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  3. Complex Regional Pain Syndrome

Treatment that helped me mentally

  1. It took a year of me pushing the doctors to gain a diagnosis of CRPS. I've now been living with the condition for 2 years in total.

    My experience of the condition is pretty unique, due its location in my abdominal wall. It affects many of my daily activities - I'm sure you have already discovered threw your own experiences how hard it can be.

    Luckily for me, I was quickly referral to a [b:23eccda4e9]Cognitive Behavioural Therapist [/b:23eccda4e9](dealing in the thought process), something I would recommend anyone suffering with the condition to look into.

    The CBT team teach you how to live with chronic pain, physically and mentally. They help you re-learn the simple things like how to think positively about the situation, how to question your thoughts and feelings, what to do during a flare-up. They teach useful things like how your nervous system works and try to discover what your pain triggers are. The CBT team don't just deal with the your obvious issues of pain, they look at everything going on in your life, relationships, activities, work, fitness, people’s perceptions of you and much much more.

    Although they aren't there to give out medication, the coping mechanisms and strategies they help you implement, go a long way to reducing the likelihood of a flair-up.

    If you only take one thing from this post to help you cope, then let it be this: -

    [b:23eccda4e9]'Although i am in pain at the moment, it will not last forever and I will get through it.' [/b:23eccda4e9]

    Try to remind yourself of how long your last flare-up lasted and as hard as it is, try and get out of the house even if it is just for 10 minutes two maybe three times a day.

    Wishing you all the best in your own road to recovery.

  2. Hi there, I have had this condition for 9 years now, in my right foot, and since a knee rebuild, now also at the front of my left leg, I cannot find anything to ease the pain, have tried all pain relief through the pain management clinic, they basically cannot help me anymore after attending for over two years with constant complaint of pain. But I will go to my doctor and enquire about a therapist as you suggest. You are the first person that I have found throughout 9 years that has the same condition. Take Care

  3. Hi Brennie, I have just came across this website by chance & noticed your story. I too have Complex Regional Pain Syndrome in my right foot. I have had the condition for eight months now & suffer severe chronic pain. As well as my foot continuously feeling like its on fire, I also suffer from Allodynia so any sort of contact with my foot increases my pain further. I have a fantastic Pain Management doctor who is trying different drugs to hopefully help me. I had a pamidronate infusion which was done by intrevenous. Unfortunately this didn't help but instead put me in bed for two days with terrible flu like symptoms. I'm due soon to have another drug intrevenously, I'm unsure of the correct name but I know it involves using a tourniquet. I feel for you having this condition for 9 years it must be very hard work. Personally I'm really hoping my forthcoming treatment will help. May I ask how your ability to walk is? I currently still use crutches as I can't put any weight on or through my foot.

  4. Hi DC

    I was 39 when I broke my ankle and had a metal plate fitted as the break was very bad, pain constant, so had plate removed 7 months afterwards and took about 18 months to diagnose, by which time the pain was past being controlled. I have had all the bone scans, lumbar nerve block (which did not work), recently hypnotherapy which lasted about an hour. I've been on both medications Lyrica and Gabapentin, and am now increasing the gabapentin to max dose with Amitriptyline (trycillic drug), but still nothing seems to help very much. I am able to walk, nobody would think or know that I had this problem, however, my ankle does give way and so will see how this progresses. I try not to walk very much if I can help it and I'm uneasy when out on my own. Getting back to pain, last Monday I purchased a tens machine, I have been putting this on every evening until I go to bed and now after having it on all weekend, I am now going to use it during the day at work, I'm now reliant on it because it has most definitely taken away the constant throbbing pain that gets so distressing. I just wish I'd known about this a long time ago, I found out all my information all by searching the net, i'm persevering with the tens machine, and trying the different programmes so see which one works best, they say it takes a month to notice any difference,. I'm sorry that you are having problems walking, would be interested to know how you came to the stage that you are now at. I'm in the process also of finding some meditation/relaxation cd's and I've also come to the stage that now I treat the foot like it's in serious need of constant TLC, so I don't over do things and put it under any pressure or strain, if and when possible. I look forward to hearing from you, take care, Brennie.

  5. Hi Brennie,

    Apologies for the late response, I have been meaning to and just never got around to it.

    It's interesting to hear your story and the different techniques you've been trying.

