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CRPS

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myra_2901
myra_2901

hi have was diagnosed with CRPS in Jan 2015 this year, I had a slip fall in November  last year and ended up with soft tissue damAge only. Was expected to have full recovery within two weeks.  My dr is a total dick and had no idea what was going on. A month latter my hand is still swollen and burns like someone is holding a blow torch to it if touched and it twitches and shakes. I also has what feels like ants running up and down hitting me. Was refers to a physio. She was great to begin with. Said she thought I had CRPS and needed to see a pain specialist  even recommended one to my Dr.  My dr did not think was nessasary and kept giving me talks about how the tissue is complex and sometimes needed extra time to knit back together. My fall was at work so was on compo. The insurance company was getting a little unhappy by March and sent me to their specialist.  By this time I had had, MRI, ULTRA SOUND AND X-RAYS.  the insurance company's specialist confirmed the physio diagnose as CRPS and early adhesive capilitus. Recommended I see a orthopaedic surgeon and a pain specialist. This took me till mid March when a return to work specialist was added. Fantastic lady!  She comes to all my GP appointments and was instrumental at getting me an appointment with the surgeon. Still no pain specialist. As gp still did not think was nessasary.  My hand is still swollen, red, extremely painful scale of 1-10 sits at a 3 at rest and 10 if touched. It now fells like it's not my hand and does not respond to my commands. Tell little finger to move and thumb may wiggle. Very strange and upsetting. I see the ortho and he say we are going to become best friends over the next two - three years. Says I have CRPS IN MY HAND HAS SPREAD TO MY SHOULDER. he recommends a pain specialist (ps) Finally in June I have my first appointment with the ps. Yep he says I have CRPS. MY Gp still not understanding what this is. I know more about than he does!  After a heap of drug trials with the Ps and three ganglier blocks I have now been recommended for a sprinkling cord stimulator trial. This is where my physio( how I have been seeing since Jan ) becomes a little hostile and rights untruths to the insurance company. This is quickly dispelled by my return to work specialist. I have had the first part agree to with the insurance.  Eduction on the spiral cord stimulator (scs) this involved the procedures starting with a trial implant . Then she explained that I will have a blood work up to make sure I have no infections and that I need to see a dentis to make sure not issues as this could cause an infection during the trial implant or final implant. I then spent an hour With a psychologist. 200 questions all about me,family live and my disease.  This is all to make sure I am the right sort of person to cope with the implantation.  I would love to hear other people's stories with CRPS AND IF ANYONE HAS HAD A SCS implanted. 

1 like, 14 replies

14 Replies

  • sandra59159
    sandra59159 myra_2901

    Posted

    Hi Myra I can understand how you feel.In May this year I broke my little finger on my right hand and was put in plaster for two weeks .As the break was complicated and hadn't healed properly (I had an Enchondroma in between the break) which is a cyst possibly been there for years, my hand was repositioned and put in plaster again. My hand looked a mess and was swollen after two weeks but after being plastered the second time I could feel my hand swelling underneath the cast and it was uncomfortable but I didn't go back as I thought this was normal (stupidly).When the cast came off ,my hand was badly swollen ,changing temperature ,sensitive to the touch , changing colour etc and so I was sent for hand therapy.After a couple of weeks struggling to do the exercises (I couldn't do them because of the pain )she refered me to my GP for special drugs and diognosed me with CRPS. I initially was given naproxin and codene , not the drugs that she recommended , but now have been given Gaberpentin which has helped to take most of the pain away. I'm on 900mg a day. My break has healed and the hospital don't want to see me anymore as also the hand therapist . Although my hand is so much better not so swollen it still isn't right and I still cannot lift heavy things and my movement is limited,and in the night the fingers are so so stiff and I really have to work to get them moving. If I clasp the steering wheel I get pins and needles as also sometimes in bed .This CRPS seems to take its time to get better and I've been told it can spread any where!!!! I have quite a positive view on this but sometimes I do confess to getting very frustrated with the lack of mobility but I just try to get on with it.I'm very blessed that I don't have as much pain now and my condition is no where near as bad as many of you on here. If it's possible though and this is not easy especially if your in a lot of pain etc trying to be positive helps so so much. I'm currently recovering from having cysts ,ovaries and fallopion tubes out,and my father died after a very long illness on September 15th so it's not been an easy time recently.

    Hope this is helpful and your CRPS improves.Kind regards Sandra

  • sandra59159
    sandra59159 myra_2901

    Posted

    Myra you have been through so much my problem is very small compared to your complicated problems and I really hope and pray that things work out for you and bring you some pain relief and that your GP will be far more sympathetic about your constant pain.

    Kind regards Sandra

  • Rajur
    Rajur myra_2901

    Posted

    doctors can be as clueless about rare conditions as you were when you first heard of CRPS. My pain doc had to go look it up...he had been trying to convince me that I had arthritis. I mentioned my other doctor said it is CRPS and to his credit he went out and looked it up.

    The good news is that over the last 10 years or so, there have been advancements in understanding. I was a 5 year CRPS sufferer before I cobbled together enough information and understanding to find ways to reverse the symptoms. I have been completely free of the pain, disability, etc,. for 2 years now.

    google " Reversing Chronic CRPS" if you want to read my story. It may help.

    there is hope of recovery

  • mary_420
    mary_420 myra_2901

    Posted

    I just accidentally erased the whole long thing I wrote, so now I'll do the abbreviated version. Grrr.

