Hi I'm Renee I live in the Philadelphia area. I was diagnosed about 2 and a half years ago. My struggle is difficult as well. Once I got diagnosed I read everything I could get my hands on and medical journals. I unfortunately have bipolar and another autoimmune disorder. So I've been to neurological, rheumatoid, psychiatric doctors to get a spinal implant that was a miracle. I was so close to losing my hand. I did the trial and within a day my hand went back to "almost " normal. I have an I pod that controls both of my arms. Weather and stress play a huge part in the control of my crps. Obviously being bipolar I understand the horrible days of depression and hopelessness. Which then makes the crps worse. It's in my left leg, and both arms. The other day I fainted from the pain, I woke up to my 16 year old yelling my name and asking if I was alive...lol.. unfortunately these r the things that go with the disorder. In Pennsylvania medical marijuana is legal!!! It only started about a year ago and is amazing for the disorder. No opioid will help. They are for pain, what we have is very different more like phantom pain from an amputation. No one can see it no pure diagnosis, yet it feels like you are going to die. The marijuana helps take your mind down a few notches and you can take it any way you feel comfortable. I use a vape pen and if I'm in the hospital I use pill form. Reach out to anyone who will listen! The people in our forum are amazing. And I get it I'm only 45. Feel free to ask for a private chat anytime or just in the forum. The people have such similar stories. The more we reach out to each other the less u feel alone.

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