    I received a bad ankle injury whilst playing football last July 2011. I damaged my talus bone and they originally thought I had fractured it in A&E and therefore put me in a cast for a week until I seen a consultant. Eventually after seeing the consultant he removed the cast and gave me a Aircast boot to wear. After the x-rays they showed the damage to the talar dome which looked like a fracture but they were concerned with the size of the piece of bone that was practically floating around in my ankle. I wore the Aircast boot for a few weeks until I had a MRI scan. Between this time my ankle was swollen to the extent that it didn't even look like mine and as well as lots of bruising my ankle was changing colour quite dramatically, very red and often blotchy and blue with streaks. This continued for the next eight weeks with horrendous pain, burning pain as if you had ran a boiling hot bath and stepped in it thinking you had cooled it! I received my MRI scan which showed that I hadn't fractured my foot as first thought and instead I had dented the talus bone which left a piece of bone sticking out in my ankle. I also had completely ruptured most of my ligaments. At the same time as receiving my MRI results my consultant and two others had practically diagnosed me with Complex Regional Pain Syndrome. Once my consultant/surgeon knew this he told me I couldn't have the operation which would of smoothed the dent over. He explained how he thought it would make matters worse. The consultant then referred me to a doctor in the pain management side of things. This doctor is superb and has a great understanding of CRPS. He examined my foot thoroughly and diagnosed me further with CRPS. He organised for me to do lots of Hydrotherapy and sent me to see a Physiotherapist to try and gain some movement of which I had none, I also couldn't put any weight on my foot and therefore although the Hydrotherapy helped slightly I couldn't do much at all without severe pain. Medication wise I started on Amitriptyline and Gabapentin and Tramadol. I increased my medication over the next weeks and eventually was on 2700mg of Gabapentin a day, 400mg of Tramadol, 50mg of Amitriptyline daily. My doctor eventually treated me with a intrevenous drug called a Pamidronate infusion. It wasn't licenced for my condition and was what they use for patients who have Osteoporosis, I was willing to try anything to reduce the pain. This unfortunately didn't work, I did however suffer from one of the side effects which was flu like symptoms, this put me in bed for two days affecting all my joints to the extent of even hurting whilst moving my fingers. I have recently been taken off Gabapentin and now put onto Pregabalin which I believe your on. I'm due for more treatment next week again involving receiving a drug intrevenously. Can't recall the name of this drug but I know my doctor will be using a tourniquet. When I see him next week he will also be putting me on Tapentadol which is a strong narcotic drug I believe. I'm in so much continuous pain and also experience shooting pains in my ankle and up my leg. I also have Allodynia across my ankle which results in even further pain if something touches my ankle and even have difficulty with tight socks etc. I have now been on crutches for eight months whilst not being able to walk. Sorry for the long message and probably boring you but It's nice to be able to talk to someone sharing the same problem and I wanted to give you the full story of how my condition came about.

    All the best Dave

  6. Hi Dave

    You're not boring me and believe me it's the same for me, not being able to talk to someone who understands what you're going through nearly drove me nuts! I'm much more hopeful now because I cannot believe the relief from the tens machine, I was only in about 20% pain the other night for five hours, first time in 9 years, normally 90/100% pain, so I've got rechargeable batteries and I won't be without it, and as it's early days yet, could become even better, let's see. I am not on pregabalin, I am on Gabapentin, 900mg x 3 daily, and rising. I was on pregabalin (have switched from one to the other two/three times) and I found no difference between the two tablets, however, a doctor informed me that the pregabalin is quite an expensive drug, so from that info, it must be worthwile staying with it for a while, I'm tempted to go back but will wait until I have reached my maximum on Gabapentin, also on 50mg Amytriptyline, I was on Tramadol, but they made me seriously sick for 12 hours and therefore I think I became allergic to them. I also wore the boot for three months, and my ankle looked extremely deformed, hence the reason for inserting the metal plate, am also aware of the burining sensation, feeling to me was like a kettle being poured over the foot, however, I cannot stand my foot cold, so try and keep it warm and of course it can get too warm, so still a lot of trial and error. How on earth are you managing without being able to walk, must be quite tough, I noticed over the three months that I was imobile, I put weight on, and that was quite annoying, but obviously lost the weight once I began to walk properly again, at the time of breaking my ankle I had four children, the youngest being 11 years old and the eldest being 16, so I was unable to do things anymore, kicking a football around etc, and going to Thorpe Park etc, I can't stand for too long and stuff, but they were fine with it, just had to get on with things I suppose. I get the feeling that you are quite young, how are you managing without being able to continue playing football? Presume you are getting plenty of help at home, I also tried a linocaine plaster on the foot at night time, which helped. However, one down fall was that I was told that if I had an operation in any other part of my body that the nerve damage would follow, I did not believe this whatsoever, thought that is impossible. But, in July 2008 I had to have a left knee acruciate ligament re-build, and yes, the damage travelled, it is now down the front of my left leg, but so far, not too many problems, only get weird feelings when I touch it, (shaving is a nightmare), but wearing socks and bed clothes etc, not I would say painful just a strange sensation. If I can be of anymore help, please let me know, and keep up the good work.

