Complex Regional Pain Syndrome

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Following a fracture of my right wrist in Sept/09 I developed this condition, being such a difficult condition to diagnose and treat (which l didn't know at the time) I felt that the medics were disbelieving the amount of pain l was in and not doing anything to help me. It took 5 months to get a diagnoses based on my very evident symptoms . But l was one of the lucky ones ,as l was diagnosed relatively early in the sceme of things and treated with physiotherapy and Occy/therapy,an extremely painful experience but l can vouch that physio/occy therapy has helped way beyond my expectations , I now have the use of my hand back. I still have pain and if l don't continue movement of the limb it stiffens up and the pain gets worse .

My difficulty is finding specialist advice and answers to ? Will the pain ever go away ? Is it in remission if it hasn't spread ,even though its still painful ? What further treatment would be beneficial ? .

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  • Posted

    I have had this condition for three years now following a routine Achilles operation. I walk with sticks as I cannot place my heel onto the floor and the pain travels up my leg. It also causes me problems in the toes of my other foot and I have hypersensitivity in my jaw. With regards treatment, I have had every medical intervention possible! If it is caught quickly then I have heard mirror therapy can help. I had a few months in a hydro pool which did help with mobility as I was reluctant to walk at all. Apart from the large number of tablets I take, keeping mobile is the key....even if the pain is bad. As a large part of the condition is due to brain signals then mindfulness really helps. I have been on a 26 week (a few hours each week) course which really helped. I have also attended a large number of pain management sessions which teach you how to live life with the pain and for it to not overtake everything. Trying to keep busy despite the pain helps ....I work as it is better than focusing on it. Stress makes it so much worse, even if the stress is small. That's were mindfulness comes into its own. With regards medical interventionI have been offered spinal blocks but I'm not willing to risk that kind of intervention. 
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  • Posted

    As run out of space....guanethidine blocks can help but they didn't in my case. I have an amazing pain specialist and have attended many courses on the condition. The pain can go away and I expect you have read that it goes in stages. You need to push to get help and mainly see a pain management consultant who can hopefully help with treatment. With regards tablets..gabapentine, naproxen, co- codomal, amytriptyline help. By far the best help are lidocaine patches. It really is mind over matter and it's important not to let it make you too low as it can cause severe depression which in turn increases the pain. Try and find out if you can attend mindfulness sessions. They really help 
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    • Posted

      Alison the first paper published saying gaunethedine was useless was in the US in 1993, 7 further studies prior to 2000 confirmed this. I was given them in January 2010 and it wasn't until May 2012 that the UK stated the same thing despite this some UK doc's and Artheritis UK still say they should be used

       

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  • Posted

    I have been in chronic pain since 1981.  I have had 8 back surgeries and until these last two have forced myself through the pain without medication.  In 2012 I had another posterior, anterior back surgeries.  There was so much scar tissue caused by the previous metal in my back that it took them 3 hours to beable to remove enough just to perform the surgery I was in for.  I was up walking the halls in the hospita the next day and everything seemed to be going ok.  About 6 weeks after the surgery things were becoming noticebly worse.  The inside of my legs became so swollen it looked like I was carrying bowling balls under my skin.  It spread from there down to my toes on both legs and continued up to where 90 percent of my body has been taken over by CRPS.  Unfortunately this is under Federal Compensation and you have to have the symptoms of CRPS for atleast a year before they will even acknowledge that you have it.  In my case it was too late for the doctors to do any preventative measures.  I am unable to work but still force myself everyday to take care of a family of 7 the best way that I can.  I refuse to lay down and give in to this.  I find that if I start each day with a positive attitude and not on the pain I can still accomplish things for my everyday life.
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  • Posted

    sorry but if you still have pain then you are not in remission. Remission is minal symptoms , yours does not sound minimal . If your CRPS has`nt spread to other parts of your body, opposite hand within a year then chances are you are the low percentage that may not get spread. Which means your more likely to possibly be type 1 crps. ( no nerve damage). Do you get the burning ?
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  • Posted

    How long was it from when you started physio / occy therapy that you got the use of your hand back ? I broke my wrist 2 months ago and now have CRPS ... I am having physio but I am still not able to use my right hand to do anything 
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  • Posted

    I am in my 5th year of having this condition in my heel and ankle. CRPS can last weeks, months or years and even come back in a relapse episode. My pain is unyielding and is with me night and day. I have had intensive pain therapy, CBT and psychologist help. However, with the help of meds I work full time, sat down. My mobility is very limited and use two crutches. Sciatica plagues me due to the way I walk but after a 6 month wait I have a spinal block injection this week. 

    The problem with this condition you need to be mentally on top of dealing with it as low mood and sadness will increase the pain. 

