CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body – her nerves are on fire… it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense… we keep searching for help and guidance… since many do not understand this horrible affliction…. thanks for any advice….

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@rebeccamiller

Does anyone else in the group have CRPS/RSD? What is your primary site? Is anyone’s primary site their jaw? (Me). Has it migrated to other body parts? When were you initially diagnosed? How does CRPS affect your daily life?

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Hello @rebeccamiller, I merged your discussion with an existing discussion titled "CRPS – anyone suffering with complex regional pain syndrome?" I did this so that you could meet the many members discussing CRPS, as well as read through their previous posts to learn more about their experiences with CRPS. @rebeccamiller, if you are comfortable sharing with the group, what sort of things have you tried to cope with your diagnosis and the pain?

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I am Carolyn. Started with pain and burning hands, arms, shoulders, lower spine thigh sometimes down right leg to foot. Had Durst implant in back..burning gone.
Pain still here, slight relief. Scary to read about it. Doctor said has not seen anyone with .stage 4. Thanks to GodI do also have congenital spinal defects which are worsening but too old to go thru more pain for it. Had several surgeries. Enough!

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@rebeccamiller

Does anyone else in the group have CRPS/RSD? What is your primary site? Is anyone’s primary site their jaw? (Me). Has it migrated to other body parts? When were you initially diagnosed? How does CRPS affect your daily life?

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Am new to this forum as of today. Friend suggested it as a possible "support system" for me. I developed CRPS 3 years ago after fracturing my Rt ankle on both sides. Had typical ankle repair surgery with hardware, but then needed hardware removed because I couldn't tolerate it – as the pain was tremendous. My whole life changed because of my pain. I was just "officially" diagnosed with CRPS a couple of months ago despite having many of the classic symptoms of it: intense pain lasting longer than 6 months, color and temperature changes to my Rt foot, muscle spasms and atrophy. Had many doctors and physical therapists tell me " I think you might have CRPS" yet none were willing to make the definitive diagnoses. Seemed like they were afraid to but I don't know why. So long story short – I spent almost 3 years thinking "maybe it's all in my head, maybe I'm not trying hard enough to get better, maybe I need to suck it up when it comes to the pain". Feel very cynical when it comes to the medical community now. My ankle pain has spread to just below my knee- like a "knee sock of pain". It has affected all parts of my life: my livelihood (don't have one anymore), financially, emotionally, mentally. I have lost friends and family because of my fluctuating emotions related to pain. I try very hard to keep it all in perspective as I don't want or need anyone's sympathy. CRPS is not a death sentence – however it is a"life sentence" and my goal is keep my mobility for as long as I can and not let CRPS rob me life's joys that are still available to me on a daily basis.

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Welcome @carolyn37 and @santafe.

@carolyn37, is the Durst implant an implanted electric stimulator? It is great that it helped with the burning sensations, I think the other members in this group will be happy to hear that. It is unfortunate it only helped slightly with the pain however. Are you currently managing your pain any other ways?

@santafe, if you are comfortable sharing, what happened to your ankle after you took the hardware out? I am no stranger to ankle issues and pain myself as I had end-stage arthritis in both of my ankles and have fused one of them to date (I am putting off the other fusion as long as possible due to the pain and rehab). Now that you have the official diagnosis, what sort of things have your providers suggested to you for managing the pain and symptoms?

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@JustinMcClanahan

Welcome @carolyn37 and @santafe.

@carolyn37, is the Durst implant an implanted electric stimulator? It is great that it helped with the burning sensations, I think the other members in this group will be happy to hear that. It is unfortunate it only helped slightly with the pain however. Are you currently managing your pain any other ways?

@santafe, if you are comfortable sharing, what happened to your ankle after you took the hardware out? I am no stranger to ankle issues and pain myself as I had end-stage arthritis in both of my ankles and have fused one of them to date (I am putting off the other fusion as long as possible due to the pain and rehab). Now that you have the official diagnosis, what sort of things have your providers suggested to you for managing the pain and symptoms?

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Thanks for your reply. I have tried & continue to try Physical Therapy. Also tried acupuncture, Bowenwork, TENS unit, Egoscue method of excercizes, sympathetic nerve block, meditation and of course medication. Take low doses of Neurontin, Baclofen and Tramadol as well as Ibuprofen. Had been on Cymbalta which caused short term memory loss, impulsivity and anger! OMG! My pain doctor offered a spinal implant, but I want to wait until the "science" is better on this invasive method. I hope your pain is bearable. I had to retire as an RN because of my ankle. But from the ankle patients I remember: some had ankle fusions that provided pain relief and could even walk normally, while many others continued to have ankle pain and used splints and/or walkers or wheelchairs. Have resisted anti-depressants because of my bad experience with Cymbalta. Anyone with thoughts or experiences taking an anti-depressant for CRPS?

