CRPS treatments

Hi Yvonne yes I am very lucky to have Candi, she refuses to let me be beaten by this, but I still find it hard to understand how a accident at work can leave me with CRPS. Candi thought if we got other people's I advice and knowledge of it we maybe able to understand it a bit better, as nothing has worked up to now and it sound like there's not that many procedures to battle it so thank you for all you views and advice it is very much appreciated. I will find out what nutrition can do to help Yvonne many thanks 

Shane 

Hi Candice,

I wanted to jump in here as I too am recovering from CRPS. I feel compelled to add to the discussion because when I was diagnosed I can assure you if I had no hope of anything better than "living with it" I would now be a suicide statistic. I don't know why there seems to be a culture of acrimony to stories of recovery in the CRPS community, but that culture does exist and I don't think the people who perpetuate it realize the damage they can do to those of us fragile souls who are simply looking for answers and positive stories of recovery. It is not offering false hope to share those stories and Roger's is NOT the only one out there. Please DO read his paper--it is linked on the RSDSA website and they would not have posted it if it was hokum. You can also read the story posted by Ness on the neurotalk website. She did essentially the same thing as Roger and has fully recovered. You can also read Mary’s story on the CRPS Hope Foundation—she is also perusing recovery utilizing similar methods. This is sound CRPS science that revolves around starving the pain response by keeping activity below the response threshold and slowly retraining your brain to start responding appropriately again. This follows ever mounting research into how the brain processes chronic pain and is solid science.

What it is NOT is a magic elixir, treatment or procedure. It is a slow, frustrating, aggravating, demanding, daily pursuit of a higher goal. Please do read Roger’s paper and look up the two other stories I’ve mentioned. (Search all of Ness’s posts for her complete story of how she recovered.)

Myself—I developed severe CRPS in my left lower leg in November of 2014. Yes, mine also developed and spread within a few days and by the time I had made contact with Roger I had it in my entire left leg up to my hip, and my right leg from the knee down. My left leg had completely atrophied, I could not walk, could not stand, could not sit, and had also developed SEVER systemic symptoms. Among them, vision problems, stroke like one side weakness that would come and go, severe adrenaline surges the would hit at the slightest sound and throughout the night, sever fatigue, noise induced pain in my legs, severe short term memory issues, horrific night sweats, breathing problems and total lack of pulses in my left leg and foot. In April I began working with Roger on a physical therapy routine that was based on what worked for him. I modified it somewhat to work for me, but I followed the same basic principles that he and Ness and Mary have all used successfully. I am not completely over it; however I feel that within the next six months I will be CRPS free. In April I could only lurch a few steps with a cane and could not stand for more than a moment. I could not take care of myself as I could not physically shop for or prepare food. I could not engage in anything that taxed my brain as mental strain induced pain in my legs. I could barely function in simply getting cleaned and dressed in the morning from disability and fatigue. It is now 10 months later and I am back to work FULL TIME in my industry. I have my own apartment again and am taking care of myself alone. I walk 3+ miles per day in addition to my RBAR exercises.  I have a desk that changes from sitting to standing and I can stand twice per day for 90 minutes at a time. I am now able to walk two flights of stairs in a row.

Yes, I still have CRPS at this time. Yes, I still have to be careful until I’ve completely reversed it. But I HAVE FOUGHT BACK and I AM going to fully recover. Brain plasticity is not mojo—it’s hard science. And it works. Yes, you have to modify the routine to work for your specific situation. Mine was not the same as Roger’s or Ness’s or Mary’s. But we all did essentially the same thing.

To those of you who jumped on Roger I would like to respond with a few thoughts. First of all, please read his story before you react. There was nothing in his post that claimed a silver bullet. Second, if you choose to believe the best you can ever hope for is “managing” CRPS that is certainly your right. But please be aware that when someone is new to this and desperately searching for information there might be other perspectives and insights out there that don’t jive with your preconceptions. Tearing others down doesn’t do anyone any good. The medical field is flummoxed by this condition. The best hope we have is working TOGETHER to lift one another up and find solutions that work. When a broken soul reaches out and only hears that success stores are hooey and they just need to face the fact that this is their lot in life it could very well be the nudge that pushes them over the edge.

