Fibromyalgia and TKR

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I'm listed for TKR and not sure if I want to go ahead! So many stories of continued pain and problems. I have fibromyalgia and am worried this will impact on my ability to do post-op exercises. Would welcome advice or success/failure stories.

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10 Replies

  • Posted

    Sandra you are me !!!!!! To a tee...I posted an almost identical post a few weeks ago. I too have RA and fibro. I read a bit before about fibro and surgery . I send information to my surgeon on fibro also and discussed it with him and the anathesist....they were keen on going ahead irregardless. I had my op on 30th Jan. I'm going be honest ....I never want to repeat the next day ...I didn't tolerate oxycontin and vomited profusely which means I lost all my meds ....my pain increased and by the evening I was in a heap. Everything hurt. I was honest with the nurse...I told her

    I NEED sleep....(I'd only managed 2 hrs Monday night after the op with the endless interruptions to check me and iv meds etc.)...we worked out what pain meds I tolerated. She gave me them ....and I also asked not to be disturbed unless I rang the bell( I had negotiated a catheter for two nights as knew I wouldn't be able to use a Bedpan.....so I didn't need to get up to pee) ..she gave me hot packs for my neck which ached. The lovely night nurse was very aware of my earlier meltdown.. when I cried with pain and lack of sleep....I got night sedation, more pain killers and 6 hrs unbroken sleep....and I was SO much better Thursday......I improved daily thereafter..am home 3 days....managing with friends help...exercises 3 times most days....day 10 today I think. I'm waking a bit at night but it's helped by sleepers i negotiated a weeks supply of. I'm managing everything.....slowly, resting....ice , elevate, lie in bed, nap . Pain relief ...the nausea is the worst...but I've meds for it... I'm off for 8 weeks now and seeing that stretched out ahead of me helps ....no work stresses....already I can feel the arthritic pain is gone ..ALREADY ....even though I have pain ,I know it's healing bone knitting pain which will go over time....I left my knee almost 4 years after i knew i needed surgery, because of fears like yours......and even my surgeon said it was shocking after the op....in a horrendous state.....which makes me feel better as I KNOW I needed this op.

    My advice is verbalize your fears with your team

    Ask for what you need

    Be assertive ( but nice) about needing your sleep uninterrupted after the first night

    Get lots of help for after..my friends are amazing

    Hot packs work for me on fibro pain....sometimes lidocaine dressings too

    Try see the big picture. Short ish term pain for longer gain... I can get out of a chair better than I could pre op ALREADY!

    I and others here will help and support you..

    I hope this isn't too long winded. I had one rotten day but since then I've managed as well as anyone. I think! Rest loads and set little goals. Meditation helps me too ....

    I hope this post is useful x

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    • Posted

      Thanks Linda, your reply has helped with some of my worries.

      I know it's the right decision in the long term I'm just a bit worried I won't have the stamina to carry out the exercises (which I know are as important, if not more important, than the surgery). I'm quite concerned about my knee swelling post-op as I had an arthroscopy and meniscal trimming 5 years ago and it took much longer than predicted for the swelling to reduce enough for the exercises to be done.

      Hey ho just have to wait for my appointment and then go with the flow and hope for the best.

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    • Posted

      I was exhausted for a long time, but in with respect to the exercises its more little and often, so dont worry. I only managed to just about keep my leg moving in the first few weeks. When I say I was tired, I couldn't lift a pillow..seriously, i brought this very heavy tempura foam pillow but it weighed a tonne and I nearly killed myself trying to move it around! 😀😂😃

      I only ever managed one session of exercises a day, which i did very slowly and the rest of the time I just dotted random ones into the day here and there. It really is quality not quantity and generally just keeping it moving on a regular basis.

      I don't have fibromyalgia, so I don't know what that is like, but an energy drain big time is part of the experience , true. However i would not have thought it would affect your exercises.

      In the first few weeks it's a struggle to even do the exercises to what feels like a good standard, and then it dawns on you that you are not the illustration in the booklet and you throw the idea of standards out the window and do your best!

      Are you in UK?

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    • Posted

      It is a challenging experience, but well worth it. It's fantastic to be able to walk as much ad I need to pain free. Well worth it.

      If you are kind to yourself and determined you will be fine.

      Everyone's experience is different and we cope with things in different ways. I found reading about others experience of TKR very helpful before the surgery and afterwards. This forum is quite a blessing to a lot of people. Bear in mind that forums tend to over represent the challenges and difficulties people encounter because they go on them to seek help and reassurance. So many more people have easier rides, so to speak. However being prepared for the worse, but not expecting the worst, worked well for me as a general principle!

      You may like to go to my profile by clicking on the image next to my name. I kept a journal of my own knee replacement journey, and I have been told by several people they found it helpful to read, or skim through. It's got a lot of general information in it, and gives you one person's experience right from hospital to the nine month mark! My TKR was March last year, so I will be writing my final update on it soon!

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  • Posted

    Ive had 2 TKR with health problems yes its hard and im still recovering 2 TKR ops in 11 months There is a lot of pain in the first few weeks and you have to do stretching extensions on the bed at first. It is energy draining. I'm sure if you have the support of family and friends you will be ok. My best friend has mitochondrial and is in a wheelchair. Her condition will get worse. The team who looks after her were wary but at her insistence went ahead with TKR she was kept in longer and in for 8 days but the nhs were brilliant as always. I'm sure with help you will be ok. Good luck place your faith in the NHS and our dear Lord??

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  • Posted

    Hi Sandra 

    I am like waiting for my letter for my op, already cancelled once due to sciatica but have come to the conclusion that i have waited long enough, i don't go out as i cannot walk any distance without support and when I do walk  it is very slow as I cannot turn quickly or put any support on that knee. The problems I am having is just going to get worse so I know I am going to have a lot of pain during the recovery but  it will be worth it if I can just walk normally without a limp and pain free. Take a nice walk with my grandchildren can't wait.

    We will do this together Sandra.

    Take care

    So we will do this together this time next year we will be fine 

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    • Posted

      Like you I can't wait to be able to walk with my granddaughter. I still get out walking as I have a young dog who needs the exercise but the pain drives me mad, I guess compared to some people my pain isn't "high" but it's constantly there and restricts me so much.

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    • Posted

      I'm just the same but I would not be able to walk a dog( if we had one) and also the pressure it puts on my good leg and hip is not good. 

      Can't believe it Post man  just been and the letter has come for my pre-op 27th February and  a physio appointment 26th March no going back now I must get it done.

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  • Posted

    Tkr's decision should be based somewhat on livability. I have a rare tumor that had blown up and not only had me In a high level of pain but had required 4 surgeries and 30 rounds of radition prior to the tkr. I finally said enough I s enough and even though I was 67 I knew I wanted to try and get some higher level of quality for my remaining time. If you can stand the pain, honestly say you are enjoying a quality of life that you are happy with, I would put it off. On the other hand, if your surgeon has done this for awhile, he has seen most everything and along with the rest of the staff, will be able to find solutions to your individual needs. Due to the tumor, I have had to have 6 additional major operations on the knee but the only thing I would have done differently is stay away from the radiation and not fallen and broken my femur. One final statement, don't base your decision on others history. You are you and one of a kind. Your leg is one of a kind, even different than the other one. Most of the people on here are folks that have had some difficulties, all the others never get on a forum like this.

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