Struggling with a new diagnosis, pain, work, staying positive

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Hi All,

Hope today finds you well. I'm 54 and, until last July, was very active - running and yoga were my go-tos. Then, in a beat, it all stopped with a diagnosis of severe arthritis in the right hip.

In March last year I became aware of a niggle, a pain I'd never had before when stretching after a run - deep in the groin and when drying my right foot after a shower. I didn't think much of it but it persisted. A big believer is 'self-management', I started doing extra stretches, hip mobility exercises and, after several months of this, ended up with a very sore hip (groin and hip crease). Nothing worked and, in fact, seemed to make it worse.

The next step was an MRI and, a week or so later, I sat down with my wife to hear the results via a video call, during which my optimistic belief that I was experiencing an odd strain that physio would help were shattered. The doc simply told me that I had severe osteoarthritis in the hip. Running should stop (it was already too painful anyway). Pilates might be good. Stay active. After the monologue, she asked if I was OK.

I was not OK. It felt/feels like a huge part of my life was over. I nearly lost it, the shock was so profound.

Around a month later I saw a consultant and he started talking about replacement surgery. And this is where I'm at - in the space of around 6 months, I'm trying to process the diagnosis, its rapidity, my youth, the daily pain, the implications for work and the possibility of surgery. It's not been an easy few months.

I'm a freelance filmmaker and am now having to carefully weigh up how much pain I'm in, what can I do, what can't I do? It's like a hand on my shoulder constantly holding me back from adventure and opportunity. Add to that that maintaining a positive disposition has been hard work. The speed with which the world has turned upside down is dizzying.

Until this week, I was still in the phase of 'trying to fix it myself', attempting all manner of stretches, twists and turns in an attempt to miraculously fix the unfixable. At last, my mind seems to have caught up with reality - this cannot be fixed, except via surgery. And now I'm seeking a little support from the community - with nothing and no one to compare my experiences with, I've no idea how unusual this is. I thought arthritis progressed gradually over years but here I am.

Apologies for what feels like a self-indulgent ramble - any insights, support, like experiences very welcome!🙏

BJG

Comments

  • CarylW
    CarylW Member Posts: 274
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    Hello @BJG and welcome to the online forum. We are a friendly group and try to help each other with information and support, and I am sure that you will soon find members responding to you with their own experiences.

    The feelings you express in your post are absolutely normal and many of us on this forum will empathise with you. You might want to look at our member @Janlyn's diary of her hip replacement an interesting read: https://community.versusarthritis.org/discussion/61792/my-hip-replacement-diary/p1

    There are also many kinks on our website and I am posting a couple below.

    Please do let us know how you get on, and keep posting. We look forward to hearing from you.

    Best wishes

    Caryl

    Need more help? Call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Janlyn
    Janlyn Member Posts: 405
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    @BJG Welcome, although sorry you need to join us.

    I do understand all you say and have felt most of it myself. I fought against replacement and thought I could manage it myself but eventually I had no choice but to give in. I felt mine had come on very quickly but I now realise it was only the not being able to run, walk, lead a normal life that came on quickly. It had been coming on for a while and I always put it down to a running injury, walked too far, did too much digging in the garden - any excuse.

    The good news is that now, less than three months post surgery, I don't really need to think too much about what I can/can't do. I can even enjoy life and hadn't realised how much I was just enduring it. Replacements are actually miracles and I feel very lucky to have mine. The day I had my surgery I was told everyone that day was active, runners, walkers and a horse-rider, and all were expected to return to their previous lifestyles.

    I do feel for you trying to fit your work, especially as you're freelance, in around your immobility and having to think of what you can/can't do. I was lucky I could do most of what I needed to do from home. I do hope you can manage your work around waiting for surgery and your recovery period - I imagine it is a big worry.

    Take care, and ask any questions you feel might help, there are many of us here with similar experiences.

  • jonr
    jonr Member Posts: 400
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    Hi @BJG,

    Reading through your post it seems you may be in a kind of limbo - the stage between diagnosis and surgery. You're right in as much as your condition can't be fixed as such, except through surgery but it can be managed.

