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….

@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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@oh_suzie_q

Yes I do. Could tell you all about it! 19 years I have lived with it!! Perhaps longer! I have Chiari. Every nerve feels like it is on fire when the Chiari decides to flare! You can't even scratch your head or hair! Have had the surgeries at John Hopkins in Baltimore for my Chiari. So nerve damage goes right along with it! The surgeries are not one I choose to remember. Zappers are a everyday occurrence! I like call them shockers or bolts! Sometimes, pain management does not even touch them!

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Hi, I too have the ‘shockers or bolts’. I have noticed that if I up my Pregablin x250 gms, that’s one extra pill a day, then the shocks are more intense so I am wondering if it is the Pregablin that are the cause. I must mention this to my pain doctor when I see him. I haven’t seen him for 3 years but I have only recently made the connection when on a few occasions when I had to take an extra pill at night and I had a few very bad shocks. I felt as though my whole body had jerked if that makes sense.

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@samgray1217

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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I broke my ankle in April 2017. It healed quickly but pt wasn't working foot was worse then b4. I lucked out my orthopedic doctor knew another dr. That dealt with complex regional pain syndrome. I tried gabapentin, it didn't work. Got a nerve blocker, and that worked. Unfortunately it spread to my arm and I had 2 nerve blockers. They didn't work. I ended up getting a spinal stimulator, and it was like magic, I woke up to a normal arm and hand. Unfortunately it spread to my other arm. But my doctor put in two leads because of the fast spreading, and we were able to turn it on that arm is good. But again it's spread to a part of my spine that cant b reached by adding g more leads. I'm looking for alternative sources. I'd love 2 talk to anyone who has this very disabling disorder!!!

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@daddylonglegs

I have CRPS . I have just injured my knee by twisting it ever-so-slightly. But because i have CRPS from the hip down on the left leg which is the one with CRPS. It has agravatted the crps. So well i am in extruciating pain now all down my leg rather than just my knee. The leg has a real issue with hyper-sensitivity all the time. Even a wee bang on the leg is 100x more painful than it should be for the injury. Anyone else have the same problem with hyper-sensitivity and terrible nerve pain from a lesser injury? And should i tell my GP i have injured my knee which has intensified the pain in my whole leg. All this whilst suffering with clinical depression and anxiety.
Gosh i really hate this chronic pain disease.

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Struggling with CRPS x 23! Years. Have no answer.. can’t afford my Med . Tried cold turkey and boy do I need an oven now.!Also taking supplements which are expensive as heck, but trying to get off meds which are slowly killing me.! I love some help.

Liked by rsnowflake

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@rsnowflake

I broke my ankle in April 2017. It healed quickly but pt wasn't working foot was worse then b4. I lucked out my orthopedic doctor knew another dr. That dealt with complex regional pain syndrome. I tried gabapentin, it didn't work. Got a nerve blocker, and that worked. Unfortunately it spread to my arm and I had 2 nerve blockers. They didn't work. I ended up getting a spinal stimulator, and it was like magic, I woke up to a normal arm and hand. Unfortunately it spread to my other arm. But my doctor put in two leads because of the fast spreading, and we were able to turn it on that arm is good. But again it's spread to a part of my spine that cant b reached by adding g more leads. I'm looking for alternative sources. I'd love 2 talk to anyone who has this very disabling disorder!!!

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I've gotten books on the disorder I ordered it from barnes and noble, it's called" Positve options for complex regional pain syndrome " by:ElenaJurjis. It's excellent! It gives a lot of medication options, acupuncture several different kinds and treatments. I'm basically trying anything. I already have a upper stimulator, but if it goes into my legs I have no problem going through the surgery again. I was afraid, and my pain is all day. The book talks about therapists who only deal with pain management and know what c.r.p.s.is when you find someone. I had like 5 doctors I go to even after the surgery tried to give me oxycodone for the pain…..they don't get no matter what my brain will continue 2 send these pain out…its not an injury that will ever heal. They say " cbc" lotion on the pain spot might help. Last thing don't give up…it might take a while, but u need to dr. That knows what it is..and a lot of trial and error. Feel free to write back …I'm always online looking 4 new things that might help.

