Hey it's Renee again medical marijuana is legal in Massachusetts. Please look into it….it helped so much.
Chronic pain, Neurology (brain and nervous system)
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.
Hi Mark! I'm Renee. We sound like 2 peas in a pod lol. U have 2 try and laugh at something with this horrible disease!! I was diagnosed a little over a year ago. I started with a broken ankle 6 months b4 my life changed forever. I made it through a very long journey with m y ankle 9 months in a full boot. I was so happy to start physical therapy. But my foot and leg started to turn purple and swell. Then I went 2 my orthopedic surgeon and he happened 2 have a co worker who research ed crps 4 two years. They immediately sent me 2 a pain management doctor. I got 2 nerve blockers in my foot and leg and it worked. Little did I know how this disease totally is like nothing else. Jumped to left hand and arm with in 2 week s. Nothing worked gabapentin a total joke. Then nerve blockers no luck. Hand was in atrophy and my doctor booked and immediate trial spinal stimulator implant. I wa s about 2 lose my hand and scared as shit!!!! The trial gave me my hand and ar. Back within 3 hours I was amazed
He booked me for an implant 4 days later. The surgery was tough and recovery. But it was great, until it jumped to other arm within a month. The put 2 titanium leads in so the were able 2 just turn it on. Unfortunately it's now in my spine. But I can control some pain in hands and arms. I also keep a pain journal . My state has medical marijuana which has been a life saver.
U can talk 2 me any time. Keep some faith. I also due allot of medical research I do, so if u want 2 find out anything I can try to help!!! Best of luck..and I am only a few years older than u.
I loved your talking about medical marijuana!!! At my dispensary ,that looks like a high end spa inside lol, they are amazing, knowledgeable, caring and the pharmacist always helps when I'm having an extra bad pain week, weather effect s my disorder horribly. Any way when I go there I always feel so cared for, I wish these wonderful helpful people could teach the like 50 docs I've seen. Also I'm always the youngest person there at 45!!! No joke they of all ages most I'd guess in their 60's -80's. And it's great they can sit in a safe environment talk to one another about what works for what and NEVER feel like they are doing something wrong!
I have crps type 1, was diagnosed about 2 years ago. Broke my ankle in 3 places and that's where my nightmare began. I was extremely lucky to be diagnosed early. I tried gabapentin , nerve blockers , but they all failed. I have a spinal implant and it saved my hand. Mine jumped quickly from leg to arm then after implant to other arm, but they had already put leads in for both arms. Unfortunately now it's in my spine, I use medical marijuana to help when it's really bad. I also keep a diary of every thing and pictures. I try and tell others that have it to really enjoy the days when u feel good. Do something special for yourself!! I'm here to listen and compare whatever anyone has to say! Keep in touch if you want. I'm always checking the posts . Good luck!!
I would say the pain is not possible to describe. I do mine on a scale of 1to 10. But the pain itself could be burning, tingling, or stabbing. I write every thing down every day . I write down the weather, how much stress I have any changes in my health. This disorder sucks. No one person I've spoken to on this forum seems to say the same thing. So I only can pass on what mine is like. I also have several other health issues. So I just go day to day. And try to find a good day and do something special for myself…I'd suggest you try the same. Keep talking and best wishes.
Hey I'm Renee. I was diagnosed 2 years ago. After I broke my ankle and was in a boot 4 8
months. Sounds familiar! My orthopedic surgeon couldn't understand why all the xrays show it was healed. But my foot was so swollen and purple. I forgot to mention I've had undiagnosed hives for the last 10 years. Seems too much to b a coincidence.