    Regards

    Brenda

  7. Hi Brenda,

    I'm 37 but young sounds good thanks. ha ha

    Yeah being on crutches for so long is a real strain but I tend to still try to get around as much as possible. The Gabapentin & Pregabalin seems to put the weight on me also, another reason to get up and move often although I'm not the type of person to sit around anyway. I attend hospital on Wednesday for the treatment that I mentioned in my previous email/essay! Maybe if I still have my marbles after getting pumped with all these strange drugs, I will let you know how I get on. Hope your as well as possible under the circumstances and hopefully speak soon.

    Take care

    Dave

  8. Hi all

    I am new on here and its so good to hear that I am not the only one who suffers from CRPS (so I am normal then). I have had this dibilitating condition since 2006 after an accident with a lawnmower ( don't mow the lawn in sandals like i did as you end up with half a foot like i did) not only did I have to cope with what happened to me mentally but also phantom limb pain.

    I kept going back to the doctors with the burning sensations and 'stinging nettle' feelings and I was very persistant with my doctor as I knew something wasn't right and the pain was not from the amputation.

    Finally after seeing 3 different consultants in North Wales and South Wales I was finally diagnosed with CRPS in my right leg where the amputation is.

    Over the years I have had injections which involved a tornique and a hell of alot of pain, didn't work, intravinous injections of something where I had to sit there for 4 hours for the bag to empty, this one didn't work as I had a severe reaction to the Nitrogen that was in the drug.

    As for tablets I have tried everything available Lyrica, gabapentin, amatriptaline and lots more and nothing took the edge of this awful pain that we all have and experience.

    Currently I am on Voltoral suppositories 100mg which work instantly, Morphine 30mg which I am coming off at a slow rate, Diazapam 5mg for the spasms in by back due to having 4 prolapsed discs and the CRPS spreading to my normal working left leg and also it is spreading into my back but that is another story, and I also take Oramorph (liquid morphine) when I am desperate.

    I was chosen to have a Spinal Cord Stimulator fitted and the Welsh Government agreed to pay the £10K for the operation but then as I was being assessed and tested it turned out that it would make my back worse so I was taken off the list. I attend the Chronic Pain Clinic in England twice a year to see my consultant who now wants to put a morphine pump inside my body but I can't get me head around having metal and a forgein body inside me. I have also attended a Pain Management Clinic which was live-in for 3 weeks and I didn't get any benefit from it at all, I know there is no cure for this condition and sitting around talking about pain is not my sort of thing as I felt so depressed when I came home as talking about pain for 9 hours most days was making me go to sleep, so that didn't work.

    I am a positive thinker and yes I am in chronic pain daily, don't sleep at night because of the pain but I do try to keep my house clean and tidy by doing a little bit then rest and this is how my days go and I try to save my energy for the weekends so that I can go out with my very understanding husband and children.

    I look normal and walk with a limp, sometimes I am with my crutches or in my wheelchair and I find people staring at me as I am well under 40 but I think well its your problem for staring not mine and its the same when I park in the disabled bay, put my badge on display and if I am on a good day I will walk unaided and people are staring at me and I just ignore them.

    My message to all sufferers like myself is stay positive, yes it is hard but I finally feel as if I am getting on with my life.

    Take care to all

    Sarah

  9. If you want to help yourself and others then please look at my post.

    http://www.patient.co.uk/forums/discuss/please-spend-5-mins-and-help-250-000-people--35754

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