I have severe CRPS to the left hand side of my body, it started after I dropped a TV on my foot 3 years ago and my life has never been the same since. The pain is horrific, the burning, the bone pain the muscle pain the whole pain that is so loud you can not even tell where it is. I hate the detachment I feel for the effected body, it is not mine it feels totally alien I can not even draw on the pain clinic diagrams unless I separate my left from right side.
I have tried mirror therapy , box therapy, physio, hydro, tens, a multitude of drugs and I just can't cope with knowing tomorrow I will still be the same. I am in a wheel chair as I can not weight bare on left side, my whole life has been turned upside down. Is there anyone out there who has been through the same or is going through it now? How do we cope? How do the people that love us cope? and what can we do?
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welshnut
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I understand that you are suffering from Complex Regional Pain Syndrome.
Many of our community take the same medications that you take regularly, do you also take amitriptyline, as many here would sympathize with medications you take. as a matter of course.
Most members here are after support because of the chronic pain they suffer on a daily basis so you will get support and certain understanding for you and your condition. when they begin to understand this very real problem that you have and suffer from.
I have only been introduced to one other patient with CRPS and that was in a Pain Clinic in Newcastle upon Tyne many years ago and they were going through a great deal of pain in one of their hands, that they had hit in a door and I understand the amount of treatment you have to go through and not being able to isolate it.
I understand you have suffered your pain now for about three years, at what level are you at as I understand that atrophy can set in. I have a different complaint and I suffer an atrophy condition in various parts of my body and been in chronic pain now for around thirty years, so in a way I can understand the journey in pain we have too take.
So I hope that we can help you and give support in what is an onerous journey
Thank you so much Bob, I have atrophy in my foot and starting in my leg I try very hard through physio to stop my left side wasting. I used to take amytriptoline but weaned myself off because I could not work on it. I really empathise with you being in pain so long wears you down. I am lucky I have excellent support from my partner but I get so angry and frustrated.
I look forward to being a part of this community and hope I can give to others and help them find their way through the jungle of services on offer. Because CRPS at the stage I am at is so rare I have been lucky to have been seen by the countries top specialists unlucky not to respond well to treatment.
Hi nutty, what a bloody awful time you are having #understatement! I have small fibre neuropathy and fibromyalgia and have had it for over 2 years. It is so wearing and only those in constant pain knows how debilitating it is. I also cannot function on the drugs I have been given - they either don't work or leave me like a zombie. I work partttime and even that is a struggle. But keep posting on here, many people have good experiences and advice to share. You are not alone. Hope tomorrow is a better day for you. All the best. Maggie xx
Thank you Maggiet, I have a friend with fibro and she was in pain for so long with no one believing her before she was diagnosed. Her relief of diagnosis was amazing however the lack of tools in the armory to help her condition was very sad. I am self employed but lately the hours I can charge for have reduced dramatically as it often takes me 3 hours to do an hours paid work. I try to stay positive and I try to keep an open mind but some days I just can't see an end to it.
However now and again I will gain a small victory either in having an hour or two of being 'comfortable' or in getting a medical professional to understand a little bit more about the effects of chronic pain or crps. I have also developed a black sense of humour and that definitely helps.
I wish you a pain manageable day and thank you for relpying.
nutty
Hi I have the same condition as yourself it even affects the left leg and foot as well,so i know exactly how you feel it has been 13 years for me 12 of which have been in a wheelchair I have an elevated foot rest as i find this less painful it may be worth you trying .
also tried all sorts of treatments none of which helped at the moment we are trying nerve ablation this is very painful and hasn't worked at all yet in fact it has made it worse, we have talked about possible amputation but have to try everything first .