    There are I believe 2 aspects to managing Arthritis - effective pain relief and physio/exercise, nail the first and the second is a lot easier. You may not be able to run but you could look at alternatives such as swimming, walking and cycling for example for your Endorphin and cardio hit. These will also help strengthen the areas around your hip which are picking up the slack for the weakened joint, possibly causing the pain you mention in your post. I would also recommend you ask your doctor about the GP Exercise Referral Programme, this is a government funded initiative and joining it via a local sports centre will get you a 1:1 with a Sports Specialist who will devise a list of exercises designed to strengthen your hip and surrounding muscles, etc probably involving weight lifting equipment and other things like the stairs machine and exercise bike. In terms of pain relief, I take several supplements to top-up the NSAID my GP prescribes and Acupuncture.

    Hope some of these may help

    Jon

  • BJG
    BJG Member Posts: 13
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    Many thanks for this @Janlyn - it is surprisingly helpful just knowing how 'normal' one's experiences are. One question that's bothering me is when you know it's time for replacement surgery. I suspect this is a very personal decision for people but there must be some generalities.

    I'm lucky that I can still mostly walk without limping (mostly the odd wince, especially uphill with hip crease pinching. I'm doing Pilates and stationary cycling. Pilates can have some tough/painful movements but overall is OK. Sleep is largely OK. But the daily pain (just 3 ibuprofen a day as they don't agree with me) - and it's unpredictability - does wear you down. At what point do people generally say, enough is enough. 🙏🏻

  • BJG
    BJG Member Posts: 13
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    This is great @jonr - I hadn't heard of the referral program and you're absolutely right - limbo is the word. In my instance, the consultant recommended avoiding yoga (which I'd been doing for years) and trying Pilates, which is less fulfilling but definitely great for core/hip strength. I also recently took a chance on getting a recumbent bike, which goes some way to making up for running - certainly warmer and drier than running in the winter! Thanks :)

  • Janlyn
    Janlyn Member Posts: 405
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    @BJG i imagine we are all different in when enough is enough. For me it was when I stopped recovering from injuries and had no respite and disturbed sleep. Suddenly life didn’t seem worthwhile and everything a challenge and it was a shock.

    Previously I’d been on the Escape Pain course and learned about pacing. Without it we were told injuries/flare-ups would be more regular and take longer to heal until they didn’t. This was my experience. I had been to Greece by bus, train and ferry and thought I was pacing myself but after two weeks I could hardly walk, exercise or straighten up. After another two weeks I spoke to my GP, chiropractor and was referred to the MSK clinic. All agreed only surgery would help. Surgeon agreed so I felt quite clear.

    i would say talk to the experts, we’re all different. I really felt I wanted to try everything so I had no doubt but then the wait was painful and damaging. Had I known that was where I was heading it could have been easier, less painful and easier to organise my life around had I been there quicker, but then I may have been left wondering had I really needed it?

    It’sgood you’ve found here as there’s so much advice and experience.

    Take care

  • KC1
    KC1 Member Posts: 37
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    @BJG I can absolutely relate to your sense of shock at the speed of deterioration, although, as suggested above it may well be there were earlier signs that didn’t equate to osteoarthritis. That’s how it was for me.

    Like you I was active exercising daily, I also ran, walked, kept my weight in check, a keen gardener etc. I had a little groin discomfort for a few days and suddenly found I couldn’t walk up the stairs. I went to physio, joined the gym and have done everything I can to self-manage my condition. I was in denial for a long time only telling my family after 10 months when they started asking why I was limping! I just felt it was so unfair. I’d done everything I could to be fit and healthy over the years and after all of that I still have arthritis. Is there any history of arthritis in your family?

    Pain relief is key. It’s a bit tricky for me as I can’t take NAIDs because they negatively impact my potassium levels and opioids don’t make any difference so I manage on paracetamol. Over the past year, since initial diagnosis, things have got worse and my GP has said I will need surgery. I am on the list to see a consultant but that could take a while.

    I take comfort in thinking that if I hadn’t kept fit and looked after myself maybe this would have happened even sooner (I was 60 last year). I think I will have surgery as soon as possible because as my condition has worsened it is having an impact on my knee. As others have said keeping active and as fit as possible is really important so that when you have surgery you are in the best shape for recovery.

