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Joint Replacement Patient Forum

    #CRPS
    Indieknee trying to recover, Jun 3, 2019
  1. indieknee

    Thought I’d check in. I hope everyone is as well as can be expected and that many have disappeared from here due to being entirely cured, or at least getting on well with their lives.
    Just looking at my last message in January 2019 - 6 months post op - it seems a very long time ago.
    I’m now 11 months post op and some things have changed and some haven’t.
    Good news - I don’t have to use an extra loo seat anymore:heehee:
    Good news - I’m off the heavy pain meds
    Bad news - I’m still on pregabalin with 30/500 co-codamol.
    Good news - depending on which way you look at it - I’m off to the pain clinic in July.
    I still have pain, of a different kind. My knee hardware works well and my os has signed me back to my GP, but with the suggestion I be referred to a pain clinic.
    The fleshy bits including the skin, around the hardware give me a whole new experience! As suspected some time ago I have #CRPS so I’m still pottering about with a stick.
    Must end on a high note - I’m still able to work at my desk for short periods and enjoy short walks with my long suffering husband :friends:
    Bye for now.
  2. CRPS, Anyone else burning and pain post OP TSR with blisters?, Mar 31, 2019
  3. Pumpkln

    DeannaTA,
    We have members who have had an allergic reactions to the tapes and adhesives used in surgery, with a similar response. Have you been tested for other allergies? Has a metal allergy been ruled out?

    CRPS is a complex diagnosis, it can begin with a simple cut on your finger, toe etc, up to the worst injuries possible.
    It is a reaction of your nervous system to injury.

    The curable app might be a great resource for you, they have a free trial.
    https://www.curablehealth.com

    Click on the this hash tag and you will be taken to posts about #CRPS.
  4. CRPS, Anyone else burning and pain post OP TSR with blisters?, Mar 30, 2019
  5. Jamie

    @DeannaTA .... you'll notice that Jo gave some information about how to treat a severe blistering like you had with your surgery 6 years ago. That information, while not something you need at this point, may be helpful for others who may have a similar situation.

    As for dealing with your CRPS, Pumpkln's suggestions are right on target. If you haven't recruited a whole team of medical experts to help you deal with this condition, that would be a good step forward. As I mentioned, CRPS can be difficult to deal with. Many times there is a lot of trial and error to determine treatments that help and give you a more functioning limb.

    We have had members who had this condition. In fact, we have made #CRPS one of our BoneSmart hashtags. So, you can search for posts dealing with it by searching for the hashtag or just by clicking on the link here in my post. When you click, it will bring up all the posts containing that hashtag.

    I might suggest that you alter the title of your thread to reflect the CRPS rather than the rash that was years ago. Some of our members search the titles for topics they are interested in and you may get more responses this way. If you'd like to make that change, just post what you'd like the new title to be and one of the staff members will get it changed for you.

    I know all this must be terribly frustrating for you. You are always welcome to post specific questions or concerns here. We'll try to get you as much information as we can to help. And, even if you just want to vent a bit, we're here to listen as well. You are part of the BoneSmart family now and we care about you.
  6. CRPS, Anyone else burning and pain post OP TSR with blisters?, Mar 29, 2019
  7. Pumpkln

    DeannaTA,
    You may want to put together a team of people to address your #CRPS, unfortunately it is not as simple as finding a pain clinic.
    Find a counselors specializing in pain, you will probably have to call and ask about their advanced training in treating CRPS.
    Find a PT who has taken classes about pain science from the International Spine and Pain Institute, ideally they should be certified. There is a directory of practitioners on their website.
    Find a MD to help with medications and non invasive treatment.

    They can as a team help you understand how your nervous system and brain work together, and how CRPS develops after injury/surgery.

    You may want to take a look at the Curable app for chronic pain, they also address CRPS. You can also find them on the web at curable health.
  8. CRPS, Anyone else burning and pain post OP TSR with blisters?, Mar 29, 2019
  9. Jamie

    Oh my.....how horrible. I'm so sorry this happened to you. #CRPS can be a rather difficult condition to treat, as I'm sure you know by now. What doctors are you seeing for this condition and what treatments are you on or have you tried?
  10. CRPS, Feb 28, 2019
  11. JennyI

    Haven't been on the Forum since 2011 when I had a right TKR in the April of that year. I have had severe shooting and stabbing nerve pain in and around that knee ever since. Four years later I had a bad cut on my right ankle which just missed the tendons and which required 15 stitches. Nerve damage? Not sure.

    Two and a half years ago I had a right THR followed by continuing numbness and nerve pain. Had a minimally invasive laminectomy last year after 57 years of back problems, followed three days later by a further spine surgery due to a hematoma that spread up and down 4 vertebrae from the surgery site. My quality of life has not been great. I go to a Pain Management Clinic at our local hospital. They now think I have CRPS (Chronic Regional Pain Syndrome).

    My question is - has anybody had continuing nerve pain from their TKR's that has developed into this condition? If this is not the correct forum Josephine, please let me know.

    #crps
  12. Unable to balance on operated leg., Feb 20, 2019
  13. Mojo333

    Fudge!:wave: and :wave: again!
    So glad you popped in for an update.
    I certainly have thought of you and am glad you are still fighting the good fight...
    I'm glad your surgeon was respectful and you felt like you were heard so you can see what options are available to you regarding the crps.
    I'm sure you have sought out all you can on the subject but if you hit in this hashtag it brings you to some if our experiences with it on the forum. #crps

    Thanks for encouraging those still struggling! You will find a way, I know...tough lady you are!
  14. Indieknee trying to recover, Dec 4, 2018
  15. Celle

    We do have this article in the BoneSmart library , too.
    Complex Regional Pain Syndrome (CRPS or RSD)

    Also, if you go here - #crps - it will bring up a series of posts about CRPS.
  16. Indieknee trying to recover, Dec 4, 2018
  17. indieknee

    My OS has suggested that I may have Complex Regional Pain Syndrome. This is partly because I have had more pain than I should have at various stage in my recovery.
    Of course I’ve had to research this myself! Here are a few websites that may be useful or of interest to others even if they don’t have this syndrome. I think it’s something that should have ‘raised awareness’ but please don’t let it worry you - it is quite rare.

    About CRPS
    https://www.versusarthritis.org/about-arthritis/conditions/complex-regional-pain-syndrome-crps/

    Potential CRPS cure U.K.
    https://www.blbchronicpain.co.uk/news/potential-crps-cure-now-available-in-the-uk/

    American RSD hope
    http://www.rsdhope.org/

    CRPS resources from CRPS UK
    https://crps-uk.org/resources/

    #CRPS
  18. Indieknee trying to recover, Sep 13, 2018
  19. indieknee

    Celle and susieshoes - as always thanks for your wise words - I am much comforted :console2:
    Not sure whether my son would welcome being called sweet (even though he can be):blush:
    More news: my surgeons pa phoned and asked if I could go and see him this afternoon. We have just arrived back. He found no infection, thank goodness, but said I had something called Complex Regional Pain Syndrome and has prescribed Gabapentin. I’m seeing him again in 2 weeks. So we’ll see what happens.


    #CRPS