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Want to talk with others. Have you found relief from CRPS?
I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.
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Hi. My name is Dana. I am 43 and dont have words for the amazing similarities I have been finding in the posts of those fellow CRPS sufferers. I have to even resort to the microphones to type my messages because the pain it causes me to type with my fingers. I haven't put much about my story and what I've experienced with CRPS because it's just downright can be too physically painful. However I see how so very important it is that we reach out to each other in support and simply For the Love of our fellow men and women. I would be glad to share any details of my testimony and experiences with the hopes someone else May learn and mostly share encouragement that we are not alone. I am open to even phone calls or texts so we can get a better perspective. My name is Dana Stewart I am a 43 year old mother of a 12 year old and 6 year old. I live in the Atlanta Georgia area. Your contact or contact from anyone that shares our same disease is welcomed....
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1 ReactionHi Dana and welcome to Connect.
Thank you for all the support and information you are offering. Please note that I removed your personal email and phone number from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option. I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
Dana, you mention that you use voice activated technology to write your message because typing causes too much pain. What tool do you use? Your message has virtually no typos. I find the voice activated software to be quite unreliable and would like to know what you use.
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3 ReactionsI agree.
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2 ReactionsI didn’t know there is a ribbon for CRPS awareness. Thanks for sharing, and I hope you have more pain free days.
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1 ReactionHi I was wondering about the bone pain with the CRPS they believe I've had CRPS for the last 11 years but I just got diagnosed two and a half years ago the nerve pain is extremely bad but what I really can't stand is the ongoing bone pain it feels like somebody's literally chiseling away my phone in my right arm that's where my CRPS started and now I can feel it on my right side of my rib every breath I take in is extremely hard I have to take short breaths because if I take in a deep breath my ribs feel like the crumbling I've tried seeing doctors about the CRPS I live in Massachusetts and due to the major opiate epidemic he will not put me on medication I have tried everything under the sun to not be on narcotic pain medication but nothing has worked I am completely housebound and bedridden I cannot take a shower and get myself dressed I need help with everything I just got out of the hospital for suicide thoughts I am struggling really bad if anybody lives in Massachusetts when they are Rhode Island I've been trying to look for support groups in some type of doctor if anyone knows any I'm scared and suffering I'm only 36 years old and I have no quality of life if somebody knows of any support groups or anything that would be able to help can you please get back to me thank you so much
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2 ReactionsI have horrible bone pain. Nothing seems to help. It is primarily in my legs but I can feel it occasionally in my arms as well. I take prescription vitamin D and this helps some. Don’t give up finding a knowledgeable doctor. It is difficult where I live in Alabama. CRPS is rare here for sure.
Just writing to encourage you to continue your search for resources. I hope someone on East coast from our community can help with resource. I’m in west coast so I have nothing to share but hope and prayers that your situation improves.
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1 ReactionHi 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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2 ReactionsHey it's Renee again medical marijuana is legal in Massachusetts. Please look into it....it helped so much.
I see a doctor in Pittsfield, MA even though I live in Albany, NY because he is a DO and does his DO thing as part of being my PCP. His gentle healing hands have helped me many times in the past 11 years. His other specialty is neuromuscular training. I have costachondritis as well as CRPS. It is pain in my breast bone and rib cage. He does a great job for me in knocking down the pain. That's not the only place. I also have myofascial pain and he is great with that as well. MA seems open to OMM. It would be great if you could find one near you..