Problems diagnosed as Osteoarthritis CAN be cured in some cases.

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If you're a proactive individual that's been diagnosed with incurable Osteoarthritis it's *possible* that you can in fact beat the diagnosis and get back to full fitness and functionality. It happened to me.

I should add that I was diagnosed at age 42 and was very fit and active at the time. I think it might be very different for older individuals, people who's condition is advanced, or people that don't enjoy exercise.

Here's my story. I can't make any promises that it'll be the same for you. But I will if people are interested share some of the resources that helped me to beat what I considered to be a life shattering diagnosis, for which I was assured there was no possibility of a cure. I don't know whether to believe I was misdiagnosed and never actually had Osteoarthritis, or whether they're wrong when they say Osteoarthritis is incurable. What I can say is that I was told my symptoms were 'classic' and that the diagnosis was certain - that my symptoms couldn't be explained by anything else. The whole area is so poorly defined and slap-dash that it's impossible to tell. Either way, it means there's at least hope of beating it if that's what you want to try and do.

I've spent 8 years battling against the people that were hell bent on brow beating me into believing I had Hip Osteoarthritis when I knew I didn't. My real problems were ignored - I was essentially left to rot. I was treated like an idiot. Told I researched too much. That I was in denial. Told that I was making my problems worse by training to keep myself fit, strong and active. Told I should swim and cycle and give up all other sports. I was asked repeatedly "You've had numerous experts try to help you - don't you think one of them would have succeeded if this really was curable?".

Finally I've been vindicated. I figured it out for myself. A simple, treatable muscle imbalance causing all of my problems. Obviously I wanted to let the people know that have tried to help over the years. I expected them to be amazed - a breakthrough that could help lots of people. These cases that we think are incurable can in fact be fixed!!

My excitement was met with apathy: [paraphrasing]. "The reality is that most people are inactive and unwilling to put in the work needed to address muscle imbalances like this. Even if the correct diagnosis was made, for most people the end result would be the same. People who are willing to put in the work necessary to reverse the condition are so few and far between that they aren't statistically significant to make it worth the cost of training and research. We were unable to solve your problem because we've not been adequately trained to do so. But well done for hanging in and figuring it out yourself."

Why wasn't I told this BEFORE I discovered the solution for myself? Why did they try to convince me I had incurable OA when they knew how determined I was to beat it?

Here's the reality as I now understand it (as it's been explained to me). This may not reflect every health professionals view, but it is a summary of what I've been told by various health professionals:

GP's are responsible for diagnosing OA. Yet they know very little about bio mechanics (unless they've got an interest and educate themselves).

They don't understand the condition in great detail, but they don't need to. They're working to a script. It seems not to be widely known who writes that script (so who to go to with questions or doubts)...which is a little bit of a worry.

Some know that often it's a misdiagnosis - more forward thinking GP's are aware that it's frequently a treatable soft tissue issue. But like the physios, think it doesn't matter too much as for most patients it makes no difference. They lead inactive lifestyles and any attempts to restore them to full functionality will fail. There is little point in wasting resources trying to give an accurate diagnosis when the end result will usually be the same regardless. So OA is the 'catch all' category you put them in. There is no cure - you manage with drugs and operate if and when necessary.

Even when someone is in great shape, keen to be proactive in their treatment and has an active lifestyle worth preserving there's nothing to be gained in finding the correct diagnosis as there is no one to refer them to to get it fixed. People worth bothering with (because they can be restored to a good, active life) aren't statistically significant enough to be worth the research and training needed to put systems in place to help them.

So, the GP's make the OA diagnosis despite not necessarily knowing much about OA. Who are the specialists then if you're determined to find the real cause of your joint stiffness or pain? Well, there's a bit of an oversight there. There is no one.

Orthopedic surgeons know about surgery. If your problem is an easily curable soft tissue issue they probably won't know enough to detect it. They may well put you under the knife unnecessarily. Or tell you that you have an incurable problem that will deteriorate over time - that your active life is over (that's what happened to me). But this is more a case of them forcing your problem into something that fits their specialist knowledge. Not a proper diagnosis.

Then there's physios. They aren't trained to detect and treat curable soft tissue problems that lead to joint wear and might otherwise be diagnosed as OA. However, some are better than others. Some might actually be very capable. It's pot luck. I think it's unlikely to find someone with these skills working for the NHS, but I may be wrong. I have been told (by a physio) that the failure rate in these cases is 99% within the NHS.

