l.c.p.d has any felt different in playing sports ?

Posted , 3 users are following.

hi i am Robert 28 m uk and had L.c.p.d when i was 5/6 years old . Always found it hard in sports to get to what i call top speed in like running . Now going to be honest don't hate me people as a teenager i train and played a lot of rugby with my local adult team done football tones of walking, riding bikes, but always felt my leg/ hip slowed me down i don't know if it is in my head all does other people not just me felt it too ? like i get back pain and i notice knees are going now as well with from all the running. and wonder if people my age going through the same thing with l.c.p.d as me and what are they doing to get around it ? as i am still single no kids don't want to end up back in to the wheelchair again as it will end me i have always been active and having it taken away i be in tears . and i know people in their 30s has had hip replacements with L.c.p.d as they over used the hip

pains are swelling of the hip / when running feeling like i am falling like it given away

stiffness of the hip

back pains like sciatica

and pain knees of the outside of the kneecap

kind regards

Rob

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  • Posted

    Hi Robert,

    I am 64 and have been active in all sports my entire life!

    I had LPCD at 7 years old and was on crutches for about a year.

    The femur balls in both hip joints healed but were disfigured.

    No matter, I was active in basketball, baseball, football, tennis, soccer, etc.

    As I entered the 20's, I experienced inflammation and stiffness after competitions.

    I had to ice and take Advil before all sports activities in my 30's and 40's.

    Over time, I began to greatly favor my right hip which for some reason was much worse than my left.

    My gait and manner of walking put great stress on my lower back and opposite knee.

    Back pain and knee pain caused me to get a hip replacement in my 50's and had to have meniscus surgery on my opposite knee.

    At this point, 45 minutes of a daily stretching exercise regimen and a bit of weight training for the knees has kept me on the pitch and basketball courts.

    I am in my 60's, still officiate basketball and soccer, play golf and tennis and coach.

    Used to be an active jogger but have to stay off the hard concrete surfaces and stick to grass surfaces.

    The hip replacement was virtually painless and was active again in 4-6 months. I recommend it!

    Dedicated and appropriate daily stretching is the key to flexibility and to continue your active lifestyle.

    Best of luck and God bless!

    Lou

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    • Posted

      Hi Louter

      So i guess right that i am heading down that road of a hip replacement op as rugby is an hard contact sport . like N.F.L without the padding and the helmet what is a shame really

      might as well go into coaching Rugby then as i need my hip and back to how out as long as possible as had cancer treatment this year too so my work won't be happy to more time off 😕

      thank you Louter

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    • Posted

      Robert,

      Sorry to hear about this latest set back.

      Yes, once you have a hip replacement contact sports are verboten!

      I still snow and water ski but have toned it down on the slopes as I almost crashed when I caught an edge and had a ski ripped off my boot. Was doing 360's on one ski while figuring out a way to land on the stronger hip side.

      If you want to avoid surgery then begin an intense stretching regimen with a knowledgable physical therapist.

      Best,

      Lou

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    • Posted

      Hi Lou

      would the intense stretching regimen with physical therapist work when i already feel the back pain have 2 different kinds of knee supports ?

      like at the moment i am dealing with pain at the moment but it could be that i am used to the pain but it could be making me tired easy too . just so much need to asked really you know .

      Kinds regards

      Robert

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    • Posted

      Robert,

      Not sure what knees supports you are using.

      This may have an impact but not sure of the kind of knee supports you refer to.

      Lack of hip rotation puts great strain on backs and knees.

      Stretching helps all muscles, tendons and ligaments support all joints.

      Speak at length with a physical therapist and they will tell you what to do.

      Lou

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  • Posted

    Hi Robert,

    I'm Tina, I have a 17 1/2 year old son, who is Autistic with other learning difficulties, hence me replying and not him. He developed Perthes when he was 3 years old in his left hip, we were predicted that he would need to be non weight bearing in a wheelchair for approx 1 year, but he had a very severe case which had almost gone into his growth plate. He suffered horrendous pain, and spent numerous long times in hospital on traction. I won't bore you with his whole story because i'd be typing for ever, but he ended up non weightbearing and in a wheelchair for 5 years before there was any sign of new bone growth. His new hip grew to a third of it's original size, and stopped there.

    He was allowed to start doing sport, but absolutely no contact sport, and any sport he does isnt to the level of his peers, and he couldnt walk as far as them either.

    He constantly suffers from back pain, hip pain and knee pain. He has had numerous tests to find out why but no one can explain it, he does have a syrinx in his spinal cord at the base of his neck but we are told this is not the cause of pain either, the only explanation the drs suggest may cause back pain is spending his formative years in a wheelchair may have weakened his core muscle strength/development. I have spoken to other Perthes sufferers and found that there are quite a high amount who continue or develop, pain in these areas.

    I can tell when my son is having a bad day with pain, (he tries to hide it for fear of going back to hospital), he limps, walks on tip toe or is very fidgety and irritable.

    Like yourself, it worries me if it will deteriorate in the future and end up with him back in a wheelchair, because they wont put in replacement hips too soon.

    How was your Perthes treated, were you non weightbearing, or did you have to have surgery? I know there are differing opinions in the Orthopaedic world, we did ask for a second opinion once but got told we were being treated by the best surgeon in the Uk at the time, which reassured us and he treated him for over 10 years.

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    • Posted

      Hi Tina

      I had the the surgery with plates and at the time no disable access to the school so lost a year and half of school learning and always struggle since then with it just a dark a very dark time for me . like today feel the niggles in my back and the stiffness in my hip every day so now i am going in to coaching rugby more now then playing i think as it hard for me being that i am single with the chance if i meet someone they have to deal with me in a wheelchair and no playing ball with the kids if i have them one day . i can't do that to them you know i done so well to get where i am with the freedom just to lose it again one day just horrible really .