    You are not being self indulgent you are processing, as we all are, this huge change in your physical condition. It’s like the contract you thought you had with your body has been broken and now you need to write a new one. Try not to be too hard on yourself and take each day as it comes. I find it helpful to find something to be thankful for each day, a bit of a cliche, but it works for me. I also keep tabs on medication and pain levels to see how best to manage that. I haven’t tried acupuncture but I am have therapeutic massage which is great.

    just know you are not alone.

  • swimmer60
    swimmer60 Member Posts: 202
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    @BJG

    I was coping and coping and....suddenly I went to not coping over a period of two months eg hip collapsing when I got out of bed, acute pain all the time. If I hadn't had the op I would've been in a wheel chair. My GP practise was hopeless, I'd been at the surgery complaining about the pain for over a year and nothing done, except buckets of opiates prescribed.

    When I finally got an x-ray it revealed there was no cartledge left in my left hip. I felt sick looking at the x-ray. The consultant said, "Don't leave it so long next time." Well...duh.

    Your health experience with doc and consultant sounds much more on the ball than mine. Good luck.

  • HCAcomm1
    HCAcomm1 Member Posts: 13
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    HI BJG,

    Like you have been newly diagnosed, going from an active person looking after other people for many years, I now find it hard to cope with myself some days, because of the pain and the restrictions of movement. I've recently (3 months ago) been diagnosed with OA in my knees, wrists, hands, and right hip, which the GP thinks is wear and tear/repetative strain injuries from my job. I totally understand where you're coming from it's very hard to accept that you can go from being an active person so quickly to someone who is now in pain and having to think about every aspect of your life.

    Try to stay positive, I'm going to look into trying some pilates classes I've never done pilates before so will have to see if they will be suitable for me. I've got an appointment o try theraputic massage this week, hopefully this will help.

    Take care

  • BJG
    BJG Member Posts: 13
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    Many thanks @KC1 Lots of great advice/points here. Regarding hereditary possibilities, well my mother had a hip replacement less than 2 years ago and my younger sister is plagued with arthritic knees. Add to this that when I told my mum about the diagnosis, she said something like, ‘well, you know you were born with a loose hip.’ This was news to me. Piecing it together it sounds like I’ve been living with hip dysplasia that’s led to osteoarthritis in the hip. Everyone here has made great points and the forum is helping me stop being so frustrated and helped me start to think more positively about the future.

  • BJG
    BJG Member Posts: 13
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    It’s a journey, isn’t it! I’m sorry to hear about your situation. I’ve found Pilates beneficial, as much psychologically as physically as it helps you feel like you’re helping the body in a constructive, safe way. Obviously I’m terrible at it but it’s a good way to spend time.

  • Nurina
    Nurina Member Posts: 313
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    I'm so sorry reading your story. I totally understand how you feel. The shock of the diagnosis is difficult to swallow.

    I've had hip pain for years, but I could manage it with low weight, healthy lifestyle, exercise. I used be very active, walking or riding my bike to go everywhere, going to the gym 4 times a week. My mum had her two hips replaced when she was my age (55) but I always thought I would never reach that point. But once day, my pain was insufferable and I went to the GP to have a x-ray that confirmed my worst nightmare. End stage of OA and I needed both hips replaced urgently. The worst news were that "urgently" in Wales NHS language could be at least two years in the waiting list.

    The damage was more emotional than physical. I didn't realise that the situation got me slowly into a depression. I'm freelance with a creative job and my head was too confused to create anything so I felt guilty and lazy because I got up in the morning to sit on the coach and do nothing. I stopped doing things that made me happy like meeting friends or going to my allotment or my choir. I even stopped going outside home because I was in too much pain to go anywhere. My family and my brothers said I couldn't continue living like that for two years so we decided to have the most painful hip done privately as soon as possible. I had my hip done 8 weeks ago. It wasn't easy at the beginning but now I have almost a normal life, considering I have another bad hip. I started going to my studio with new ideas, meeting people, going for a walk through the park.