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@santafe

Thanks for your reply. I have tried & continue to try Physical Therapy. Also tried acupuncture, Bowenwork, TENS unit, Egoscue method of excercizes, sympathetic nerve block, meditation and of course medication. Take low doses of Neurontin, Baclofen and Tramadol as well as Ibuprofen. Had been on Cymbalta which caused short term memory loss, impulsivity and anger! OMG! My pain doctor offered a spinal implant, but I want to wait until the "science" is better on this invasive method. I hope your pain is bearable. I had to retire as an RN because of my ankle. But from the ankle patients I remember: some had ankle fusions that provided pain relief and could even walk normally, while many others continued to have ankle pain and used splints and/or walkers or wheelchairs. Have resisted anti-depressants because of my bad experience with Cymbalta. Anyone with thoughts or experiences taking an anti-depressant for CRPS?

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@satafe, thank you for sharing more about your diagnosis and what you are trying for pain management. I would like to invite @janetdh to share her experience with taking cymbalta for RSD/CRPS.

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@JustinMcClanahan

@satafe, thank you for sharing more about your diagnosis and what you are trying for pain management. I would like to invite @janetdh to share her experience with taking cymbalta for RSD/CRPS.

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Sorry couldn’t respond quicker, had little trouble logging in. My psychiatric doctor switched me over from Wellbutrin to Cymbalta when I was diagnosed with CRPS in 2015. Cymbalta has the advantage of also helping to address nerve pain in addition to depression. Of course each of us can interact with medicines and treatments differently, but I have been able to tolerate it. Feedback from the many, many doctors I have visited re: amputation is “don’t do it.” Can make your CRPS much, much worse. (My CRPS was a result of a right ankle fracture that went bad.) I also participate in 2 other on-line sites specifically for CRPS that have found helpful. One is out of the U.K., but has folks all over the globe sharing (6,000+ members). As new symptoms emerge, it has helped me so much to share and see if others have experienced the same. The other is a national group out of Connecticut. Here are sites if you’re interested (Justin, hope it’s o.k. to share.) http://www.crpscommunity.co.uk and RSD/CRPS Friends in Pain (org is Reflex Sympathetic Dystrophy-A Place for Support-Stop the Burn. May you have a low pain day.

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I have retractable CRPS in my left foot and ankle getting much worse with age (I'm 63). It's so bad at times I would amputate if I was certain it would take all the pain away but I've read sometimes it doesn't. I have been desperately looking for someone to consider cutting the nerves to the area rather than amputate but have had little success finding a doctor to help. Would you please tell me who you used. I tried to send a private link but the site won't allow it since I'm newly registered. I'll keep checking back here in hopes you will respond. Thanks so much, Jimmy

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@drarnold

I have retractable CRPS in my left foot and ankle getting much worse with age (I'm 63). It's so bad at times I would amputate if I was certain it would take all the pain away but I've read sometimes it doesn't. I have been desperately looking for someone to consider cutting the nerves to the area rather than amputate but have had little success finding a doctor to help. Would you please tell me who you used. I tried to send a private link but the site won't allow it since I'm newly registered. I'll keep checking back here in hopes you will respond. Thanks so much, Jimmy

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My Dr is in RI. He has cute 3 of my nerves. 2 were successful. He would like to go back in and cut the nerve again. I am in stadge 3. The tissue in my leg is now detariating which makes surgery hard.

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@drarnold

I have retractable CRPS in my left foot and ankle getting much worse with age (I'm 63). It's so bad at times I would amputate if I was certain it would take all the pain away but I've read sometimes it doesn't. I have been desperately looking for someone to consider cutting the nerves to the area rather than amputate but have had little success finding a doctor to help. Would you please tell me who you used. I tried to send a private link but the site won't allow it since I'm newly registered. I'll keep checking back here in hopes you will respond. Thanks so much, Jimmy

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Dr Tabaddor. He is very knowledgeable with CRPS. He has helped me alot

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Thank you so much for responding with your Dr's name. Please tell me his first name for Google search shows a Ramin and a Kamran Tabbador. Thanks, Jimmy

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I do. My name is Samantha. I have Reflex Neurovascular Dystrophy – its simaler, and right now I am being managed through gabapentin to help with overactive nerve issues. Mainly it was caused by an accident. So far, there is nothing for me to do – and there is no treatment for me because I have a massive concussion two years ago, and I was diagnosed nearly 6 months later.

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