[MominPainRSD]

Hello to all!!
I have avoided posting a thread about this, hoping it was just a flare or would calm down with meds, but I am becoming desperate and need some advice or some words of comfort at least.

To all who are new, my RSD began after ankle surgery December 3 '08. I was diagnosed 10 days later with the symptoms only in my left foot (on the top). Since then, it has spread to the right foot, to the bottoms of both feet, to both hands, now the color changes are up to both knees, both knees are swollen (they look like they have a golf ball in them), and I am having random burning sensations up both legs to my pelvis. The majority of the spread has occurred in the past month. Almost every day I wake up with more pain over more area. My hands are so swollen, I've had to take my wedding ring off. They are usually burning HOT to touch. My feet are usually ice cold to touch but BURN like they are soaking in battery acid. It never stops. The stabbing pains come and go. The shooting pains come and go. My feet hurt so badly I cannot walk anymore. My hands hurt so badly it gets hard to type (why I haven't been on the forum as much lately) and I have a hard time writing or holding a fork to feed myself.

I am now on Cymbalta 120mg (though I may need to go down on it.....my blood pressure and pulse have skyrocketed). I am on Topomax 50 mg. I am having to take Vicodin every day (which I had avoided doing until recently) just to take the edge off. I now have a low grade fever and headache (no other symptoms other than shaking and tremors.....which could be med related).

I am in SO much pain. The Pain Doc cannot see me until March 26th and wants to see how I adjust to my new meds anyway until then. He keeps pushing for the SCS which I DO NOT WANT and CAN NOT AFFORD. I have no other options of docs within 2 hours of me. I simply do not know what to do???

I read about the Ketamine cream on here. Does that help with the burning? What pain meds do most of you take? I am DESPERATE for help. We are trying to get me a wheelchair (motorized......I cannot use my hands to push myself) but need a script for it for insurance to pay for. Nothing can happen fast enough. I literally cannot leave my house now. I can barely leave my bed.

I try the Epsom salt soaks. I can't say they help much. I burn so much on my feet, I cannot bear it. We are about to lose our house and COBRA. No one else will insure me with RSD until my husband can get a job. I am so desperate and under so much stress......I'm sure that is why I'm spreading so fast, but I can't help it.

One good spot of news (literally). I managed (actually, it was my husband's doing) to get the local TV news here to do a story about RSD!! They came out and interviewed me and my husband for 1 1/2 hours last week and they're going to run a 2 part segment next Tuesday and Wednesday!! I am determined to do whatever I can to get "OUR" RSD name out there!!! They took video shots of my black/blue feet and my red/blue hands and I talked about how we need more research to be done and to raise awareness of the disease!!! I hope I did ok and I'll let you all know how it turns out.

In the meantime, ANY help anyone could offer would be so much appreciated. I am usually more careful about how/what I post......I am just in so much pain and scared and desperate and spreading like wildfire. Thanks and gentle hugs to all!!