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is CRPS curable?

Posted , 15 users are following.

violetb
violetb

I have been diagnosed with CRPS and am currently taking 1,800mg/day of gabapentin to deal with my pain.  

In May 2014 I had surgery on my foot after breaking all my foot metatarsals in multiple places in a car accident.  After (finally) getting my many casts off I went to physical therapy and re-learned how to walk.  During this time of re-gaining function, my foot never felt like a foot or like it belonged to me:  it felt like my foot was wrapped in cheap bubble wrap.  Since I had no idea what a foot should feel like after breaking a lot of bones, I accepted this as 'normal.'  I would often tell my Physical Therapist that even though it seemed like my foot was getting better, it didn't feel like a foot, or like it 'belonged' to me.  

By October 2014 I was walking pretty well and thought I could move back into my life.  

One morning I woke up with a giant toothache, went to the dentist and was told I needed oral surgery.  The dentist injected me with about 50 injections of novocaine and pulled my tooth.  The next morning I was in insane pain.  My face was spasming non-stop, my jaw was throbbing, my face was swollen and I thought I was going to loose my mind.  I called the dentist and he seemed unconcerned, just told me to finish my antibiotics.  The pain did not diminish.  It was/is the worst thing I have ever experienced.  The pain continued for over a week lasting at least 8 hours at a time, then a little respite.  A week later the face pain vanished and my broken foot swelled up like a basketball, felt like I was being stabbed by hot needles and was hot enough to fry something on.  After my foot surgeon refused to see me and told me there was nothing the matter with me (based on a photo!), I found a great doc who diagnosed me with CRPS and put me on gabapentin.

Sometimes the gabapentin works, sometimes it doesn't, but this drug freaks me out and I don't want to be on it for the long term.  Is there any way to beat this condition? Does anyone know?  It seems like the longer I am on gabapentin the more it takes to reduce my pain, and sometimes it makes it worse!  I have read that it is a very hard drug to come off of.  

I just wish I knew if this is a life long condition and if I am going to have to spend the rest of my life on drugs.  I HATE TAKING DRUGS.  I am the person who will barely take an aspirin...I see people on this forum that have been on this drug for years, so I will seem like a newbie to you guys, but honestly, I am scared.

3 likes, 21 replies

21 Replies

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  • Nowell
    Nowell violetb

    Posted

    In some cases of CR PS type one there is a potential cure. It involves injecting thesural nerve of the affected limb with lidocaine and Marcaine repeated on several occasions depending on response.  It is done at the talo- calcaneal notch. 3 mL of lidocaine and 2 mL of marcaine in fused slowly using a 25 gauge 1 1/2 inch needle. This infusion is done parallel to the nerve in the ankle. If you are a responder there will be a difference noted almost immediately. This improves with subsequent injections that can be done after three times a day.this will relieve pain in the affected limb as well as pain distal to the site of injection. Gabalin or pre-Gabalin should be used concomitantly four pairs Asia. Maximum doses may be required. However, pain control can potentially be achieved with the injections. Narcotics are contraindicated.  As a rule the injections are done for three days. There is a pain-free holiday of anywhere from 1 to 3 weeks before the injection is repeated.each time the pain holidays are extended and to the point that injections are no longer required. The whole procedure to achieve pain-free status is about four months. There is no promise. What works for one may not work for another. The upside is that the procedure is safe and relatively painless. It is non-toxic. Good luck!
  • english_lady_in
    english_lady_in violetb

    Posted

    I find Nowell's reply quite depressing ,the last thing you need is to hear it might be a permanent condition. Maybe I am lucky but after 7 months I find I am getting my life back . I was knocked over by 2 labradors on a training day ,not mine ,and yes I was angry not only that the dogs were so indisiplined and allowed on the training day and two because neither owner followed up on me  to my knowledge .So I was 3 months in a physio hospital  with a fractured tibia and fibia.Now I walk short distances ,train my dogs in good weather,drive everywhere I want and carry out all domestic tasks .I still have physio and maybe I was lucky that I was diagnosed at 12 weeks with CPS and the physio hospital acted rapidly with a changing programme but thinking positive is essential Cps and knowing your limits also ,but do not give up hope .
  • english_lady_in
    english_lady_in violetb

