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.

@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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@lauraj155

@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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Hi Laura. Some of what you described reminds me of my Raynauds and my small fiber neuropathy which are both in my feet as well. I just had a nerve study done on my lower extremities and was dx with severe sensory and motor neuropathy in both legs. Just throwing a few things out there for you to investigate. One symptom that stands out as being CRPS is the pain on standing in one spot for a few minutes. I have a great pain management doc who is brilliant at what he does and in his knowledge of CRPS. Besides being brilliant, he is also familiar with his own pain needs which makes him more sensitive to others. Hope you can find such a doctor.

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@barbbie

Hi Laura. Some of what you described reminds me of my Raynauds and my small fiber neuropathy which are both in my feet as well. I just had a nerve study done on my lower extremities and was dx with severe sensory and motor neuropathy in both legs. Just throwing a few things out there for you to investigate. One symptom that stands out as being CRPS is the pain on standing in one spot for a few minutes. I have a great pain management doc who is brilliant at what he does and in his knowledge of CRPS. Besides being brilliant, he is also familiar with his own pain needs which makes him more sensitive to others. Hope you can find such a doctor.

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I have CRPS and live in Alabama. I travel nearly 5 hours to a neurologist but I’m not satisfied at all with the results. Where are you from?

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@mam14

I have CRPS and live in Alabama. I travel nearly 5 hours to a neurologist but I’m not satisfied at all with the results. Where are you from?

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I live in upstate NY

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@barbbie

I live in upstate NY

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I also don't see a neurologist for this but a pain management doctor.

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@barbbie

I also don't see a neurologist for this but a pain management doctor.

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I have a local pain management doctor but for the most part, I just get prescriptions from him every month. Nothing else has helped. It seems that most local doctors have very little experience with CRPS.

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Hi I was recently diagnosed with crps it was caused by a injury on the job, I fell off a ladder and broke my foot in three places.I had surgery and had a plate and pins put in my foot it was healing ok then my foot starting becoming red and swollen and the burning pain is unbareable.I have seen my surgeon and a pain specialist and have pt three times a week it does improve then flare ups happen and im back to square one,im at my wits end and my medical benefits are running out for it . I am basically being forced to return to work still in pain or I lose my medical and life insurance my only alternative is cobra at a payment of over a 1000.00 a month. Im so lost and pain hurts but I guess I return to work to avoid loss of medical for me and my child who is adhd and on expensive meds himself. kevin I live in wa state

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