It sounds silly but try to relax if i get wound up and tense i pay for it,Dont give up just take everyday as it comes
Hi fvee, yes I too have an elavated footrest and a recliner in the living room so I can keep my foot up. I begged and begged them to amputate my leg but they refused and convinced me to have a sympathetic nerve block instead, as the fith needle went in I screamed in agony and my hip got frozen, within two days the crps had spread up my left side so now amputation is impossible. I try to relax, really I do , I have an electric throw which I use in the winter to help continuity of temprature and that seems to help.
I know it is a double edged sword but it is lovely to meet you, but I am so sorry you too have crps.
I am away first week of September to trial out some aqua therapies I am so looking forward to that.
Hello Elsie here, sorry been off line just to add insult to injury as the saying goes I got about a dozen wasp stings to my arms so have been in even more of a state than normal. I am right handed, my CRPS began after a broken ankle in 2006. I am very bloody minded and won't use a wheelchair except when I really, really have to I have managed to get my head around the fact that although the pain is worse I am not doing any physical damage in fact I'm doing my body good so I make myself take the hard way, and you will understand what a hard way that is. I walk really badly with my left side dragging the right side along. My illness has cost far too much to my family as I struggle through I have made some massive mistakes, which will cost us dearly. I am petrified of staying in bed for a day however bad I feel encase I loose the courage to get up washed and dressed every day. Sometimes I feel as if my bone in my leg is made from cold ice steel that hurts. I know what you must be going through its not easy is it?
Elsief what a terrible addition to your pain being stung by wasps, talk about adding insult to injury. I love your description of cold steel that hurts it fits so well. I describe pains as bone pain , muscle pain, skin pain and electric storms. Even my toe nails hurt and I need them cut but am terrified of the pain this is going to involve.
Have you noticed extra hair growth on your effected limb? Also have you ever had your white blood cell level counted as mine is always very raised and wondered if this was typical with crps?
I feel for you and hope the wasps leave you alone for a while.
Wasp stings getting better at last. Hair growth is a typical symptom, I did have loads but not anymore my leg did look like it belonged to an ape at first!! Nobody has ever taken a blood sample in connection with my CRPS, I was referred to Bath for rehabilitation, have you been anywhere like that? I have learnt that you must use the affected limbs the pain although bad is not that much worse in the scheme of things. As for your nails the only way I can describe the pain is having cocktail sticks under my nails! not nice. Do you ever feel as if you are walking on the bone, to describe walking feels often as if I have no foot and am walking on the bones made into a point - weird or what. Can you get moving at all? I know how much it hurts but it won't make you worse physically or are you past that point now? I am 52 and have had this CRPS diagnosed since 2006 but I am 100% sure that I have had it for years I just thought everyone felt the way I did, I managed to get 'better' (use the term lightly) twice but this time its so hard I want to give in so its less painful and easier but I don't want it to beat me. I am so sympathetic to you, did you have anything before or is this your first injury that has developed into CRPS?
Before I dropped the tv on my foot I had never been ill I was very fit and healthy so it was a huge shock. My toes and foot looked like a yetti for the first year of the disease I was relieved when the hair growth slowed down. I call it pebble pain in my foot I describe it as trying to walk with a shoe full of sharp pebbled digging through from the inside of the skin. I have a two week rehab in hospital with aqua treatment which was relaxing but offered no long term help, I also did a cbt course which I found totally inapplicable to my life. In the beginning I tried to break through the pain barrier and use my effected leg and foot but after it spread up my left side i decided to go for pain limitation as the pain of walking made me pass out on several occasions. Now other than physio sessions I use my electric chair and scooter and have found a vast improvement in my quality of life. My argument was that as they have said that my chances of remission are slight I want to make the best of what I have and have agreement from my specialist. Winter is the worst as my leg and foot turn blue and freak the nursing staff out. Last year they thought I would lose my toes as they were black and had very little blood supply to them however I managed to keep them using heat pads and when I could stand them thermal socks. I wish they would do more blood work to note changes, my first blood work showed I had no vit D supplements rectified that, and every blood test shows highly elevated white bloods cells as if my body is fighting severe infections but no one wants to investigate why. Thank you for answering I am always looking for common denominators that may lead to a cure or an off switch.
