Just diagnosed and trying to cope with crps

Hello, I am new to this site. I am trying hard to come to terms with the fact I will have this for the rest of my life alongside the pain. I don't think it has sunk in properly yet.

In July 2012 I had a bunion and second toe straightening operation on my left foot. My foot was red in colour from the beginning but I was told it was normal. The foot was painful to stand on for me when others were already weight bearing. Anyway, the gist of the story is that the foot nurse thought I shouldn't be in pain on my supposedly last visit to the hospital. She said I should see the surgeon again in a month. I decided to get physiotherapy in the meantime and she said she thought I had crps. I'd never heard of it. But yes, my foot was sweating, hot, painful, red, had hairs growing out of the big toe and heat going up the leg. A month later independently the surgeon said the same crps. I'm walking as much as I can bear. Doing simple exercises. An Xray showed said I had some bone loss in my toes but it could be through lack of use the surgeon said. He also is referring me to the pain clinic. It's the progression of this awful crps that frightens me. The hot feeling is up my left leg now to the back of my thigh. It's so strange as my leg doesn't feel hot to the touch but is hot inside... the surgeon said it could be the sciatic nerve. I feel rather alone with this and hope I can communicate with others through this site. Thanks you

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  • Hello. I had to look it up to see what CRPS was. I am so sorry, you must be devastated that this has happened after such a supposedly simple operation. Firstly I see that there are treatments that can help get the pain under control and I would discuss this with your doctor urgently. When I had neuropathic nerve pain in my feet, I was crippled by it, I was put on LYRICA and found this was a wonderful treatment, I only needed it for 6 months and the condition cleared up. But, I know people who are on it for life. There are other treatments such as nerve blocks, which can be looked at. Do you have a pain clinic that you can be refered to? They will be able to give you help as well. Lastly, I take Glyconutrients, which I started when my joint and bone pain was out of control and progressively getting worse (I have Lupus and Hughes Syndrome) to my amazement within 2 months the pain, which was everywhere, has almost gone. Look up Glyconutients on U Tube. Lots of different videos on there which will give you an idea what they are about. I so hope your doctor will come up with a treatment plan that works for you. You can use glyconutrients with any treatment. I wish you well and hope that you manage to get help soon. Take care Jane

  • Thank you Jane for your kindness in answering, and Ann's good luck wishes. I haven't been to my GP yet as I thought the physiotherapist and surgeon had really told me all that could be done for this condition, exercise really and pain relief. I will make a appointment now though. I will certainly look up Glyconutients, thanks for your advice. Yes I thought after I typed the initials I was doing what the medical people had done to me, crps, chronic regional pain syndrome. Sorry about that. I feel sick when I read what the progress of this is and very frightened; terribly alone but I am sure most people on this site have felt and feel the same. Some of you have been suffering for so long. I hope I'll be able to use my sense of humour Ann and not be the miserable person I seem to have turned into! I am being referred to the pain clinic by the surgeon who did the bunion operation. I have private health cover but now think I should go with the NHS; I just don't really know what to do. This is ongoing and the health cover will run out, then I think the NHS is great and there for me without having to get codes and keep ringing to see if I'm covered; it's just the length of time getting an appointment. Sorry, I'm going into panic mode because I know this thing has to be treated early. Thank you again I really appreciate your words.

  • So sorry to hear about your troubles, lot,s of good advice from Jane. I will also look up the condition as it is new to me, am also gong to look into Glyconutrients, thanks for that Jane. Good luck and keep in touch via this site, everyone is very helpful and we all try to have a laugh when we can, cheers Ann x x

  • I can only imagine your fear once you saw how this can progress. I would really inform yourself as much as possible and take this information with you to your GP. Type in crps into your search engine and learn everything you can. There are more alternatives than your surgeon and Physio told you about. I would go under the NHS as they will refer you to the pain clinics and your GP will/should know which direction you should go to get the support you need now and in the future. I would use the Private Medical Aid should you find yourself waiting too long for an appointment. You might decide to use them also if you at any stage decide to go for a treatment such as a nerve block as the waiting list for treatment would not become a problem. I would get on top of this as quick as you can. If you are interested in Glyconutrients, you can privately email me if you wish and I will tell you what type I take, dose etc. I am just so very relieved that I found out about them and decided to give them a try. For several years I was in pain daily, often crippled with the pain, many times I needed to use aids to walk and had a disabled badge on my car. I could not climb up or down stairs and would often need help to just stand up from sitting. I now walk my dogs daily and even jogged, albeit for only a few feet, but jog I did the other day! I have virtually no muscle strength because of the years I have not been able to excersize, but I am now working on that slowly. They have helped me so much. I feel we can do far more to help ourselves than we think. Once you have this pain under control, I am sure your sense of humour will come out for an airing! Annie, I hope they can help you, just email me if I can help further. Take care Jane

