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got told i have crps but then they change there mind need help 7

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kayla2211
kayla2211

After 2 surgerys i was told i have crps so they wanted me to have a block done didnt work so they sent me for another block and the pain got worse now there telling me since the block didnt work i dont have crps and said theres nothing we can do sorry have a good one so now im not sure what to do anymore im so depressed about it its in my right wrist and up to my elbow and the pain has gotten worse since my 2nd block any advice would be so helpful thank you

1 like, 28 replies

28 Replies

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  • Goanna
    Goanna kayla2211

    Posted

    How horrible for you,! I have classic CRPS in my foot and leg, it was easy to diagnose as Ihave the colour changes, foot is mottled purple or red, swelling, stiffness , loss of hair  growth, and stinging, burning and aching pain. Do you have other  other symptoms in your wrist  other than pain?  It could be neuropathy from nerve damage, have you tried the usual meds  for neuropathy?  Maybe seek out another consultant for a  second opinion. Good physiotherapists specializing in CRPS could help with diagnosis as well.  Good luck 

     

    • kayla2211
      kayla2211 Goanna

      Posted

      U can really tell a difference its red blue shiny stiff extreme pain my big scar turns purple when the redness comes my nails grow like crazy i get ask whats wrong with my hand and arm all the time theres a big difference
  • kayla2211
    kayla2211

    Posted

    My doctor dont know how to handle it which he has droped me after my 1st surgery but im goig to a pain clinic soon to help with the pain but im not sure where else to turn since i dont know of anybody around my area that knws about it then i found this page and thought id try it im onky 26 my parents past on so i dont have many ppl to turn to so i can ask there opion on it and i got ur responds and felt alil hope to know ppl that has this they may shed alil light on it 
  • Goanna
    Goanna kayla2211

    Posted

    By your description of the colour change and stiffness, it certainly sounds like CRPS, however I'm not a Dr, so going to the pain clinic is a good  start.  My own experience over a 3 year period has seen more success with physiotherapy than using meds, which for me have too many side effects. Gentle massage, warm water flexing , gentle treatment, working up to more advanced exercises. There is also a new treatment called Calmare, which is getting good results, similar to Tens machine , but far superior,. Also Mirror Box  therapy is non invasive and easy to do, and graded motor imagery which has an app for iPhones and iPads and computers, I find this  helps. You can google all these treatments and of course discuss them with your pain clinic .
    • kayla2211
      kayla2211 Goanna

      Posted

      I cant really massege it im very sensitive its really painful to touch it at all thats what got me when this all started i knew something was different bc it was painful to touch and it was all red and purple i wish i didnt take all these meds so maybe going to the pain center we can try something different my dr told me to try ice i did made it worse but when i use heat it feels good i guess since its so cold when i use heat the pain slacks off but i cant walk around with a heating pad 
  • Goanna
    Goanna kayla2211

    Posted

    The worse thing for CRPS is ice , before I was diagnosed my physio was icing my ankle all the time and told me to ice it at home, wish I had known about not doing this as. I'm sure it made things worse . It's surprising  your Dr recommends ice?? Good luck at the pain clinic, and consider non invasive treatments as well, not just meds.
    • kayla2211
      kayla2211 Goanna

      Posted

      Oh yea dont need to take something that has alot of side effects to mess somwthing else up thanks for all the info
  • Goanna
    Goanna kayla2211

    Posted

    Sorry just remembered one other thing, initially I couldn't touch my foot, put a blanket or even sheet on it, shower water felt like my foot was being stabbed. Try desensitizing your wrist /arm, try a tissue gently  waved over the area, just touching it. Forget massage at the moment. Bathing the area in warm comfortable water and gently touching ever so lightly the area, starting of every second day and see how that goes. Once again Good luck. 
  • ali-p
    ali-p kayla2211

    Posted

    Hi kayla.  So Sorry to hear what ur going through.

    Keep on at them .you have to.i got crps type 2 in four limbs now due to spreading. Gad this now for 20 years.

    I've had all blocks known to crps.they didn't work for me either.

    Then in 2003 I had my first spinal cord implant for my arms/hands.it's like a tens machine. It's brill.  Had battery change in 2012. And wait in for extra wiring for my legs 

    So please please don't give up. 

    If you'd like to talk more you can find me on Facebook

    Aliy poole. There's loads of people who have crps/rsd.

    Your not alone with this horrible invisible painfull disease

    Gentle hugs aliy x 

    • kayla2211
      kayla2211 ali-p

      Posted

      I dont have facebook lol i went to the pain clinic for the 1st time i finallygot some pain stuff that was stronger and some patches to help but there sending me to a new place to where they know more about it so hopefully ill get with one dr and stay instead of bounceing around so much 
    • ali-p
      ali-p kayla2211

      Posted

      So glad ur getting help now . I'm only a message away if you need to chat.

       I'm being sent to Nottingham university hospital tomorrow.to see a new consultant. As my original consultant from Dudley.west midlands    Can't do any more for me. But must say pain management as been fantastic.  fingers crossed ay..

      Gentle hugs aliy 😊

    • kayla2211
      kayla2211 ali-p

      Posted

      I have email its ___________ its nice to know thres ppl out there bc i dont know of anyone that has it in my town and my husbands family doesbt think its that bad so i really dont have anyone around me like to me just to talk to its really really nice to have ppl to talk to that has this 

      Emis Moderator comment: I have removed the email address as we do not publish these. If users wish to exchange details like this please use the Private message service, instructions linked below.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • kayla2211
      kayla2211 ali-p

      Posted

      I couldnt find u on facebook my bro has a profile so i tried to look u up
  • Kram21
    Kram21 kayla2211

    Posted

    Hi, My wife had an accident back in cycling accident back in 2001 and has had a pretty rough time trying to cope with crps. It started with pain in her thumb but has gradually spread around her body. Uses a coctail of drugs but hasnt really found anything that helps yet. Also suffers from chronic constipation because of the medication and struggles to sleep. Has had numerous blocks in her neck and infusions but only had minimal effects on the pain. Been passed from pillar to post around the north east hospitals meeting several pain consultants who have seemed to give up trying to help and are now trying to send her for aternative meds. Also had a couple of operations since accident and developed crps in both operation sites so they are reluctany to try nerve stimulation implants on her.
    • ali-p
      ali-p Kram21

      Posted

      i have spinal cord implant, and would realy recommend it, its brilliant

      have one for my hands/arms now waiting for december to have extened wire for my legs to my exsiting implant battery, i'm on no pain meds,

      because none work,,, none of the blocks worked either,

      but please,please don't give up,,,

      its not only us sufferers its famiy too, it gets very hard to explain to our loved ones how we feel, and if your anything like my better half, he trieshis hardest to help and still brings smiles to my face,

      so you are not along,

      i've been a crps sufferer for 20 years now,,, theres always hope, and

      people like meself about to talk to.

      gentles hugs to you both,

      i'm only a message away to anyone who wants to chat or need

      information, i'll try to help feed back is better then none

    • kayla2211
      kayla2211 ali-p

      Posted

      I tried two so far and none work now they just send me everywhere and my hubby tries to cope with me which he knows he really cant help but i get to stay at home ith my lil one now so that helps bc it hurts to do anything
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