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Introducing myself and my knee

Discussion in 'Support Subforum' started by RobOptimist, Mar 2, 2023.

  1. RobOptimist

    RobOptimist New Member

    Hi folks, I'm new here, this is my story. I have CRPS but don't worry, it's a very mild case in relative terms, I don't believe there's too much scary stuff here. My forum name is aspirational -- I could not honestly call myself an optimist right now, but I mean to do my best to become one.

    I'm a 69 year old man, retired and living alone in central Scotland. I've suffered from anxiety and depression since my teens due to my family background but I won't go into that.

    In 1981 I hurt my left knee while running, I decided to aim at a marathon and overdid the training. It seemed to heal ok but I stopped running. A few years later I found the knee hurting when I took up cycling again after a long gap, then I broke the left "tib and fib" in a road accident. Again it healed fine, however...

    During the next 15 years knee pain came and went, always on the left, and eventually (2006) an NHS GP referred me privately to a high-flyer orthopaedic surgeon who looked after one of the top Scottish football teams. He recommended debridement of the patellar tendon and unfortunately I went for it. The op went well but the post-op pain didn't subside, or not much, it went on for months, with the knee getting hot and red some evenings, and eventually I was referred to the local NHS pain management clinic. They diagnosed CRPS but didn't tell me! I only discovered that many years later. On the other hand the electroacupuncture they tried seemed to help, I discharged myself from their care and the condition went into remission.

    Not for good though, it went in and out of remission for about ten years, during which I didn't seek help but just put up with it (I was self-employed and had some capital). In 2016 there was a particularly bad flare-up, I was referred to an orthopaedic team and an MRI showed some arthritis. A replacement was suggested, I questioned whether the degree of arthritis justified that, they said "well if it's causing you so much trouble..." Unfortunately when asked about the history I just said "oh I've had trouble with that knee for decades" and it was left at that. In March 2017 I had a partial (medial compartment) replacement of the left knee.

    The "funny" thing, looking back, is that on the day before the procedure, I realised I'd had no pain for several days, but I didn't mention that to anyone and it went ahead as planned.

    Of course the result was the same as before, the post-op pain just continued for months (I developed a mild opioid dependency for a while) with redness and heat at times, eventually I saw an NHS physiotherapist who diagnosed CRPS, and this time he told me about it, and took some time to talk about it, as a result of which it went into remission for a couple of weeks! But it came back and it's stayed ever since. In '19 or '20 a GP, looking back over the records, mentioned the 2006 diagnosis, confirming what I already suspected. For a while I seriously considered a negligence claim for recommending an op on a CRPS-affected joint, but wasn't sure if the main fault was in 2006 when I wasn't told, or 2016, when the records apparently weren't checked and I wasn't questioned more closely, and I eventually decided against it. (There were other factors too.)

    I retired in effect in 2016 and officially at my 65th birthday in 2018. As I said at the top, my symptoms are not very severe, but my mobility is quite badly affected. I consider myself semi-housebound most of the time, and fully housebound during a bad flareup, which lasts for a few weeks, probably two or three times a year. I'm socially quite isolated.

    There endeth the bad news. A few weeks ago I started a course of fairly intensive meditation and related practices ("Fundamental Wellbeing") and became more aware of psychological aspects of the knee trouble. I'm currently reading Tamara Gurin's book and have The Divided Mind lined up next. I seem to be feeling slightly less pain and discomfort every day, but there's no real improvement in my activity level so far.

    So that's how things stand right now. I'd be grateful for any other recommendations for reading etc. Thanks very much for reading to the end, this turned out quite a bit longer than expected.
    Ellen and JanAtheCPA like this.
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    That’s my favorite book is tms book, and I don ‘t technically have CRPS (but fairly similar at times). So full of courage and hope!
    I’m sure you’ve found her website.
    Tamara is an amazing help on this forum @TG957 and so is @miffybunny. They also do lots of great guest spots on youtube mind/body shows. So helpful!
    You are doing some meditation, which is great. Have you read a book by Dr. Sarno? He talks about doing “inner” work, emotional work to sort out why your mind has had to create these symptoms. There are two free programs on this website that can help you with self discovery. They include journalling to get in touch with emotions.
    The SEP is longer, and more about your emotional life: https://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program)
    The pain recovery program is shorter and focused more on conquering fear, it is the basis for Alan Gordon’s book The Way Out.
    https://www.tmswiki.org/forum/painrecovery/ (Pain Recovery Program)
    Generally it’s recommended to just do one program and follow it through, but you don’t have to. Since you are are already doing emotional work, Alan’s book may be helpful for you to get moving by helping you conquer fear. We have to move even if we are in pain, and that’s ok to do because the pain is benign. Think of how Tamara got moving again. She did it while it hurt, slowly… yet she got better.
    You are doing a fantastic job so far!
  3. RobOptimist

    RobOptimist New Member

    Thanks very much @Cactusflower. Just over the past couple of days, as it happens, I've become more aware of what a big part sheer fear is playing in it all, so I'll definitely study Alan Gordon's book and/or course carefully. Thanks again!
    TG957 and JanAtheCPA like this.

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