Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

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.

@colleenyoung

Hi 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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I agree.

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@dstewart318

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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I 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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Hi 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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@bikerchicl

Hi 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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I 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.

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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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@bikerchicl

Hi 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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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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@bikerchicl

Hi 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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Hey it's Renee again medical marijuana is legal in Massachusetts. Please look into it….it helped so much.

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@bikerchicl

Hi 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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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..

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@barbbie

Has anyone had success doing exercise? If so, what kind have you done that has been helpful?

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My doctor told me that using a low-impact machine or low impact exercises would be good on my body my RSD is in my right upper extremities that going it's going into my Reds and down my spine now I got to figure out if it's spreading to my left side because I'm starting to get the same pains and burning feeling on my left side so I'm scared it's spreading I know it's really hard to move and try to do physical therapy and everything due to the pain I haven't been able to do it yet but I spoke to him about the machine called the gazelle it's a low-impact machine and he said that would be good if you want you can always talk to your doctor about it I don't know where your CRPS is but they say to that when you exercise it releases the endorphins is which is always a good thing good luck with everything

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@bikerchicl

My doctor told me that using a low-impact machine or low impact exercises would be good on my body my RSD is in my right upper extremities that going it's going into my Reds and down my spine now I got to figure out if it's spreading to my left side because I'm starting to get the same pains and burning feeling on my left side so I'm scared it's spreading I know it's really hard to move and try to do physical therapy and everything due to the pain I haven't been able to do it yet but I spoke to him about the machine called the gazelle it's a low-impact machine and he said that would be good if you want you can always talk to your doctor about it I don't know where your CRPS is but they say to that when you exercise it releases the endorphins is which is always a good thing good luck with everything

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My CRPS is in both feet, my left knee, and left butt. I just rediscovered a video for exercises for people over 55 or with Parkinson's and they are all done from a chair. I did it about six days ago. Even with that it was painful and some I couldn't do as I also have been dx with Stiff Person Syndrome and anything dealing with my right shoulder area can set off contractions body wide. I am going to try again today. I know it is important to keep moving whatever one can and to delight in the fact that some days are better than others. Thanks for responding. Just as a side note – I haven't been successful in finding PTs who know how to deal with my CRPS, myofascial pain, Stiff Person Syndrome, Degenerative Disc Disease, and small fiber neuropathy.

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@mam14

I'm sorry to hear this. I can't imagine 20 years of this. I'm glad that you have found help. Where do you live?

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Hi I'm so sorry that u have had this for 20 years can I ask how u cope what do u do I'm desperate I've tried everything that I possibly could nothing works dr believe I've had it for about 10 11 years I've got diagnosed about 2.5 3 years but three out all these years I've tried everything acupuncture water therapy mirror Imaging the psych stop all different types of medications Blox surgeries and the only thing that seems to work and it sucks I have to say it is pain medication but due to the opiate epidemic I can't find a doctor to help I can't even leave my house getting in a car makes it so much worse I lost so much stuff from because of this I do not have a quality of life and I'm only 36 years old if you can suggest anything that helped you could you please let me know and again I'm very sorry you're dealing with this to

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@barbbie

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..

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I have CRPS in my right upper extremity it started in my elbow it goes into my neck and down my right side of my back but lately I've been having a lot of pain probably for the last 6 months a lot of rib pain and chest pain on the right side and I don't know if that's spreading or not but you're the first person I spoke saw that pause the pain in the rib cage in the breastbone I really need it a good doctor I live in Mass I saw that you go to a doctor and Mass and you come from New York one of my issues is I've wanted to go to other doctors out of the state but I take MassHealth but I'm starting to see that some of the doctors in Rhode Island by taking MassHealth so I'm trying to go there and find a good doctor but I really want to find a doctor that knows about RSD cprs I'm glad you found a doctor that takes care of you and knows what he's doing it's always helpful good luck

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