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

    That would be great Susan and if you have any advice I will certainly try it and get back to you. I also take the point about not doing anything that does not feel right. I have often done stretches which hurt a lot thinking it will do me good and it makes it worse. In fact virtually all the exercises I was given by the phsyio made it hurt but I progressed and payed the price afterwards until I eventually gave them up too. Thanks again.
    • Posted

      Based upon what you've told me :

      - When lying on your back with knees bent knees won't drop easily to your right side.

      - Apparant longer left leg

      I think the following muscles are likely to be key players:

      I know that you feel no symptoms on your right side but I expect the right side is largely responsible for the problems in your left hip.

      There are some muscles that you are convinced are tight but it quite often feels that way when a muscle is overly stretched so try trusting me on this - just for a couple of days. It's likely that where you feel the soreness and symptoms is absolutely NOT where the dysfunction is.

      Although as I said, don't do anything that feels wrong....because I am just testing a theory here!!!!

      RIGHT SIDE

      Weak, overstretched gluteus medius/minimus

      Weak TFL

      Tight adductors

      Tight psoas/Iliacus

      Tight, overactive QL

      Tight, overactive obliques

      Tight, overactive gluteus maximus.

      LEFT (SYMPTOMATIC) SIDE

      Overstretched (possibly weak) Adductors

      Overstretched (possibly weak) Psoas/Iliacus

      Weak gluteus maximus (possibly over-stretched).

      Tight, overactive gluteus medius/minimus

      Tight rectus femoris

      Tight TFL

      There will be all sorts of other details in your specific case that interfere with this but I think these will probably be the key players.

      Here's what I suggest you try (in this order):

      Foam roll (trigger point release) on the following:

      1. RIGHT adductors, psoas, QL, gluteus maximus and obliques

      2. LEFT gluteus medius/minimus, rectus femoris, TFL

      Stretch

      1. RIGHT adductors, psoas, QL, gluteus maximus and obliques

      2. LEFT gluteus medius/minimus, rectus femoris, TFL

      Strengthen / activate

      1. RIGHT gluteus medius/minimus, TFL

      2. LEFT gluteus maximus (and possibly psoas and adductors)

      The tricky thing here is that because of your dysfunction there's every chance you'll compensate and not do the exercies correctly. But give it a try and see how you feel after a few days.

      Don't stretch too aggresively. Just gently lower into position and hold until you feel a release, then go a bit futher. 2 min hold for each stretch if you can - at least 30 seconds. Google for suitable stretches and strengthening exercies. The Trigger Point book will help with identifying muscles to foam roll.

      At least once a day - a couple of times if you can.

      DON'T attempt to stretch any of the muscles that I've identified as weak or overstretched.

      Later on (maybe tomorrow) I'll video me doing the set of exercises that I think would work best for you and will PM you the link.

      Don't be polite and pretend it helps - be honest!! LOL

      None of this should feel bad. Normal tightness is OK to stretch but I'm sure you're familiar with the feel of a muscle that doesn't want to be stretched. Don't force it.

    • Posted

      That's really detailed and helpful Susan and I will definitely try what you've outlined there.  I'm also very impressed with your level of knowledge about all this! I also really appreciate the chance to see the exercises and look foward to seeing them. Thanks again, David
  • Posted

    Hi Susan,

    I have just been out for a walk, along some flat areas and some slopes. I took my Nordic poles with me. After about ten minutes my right hip started to stiffen up. I then used the top of my Nordic pole to perform trigger point therapy, driving it into glutes and (I think) the Ilio-tibial band. All around the hip anyway, where I could feel trigger points. I continued the walk without stiffness, and without pain, walking with a normal gait.

    The consultant wanted to do THR for me in July. Glad I refused!

    Thank you so much Susan for all your wonderful help. I look forward to your book and perhaps video.

    • Posted

      That's wonderful claire. The Trigger Point Workbook is a godsend. But it will only give temporary, symptomatic relief. The fact that you can temporarily relieve sysmptoms by working on soft tissue is an extremely strong indication that the hip joint isn't the cause of your pain. It's not 100% certain but I'd have thought there's at least a possibility of a full and complete cure?

      I'll do my best to help you to figure out how to go about that in the book and website! I'm sure it's possible and if I don't come up with all the answers I'm sure someone else will build in it.

  • Posted

    It is good to feel empowered, to be able to relieve the symptoms oneself. I cannot thank you enough, Susan. To be able to walk normally makes me feel euphoric!
  • Posted

    A quick update

    *******************

    I've had lots of requests (here and in other places) for a book or website. I finally decided to go ahead with it and once I started structuring my thoughts quite a few things that I hadn't considered slotted into place. I now see the pattern and understand exactly why and how things went wrong with me and why corrective exercise put it right. I think I can provide much more targetted help than I've managed to do so far.

    Because I have first hand experience of the condition and the process of curing it in myself I have knowledge that health professionals can never hope to gain. I can however learn what they know. That has given me a big advantage and an ability to see things that they have missed.

    I really do believe I have come up with some theories that could make a huge difference to very many people. Even to people that have had relief of symptoms but suspect they do still have OA - I'd say keep a little bit of your mind open until you've seen the material in the book. I don't want to raise false hope but I think when you see my explanation of exactly WHY twisting of the pelvis leads to hip problems you'll be able to test and visualise what's going on in your own body and make an informed decision from there.

