really need advice

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Been diagnosed with crops in my ankle and foot had 2 operations,tried many painkillers and morphine not helping at all,thinking of infusions need so need advice please ????? In absolute excruciating agony many thanks

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  • Posted

    Hi Jan.  I'd recommend a tens machine 

    I tried it fir a weeks trial from the hospital in 2013 I had spinal cord stimulator implant. No painkillers touched me either.but Scs is brilliant.  I'm now waiting for extra wire to  my already implanted battery.for my legs.

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    • Posted

      Thanks for your reply.the thought of the SCS scares me to be honest as I was told it gives you a tingle instead of pain and sounds scary I'm so pleased it has helped you.... Did you have nerve blocks first at all.
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    • Posted

      Yeah. Had them all... With no joy. No painkillers touched me n still don't.. Scs is the last of treatments for me. I'm in stage 4 which is type 2 crps...

      Scs is tingly.  Only slight.But oh boy....It does take the pain away  abit anyway.I'm soo glad I had it done. And recommend it to everyone.beats any painkillers. .. 

      good luck with any treatment you have 

      if ur on Facebook look me up 

      gentle hugs xx

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    • Posted

      DEAR ALI-P,DO YOU NOW HAVE FULL BODY CRPS NOW DARLING? ARE YOU BEDBOUND? I AM! LAST RESORT IS A KETAMINE INFUSION! I AM AWAITING SEEING PAIN CNSULTANT FOR INFUSION! I WNT SAY HOW I KNOW! BUT KETAMINE WORKS,ALL PAIN CRPS WISE,DISAPPEARS.! FOR REAL! IT'S A MIRACLE WHEN ALL ELSE FAILS.I WISH YOU THE VERY BEST,FIGHT FOR TREATMENT,BEFORE ALL INTERNAL ORGANS BECOME AFFECTED! LOVE SLEBBY33,XXXXXX
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  • Posted

    I too have crps in my ankle (ankle has bern fused since the break but the crps hasnt got any better) -I cant stand the side effects of oral meds /painkillers - I used to get guinathdine blocks which stopped working and I am now having Qutenza patches administered by a pain clinic nurse - this has proven to help the pain levels in my ankle - I could not continue to take the strong meds like tramadol or oxycontin as it was leaving me feeling really ill and drowsy all the time - crps is a terrible thing to live with - I have had it now since 2009 but hankfully things are looking brighter now :D
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    • Posted

      Thanks for replying,

      Will mention these patches to my pain specialist,I have been invited for an assessment for lips trial at Walton pain clinic....

      Glad your getting some relief at last :-) !!!!!

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  • Posted

    Hi Jan6259.sorry to hear that you have received the news that you have CRPS. THIS DISEASE IS THE MOST PAINFUL DISEASE KNOWN TO MANKIND!  SCORING 42-46 OUT OF A POSSIBLE 50 ON THE MC GILL PAIN SCALE!  CHILDBIRTH IS 35!!!!!  I AM BEDFORD. HAVE BEEN SINCE APRIL 7TH OF LAST YEAR!  I KNOW THAT KETAMINE  INFUSIONS CAN HELP ENORMOUSLY AS IT ACTS ON THE PART OF THE BRAIN  AFFECTED BY THIS MONSTER DISEASE. HEAT WILL NOW B R YOUR FRIEND, ICE YOUR ENEMY!  KEEP WARM.USE A BEANY BAG THAT YOU HEAT IN THE MICROWAVE!  ALSO.MAKE SURE YOU KEEP YOUR STRESS LEVELS DOWN AS THIS CAN CAUSE A FLARE OR SPREAD!   THERE ARE MANY SUPPORT GROUPS OUT THERE.JUST FOR US! I JOINED THE CRPS/RSD FIGHTERS, ON FB.THEY ARE VERY SUPPORT ICE KIND CAING AND LOVING.I GET ALL MY ANSWERS FROM THE 340 PEOPLE WHOM HAVE EXPERIENCED ALL TREATM ER NOG AND PRO LET'S. ANSWERS COME BACKFLIP VERY FAST NOT LIKE SOME GROUPS THAT TAKE DAYS! GIVE IT A TRY MY LOVELY. HAVE YOU GOT A PROPER PAIN CONSULTANT AS TREATMENT SHOULD START ASAP AFTER DIAGNOSES!  GOOD LUCK SWEETHEART. IF YOU NEED MORE INFORMATION ON THIS PLEASE JUST SHOUT. I AM PRETTY UP ON THIS BUSINESS NOW! LOL! LOVE SLEBBY33
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