     All I can say is push for every therapy available at your early stage as many beat it and it never returns. 

    My lack of mobility doesn't mean I don't try as the least you use the affected limb the worse it will become. Sensory therapy is the best as it is light touch sensitive. Hot and cold, light touches with feathers and then hard rubbing. All of these different feelings will help ......read up on this as much as you can. I sat with three bowls of water each evening. - cold, warm and hot and alternated. I manipulated it and attempted to make myself touch it. All very hard, but if I hadnt I know by now I would be wheelchair bound as it has 'knock on affects'. Sciatica, hernia and acid reflux due to 30 tablets a day, mental health issues, tooth decay due to acid,...the list goes on. 

    So do all you can at your stage so you can make the best of what you have in the future. You may very well be lucky and overcome it. 

     

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  • Posted

    |Many don't beat it I stopped counting at 3000 hrs research in Jan 2013. There is not a medical paper I have come across anywhere in the World that claims this in fact exactly the opposite.There is no known cure, no drug or group of drugs that can do more than tempoarily relieve the pain.Early treatment can lead to long term remision and I have read of sufferers who were in remission for 10 years and could lead normal lives before it came nack.

    here are many medical papers out there that say it spreads in 77% of sufferers and in 10% goes full body.

    You must never use Ice, I know of 2 UK sufferers who had to have amputations becuase the Ice damaged there blood vessels so badly that they devloped Gangrene. You must never do hot and Cold Water Comtrast therapy, this is only slightly worse than Ice, they had me doing it 3 times a day for 7 weeks, I have white lumps the the blood vessels, some have virtually disappeared while otyhers are blue and swollen and my heart can't pump the blood througth them with enough force to overcome gravity.

    You must never accept agrresive physio becuase this can cause spreads and prevent remission.

    When I finally got to see a specialist he said that te last 2 meant I never had a chance of getting remission

     

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    • Posted

      Thanks for warnIng everyone about ICE: 

      My docs savd to use on after my surgery, so I Iced the heck out of my paInful arm, whIch may be part of what brought on my CRPS symptoms.

      After readIng up on CRPS, I quIt Ice and paInful PT, optIng Instead for heat and gentle OT and I have Improved greatly. Most CRPS symptoms are almost gone.

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  • Posted

    I wouldn't condone the use of ice, but I do know people who went into remission when they started sensitivity therapy when first diagnosed. 

    I know medication isn't the answer but without it I wouldn't be working full time. 

    Without a doubt, to be able to learn to cope with pain mentally is the answer. CBT and  intensive psychiatric help have got me back on track with life, dealing with the fact my life has changed and learning how to move forward with an unyielding pain condition. 

    I have been on national conferences to discuss the condition and reports will be published this year. I have just started trials for genetic testing and sequencing at Addenbrooke hospital. It is looking at pain signals and hopefully something of benefit will come from these trials. 

    As a testimont to the thinking of positive mind to help this condition is Rachel Morris, Paralympic competitor who has proved that this condition improves or at least keeps under control by use of the affected limbs and remaining positive. Read about her.....she is an inspiration for someone with CRPS in three limbs. 

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    • Posted

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  • Posted

    I dId a lot of readIng up on CRPS when I seemed to develop It after shoulder and wrIst fractures. (If I truly was gettIng CRPS, It must have responded to GENTLE PT, and I seem to be In remIssIon now.; It was probably overly aggressIve, excrucIatIngly paInful  PT, and excessIve Ice treatments that aggravated the nerves of my arm. That's what I thInk, anyway.)

    Here Is what I learned about:

    1) KetamIne:

    I dIscovered a lot of InformatIon about usIng KetamIne to break the paIn cycle. Anyone sufferIng from the dIsorder should look Into thIs treatment. It's rarely used In the US, don't know about the UK, but It's popular In Canada, also In MexIco, and there are many vIdeos about It. (I thought I'd have to try to get the treatment, but now I don't thInk It wIll be necessary.)

    2) CervIcal Nerve Block:

    My paIn management doc stIll wants to do a cervIcal (C4-C5?)Nerve Block, and says It's useful as a dIagnostIc tool, but I keep puttIng hIm off. The paIn Is much better, doesn't feel lIke neuropathIc paIn anymore, (no more burnIng, sensItIvIty), and the edema Is almost gone.

    Best to everyone, and may your paIn be resolved!

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  • Posted

    Using lidocaine and Marcaine to infuse the sensory nerves of your wrist may be an option. This will have to be done several times depending on response. This can potentially lead to a cure.of course, there is no promise. This is a safe technique and relatively painless. The injections can be repaired as needed until you are pain free. Combining this with gambling or pre-Gabalin can be of benefit in some cases.
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