There are people out there that do know how to diagnose and treat these soft tissue problems. And there's plenty of info on this on the internet that you can use to help yourself. It's down to the individual to separate the wheat from the chaff. Contrary to what we are led to believe, OA isn't an incurable degenerative disease. Strictly speaking it doesn't exist. It's a 'catch all' diagnosis used to put people with joint problems in when there aren't resources and training to find out and fix what's really wrong with them. Contrary to what we're led to believe, there is no category of the medical profession with expertise in the multitude of conditions commonly labeled as OA. If you think you've seen an expert and had a reliable diagnosis of OA - think again.

There is no easy fix - that's true. There is no way of knowing if yours is a curable soft tissue problem without trying to fix it. I'm led to believe that official research into OA is centered around keeping this 99% of people that are deemed incurable (because they are perceived to be inactive and unwilling or unable to adhere to the required rehab plan), as pain free and independent as possible at minimum cost. It's simply not cost effective to put time and effort into finding the cause, the cure, or training people to make diagnosis and cure soft tissue problems in the cases where how to do so is already known by some.

But there are people out there that have figured out how to diagnose and cure at least some of these cases. Some speculate that all OA is initially a soft tissue dysfunction. However, this is mainly in the private sector - or perhaps in the NHS, but on an unofficial level. You're faced with the dilemma of separating the fakes from the real deal. Most will claim to be able to help - and many will diagnose incurable OA when they fail. That doesn't necessarily mean you can't be helped. Many tried and failed with me before I figured it out for myself.

But if you're willing to work at it yourself - or maybe even find the right person (which is very difficult) then it is quite possible that what you have is very curable.

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  • Posted

    Thank you Susan! Last year I was in horrible pain, it felt like my spine was on fire and that I had no support in my whole spine, from the neck to the lumbar.  They said I had ankylosis spondylitis and OA.  The chiropractors told me i had stage 4 DDD and osteophytes were growing.  I am lopsided, just like you descrivbed, one hip is higher and more prominent and even on xrays my right collarbone is significantly higher than the other.  I am willing to work this myself, please help me know how.  Thank you! Heather
    • Posted

      Also, I am 5ft 3in, weigh 117 and am 36 years old.  I use to dance and do yoga, but now the yoga hurts too much.  Thank you for any advice you can provide. Much appreciated.
  • Posted

    Hi Susan thank you for all this info. I also discovered the exact same thing as you on my own.  That I have muscle imbalance in my back muscles pulling the back muscles more in one way than another.  Also related are collagen degeneration which adds to the mix causing stiffing of the gluteus muscle.  I also noticed more pain when my body became more acid but the muscle imbalance is major.  

    I found the McKenzie exercises were very helpful and began sleeping with a pillow under my back and doing cobra positions often to stretch or release certain back muscles.  I dont do the exercises nearly enough so my pain is off and on and I am hoping that other things that have been occupying my time can now be put to the side so I can consentrate on doing the exercises regularly to rid the pain.  Thank you so much again for putting this all together it confirms what I thought all along.

  • Posted

    ARe you still got this book
    • Posted

      Hi, yes - if you go to my profile you'll find a link to the website where you can get the book. You'll also find lots of help and info on the website. There's a help forum for people using the book to treat their OA.

  • Posted

    A quick update - I'll be sending out a newsletter shortly. I was asked to add a discussion forum to the website so that people treating their OA using the plan in the book can ask me questions, but perhaps more importantly talk to each other.

    It's early days - not much happening yet, but feel free to browse or post your questions/experiences there.

    You'll find the link in my profile.

  • Posted

    Hi Susan, your post is very interesting. My husband has been diagnosed with Hip OA and so after change of diet, loosing weight, allergies found, am now in the process of looking for some kind of treatment.  I will look up all your recommendations  I live in Angus and wondered if you knew anyone around here you could recommend as I noticed you live on the East Coast of Scotland.  Any recommendations would be welcomed.  Thanks
    • Posted

      Hi gailyross - sorry for not responding sooner. I've only just spotted your message.

      I never had much luck with physios etc. I think there is every chance that some - if not all - of your husband's symptoms are due to muscle imbalance. Check out my website (you'll find a link in my profile) - in particular, look through the help forum, and see if any thing there sounds familiar. By all means contact me if it seems to match with your husband's experiences and I'll be happy to help if I can. 