    I was diagnosed with a rare, severe form of thoracic outlet syndrome when I was 13. Usually this condition only causes numbness, tingling, and loss of feeling to the arm, and usually develops at an older age. Mine started not only with numbness and loss of use, my arm would swell up like a baseball mitt and turn deep purple from the elbow down. The pain was intense. It was like instant stage 2 CRPS. After 2 years of tests, medications, and hospitalizations, they did a rib resection and initially had about a 40% improvement. Got worse again quickly and had a thoracic surgical sympathectomy. This helped a lot but left a 30% disability in that arm. Lastly had a carpel tunnel release done from the years of swelling.

    Today I am 49, and diagnosed with Ehlers Danlos hypermobility 5.x;p]pu77p

    • mary_420
      mary_420

      Posted

      Ok, difficulties I'm at the doctors. I'll finish this here in a minute. Sorry
    • mary_420
      mary_420

      Posted

      Sorry. I'm at the doctors. I'll finish this in a second.
    • mary_420
      mary_420

      Posted

      Ok, Mary again. Lol. I am 49 this year and my current diagnosis are Ehlers Danlos hypermobility type, narcolepsy with cateplexy, fibromyalgia, and IC. In May of this year I had what was supposed to be a simple surgery on my left foot; removal of a toe joint and a bunion surgery. Two weeks after surgery you could see on the xray that the screw had come lose and the bones had seperated. I fully figured that he would go back in and secure them. Nope. He kept saying wait, wait, wait. It was supposed to be healed at 6 weeks, but he waited 4 months before listening to me and doing a CT scan. Finally he said I was non union , had developed Avascular Necrosis, and the joint had collapsed. I had been in a walking boot the whole time, but was allowed to take it off at home. I never could put weight on that side as.......it was broken. Lol. During the last two of those months I developed stage 1 CRPS; red, hot, swollen, painful. The bones came first though so was referred to an orthopedic foot specialist. Had to completely remove the bad joint and had to cut a LG wedge of bone from my heel to put there to lengthen it. Had to also cut bone out of the long metatarsals under my second and third toes to even them up with the large toe. Big surgery done September 25th. Still in a cast, my 4th one. He has 15 screws and two plates in it so the bone is secure. He's talking about giving me a walking boot next week and setting me lose. He wants nothing to do with the CRPS, I think as I'm a complicated patient and he was just repairing the other doctors mess up. He doesn't want anything to do with anything else. I also think it's because I'm planning on sueing the first Dr. If I can't go back to work next week I lose my job, lose my retirement, and as my narcolepsy was diagnosed while I was at this job, I will never be able to be hired as an RN again with that diagnosis. He made me lose alot, even over my fear of this CRPS. I am in stage 2 now. Excruciating nerve pain, like my skin is paled off and like a wire bristle brush is scrubbing that raw skin.. Some bone pain developing again, and it is going a dusky purple when in a dependent position. I guess I just wanted to share what had helped me, but that was over 30 years ago. I don't know what they can do now. Most nerve medication makes me suicidal. I take amitriptyline for my bladder pain, which works well and no side effects. On hydrocodone 10 mg six times daily and Fentanyl 50mcg patch every other day for the Ehlers but it doesn't touch the nerve pain. I am on a high dose of Effexor for the cateplexy and on Ritalin three times daily for the narcolepsy. I don't know what else they can give me, so I hope to learn alot here
    • myra_2901
      myra_2901 mary_420

      Posted

      what a difficult time you have had, i understand your pain, i have very simular. no medication cuts it for me. i am having a SCS trial as soon as insurance approves it. there are some great suport pages on facebook. I belong to a couple. the people on there are great. 
    • carol91733
      carol91733 myra_2901

      Posted

      Can you let me know which part of the whole your from and can you tell me how to get on FB support group please!! I will be thinking of you on the 21st keep in touch maybe give me your email address? Tc Carol X
  • RJATWORK345
    RJATWORK345 myra_2901

    Posted

    Myra ,

    Not many of us are forced to have sergery on a crps limb.  I have CRPS in my left leg with the worst being left shin and into ankle and foot.  My CRPS started after an arthroscopy of my left knee in 2006.  I broke my left ankle in febuary (turns out CRPS can decrease bone density too)  Ortho surgion really thought it needed surgery but did NOT want to mess with a CRPS limb.  After working with a bunch of pain mngt doctors he decided to do it.  They did all kinds of nerve blocks to make my leg numb (6 hours in pre-op and i could still feel the patch directly over the break)  anyway surgery was a success made it through the first few days without setting any new nerve pain off...wooohooo. ... It has been 10 months and the break hasnt healed so he wants to go back in and redo it only adding extra bone from my hip in the break.  I just dont want to do it.  15 surgeries in the past 20 years and I have never had such a strong stuborn feeling like this. If you know others who have faced surgery after CRPS i would love to hear peoples expiriences.  My best way to discribe the nerve pain I feel to someone who has never felt anything like it is ,; it is like when you have a bad sunburn and you streatch the skin..... 

    Hope you are doing well

    Thanks

    rj  

  • myra_2901
    myra_2901

    Posted

    Hi, I have just completed my spinal cord stimulator trial ,with the Nevro Senza . The trial was for 18 days. My trial was extended because I was having great results. The paper work has been done for the perminent implant. I now have to wait for the insurance company to approve. I am on workers compensation. I just hope that the are quick. The pain has all returned and is unbearable.
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