting when I see I can't win the fight.

I do have an open w/c case. I fought hard for that also. They put up a good fight for a year and a half but they lost on everything. I won my case based on TOS but now I also have RSD thanks to the TOS so I'm afraid of a new battle. We are submitting the bills to w/c but we'll see how this goes. I was sent for an IME in May and it was funny..the Dr who saw me was definitely seeing issues. She wasn't even able to touch me..I jumped away. She then saw my fingers turn blue and I was sweating like crazy and it was cold in there! She was wearing a sweater and I was wearing a tank top! She then asked me if "anyone has ever mentioned CRPS/RSD to me" I was a little stumped...now a little over a month later..I'm in the hospital and diagnosed with it!

I have decided to move forward with the ketamine treatment but I'm on a list and it should start in the fall. No other forms of treatment has worked. I have been through endless PT sessions, nerve blocks, accupuncture, meds and more meds, tens unit, chiro, etc, etc...nothing has worked! I am a mess and need help. The RSD progressed rapidly over the last few months and now we are all worried about it affecting internal organs since I am losing hair, have vision problems, IBS, nail and skin changes, etc. It's a mess and I can't see living like this forever. I have some family members who just don't understand this and are not being supportive. My husband and kids do understand because they see what this is doing to me. They don't like seeing what I'm going through and they are VERY worried but they are helping as much as they can.

It upsets me because this does not just affect me..it affects everyone. I'm not the same person I used to be. This changes everything.

Thanks again for your support and if anyone is in PA and would like to exchange phone #'s and talk some more..pm me ...I'm getting pretty lonely these days.