diagnosis of CRPS

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Can anyone please advise me on the most appropriate way to obtain a diagnosis of CRPS? I have had symptoms of pain, oedema (ankle) and cyanosis (foot) and in my left leg/groin/back follow lifting equipment at work in 2010. The pain has never resolved and I'm now medically retired due to the problems as I can only walk very short distances and I limp all the time. I presently take Pregabalin 100mgs 3 times a day and amitriptyline 30mgs at night, I also add in paracetamol and codeine as needed. I used to use TENS but I now use a pain pen as needed. I'm presently under the care of a excellent neurologist and a hip surgeon.

Many thanks

Sue

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  • Posted

    I would like to ask those who are suffering from CRPS, if any of you have had excess fluid removed from the affected Area? I was diagnosed recently and have been making a point for a fair while now, that the swelling doesn't seem to be subsiding. After researching it for a fair while, one thing I noticed is that there is no mention whatsoever of draining excess fluid from the troublesome area. My reason for asking is, that seeing some of the pictures and reading the prognosis , the one thing that stood out, is discolouration and persistent swelling. Does it make sense to anyone else, that the trapped fluid, is becoming poisonous, therefore travelling to other parts of the body and affecting them as well? Your feedback would be much appreciated. Cheers
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  • Posted

    Hi Everyone,

    By accident I have just come across this site and thought I would share my experiences of CRPS with you all. I have had CRPS since 2009 after an accident involving my left foot, a shoe and 3 toes. I accidently kicked my foot on the shoe as I was getting ready for work, I didn't break the toes but did splice the peroneal tendon in 3 places as it ricchocheted around the ankle. After toes had healed was having mad days when I couldn't walk and unbearable pain which felt like my foot was falling off my ankle, I now weird. Anyway, eventually saw the right doctor who tried in vain to get it to heal but couldn't, and after plaster casts didn't work I had the op. Peroneal Debridement, well on one thing left to say about that 'CRPS' was on its way. My Pain was through the roof, I couldn't and still can't let anyone touch my foot and have a lot of days when I can't walk, I know it sounds silly but its as though I am stuck on the spot and cannot move away. I did however eventually after a lot of doctors even acupuncture get referred to the UCLH in London who confirm that it was CRPS and was now chronic. I take 30mgs of Pregablin as the side effects are not as harsh as Gabapentine, plus Co-Codamol plus paracetamole on and off. I have seen a Psychologist who has helped me accept that I am now disabled and that I also cannot walk very far, or stand for too long. I have also just retired early from work as I never got to go back, I couldn't commute on the trains. I do get daily pain and this has also spread into my right foot, but I try to keep moving as much as possible, but the pain management team has taught me to recognise the triggers, don't try to do too much, keep positive as stress can make the pain worse. I wouldn't recommend trying to get the fluid drained as I had that done in my op and now have a large bubble type lump which is very painful just under my ankle and discolouration so I would say put your feet up as much as you can. Keeping positive helps me get through each day, as each day is slightly different. I know it may sound strange but I felt better once they told me what it was as you can research it yourself and learn what you can and can't do without waiting for the doc's to tell you. I hope this is helpful and that you are one of the lucky ones that it goes into remission. Thanks

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  • Posted

    Sorry that's 300mgs of Pregablin not 30, I wish it was I would have a lot more energy.

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  • Posted

    Helo everybody,

    it's good to find a site where people know what you're talking about. I have been suffering from CRPS since December 2013 when I was hit by a car and broke my wrist and forearm. I'd never heard of this condition and I wish I still hadn't! I knew something was very wrong before the cast came off, because my fingers were all swollen and twisted and the pain in my arm and shoulder was excruciating.

    It's 5am as I write. I've been up since 3am. Nothing kills the pain without sending me into a zombie state or making me vomit so I have to put up with it.

    On my website, I'm attempting to make the best of things and reporting on my treatment. You're welcome to have a look. Send me a message if you like.

    Best wishes,

    Celia

    Emis Moderator comment: I have removed the direct link. If users want the web site address pelase use the message facility

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    • Posted

      Finding this forum has saved me mentally. I was beginning to think something was wrong with me. My doctor told my son that I was looking mentally unstable. 

      Thank you

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    • Posted

      That is terrible.. The Doctor's think they are "Tin Gods" as an Ex Nurse please understand that a lot of the Doctors dont know it all..and that was cruel of him.. There for the grace of God Go I Doctor! It Helps to get with people who suffer it.. The NHS / DWP are trying to save money and dont listen to the cries of people in Vane sad sign of the times.. I was injured in my Job as a Staff Nurse have a Injury pension NHS  and claim DLA but for how long with the third degree questions and trickery can we exist with the DWP benefits. Just means that many people are reliant on others, and this throws many into poverty.
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  • Posted

    Hi Sue

    I am in the same boat as you and currently being referred to a Neurologist so see the extent of the Nerve damage to my spine which is an industrial Injury cause by Poor Health & Safety as a young Nurse. Sufferd this since 1981 a fall down stairs in 1984.. kept going till 2009 then retired from the stress of work and pain in my back and left leg..Now I have CRPS 2. No diagnosis as such but I was informed by an Internet Physio this is probably the condition.. GPs do or say very little, little help reall NHS accepted Liability but are only paying me £463 amonth to live on.. They have blatantly lied in thier report. Crps 2 Nerve Injury from existing Trauma is not often recognized because it points to a previous Trauma and often degeneration is blamed if it is a Back injury.

    Have you had Nerve Conduction study done Sue? What does the neurologist do for your treatment.. Have you bee offered a Fusion? What has he said that it is permanent?

    My trouble is I hate all the Medications .. they make me dopey and when an episode arises I end up in bed.. I also use an Ice bowl to cool the foot when its raging and painful.. Helps alot. Pain Pen what is this new never heard of it can you explain?