    Posted

    After my tibia plateau fracture I contracted Cps I am now 9 months post op and find that if I ignore the pain or forget it ( retail therapy works for me !) 'I do have a TENS and a drug called Lyrica which contains pregabaline and these combined with physio seem to be working for me ,but I know I am in for a long haul .However I am convinced that I will get better .Most of us have recieved terrific injuries of one sort or the other that do take naturally a long time to heal .
  • slebby33
    slebby33 violetb

    Posted

    DON'T BE SCARED HUNNIE,I HAVE FULL BODY CRPS,IN HANDS/FEET/HIPS/SHOULDERS/LOWER BACK,RIGHT ELBOW,AND PUBIC BONE! I HAVE BEEN BEDBOUND FOR 2 YRS IN APRIL! PLEASE TAKE HEED OF MY WORLD CLASS MESS UP'S! LOL! OK,YOU MUST KEEP OFF YOUR FOOT AS MUCH AS POSSIBLE,KEEP IT RAISED WELL ABOVE LEVEL OF YOUR HEART! I USE 3 PILLOWS UNDER CALVES,LAYING DOWN,JUST PUTTING FEET UP ON RECLINER OR STOOL,WILL NOT HELP GET SWELLING DOWN.THERE IS NO CURE FOR THIS DISEASE,BUT DAILY 500MG OF VITAMIN C WILL HELP STOP FLARE UP'S AND SPREADS.YOUR GABAPENTIN INTAKE IS NOT THAT HIGH! MAXIMUM DOSE IS 3,800MG DAILY.YES YOU WILL BE ON MEDICATIONS FOR REST OF YOUR LIFE,BUT YOU MUST REALISE YOU HAVE THE MOST PAINFUL CONDITION KNOWN TO MANKIND! YOUR SCORING UP TO 46 OUT OF 50 ON THE MCGILL PAIN SCALE MY LOVE.KNOWLEDGE IS YOUR KEY TO A BETTER QUALITY OF LIFE! STRESS MUST REMAIN LOW AT ALL COSTS.NO PROCESSED FOODS.ASK YOUR DR FOR REGULAR BONE DENSITY SCANS AS CALCIUM BUILS UP IN BLOOD OF CRPS PATIENTS,AND CN DEPOST ELSEWHERE IN BODY!ANY OPERATIONS YOU MAY HAVE YOU NEED TO UP VITAMIN C TO 1500MG! THIS WILL PREVENT SPREADS AND FLARES!.GET SUPPORT AND ASK FAMLY AND FRIENDS TO PLEASE UNDRSTAND YOUR CRPS,THERE ARE MNY FB CRPS SUPPORT GROUPS.I JOINED ONE CALLED CRPS/RSDFIGHTERS.WONDERFUL,LOVING,CARING SUPPORTIVE PEOPLE,WHOM GIVE GREAT ADVISE AND SUPPORT.THEY ANSWER YOUR WORRIES,ASAP! IF YOU NEED OUGHT,JUST SHOUT MY LOVELY.DO NOT GET TOO WORRIED AS THERE ARE TREATMENTS FOR CRPS,QUITE A FEW NOW MY SWEET.TAKE CARE MY LOVLEY.ALL THE BEST,LOVE SLEBBY33,XXXXXX
  • Rajur
    Rajur violetb

    Posted

    Yes, it is possible to completely relieve the symptoms of CRPS, to be restored to health, and to be made well.

    CURE

    1. 

    relieve (a person or animal) of the symptoms of a disease or condition.

    "he was cured of the disease"synonyms: heal, restore to health, make well/better; 

    archaiccleanse

    "after a long course of treatment, he was cured"

    Goggle "Reversing Chronic CRPS" for more information.

  • david63189
    david63189 violetb

    Posted

    Violet,

    my nane is David and I have crps in the left hand. I was diagnosed 6 months ago. I was on gabapentin for 3 months and it never helped the pain.

    talk to your doctor about lyrica, it has helped make the pain at little more bearable

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