  • Posted

    HI. I hope you are still there.

    I signed in as a health professional although I am now retired as it seemed more honest.

    What an interesting blog and the 1st one I opened.  So much rings true for me from symptoms, the type of pain and even its disappearance if I press certain spots- though these seem to be a bit ephemeral at times.

     I have had a different reaction from NHS & now Spanish professionals - except my Spanish GP and his Consultant - to you.  My GP practice in the UK was always very keen on patient self help. My Spanish GP is pleased that I am active and not overweight but has dismissed the whole problem as arthritis.

    I found all physios very into exercise. In the late 1990s the local UK team even started what they called a 'Back school' where they took groups of up to 12 people through  gentle, adapted aerobic sessions . E.g. high stepping rather than jogging on the spot.  Half stars instead of star jumps - designed to exercise without impacting on damaged spines.  They also took us through the 5 or 6 standard back stretching exercises to make sure we were doing them correctly. Advised to be done before getting out of bed in the morning while still warm and again last thing at night.

    I kept my prolapsed disc problems at bay for years doing these.

    I first had a prolapsed lumbar disc when I was 16 and in 1990, when I was 42, I was knocked flying (10m or so) off my bike. I curled up to protect my head and landed on my left hip. I knew that eventually I would probably develop some arthritis there  but was determined to keep going as long as possible.  The accident had exacerbated my lumbar spine problems I found I could no longer work as a ward staff nurse nor could I stand for long periods so clinics were a no no so I, sadly, returned to office work.

    After 8 years of increasing pain was sent to NHS physios.  The chap diagnosed that my left pelvic bone was twisted and impacting on my spine.  He manipulated it over 3 sessions and - miracle - no pain.

    Over the years I have had the odd episode of serious pain e.g. after having to sit in uncomfortable chairs at work and have had only one weird physio who advised me against carrying heavy loads or even walking my dogs. (I had 3 large dogs.)  and not to turn my head but to turn my whole shoulders when driving etc. Pah! I thought, (as did my next physio) use it or lose it.  I carried on with all my work, even working as a jobbing gardener part time and lifting a heavy motor mower in and out of my car boot.  But I took care to lift correctly so my muscles were well cared for.  I used a ruck sack for carrying shopping.  I also changed my job back to caring – this time working in ‘care in the community’ with people with severe mental health problems.

    I do, however, live with a constant low level of pain.  Fybro myalgia has also been suggested and I am dealing with that by telling it to go away!  It is an add on if I do have it.

    I retired in 2010 to move near my son and his family in Spain.

    One Sunday in December 2012, when walking my dogs  I felt so brilliant that I ran with them.  By Wednesday my knees started to give and within a week I was in serious pain in my left leg. I thought it was sciatica and kept on walking - often wanting to cry or just lie down at the side of the road.

    February saw me at an osteopath who suggested a diagnosis of a torn ligament in my back connecting the sartorius muscle.  He advised me to stop walking and to rest as he said that with every step I was stopping the ligament from healing. I rested, a friend walked my dogs and bit by bit I started walking with him as far as I could.

    About a year later I went to the GP who sent for x-rays (which, as you know are no use re soft tissue damage) and declared.  'Ah! You have arthritis in all' (in Spanish). He sent me to a consultant who just said arthritis.  No one asked me any pertinent questions and my Spanish was not then up to arguing the point anyway.  I was, by now, in my early 60s and had done physically hard work for years - nursing and gardening- so expected to have some arthritis.

     I have since been treated by 3 physios, an English friend, a Spaniard famous for his brutal treatment methods, so I only went twice, then another brilliant Spaniard and his team. All said that although I do have some arthritis my problem is muscular.  The 1st Spanish guy said that the ligament has shortened and the 2nd concurs.  Unfortunately I have recently had to scrap my car and can no longer get to his clinic easily.  I live in the countryside.

    The physio advised me on some simple exercises and stretches and to try and walk without limping. Difficult as I can either straighten my legs or my back but not both at the same time so that if I stand upright on my right leg my left toes but not my heel, touch the ground.  I am persevering though and the increased walking (10 minutes to the nearest bus stop) is helping.  I have new and interesting muscle aches but they seem to be positive rather than negative aches – if you get my drift. I like best to walk in my old fell bots as the weight helps to swing my leg forward and, I hope, stretch things a bit.