Have you looked into the current research that is going on using IV hymoglobin by Dr Andreas Gobel based at Leeds it is a government funded project that looks really hopeful, it may be worth emailing to see if you can get on the trial, I think it started last year, but that is all about the blood, look him up the man is a genius. It is hard to cope I know, if I don't move about my leg does the same as yours, I have to use an electric blanket to keep it warm and because I use it, the pebbles underfoot is a good explanation I can relate to. Have you tried acupuncture, sounds mad but it the best thing I've done it does not have to be done on the affected side but can be on your good side to mirror the pain, I've found it very helpful, we all have our coping mechanisms don't we with every day a struggle, only others with the condition really understand. Do take care and research the Doc if you haven't already done so. x
I have put my name down to take part in this research study and am very interested in following the results, fingers crossed it will lead to a cure.
I have had acupuncture early on in my diagnosis but apart from relaxing me and giving me brief pain relief I did not find it as good as I had hoped. I do find aqua aerobics and aqua gym a great help though so long as the water is warm enough.
Hi, im Mckinney, and I know exzactly how you are feeling. Im so sorry you are going through such pain. I am in the same boat, my Doctor hasnt even really told me what my problem is. i had surgery in June, they put two pins in my neck and for the first 3 months I was feeling sooo goood. But now i wish I was Dead nstead of having too go through this pain. I cant even go out in my Living room with my Grandboys and play anymore because of this pain in my Left Hand. I wish I knew how to help you, But I cant even help myself...I hope soon we Both can get rid of this pain. People just dont understand how Horriffic this pain is.
Hello everyone I rolled my left ankle in October 2015, and was than diagnosed with CRPS, I don't have much pain to the touch, however I do have extreme coldness to my left ankle (my right ankle could be 85-90 degrees and my left doesn't register on the thermometer) I have what they call mottling, and also lack range of motion, I have been recently been able to work only 4 hours a day and some days, by the end of those four hours my left foot burns and stings like crazy, and can't wait to get my shoe and sock off, I have had 4 sympathic nerve blocks, therapy, I take amitriptyline 50mg, gabapatine 600 mg, and 1000 mg of Tynelol, currently the blocks are being denied but hopefully will start them soon as I was getting 4 days pain free but still had my range of motion problem, and so far it is only in my left foot and like 6 inches above my ankle is where the color changes start, I have had blue, grey, purple, and spotty looking, well currently I feel like I have a pebble under my heel ??? Does anyone know why or what this means?? I keep a positive attitude and keep trying to force my ankle to bend, because I hope to prevent my ankle from curling up into very painful looking positions can you all relate to early onset of CRPS ????
I'm sorry to hear your going throw I ruff time and from one suffer with CRPS to another, I do unsderstand as I have CRPS down my hole right side. So your not allown.
I couldnt help but see at the bottom that one of your posts was"How do we cope" and the answer is I dont know, and I have CRPS. I dont really know if theirs any type of methered. I'm still learning that too. But here what I would say.
Do the things you love. Even if there mad or a little crazy, if its some thing you love and enjoy hold onto it, okay in the long run it may not to much, and you may feel more pain or feel it didn't work. That's okay, but just rember CRPS can take away how we move or what we think. It wakes us up ever right, and makes us feel bad or tired all day, it makes family time hard, it makes us feel alone.
But! The one thing it cant take away is who we are, and the things we love and enjoy yes it makes them hard to achieve but, its part of us like the people we love and if we hold on to them it makes life that bit more livable, even if it dosnt stop our pain, at least it makes us smile for a while. It may not sound like much, but its better to smile for a while then not at all.
So, I hope that helps, even if its not much, and I'm sorry about the spelling mistakes my bloody dyslexia on form as normal. I hope this was okay for you, and I said it right.
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