    My recommendation, that you can ignore if it's not helpful, is: don't think more about what to do, what no to do and why me. Get the surgery as soon as possible, if you have the money or get referred to the orthopedics waiting list now before things could go worse. If everything goes well, in less than two months after the surgery you'll recover your life. Good luck x

  • BJG
    BJG Member Posts: 13
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    Thanks so much, @Nurina

    You absolutely nail that feeling of being a freelance creative in this situation. Suddenly, there's a sense of heightened pressure to earn, yet at the same time a sense of reluctance/fear of throwing myself around with a camera in case it's too sore or does added damage to the hip. And now I find myself in the situation of feeling lazy, distracted and not knowing what to do next. Thanks to you and everyone here, I'm leaning towards surgery sooner rather than later, primarily, as you say, because this limbo is not a sustainable life. I'm in a situation in which the hip's affect on my lifestyle and quality of life is currently greater than the overall daily pain. But from what I can see here, waiting until the pain is unbearable isn't a recommended 'strategy'!

    I'm really pleased to hear that life is on the up and commend you for taking the initiative. Maybe in a few months time, I'll be saying the same 👍🏻

  • shazb
    shazb Member Posts: 11
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    Aaw @BJG your post has so resonated with me this is why this forum is so helpful because people understand. Everyone has a story to tell and there will be someone who knows just how you are feeling. I had a diagnosis of hip osteoarthritis in 2020, the last 18 months have been awful back and forwards to the doctors to be told I had bursitis and my hip shouldn’t be so painful anyway long story June 2023 I couldn’t actually walk I saw a new doctor who sent me for an X-ray and rang me a couple of days later to say I had no cartilage and in his opinion needed a hip replacement. Things moved pretty quickly from then and after 2 cancellations I had a hip replacement 4 weeks ago. I’m only telling you this because if you have any reservations please don’t, your hip is not going to get better. I was home within 24 hours of the operation, I can walk around without a crutch (not for long mind). The constant pain has gone, my positivity is returning and I am actually feeling like I can make plans for the future instead of just getting through each day. Take care x

  • WendyDales
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    I have just joined up today and your post immediately resonated with me. I am 51 years old and was diagnosed in January with severe osteoarthritis in my hip. It started similar to how others have explained. Last June I was on holiday motorcycling in Austria (something I could only dream of doing now!) and I got a twinge in my groin. Just thought it was a pulled muscle. Came back home and it started to get worse. I have an outdoors element of my job (a photographer in the Yorkshire Dales) and was a very outdoors person who walked my dogs for an hour a day and While not fit, I was pretty active and adventurous - I get tremendous feeling of wellbeing from being outdoors. I eventually went to a (rubbish) GP who gave me some useless tablets and said it was a 'hip strain' and I should keep on walking! So I did - I started walking a bit with a stick but carried on believing it was doing me good. It just got worse... I went to a sports physio who told me she knew EXACTLY what it was and would treat it, I'd be fine in a few months - she said I had a tendinopathy. It got worse.... I got referred to a physio and put into a programme for a tendinopathy... It got worse... I eventually saw a good doctor who referred me for an X Ray.

    I had to go back to get the results and I was not that bothered, I didn't think they'd have found anything. All would be normal, I'm not an ill type of person. In fact, I went into the GP with another separate niggle and forgot about the X Ray. When he told me the results I had I was in total shock. I didn't really hear the words he was saying. I couldn't take it in. Surely I was too young to have something like arthritis, maybe when I was 70 but not 50!? Was I going to end up in a wheelchair? I cried because suddenly I could see the life I had, which I love, suddenly being taken away from me. No more walking my dogs, walking up hills in the Yorkshire Dales or Lake District. Nada. I was disabled to my mind. My fitness and ability to get outside had been taken for granted. I was very upset for some time as I didn't understand it at first.

    I was lucky in that I quickly got referred to the hospital. I thought I was going to be just given exercises but ended up straight away with the consultant who showed me my X Ray and told me that all my cartilage had gone and there was nothing they could do for me other than a total hip replacement. It wasn't an absolute shock as I'd done some research by this time and to be honest, I was glad that finally something was going to be done. As someone else above said - it's quite hard to look at that X Ray and that gap! So now, I'm on the waiting list... I'm told it's 9 -11 months and it is sadly getting more painful as time goes on. I am always in pain. It affects me walking A LOT. I've got fat haha! It does get me down and I have good and bad days.