  • Thank you Jane. As you've probably guessed, I am in a muddle with it all. Noone seems to know that much about crps and looking on line has frightened me severely; I feel as though my life is over but know too that much younger people than me are suffering all the time and I shouldn't be feeling so sorry for myself. I will email you about the Glyconutrients. I've made an appointment through BUPA to see a pain consultant but also I'm going to see my GP as I need the support he will, hopefully, give me. I'll ask to be referred to the pain clinic through him too and ask what else I can be doing. If he's every heard of the condition that is. A friend who is a nurse asked at the local hospital and one doctor thought it was all in the head. Doesn't give me much confidence. I'll get my courage up and start looking at information about this condition too so that I can at least know something about it. My last physio today. It hasn't helped this past week, I've been in more pain and the heat up my leg, well all I can say is that I don't need a hot water bottle! It's great that you have had relief Jane, how do you cope with it? I am trying very hard to live day to day and not look ahead. Best wishes

    Mavis

  • I am throwing star dust through space to you. Everyones journey with pain is different, and while the condition is grueling it's development can take many different pathways or not as the case maybe. It is hard when you have researched something not to imagine the worse scenario but take heart it may not be yours.

    Re physio: I had been to 3 different physio's before I attended the pain management course. I tried hard to follow the program thinking that I would improve. The exercises were challenging and I thought "no pain no gain". Then I went on the course. WOW! Every hospital will deliver it differently. But the one in Oxford made me realize that what had gone before had only aggravated things. And while you certainly need to keep flexible their approach was very different. Much more gentle. Do an exercise until you feel it pull a little hold it for 4 seconds then ease back a bit. And be patient when building up your strength. Slow but sure keeps you moving. When I started I could only do 6 sit to stand (probably not appropriate for you) and now I can do 30. Which means I can get up from the washing machine without moaning and groaning.

    Hang in there and I hope this finds you on a good day.

  • Thank you Nedd. You too like Jane describe my feelings. The worse scenario is going through my mind nearly all the time.

    What you say about the physio: the surgeon tells me to take pain killers and walk as much as possible. The physiotherapist says to walk but not to the extent I am suffering. I've got an appointment with a pain consultant next week.

    I love the way you said WOW about the course. I will go to my GP to get referred to the local hospital pain clinic; hope my GP knows something about this crps.

    How were you diagnosed with crps? It was the physiotherapist who said thats what she thought I had, then the surgeon a month later said that's what he thought. I've had no tests or anything. Though it's wishful thinking on my part, I'm sure they are right....

    So comforted and happy for you that you have improved if that's the right word Nedd. Thank you again.

    Mavis

  • Do not take any heed from doctors who make such comments as 'Its all in the head'. People who have such attitudes should not go into the medical health system. Your life is certainly not over. This is just a beginning of a journey that I am sure you would rather not have to deal with....but it is here.... and the best way I know of dealing with it is 'To know your enemy'. I always feel we cant fight an enemy we dont know or understand. I didnt come to this understanding overnight, I have cried bitter/angry tears many times and have felt scared that tomorrow might bring another stroke, or the pain might become unbearable or that another day of this dreadful fatigue is too much, or simply felt very sorry for myself. I still have those days, but thank goodness they are few now. You will be okay, you have no choice but to deal with this. I know you will find the relief you need.....There is a lot of support/information out there and a lot of treatments which may or may not help....but at least you will arm yourself with the information you need and if you decide to give it a try, then you can. I am on the Lupus and Hughes communities as well and I have heard a great deal of good things from people who attend pain clinics. There are also many different treatments for nerve/inflammation pain etc. So, do not despair hon. You have support here that will give you the strength to continue. You might also look at the idea of getting some councelling to help you deal with this. I think the pain clinics offer this but I cant be sure. Take care. Jane xxx

  • You've summed it up Jane; I can plainly see how you have been through it all. The stress is getting me down.

    You have no idea how your works have helped, I'll have another cry and pull myself together and get on. Bless you. xxx

  • meant words Jane!!

  • I crps and often feel I suffer alone...no one seems to understand and friends and family get 'bored' of listening to me moan about pain and lack of sleep.

    I go for my 2nd isolated limb block next week...keep your fingers crossed for me

    Thanks for all your comments and supports on here. x

  • Good luck with the limb block. This crps is a terrible thing. Pain is so debilitating. my fingers are crossed for you and my positive thoughts go out to you.

  • my partner has crps, chronic neck and lower back pain and he is being sent for a trial with SCS with a nevro senza system. My understanding is that the stimulator is implanted under the skin and blocks the pain signals to the brain. They can target the different areas also apparently to give relief in right arm, back etc. I have already found other people on forums that are doing great with it, so maybe you could look into it? All the best :-)

  • There is also a great study going on at Liverpool hospital I think doctor gobel is the doctors name at the Walton centre. I have also been recommended by a very positive sufferer of CRPS to read this article on the importance of pacing goalistics.com/2013/11/chro...

    I find it all hard to take in too doctors know so little and there is so much different information on the Internet. I have only just been diagnosed but I have realised that having a positive attitude as much of the time that you can will help you fight through everyday even if it hurts like hell and even worse than that some days! Also new research is going on everywhere so hold out hope that a cure will be found in our lifetime and that we can help each other to stay positive. It's good to have a good rant somedays but end it on a positive. If I rant at my partner then I end up laughing at the end and telling him I love him quickly!!! I know it's silly but leaves me on a high when I started on a low!!!! I hope that's helped and I know how hard it is as all those that suffer the same as us with CRPS take care and smile :)

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