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  • Posted

    It seems to be very difficult for some people to get this condition diagnosed. I was lucky...if you can call it that! I had a routine tendon operation in my foot four years ago due to heavy walking and fallen arches. Whilst in plaster my pain was unbearable but thought it was normal following surgery. After I had the plaster removed and stitches taken out (which caused me to faint in pain) I saw a physiotherapist. He had seen this condition before and I will always remember the shock on his face when he saw my foot. He referred me immediately to the hospital for hydrotherapy, mirror therapy and to see a pain consultant. As I said I was lucky to have someone know the condition straight away. 

    Unfortunately after all this intervention I still have the condition four years on. I walk with sticks and on my toes. I do work full time as I'm a line parent and have no choice. I have an adapted car to drive and can park under my work. My mum who is 75 does all my housework, gardening, DIY, cooking. The future does worry me as it's clear it will not go away. 

    I take gabapentine, amatriptyline, co-codomal, naproxen, an anti depressant and use lidocaine patches. The patches are good but the pain on taking them off is unbearable. I have had guenethadine blocks and Botox which can help...but didn't in my case. The most helpful thing to me has been mindfulness exercises. I had 26 sessions and can now zone out in work when need be! I would say that the only reason I managed to get to see a psychologist and psychiatrist was due to the condition causing me to become suicidal. If I hadn't got so low I would still be waiting. 

    I would say that to remain mobile and positive, no matter how hard, is the best way to keep this condition from taking over your life. My consultant tells me the best way to treat this condition is to tell your brain every day how much I love my foot and look at it constantly. Sounds weird but it really is the way forward with CRPS. The more you loathe that area the worse the pain. 

    As I said I have been lucky...to still manage to keep a job (by keeping my tablets at a level I can work at during the day), to have an amazing consultant at the pain management clinic, to have had mental health input, mindfulness sessions, every kind of input which may help and my car on dla. Without all of this I would be in wheelchair by now. 

    The pain is unrelenting and without a doubt the psychological side to this is so very debilitating. I live my life around when I can take my tablets and worry as to whether I can manage a few hours sleep before getting up for work. Each morning I reach for my crutches and hate them so much but I have no choice but to keep going for the sake of my son. 

    Push all you can to see a specialist in the condition and to see a psychiatrist who can refer for mindfulness sessions. It isn't the answer and the trouble is with any health condition , one illness leads to another. I have reflux, hiatus hernia, insomnia , sciatica , stomach ulcer, fibromyalgia, mental health issues.....all due to CRPS or a side effect of too many tablets.

    This condition is eventually being believed but unfortunately some still think it all in the mind. I guess it is....but the pain is very real. Sometimes people ask me what is wrong and I just cannot be bothered to try and explain this frankly unbelievable condition. 

    So just keep pushing for anything you can get to help. It may not cure it but it really helps knowing people are at least trying. 

     

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    • Posted

      My GP is dismissive and almost tells I am pretending. One day I said to him"you've know me for years, why would I pretend now". Saw a consultant who listened. He changed my medication and at least the jerkings/convulsions and sweating has been reduced. The burning sensation on my left side continues and my leg is getting weaker. Waiting to see a neurologist. Finding this forum has almost saved me.
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    • Posted

      The leg will get weaker and you will suffer flare ups certain things will trigger it.. do you claim DLA (PIP) IF THIS CONDITION IS WITH YOU MORE THAN 50% OF THE TIME EVEN IF THE PAIN IS VARIABLE IT IS A DISABILITY and if it reduces you to a wheelchair then claim it....  From how I feel and the criteria of my symptoms I have been told it will be permanent all as a result of Nerve damage.. This has ruined my quality of life sadly. The reasons many Doctor's are not recognizing it in the UK is because of MONEY... Dont give Up keep collecting the Evidence documentary Photographic etc:
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  • Posted

    Medical people DWP say that because it is easier for them.. and costs nothing ..I want a diagnosis and a nerve conduction study.. I get DLA but lucky to get that really.. I dont work any longer diue to my back.. AND suffer depression from this when I am immobile and static with the pain.

    We need to get the NHS & Professionals to understand the condition much more and research it. this link I have found is most useful and heavy going.

    https://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf

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  • Posted

    I feel so angry that so many of you are suffering dismissive comments from people who should know better. It's bad enough learning to live with this pain without so-called 'experts' trying to make out you're trying to swing the lead or whatever. We know that trying to keep a positive frame of mind is the best place to be, but there are times when that becomes impossible when you're worn out through constant pain, lack of sleep, nausea, diarrhoea, constipation and any other nasty side effect of all the drugs you have to try before you find out which works for you.

    I never took any kind of medication before CRPS- maybe a paracetamol if I had a heavy cold in winter and that one tablet would be enough to make me feel sleepy. Then suddenly I'm on Tramadol and Lyrica (pregabalin) plus anti-inflammatories and something I called Voldemort to help keep my stomach reasonably stable. I felt like I was poisoning myself. I didn't know which way was up. I simply couldn't function. I stopped taking Tramadol and then slowly got myself off Lyrica.I'm lucky that here where I live in France they understand this condition and I've had access to daily physiotherapy as well as other treatments to keep me moving.

    I sometimes think if I sat still long enough I'd seize up completely and never move again. I try to keep a sense of humour because I must be a right pain to live with!

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  • Posted

    Tramadol is evil..I always feel nauseous after taking it.. I now take Codiene Effervescent ..Tabs popped into water (fizzies) they work almost immediately on thepainand are much kinder on the stomach.. I try natural products ..herb teas and ice packs and massage. I hate too many tablets as very often they work against each other then the stomach creates and gets upset.. Always take milk after tabs or with a meal unless it says otherwise.
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