      Regards

      Robert

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    • Posted

      Hi Robert

      My son was the same with school, he missed loads and in fact this got blamed for the reason he was struggling or other stupid teachers blamed it on him being in a wheelchair, like that can affect your intellect! He didn't get diagnosed Autistic until he was nearly 10.

      I think its great that you have found a way to continue being involved in a sport you love and sharing your enthusiasm and knowledge with others.

      I'm sure you'll meet that special person one day and whether you need to use a wheelchair or not, wont matter, but the improvements made to hip replacements or even hip resurfacing will keep you on your feet.

      I'm disabled myself and whilst i havent been able to do some things with my son, theres an awful lot of things i can do that make every single moment with him a blessing. There are many different types of parents and not being able to kick a ball around with your child, doesn't mean you shouldn't be a parent.

      People/Drs think that once your Perthes has healed, that's the end of it and you can get on with your life, but they don't understand that from your date of diagnosis, its with you forever and will continue to affect your whole life. No one prepares you for that, it creeps up on you and you realise that its not going to go away and you have to find away to live your life with it, and if you can accept that and find a way to do that, then life can be easier.

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    • Posted

      Hey Tina

      I am really sorry to hear that about your son sounds like he when to my school Hendred School in Oxfordshire really something they were but for me would been easier to deal with if i was told at 18 from the docs that i could be heading back down that road again in later life i would of stop the Rugby . like all my friends and family can say i am not much for words but my hands and my feet is all i got . like for me sport was important as it was for healing my mind as i had a lot of anger disappointment and it was away to let it go without taking it out on people . And just the fact i am here at 28 still single and reading all this kinda puts me off dating as i want to be there for her much as she is to me. I know it sounds greedy i guest it just me dealing with the shock. Hope you don't mind me asking what disability are you ? and i hope you son knows how lucky he is to have you in he life as you sound like a really strong lady . and i hope you son is ok and dealing with the pain easier as it sounds people gave up on him to soon when they shouldn't of done what is wrong .

      Regards

      Robert

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    • Posted

      Hi Robert

      Yes my sons school werent good, especially when he got accused of being lazy at 5 years old, because he asked for help to get his coat and lunch box from his peg at the end of the day, but they expected him to do it all himself and hold on to it while pushing himself in his wheelchair back to class! I certainly had a few words to say about that, especially as it was the SENCO who did it and should have known better.

      I think my son was lucky with his Consultant who made it clear how severe his Perthes was and that when he recovered, sports was going to be limited for him, he wanted to try and join in but the pain and weakness stopped him and now he doesnt do any exercise, which has had detrimental affect on his weight, especially as his learning difficulties cause obsessive eating and i have to hide food!

      You really shouldnt hold yourself back from meeting someone, you sound a determined young man who can offer a lot to a relationship and it would be very sad if you allow Perthes to dictate the rest of your life. There are many wonderful people out there, who will accept you for who you are and want to be with you through whatever may come.

      My husband and I met on a blind date through friends, within 8 weeks of meeting my health took a downward turn and despite this and me already having a daughter, we were engaged within 3 months of meeting, bought our first house 4 weeks later and he married me 8 months after meeting, despite knowing i might not be able to have another baby.

      He had rarely been in a hospital til he met me, but i was in and out numerous times, we then went through IVF, lost 3 babies, had multiple operations and was very poorly, physically and mentally, but after 6 years together we eventually had our son.

      Shortly after having my son I developed a heart condition, i have arthritis in my knees, problems with my lower back and shoulders, hip bursitis, severe Fibromyalgia which causes my main disability and some days are hard to get out of bed, other days i need a wheelchair or manage a short walk, but everyday i suffer severe pain in every part of my body and take multiple medications to try to exist.

      Having my son keeps me going and fighting for what he needs, keeps me going, I'm currently fighting to get him full funding to attend College on a course to prepare him for the big bad world.

      What he really wants to do is Photography, he has just taken AS level Photography at sixth form. It's his passion and he is very talented at it, im currently trying to think of a way we could start his own business and sell his work, he struggles with social interaction and with literacy and handwriting, so needs quite a bit of support in those areas, but now he is 17 it seems all extra support is hard to find and really worries me for his future.

      Sorry to have gone on a bit, but its rare to talk to someone who gets the affect Perthes continues to have on your lives.

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    • Posted

      Hey Tina

      You are very strong lady in deed with everything yourself you going through with great support from the husband sounds amazing really losing 3 kids must been of been hard on both of you , Have you consider making your son a photo art gallery where he take the photos and people can come in have a look and buy the photos they want like in a summer house in the summer have open days. and facebook do great thing for advertising now that's how i started my Touch rugby group for males and females to come and play a new sport? i must say tho its been great talking to you as i never been able to talk about this to anyone until i found this site i was always told it over now shut up about it when it clearly isn't . and i always get asked on my hip why i got a scare there what always scares people too lol .

      Kind regards

      Rob

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    • Posted

      Thank you Robert, you're very kind. That's a great idea about doing a gallery for my son, and it could keep him busy sorting out all the photos he wants to use, as hes now got about 3 months off.

      If you want to chat again you know where to find me.

      regards

      Tina

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    • Posted

      Hey Tina

      Yeah i love to keep in contact with you and family if you want i can send over my email in a message as you been good to me with all the help ?

      Regards

      Rob

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