I assure you if I had not found Roger’s story I would not be here sharing mine.

Candice, I am not going to post a follow up here as negativity and acrimony from within the CRPS community sickens me. If you reach out to Mary and/or Roger they know how to contact me and I’d be happy to communicate with you privately.

Best of luck to you Candice. If I can be of any help to you please don’t hesitate to contact me. I know Roger is also happy to share the details of his experience with those who are genuinely interested. I have also been in contact with Mary and would highly recommend you reach out to her as well.

i have crps in my toes and foot after a horse riding acident 4months ago and broke all my toes, luckily diognosed really quickly and after my initial panic and fear, crying and not wanting to even get out of bed as i was always so tired i have been doing lots of phisio and i use a circulation machine at home and a hand held ultrasound , all bought from ebay, i take vit c and im on antidepresants that give me a pick me up and help me to stay possitive and im less tired also some evidence that they help to repair nerves, i knew of crps as my dad has it so i was very quick to get better before the pain got any worse, my dad was in a wheelchair as he wasnt diognosed for 2years , he was in so much pain that he couldnt walk and didnt sleep as it was so bad at night, he was very depressed and had a pretty bad time but hes now walking again and allthough not completly pain free hes living a pretty good life , he used all the things i used plus he had hyperbaric treatment that he swears helped him, hes possitive atitude is credit to him and i also stopped googling as its so negative, im still going through it so i dont know if i will continue to progress or not but im determined to keep at it, i keep my foot moving all the time, i use mirror theropy and i massage my foot looking at it when ever im sat down to teach my brain that my foot is no longer broken, good luck please keep plugging away

Hi Karen, thank you so much for such a positive response. Do you mind me asking what a circulation machine is? Shane's foot is always freezing and as he was told yesterday that there are no veins left in his foot his circulation is obviously very bad. I would definitely buy one if you think it could help. Also, do you mind me asking where your Dad had hyperbaric oxygen therapy and how he went about getting it. I have looked at so many things online that I don't know where to start. Many of them seem to be in hospitals so I'm not sure if they would be available for private bookings? It's all a bit overwhelming really!

Also Karen, what does the ultrasound do? Shane also takes bit c daily and is on sleeping tablets that also act as an antidepressant.

Ebay sell circulation boosters, they can be moderated to time , and strength . There are several on the market , check consumers reviews. They can be pricey. I have CRPS, started right foot and ankle . I use a foot bath massage. As the warmth of the water also helps . My burning is a freezer burn , my foot constantly struggles to maintain core temp . The foot spas you can pick up cheap and they can also stimulate circulation. Be careful though. I've pins and needles are part of symptomology they can be acerbated with vibration .

Thank you I'll take a look on eBay Candi mentioned a foot bath but my problem is my foot is ice cold but burns all the time and anything warmer than tepid water feels like hot oil,so I'm struggling to leaving it in water to long, I've tried putting a hotwater bottle in a big foot warmer but it just makes my foot burn more intense and the swelling even worse but I don't know if that's because I can't seem to be able to get it to respond to the desensitisation? Or if that's a total different thing 

I'm fine with static water , running water is difficult . You can also get vibrating feet warmers . They look like something your granny would stick her feet in front off the telly.

hi candice....I have had 2 nerve blocks with no relief. I spoke to the acupuncture guy today but he says crps patients receive very little relief. for some it may be temporary relief the day of treatment. I have had no positive feedback on acupuncture. I just today had a discussion with my pain management doctor about medicinal marijuana. she is going to research it for me. I am at the end of my rope as the pain is only getting worse. has anyone with crps tried marijuana with positive pain relief?? i have tried 3 different opiods with no relief st all. i am on Naltrexone which should help retrain my brain to get out of the pain cycle. i have been on it about 2 months and i don't feel any different so far. back to my question about anyone tryimg marijuana??? thanks for any feedback.