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Feeling worn out - 5 ops last year

Posted , 4 users are following.

melissa91009
melissa91009

Hi

I've undergone 5 surgeries last year plus a large surgery for my hip in 2013. The first was a excruciating sciatic nerve release from impingement between my pelvis and femur which resulted in nerve damage and excruciating pain. The next ones in 2015 were for diagnosing and then repairing my partially dislocating hips which used a new technique in Australia to stabilize them, then I had ankle surgery to stabilize my ankle and most recently an ITB release, greater trochanter bursectomy and glute repair. I had a 1500ml bleed post op which caused a huge haematoma in my leg which still, 6 months later, causes me pain.

Because my hips had been badly damaged and the muscles have atrophied walking is terribly painful. I use a frame or wheelchair.

I'm 33 and feel very worn out. I cry for days then feel sort of ok. EVERYTHING is hard and painful. I can't do anything that I should be able to do at my age, including showering by myself, cooking, standing, walking except on a frame, I ache all the time especially after walking. I'm just having a winge. I'm so tired of being tired.... I find day to day life hard and it makes me sad I can't socialise, I can't work, I barely see anyone except my parents who I live with and no one wants to hang out with the girl that spends all her energy on sitting up let alone trying to have a conversation. Any tips on how to cope? Mel

0 likes, 36 replies

36 Replies

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  • AnnieK
    AnnieK melissa91009

    Posted

    Mel, what a horrible time you have been having! So sorry for your difficulties. All of these surgeries were supposed to fix the problems and give you better quality of life, I am sure. But you are still struggling big-time. Do your doctors have any suggestions about how you can get stronger and improve the atrophied muscles? It seems that they still have work to do to help you to full recovery. My recommendation is that you go to the experts and request what is your due, that they keep treating you until you are well.

    Your life is extremely limited. Perhaps you could also find a therapist who can help you with the mental health aspects of all of this physical disability. Anyone would be miserable with all of this! I've been suffering from complications from total hip replacement last July and will have another surgery next month. I am in nowhere near the pain and trouble you are in (except for having to use walking aids all the time and some pain), and I am down and out about it. I'm 68, so I don't really miss the social aspects like a young woman would do.

    Hope you can get help from the medical community for your continuing problems!

    • melissa91009
      melissa91009 AnnieK

      Posted

      Hi

      Yes I will speak to someone. I get very down sometimes. I've been to rehab four times last year, each time 3-4 weeks. They were pushing me so much I was in agony, crying etc. My muscle spasms were horrendous. My dr is lovely but says I should control my rehab as I know what I'm doing and physio's tend to be over zealous. They have caused me so many issues such as dropping my wheelchair off a step causing fluid to accumulate in my knee. It still swells up and clicks when I walk. Today I cried most of the day because my hips won't do what I want them to do, I was walking a bit on my frame and they fatigued are started to buckle. It's so frustrating. I tried to walk up two steps the other day on my left hip and nothing happened.... Nothing worked even using crutches. So I tried my right and struggled but did it. Afterwards I was in so much pain I say in the couch and cried for ages. I over balance badly. I'm tired of it all I think.

    • melissa91009
      melissa91009 AnnieK

      Posted

      On the up side, I was bed bound and now I can sit though limited and use a frame where as previously I had to be carried to the bathroom and couldn't even hold a washer to wash myself at times as my pain was severe. Sometimes when my hip subluxed I couldn't breathe it was so bad so I'm generally better. My dr says I'll never be normal. He thinks I might be able to use two walking sticks in time.
    • AnnieK
      AnnieK melissa91009

      Posted

      Glad there is some improvement as you can now sit and use a walker sometimes. Have you seen any other doctors for second opinions about anything else they can do for you to improve your functioning and to help you with this overwhelming pain? It sounds like your case is very complicated and you would need the best of the experts to help you. 
    • melissa91009
      melissa91009 AnnieK