    Absoultely some people will have OA that is NOT due to muscle imbalance. But I think many people will, like me, find symptoms disapear when they address the muscle imbalance fully - not just partial correction. If you have a feeling you have twisting in your pelvis, a longer leg then, one hip hitched up, then these are big indicators that your real problem (or at least part of it) is muscle imbalance. I will provide detailed information on how to check.

    I've decided to take three months out from work (I'm self employed) and focus my efforts on getting everything documented in a website and a book that tells my story, describes the precise details of my imbalance and my cure and provides a detailed self-help section for others.

    I've written to all the health professionals I've consulted over the years in order to get details of their physical examinations. I'll have them re-examine me to provide sound proof that I really am cured. This will give a detailed and accurate timeline of how things have progressed. So you know I'm not just some crazy lady making things up!!! LOL

    I obviously have some concerns about writing a self-help book without any medical knowledge - there could obviously be things that people with certain conditions shouldn't do. Things that I wouldn't be aware of. So I have written to various medical professionals that specialise in OA to see if there's any way for the book to be checked over - or even to see if there is any mechanism by which a 52 year old with no medical training can do some kind of research. So can I test out my theories? It's the best I can do. Failing that I'll just put a big warning to "Check with your doctor that it's OK to try this".

    There will need to be a small charge for the book to cover costs, but mainly I want this to be a useful resource - not a business venture! Anyone that can't afford the book can have it for free.

    I'll have the website online very soon and will mail everyone with the URL.

    • Posted

      Looking forward to the book susan.. go for it and best of luck.pat
    • Posted

      Wonderful news, Susan. I am looking forward tremendously to your book and web-site.

      I have been wondering if my own muscle imbalance is due to 30 years in my dental practice, twisting to the left, either seated by the patient or standing up. My right leg is shorter than my left.

      Good luck and best wishes.

    • Posted

      HHi claire.just to back up your theory.I am an optometrist for 20 years .in the same slightly twisted posn all day..think its my root problem. Also looking forward to the detailed step guide to addressing it.. best of luck
    • Posted

      Claire, yes - that would definitely be enough to cause something like this I think.

      It's known that the body adapts to whatever we ask it to do most. That's how postural problems develop. It's also how athletes get very specialised in certain movements through training. It's likely that anyone that plays golf, tennis, football or has a job that involves one sided twisting will have a tendency to rotate one way. Normally it's not symptomatic and we're not even aware of it.

      Whether or not it leads to problems probably depends upon a lot of factors. If the twist gets very extreme it could reach the point where your brain perceives risk of damage and 'locks down' the body. Injuring a muscle or joint could cause a protective lock down that becomes self re-enforcing so doesn't go away when the injury clears up. In my case I believe (but can't be sure) that it was due to the fact that I was under tremendous emotional stress - both my parents were dying under unpleasant circumstances. It's known that emotional stress - or any stress for that matter - will cause muscles to tighten up and stay tight. That would be enough to overload the dysfunction and cause a lock down. Once your muscles lock up a vicious cycle develops that is near to impossible to break.

      It's too complex to explain here why that locked down twist in your spine would produce all the symptoms of hip OA but I will explain it very clearly with diagrams in the book. I can even produce an animated simulation that shows what happens - I'll put that on the website.

      It's not only OA symptoms that would result from this. Also things like SI joint syndrome, perhaps hip impingent - also shoulder, neck, knee, foot (e.g. bunions) and spine problems. I guess that where you feel the pain will just be a combination of where your particular weaknesses are and where the precise nature of the tight and weak muscles places the most load. Proportions of limbs will no doubt have a bearing simply due to basic mechanics - length of limbs, width of pelvis etc will determine where the strain is focussed. I have very long femurs - does that make me more prone to this kind of thing? Maybe.

    • Posted

      These patterns are starting to emerge. Perhaps it will be an idea to think about putting a survey on the website so we can gather together some data.
  • Posted

    Another little bit of positve news.

    The Senior Lecturer in General Practice at the OA research center (in the UK) has offered to talk to some of his colleagues - principally research physiotherapists and rheumatologists who have an interest in

    OA. No guarantees, but there's a possibility they might be able to help validate the approach that I'm putting into the book.

    I contacted this man because I had read an article he'd written about how OA should be thought of, diagnosed etc and he was clear that it shouldn't be considered as a natural part of aging or as something that couldn't get better. He described it as 'wear and repair' - the problem occured when wear was happening faster than repair. Which kind of supports what many of us are thinking/hoping! He also said that he thought the health profession weren't currently doing a good job of helping people with this condition. He's someone that sees more needs to be done so here's hoping he can help. smile

    • Posted

      Hugely exciting news, Susan. To have people you can collaborate with would be wonderful. All this time researching alone, sharing with others, and now the possibility of involving professionals. Your work deserves their acknowledgement. I hope this happens soon.

      I've independently published two novels, by the way, both print and ebooks. If you get stuck at any point producing you own book, I might be able to help, 

       

    • Posted

      Thank you Fran - I'll take you up on that offer of help. I've done some research into how to publish a book but it'll be nice to have someone steer me clear of the pitfalls. I'll drop you a line when I get to that stage if that's OK? Someone else kindly offered help if needed with graphic design.

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