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Suffering CRPS spread to lower back

Posted , 3 users are following.

nikki1021
nikki1021

hi,  to cut along story short, I was diagnosed in January with crps in my right arm, neck and head. After months of nerve blocks and medication I finally had a nevro scs implant. The implant was a success for treating my arm, neck and head although it took 4 months to get the programming correct. However during the recovery I experienced the most unbearable lower back pain from the incision in my back and where the leads are anchored to my spine. Finally after months of every type of medication including methadone and 4 admissions to hospital for ketamine infusions and clunreal nerve blocks to my back they have said the cRos has spread to my back. Please can someone recommend a treatment that has helped as I am desperate and in the most excruciating pain everyday!

0 likes, 3 replies

3 Replies

  • Kram21
    Kram21 nikki1021

    Posted

    Hi Nikki,

    That sound like dreadfully bad luck. Hope you find some comfort soon:-D

    My wife has been told about this implant but the consultant was reluctant to do procedure for precisely that reason. In case the condition spreads.She has had a couple of operations in the past and has suffered the same excruciating pain in the operated areas.

    My wife has had the condition a long time now and has also tried lots of treatments. We live in hope one day someone will come along who understands this pain 

  • slebby33
    slebby33 nikki1021

    Posted

    DEAR NIKKI,I HAVE FULL BODY CRPS.IT STARTED WITH A SIMPLE CUT ON MY FOOT,CAUSING CELLULITIS.IT SPREAD TO MY OTHER FOOT,THEN MY HANDS STARTED TO SWELL,AND BECOME BRIGHT RED! THEN SPREAD TO SHOULDERS,THEN HIPS,THEN LOWER BACK.YES THIS PAIN IS DREDFUL.AGONISING.I TAKE 160MG ZOMORPH X2 A DAY.(SLOW RELEASE MORPHINE) 15MG OXYCODONE X4 A DAY,50MG DIAZEPAM A DAY,NITRAZEPAM TO TRY KEEP ME ASLEEP,AND 2700MG OF GABAPENTIN(NEURONTN) DAILY.YOU HAVE TO TAKE INTO CONSIDERATION,ANY INJURY,I.E. YOUR OPERATION,MAY LEAD TO A "FLARE" OR SPREAD OF YOUR CRPS.HEAT HELPS A LOT,THE BEANY BAAGS YOU UT IN THE MICROWAVE ARE FLAT ENOUGH,ALTHOUGH YOU CAN GET MANY SHAPES AND SIZES.NEVER LAY TOTALLY FLAT! IT PUTS A STRAIN ON YOUR LOWER BACK.TRY RAISE YOUR LEGS OR PILLOW UNDER THEM IF YOU HAD NO CHOICE,I.E. IN AN AMBULANCE ON COT.ASKTO TRAVEL ON YOUR SIDE! NEVER STAND FOR TOO LONG IN SAME POSITION,IF IN A QUEUE,DO NOT BE AFRAID TO EXPLAIN TO AN EMPLOYEE THAT YOU CANNOT STAND OR SIT ON HARD CHAIRS FOR LONG,DUE TO THE DISEASE YOU HAVE.TAKE DAILY VITAMIN C.I KNOW I FEEL BETTER AFTER JUST 2 DAYS OF EATING A SATSUMA A DAY,BETTER IN NATURAL FORM,BUT CAN BE GOT OVER THE COUNTER..THERE ARE MANY SUPPORT GROUPS ON FB.I BELONG TO CRPS/RSDFIGHTERS.THE MOST WONDERFUL,LOVING SUPPORTIVE PEOPLE I HAVE EVER MET.PLEASE DO NOT BE SCARED,YES,I AM BEDRIDDEN,BUT I HAVE HAD NO TREATMENTS AS YET DUE TO KEEP HAVING TO GET NEW REFERRALS EACH TIME I MOVE HOME TO ESCAPE VIOLENT EX! BUT I AM SLOWLY GETTING THERE.I HAVE JUST LOST A GREAT CRPS FRIEND TO SUICIDE,HE FELT UNSUPPORTED,AND UNLOVED BY HIS FAMILY.,PLEASE DO NOT FEEL ALONE.THERE IS HELP OUT THERE,JUST FINDING IT CAN BE A TASK.I WISH YOU WELL,ANY MORE HELP NEEDED,JUST SHOUT HUN,XXXXXX
  • nikki1021
    nikki1021

    Posted

    Hi Kram & Slebby,

    thank you both for your comments,this certainly is a very rough path to me traveling down, the scs implant has certainly helped with the crps in my arm but the pain in my lower back is so unberiable that I can't even enjoy the relief to in my arm & migraines. I am petrified of the thought of any further surgery considering what has happened however I have read articles about the implantation of pain pumps for relief, has anyone had any experience with one?

     

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