      Posted

      Well I saw 13 surgeons in total before my guy now because it was hard to diagnose. He says he can't tell me how well I will get as he's never done all elements of my ops on the one pt on both hips but hopes re walking sticks. So he says to just do what I can and if it hurts don't do it. It's trial and error. I told him about my pain when walking and he said to keep up with pain relief and slowly increase walking distance and do hydro. That's about it really. Because my muscles are so wasted I'm walking bone on bone in my hips at the moment. I think he thinks I'm close to as good as I'll get which just makes me want to hide in a hole sometimes.
    • AnnieK
      AnnieK melissa91009

      Posted

      Sounds very complex, for sure. I believe that bone-on-bone usually refers to lack of cartilage between bones that slide against each other in joints. You may, indeed, have other situations where bone is improperly rubbing against places it shouldn't be rubbing, including other bones, hence the pain.I would think the doc could diagnose those things, but maybe not. Sounds like you have the best care that is available to you. Since you still have so much pain, can you get an assessment for better pain control? Wish you could get some relief, Melissa.
    • melissa91009
      melissa91009 AnnieK

      Posted

      Hi Annie

      It a bit hard to explain, sorry. Because my pelvic muscles don't work very well, instead of the hips etc having help being held up by muscles which is normal, mine just sit on top of each other without much muscle cushioning, hence they rub I guess and the muscles cramp. They are healthy for now but my dr says I may develop cartilage wear if I walk too much on them so he suggests hydro for exercise instead of walking heaps on land to reduce the stress on the joints. It's a balancing act and it wears me down at times, having to think about everything I do. There's nothing else he can do except keep an eye on me and give advice.

    • AnnieK
      AnnieK melissa91009

      Posted

      Well, in answer to your original question on how to cope, I would think that the doctors would know best how to help relieve your pain and disabilities. Sorry that they have no answers for you! You are fortunate to have your parents to support you and take care of all of your needs. Since you obviously can't work, I can only suggest that you distract yourself the best you can, with movies, tv shows, books, online classes or whatever else may strike your fancy. Hope you can find some relief!
    • melissa91009
      melissa91009 AnnieK

      Posted

      You're so kind. My hips were sort of ok today, aching badly but I try to ignore it. I accidentally sat on a seat that was slightly below my hips and couldn't get up at all, even holding onto my frame and trying to pull myself up. Had to get my mum to help lift. Then couldn't my trackies on cause they sometimes won't take my weight if I'm particularly tired. And there is no way it can put them on lying down. So I don't know. Yes my mum is great but she gets tired. Thanks for your help.
  • carmelina52473
    carmelina52473 melissa91009

    Posted

    So sorry to hear you are having so much pain and your quality of life impaired, I have had one hip replacement and am awaiting, in pain, to have the other one. The first THR was in 2007 which was a great success apart from several dislocations has been successful in relation to NO PAIN.

    i have been waiting 9months in pain and now they say it will only be about 3months.

    Have u not been able to control the pain with meds.?  I am on Co-Codomol and extra Codein togther with Naproxine twice a day, but to be honest nothing really touches the pain, so for me it is just a waiting game.  Good luck with your progress which I hope will resolve some of your issues.

     

    • melissa91009
      melissa91009 carmelina52473

      Posted

      Hi

      Oh poor thing. It's a long time to wait for surgery.

      I am on panadiene forte which has 30mgs of codeine in it and 500mg paracetamol, three times a day. I was on a huge list of pain killers but managed to reduce them. The only way I can get some relief is lying down to give it all a break, so morning is generally slightly better but by afternoon I ache terribly. Some days are better than others.

      I hope you have your op soon. Sorry to hear it's taking so long.

    • melissa91009
      melissa91009 carmelina52473

      Posted

      Hi

      I'm also on high dose magnesium to help with muscles cramping and ibuprofen gel to help break down scar tissue and help with pain. I have a lot of scar tissue in my thigh after my haematoma which really hurts.

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