    However, I have been quite upbeat. Now I know more - I know it's not the worst kind of arthritis I can have. I know younger people sadly have arthritis. I know I am lucky that I live in a country where I will eventually get care and not have to pay. I know that I'm lucky that my arthritis is in one hip and that hip can be replaced. I am one of the lucky ones is what I tell myself and it is true.

    But it is hard, it is shocking to take in and you can't help but think - why me? I am struggling a bit at the moment as the spring is arriving and I see a countryside looking more inviting but I can only hobble for about 1/2 mile at most as it's so painful - once over I yomped all over out on my own with my camera. I love the outside and I am trying to get out but it's not the same when you can't walk :-( I keep thinking of places where I used to go and take photographs but no longer can get to and it does make me sad.

    I know it will get better though! We do have an end place that is a good place.

    Sorry, this is a massive outpouring! I wanted you to know that I TOTALLY understand the shock. This time last year? I had nothing wrong with me whatsoever. Nothing. Now I struggle to walk any distance and get out of breath. It's a huge change. And it's made me feel OLD...very old...

    As others have said though - I would get on that list for surgery as soon as you possibly can. Beg to go on! Say it's for your job, and your mental health. It will deteriorate and I've heard so many stories who have said that their hip replacement has been wonderful - they have got their lives back. I can't deny that I'm a bit scared of the surgery and the immediate recovery as I know it'll be painful but BY GOD I will stick to my exercises and be out climbing those hills again! Maybe one thing you (and I - I've just thought of it!) could do is make a list of all the adventures we will do when we are fit again. We are lucky that there is a good chance we will be fit again and we will DEFINITELY be making the most of it! Good luck.

  • Janlyn
    Janlyn Member Posts: 405
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    @WendyDales I get every word you say - but what a positive attitude you have which will see you through the tough, painful times. I'm 14 weeks post-surgery and back out in the sun, building up daily - planning more trips - it can be done. And I feel I will never take anything for granted again. Take care.

  • swimmer60
    swimmer60 Member Posts: 202
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    @Janlyn

    First big outing this week..ooer...Meeting friends and going to the theatre. Think I'll treat myself to the Spa too. Haven't been since before lock down and love it, that open air pool is fab.

    Next month off to Cornwall to see flowers and go to Eden project. As you say life is opening up and Spring is coming!🎉🌞

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,065
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    Hello @WendyDales and welcome to the Community. I see that others are already commenting on your post which is great. We are all here for each other and to support each other through good times and the not so good.

    Seems like you've already done a lot of research, but you might find our website of use as well. Just pop a query into the search, or if you have any specifics just ask on this community.

    Good to have you here with us.

    Best wishes

    Peter

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • Janlyn
    Janlyn Member Posts: 405
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    @swimmer60 Wow - definitely sounds as though you are going to make up for lost time - enjoy! 😊

  • WendyDales
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    Thank you @noddingtonpete and @Janlyn - I appreciate that. I think I needed to outpour! I am trying to stay positive, I really am and most of the time I do but sometimes it's just SO damn painful isn't it. Being in constant pain is so tiring. Sorry, one of those days!

    Thank you, thank you 😍

  • Janlyn
    Janlyn Member Posts: 405
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    @WendyDales absolutely, no matter how we try to stay positive sometimes the constant pain gets to us and no one, apart from those who do understand, understands. That's what we're here for, take care.

  • BJG
    BJG Member Posts: 13
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    Hi @WendyDales and thanks so much for your honesty and experience. You know what, I get it completely. I absolutely lost it after the fateful videocall with the GP who announced it was severe arthritis. I reckon there were around 5 minutes where I wasn't sure if I was about to have a breakdown. The gulf between where we think we are and where our body appears to be is so big at that point, it is incredibly hard to process.

    I've bitten the bullet and am now waiting for hip replacement - and the journey was a long the lines of:

    Oh no, this just can't be happening!

    Maybe they're wrong.

    challenging the consultant that my symptoms couldn't be arthritis

    Realising he was right and I was wrong

    Eventually accepting that the trajectory was only going to get worse and asking for an op.

    Today, I'm glad I've asked for the operation. In the last week the pain has changed from being annoying, inasmuch as I could still feel like I could go filming, to fairly regular, unpredictable and intensely sharp pains that are crippling.

    To a brighter future!

    BJG