CRPS - anyone suffering with complex regional pain syndrome

@daddylonglegs I would suggest you have the knee checked out by your GP at a minimum. With the CRPS, it may be worse than you you would ever know because of the all over leg pain. If that is the case and if it is not addressed, even if your CRPS gives you a few easier days, your knee may still cause remarkable pain. I do know that the last thing any of us who see way too many dr. offices regularly that we hate to go for any "new" reason, but it could do more harm in not going. I do hope it gets better regardless of how you address it.

My sister has been diagnosed with a severe case of this illness, but it's given no real solution or means to ease her pain. Is there anyone out there that is in this similar situation. I am just dumbfounded that she can get no help or treatment for this.

I have it as a result of a fall from a seizure that broke my sacrum, hip, pelvis ankle and leg, severed my sciatic nerve, busted my head open and was unconscious in the hospital for four days. I was released from ICU despite my screaming in pain and it went undiagnosed for 3 months. I lost the use of my left lower leg as the nerves never regenerated and ligaments were damaged beyond repair. I went through several 12-week in-patient hospitalizations for brain/spine injuries where PT was the focus. My prognosis was “Pain, PT, and Prayer”. I was already disabled by a neurodegenative disease with unbearable pain and I had No Idea how much worse it could get. My CRPS spread and strong opiates was my only option as I cannot pursue any of the surgical options. The opioids aren’t a solution either; merely a bandage with harsh consequences. Being mentally strong is hard but necessary as living with RSD is beyond challenging. It has destroyed my bone density and physical therapy results in breaks with any pressure. I was already in a wheelchair when I had the seizure that lead to CRPS Type II. Seek out a neurosurgeon and a pain management specialist for this specific reason. I found my existing team was limited and couldn’t see past my other health issues to treat the #1 Chronic Pain disease on the pain scale. I relied heavily on my therapists to help me see the forest through the trees. There’s a website called RSDHope.com and I am meeting with another specialist in this field in a few weeks. It’s been five years for me come this October. I have met many people that have been able to manage this!! I hope we can all find a path of understanding and relief from something that is very much misunderstood.

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?

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?

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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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.

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?

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?

@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.