    Anyway I am off now for my daily dog walk.  Usually between ½ and 1 hour depending on how I feel and how much time I have.

    As soon as I get round to it I think I will buy the book you recommended to Fran 4 years ago.

    • Posted

      Hi Helena, sorry I've only just spotted your post.

      It sounds very much as if you have the typical 'twisted pelvis' that always seems to be associated with a hip OA diagnosis. The symptoms too - right down to not being able to look behind you without turning your whole body. 

      Take a look in my profile and you'll find a link to my website there. I think you'll find lots of info to help you. There's just too much for me to type it all here! Also, if I can help in any way once you've looked at all that then please don't hesitate to ask! I'm pretty sure i can help you to make some sense of what's going on in your body.

      p.s. Since that first post I've written a book that has helped quite a few people to 'cure' their OA and become symptom free. The book was a direct result of the discussion in this thread.

  • Posted

    I was just diagnosed with OA too.  However, I can’t seem to accept this, since I was a former softball champion and lift weights.  I just don’t understand.  How did you do it?  What did you do? I got to beat this.

     

    • Posted

      I think there's every chance you can beat it. The most important thing you need is unswerving determination.

      It would be crazy for me to suggest that ALL cases of OA are caused by muscle imbalance - yet I do think that very many are and without a doubt in EVERY case of OA at least some symptoms will be caused by muscle imbalance.

      The medical profession are way behind the curve when it comes to understanding muscle imbalance. They can roll out a few solutions to simple problems but are hopeless when it comes to more complex problems. You can't really blame them - the more complex the problem, the longer it takes to solve and the more it relies on patient compliance ..... which means it's expensive to deliver and will typically fail. It's just not worth the investment in research, training and practice. 

      HOWEVER, to any determined individual that means there's a HUGE amount of hope! I figured it out from scratch - I've worked out methods for diagnosing, treating etc; I've got a very good understanding of what's going wrong and what is more, every person that's contacted me with hip OA falls into the same basic pattern of imbalance.

      To help you understand the concept - think of a tent with guy lines holding up the poles. If the tension of all the different guylines isn't balanced the poles tilt to one side. The human body kind of works in a similar way, but much, much more complex. There are lots of multi-jointed poles and hundreds of guylines. When the lines (muscles) get out of balance the poles (skeleton) tilt in all directions and put undue strain on the lines and the tent fabric (muscles, fascia, tendons etc). It's no use doing what physios do and focusing on one or two lines - the whole body is bending and tilting in all directions (it won't always be obvious). You need to get the tension right in all the lines so all the poles are upright - else the wonky poles will keep pulling everything back out of alignment. 

      It sounds complex, but there is a method to it - a plan to follow. It is still very difficult to do though and takes lots of practice and awareness of your own body. 

      It used to be the case that we couldn't post links here, but they started letting us post links to books. However, at least in the first instance I'd like people to try my website - I've got info and a forum and that may be enough for you. I hate the feeling that I'm trying to push a book on people! I've also recently set up a facebook support  group...early days, but a few people asked for it so we'll see what happens.

      You'll find a link to my website in my profile. I'll try posting it in a post after this one and see if the moderators let it through. It's info that people keep asking for so it seems to me it makes sense!

      Good luck, and by all means contact me if you need help.

    • Posted

      Jenny - here's the link to the website. As I say, not sure the moderators will let it though, but as so many people are asking for it I think it makes sense to share it here. The website (and book) did come about from requests made on this discussion! :

      www.impossible-takes-longer.com

  • Posted

    Hi Susan. Without having to go through your 596 replies (wow) did you have X-rays and mri’s to confirm your diagnosis?
    • Posted

      I did have x-rays and they showed degeneration changes in BOTH hips with my non-symptomatic hip being the worst. My diagnosis was in 2006.

      However, x-rays are no longer used to diagnose OA. Research has shown that there is no correlation between x-ray/mri findings and symptom, and no difference to long term outcome regardless of whether x-rays are used. Most people that have 'radiographic OA' (xray 'evidence'wink are symptom free.

      The recommendation now is that xrays are ONLY used to rule out other conditions. They can not be used to confirm an OA diagnosis or to assess it's severity.  

      There is no test for osteoarthritis. It is a diagnosis of exclusion. You can only make an OA diagnosis after ruling out all other possible causes - including muscle imbalance. 

       

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