CRPS

Posted by mam14 @mam14, Mon, Feb 4 10:10pm

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.

@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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@rsnowflake

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

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I smoked it at night because I can't sleep due to the pain even though I'm on a lot of sleeping medications but it makes me completely Stuck on Stupid and exhausted and I'm already exhausted during the day so I can't really smoke it so I'm trying to figure out other stuff too I tried CBD oil CBD cream that you put on your body the mouth drops smoking it and bathe but when my nausea is so bad and my nausea meds aren't working I'll take a hit during the day just to calm it down but like I said it makes me so tired I try and do what I can around the house but I can't really do much so I end up sitting on the couch or in my bed all day because the pain is just so bad especially if I get up and move around more

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@barbbie

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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Last summer when I had surgery on my elbow because it kept dislocating by itself so they had to fix it and yes it was on my affected limb I had to do pt after surgery and there was on a couple of PT's from Mass general that know about RSD so I don't know where you're from but Mass General in Boston they might be able to help you and also my surgeon was out of Mass General and he got a service of nurses and PT's to come to my house if you live in Mass I can always get that information for you and see if you qualify for them to come to your house because one of them specialized would CRPS if I can help you in any way please let me know I understand what it's like

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@mam14, @JustinMcClanahan, I have been trying to figure out what has been going on with my feet since 2005. I have researched like a mad woman and my gut tells me I have CRPS. I really hope to heck that I am wrong. I have taken pictures of my feet this past week for documentation. Most of the time they feel cold to the touch and hurt the most in cold, damp weather. If I dangle my feet down and leave them in that position for a few minutes they turn a dusky purple color and get very cold. This brings on a lot of nerve pain. I also have pics of when they feel quite warm and turn red and look swollen. This happened 14 years ago when I had a slight ankle sprain and the pain was very disproportionate to what was only a minor injury. Then soon after the pain spread to my left foot. I saw many doctors who all had a different diagnosis and no one could really figure it out. I quit seeking treatment out of frustration and disappointment. My PCP was very kind and tried to get a referral to go to Mayo but of course it was denied by my HMO plan. I just lived with it and gradually through many, many years it got progressively better until this past January of 2019 my big toe started getting sore and soon all the crazy nerve, burning and all other symptoms erupted again. My Podiatrist was perplexed because my X-ray of left foot showed slight osteoarthritis and MRI looked pretty normal as well. I see the Neurologist on Friday and I will bring in these pics I took and I hope these will help with getting a definitive diagnosis. I saw a Pain Management doctor last week and he doesn’t feel I have CRPS just because I let him touch my foot and didn’t immediately back away when he tried to. From what I have read and understand some people with CRPS can endure light touch. But when he started squeezing my big toe joint and my toes that hurt like crazy and into the entire next day. I would just like to know what others think that have CRPS. I know everyone is different with this disorder. Thank you. -Laura

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@struggler23

I had an undiagnosed 3rd degree tear of my L calcaneal cuboid ligament (heel bone); so I walked around in severe pain, going from 1 specialist to another for 3 months before an orthopedist diagnosed both it and the CRPS ( then, 1995, more commonly known as RSD). Put me in a foot, ankle leg brace for 2-3 months, and put me on gabapentin.

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The same thing happened to my 32 year old son almost 5 years ago.We live in the Atlanta area and I found a great support group I went to to better understand CRPS
YES,there does not seem to be many Drs who deal with this condition.Lyrica seems to help a little but ins.doesnt want to pay for it.I found support group online,very helpful to connect with others dealing with this condition.

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My husband has had CRPS for years and finally found a wonderful pain specialist in Jacksonville, Texas who created a protocol including a process called Lysis of Adhesion. The improvement has been miraculous. It did take several injections, but the difference is incredible. Hope this helps.

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I have had CRPS for 11 years to the best of my knowledge. I had surgery on my right foot. The doctor fused my toe in a poor direction and shortened my second toe but caused it to cover my third toe. In the process he used metal to hold things in place. After complaining of pain for 8 months I went to a podiatrist who operated and removed the metal which she declared was too large for my foot. All of that set off pain that hasn't ended but increased in area – also moving to other foot, knee, and butt. It's the feet that give the most problem. I use a power chair in the house but have no ramp to get it out. Standing is very painful, more so than walking. I had my second spinal cord simulator implanted last summer. It is more helpful than the first one I had done in 2012. But there is another implant surgery my pain management doctor is going to be trained in that will deal just with the feet. Anyone have it?

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