Hi, I have severe CRPS in my right foot/ankle/leg. So far it has been resistant to any of the treatments that have been tried. Today I went to the Walton centre in Liverpool for a bier block however, they were unable to carry out the procedure as when the specialist came to do it he said I have no veins left in my foot. Has anyone had a similar experience. I am obviously devastated as I had been led to believe that this treatment had the best chance of being successful and I am now left wondering what this will mean for me long term. I would really appreciate others sharing their experience of CRPS with me and also what treatments they have found effective.
Hi Candice
I so sad to hear your news, how long have you had CRPS for, like you mine is in my ankle radiating up my leg, what did they say the reason was for no veins, I'm guessing no blood flow??
Where are you based, there Bath Mineral Hospital, their very good?
Luv Carol
Hi Carol I fell off the back of a delivery wagon at the end of June, leaving me needing Orif on my right ankle/leg in Aug I had a bolt removed holding my ankle,fibula & tibia together leaving plate & screws in by then I knew something wasn't right. At the end of September I was diagnosed with severe CRPS after Phyiso notice all my signs pointed to Complex Regional Pain Syndrome. I was at Burnley hospital till December then Walton Pain Centre in Liverpool have taken over. Any information would be really helpful as I feel nobody seems to know much at all. I'm under a Dr Goebel who is very good I'm told, but he gives you loads of papers to read but nothing about other people's thoughts so any experiences you've had or know of would be really appreciated.
thank you
hi Candice,
i had CRPS in both feet for 6 years (2007 - 20013). it does not have to be a life sentence. I am over it. google "Reversing Chronic CRPS" for my story of decline and recovery.
roger
Sorry to hear this Candice . Please don't lose hope . x As for Roger, I think you have to be aware of spreading false hope in the remarks you made . If you've reversed your CRPS , then good for you. However your wording is indicating you can cure .
Yvonne,
before you make judgement as to my "giving false hope", try reading my story first. no magic...my recovery was based on the latest science of CRPS ...and my personal experience learning how to implement it effectively.
candice asked for anyone with experience with CRPS...i assume she was not only looking for fellow sufferers...but that she would also be interested in recovery stories as well.
a complete loss of hope is the worst condition to be in for a CRPS patient.
Oh but I did !. And there's no judgement on how you personally achieved freedom from CRPS . My angst is in your wording . What works for you will not work for everyone , CRPS is too individualistic . Your being read as " I can mend you " ,just by your choice of wording .
I've got to agree with you on this Yvonne, not everyone will respond to, what seems as a 'miracle' story from the relief of CRPS.
I just tried to find more stories where by people had found complete relief and were relieved of this horrid condition and each one came back to Roger, surprise surprise! I think there are opportunities for remission if caught early enough but I'd have to call 'bull' on someone who claimed to have cured chronic CRPS after 5 years and also someone who claimed his CRPS spread 'within days'
Be careful on support groups . Attention seekers , benefit claimers ( fakers) , munchausen, scam artists . Also YouTube , people claiming to have a cure , been cured . My husband was all for flying me to a small private clinic in Germany after one guys posting . . Told him, that if one Dr in a small private clinic had a cure, why wouldnt he come forward himself , instead off some random guy posting on YouTube ?. That's when my husband saw sense , he was watching the video with his desperate heart , instead of clear brain . But I imagine desperation driving most people into the wrong paths .
Bless your husband for his desperation in trying to help you, that's very very admirable. My wife is the same and she would do anything to take the pain away.
Not to retract from what the original poster asked, it is a long road to a form of acceptance and management, I'm not there myself but from the support groups I am in (and it's only two) there are lots of people out there with knowledge and their own individual stories on how they cope, again, it's dependant on that particular person and their CRPS journey but it's comforting to know that people are facing the same path.
I am booked into the specialist centre, in Bath, at the end of the month and I'm hoping their pain management process will help me live with what I have. For me, I have over 30+ blisters that bleed on each hand and arm that will pour blood, like a tap, from the slightest touch, change in air temp etc so I'm kind of relying on the Bath centre to help.
Candice, if you're reading this, I'd urge you to get a referral sent from your GP to the centre in Bath, this is all that they focus on. Professor McCabe is a specialist in this field and she will be better placed to answer your questions and provide the appropriate help....assuming you are in the UK.
Hi all, thanks so much for your responses. I actually wrote the original post on behalf of my partner, Shane. Roger I will certainly be reading your story as I think it's important to read about success stories as it gives you hope. We are currently seeing Dr goebel at the Walton centre in Liverpool which is also leading research in England so I'm not sure if we would be eligible for a referral to Bath as we are already attending a specialist centre, although I will look into if they could offer anything that Liverpool can't. Shane's CRPS has ruled our lives since his accident and we are trying to make contact with others who are suffering to share advice, tips and stories. I have been looking at hyperbaric oxygen chamber therapy online and although there are no guarentees, it does seem like it may be worth a try as we have nothin to loose. Has anyone had any experience of this?
Shane is lucky to have you Candice . Have you looked at nutrition ?. I read an article regarding white flour as acerbating inflammations . If you havnt there is some great papers done on the benefits . I hope you both have light at the end of you tunnel with regards to steady relief . Andy , Christ, what can I say . You are what sounds like an extreme case . I've read about cases like yours . I'm heartfelt sorry you have this . I'm in Scotland , we have no specialists ,clinics ........we have chanting naked in the hills wafting burning sage !, or that's what it feels like . I have secured myself a place on a pain management group . However Im not convinced , they discuss theories that have long since been shown to be not applicable . So they are not up to date. And they sound rehearsed like a script . Struggle to understand how someone with no pain can remotely determine how people on the highest McGill scalshould live. Rather insensitive aswell. They tried to make pain apear positive .... In an Indian initiation trial / S+M. And then the sentence , picture yourself two years from now ! In big letters hit the screen . I'm in the stages of Valgus , I had only found out that against everything I've done , I've to get a splint to try and control the distortion in my joints. SO I am deteriorating . The woman sitting next to me in the group has MS , in two years she's more likely facing the prospect of a wheelchair. I just don't think they get it . I'm all for positivity , but I'm also for hope and reality. Keeping it real means I'm not going to have a bubble burst, because I don't intend to inflate one . But the pain management team seen to think it's acceptable to give everyone in the room an inflated balloon. I'm back tomorrow , waiting on them bringing out the " can ya say jasus fur me bhoy" service .
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 .
In reference to false hope , it was not the comment as I've stated, regarding Roger! , it was the wording . Desperate people will read the wording as ' I can cure'. And as CRPS is individualistic , what works for some won't work for everyone . I'm fully aware of those in permanent remission or how you personally want to call it . Good for you , by all means share , but the wording as to be careful . Because if someone does try it and for them it fails , then that is false hope. It was the wording of the comment not the judgement of context. As I've stated before
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