Liked by DanaS

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@rsnowflake

I've gotten books on the disorder I ordered it from barnes and noble, it's called" Positve options for complex regional pain syndrome " by:ElenaJurjis. It's excellent! It gives a lot of medication options, acupuncture several different kinds and treatments. I'm basically trying anything. I already have a upper stimulator, but if it goes into my legs I have no problem going through the surgery again. I was afraid, and my pain is all day. The book talks about therapists who only deal with pain management and know what c.r.p.s.is when you find someone. I had like 5 doctors I go to even after the surgery tried to give me oxycodone for the pain…..they don't get no matter what my brain will continue 2 send these pain out…its not an injury that will ever heal. They say " cbc" lotion on the pain spot might help. Last thing don't give up…it might take a while, but u need to dr. That knows what it is..and a lot of trial and error. Feel free to write back …I'm always online looking 4 new things that might help.

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Hi, I am trying to get some help/advice for my dad. He broke his ankle in two places 7 years ago now. Long story short since then he has been diagnosed with planta faciatius which then years later they said it was actually CRPS. In these years he has had a second operation to try and fix it, cortisone injections, acupuncture, physio, hydrotherapy and evening had some screws removed. Nothing has helped and has only made the pain worse. He has been on so much medication over the years but at the moment his main pain relief is oramorph and codeine. Today he had an appointment with a new surgeon, she said basically amputation is the only option. My dad is fully against this and really doesn’t want to go down that road but is co tangly crippled in pain, completely house bound and depressed. He has put on 5 stone since it happened due to not beong able to move about. He also has specialist inner soles to help as his gait went on his hips. Just hoping someone may know of any medication that may help or an alternative to amputation. He asked about fusing his ankle and they have said it’s pointless 🙁

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@jemlen

Hi, I am trying to get some help/advice for my dad. He broke his ankle in two places 7 years ago now. Long story short since then he has been diagnosed with planta faciatius which then years later they said it was actually CRPS. In these years he has had a second operation to try and fix it, cortisone injections, acupuncture, physio, hydrotherapy and evening had some screws removed. Nothing has helped and has only made the pain worse. He has been on so much medication over the years but at the moment his main pain relief is oramorph and codeine. Today he had an appointment with a new surgeon, she said basically amputation is the only option. My dad is fully against this and really doesn’t want to go down that road but is co tangly crippled in pain, completely house bound and depressed. He has put on 5 stone since it happened due to not beong able to move about. He also has specialist inner soles to help as his gait went on his hips. Just hoping someone may know of any medication that may help or an alternative to amputation. He asked about fusing his ankle and they have said it’s pointless 🙁

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I'm sorry for this negative comment, but…Have you heard of phantom pain? Even though a part was removed, you can still have just as much pain because your brain doesn't know the part is missing. I went to a hypnotist to get some pain relief because I don't want to be spaced out on drugs. As far as I know there is no downside to hypnosis.

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@sadnancy

I'm sorry for this negative comment, but…Have you heard of phantom pain? Even though a part was removed, you can still have just as much pain because your brain doesn't know the part is missing. I went to a hypnotist to get some pain relief because I don't want to be spaced out on drugs. As far as I know there is no downside to hypnosis.

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They did mention phantom pain at one point but are now saying CRPS. My colleague is a hypnotherapist and I have asked her about this, did it help for you at all?

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@struggler23

Struggling with CRPS x 23! Years. Have no answer.. can’t afford my Med . Tried cold turkey and boy do I need an oven now.!Also taking supplements which are expensive as heck, but trying to get off meds which are slowly killing me.! I love some help.

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My dad has severe crps and mayo in Rochester offers scrambler therapy. It sounds promising. So google scrambler therapy for complex regional pain syndrome. I hope this will be helpful.

Liked by dmac5

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I heard Mayo Jacksonville may start Scrambler Therapy also. Dr. D'Amato is in Bonita Springs, FL and he is well known for his knowledge with ST.

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