Problems diagnosed as Osteoarthritis CAN be cured in some cases.

Posted , 118 users are following.

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.

31 likes, 607 replies

607 Replies

Prev Next
  • Posted

    I've been busy all weekend and the self-help website is now online.

    You'll find the url in my profile - or pm me for details.

    I just want to say a huge thank you to all of you guys. It's only through trying to explain things to you - and particularly when trying to work out what to put in a self-help book - that the penny dropped on how to construct a model that would make it easy to diagnose and treat the complex muscle imbalances that lead to AND result from what's defined as hip OA. I've been cured for about 18 months now but I had lingering issues - they have now gone completely! If I hadn't had to keep thinking this through and explaining it I'd never have worked it out.

    I am so excited about this as I'm sure this can make my cure easily repeatable. It WON'T cure everyone - i'm sure some cases truly are the result of genetic defects or similar. I don't know how many will be curable. I suspect lots. But it should HELP every case because regardless of root cause hip dysfunction and muscle imbalance will go hand in hand. Mainly I'm focusing on hip OA here (because that's what I had) but I think it will apply to other types of OA too - that'll need a bit more thought.

    I'm doing my very best to get researchers etc to look at this. One researcher is looking into it. Arthritis Research UK just fobbed me off without even verifying if what I was telling them was true. But even without them I think I can explain this in a way that you can help yourselves or take my info to a physio and get them to help you.

    Still LOADS of work to do to get this documented. It's going to need diagrams, videos etc to make it easy to understand. All that's on the site right now is a big explanation as to WHY you can't trust an OA diagnosis. You need to believe a cure is possible or you won't try. If any docs or physios read it and dispute anything I say then please get in touch. I want to make sure all I publish is honest, acurate and fair.

    Oh - and i've put testomonials on the site from you guys. Only the stuff that was said publically. If anyone objects please let me know and I'll take it off immediately. It won't stay on the home page for ever but I wanted to convince the health professionals that I'm badgering that people really do want to help themselves!

    Please share the site to anyone you know that might be interested - fellow sufferers, doctors, physiotherapists etc.

  • Posted

    A brilliant web-site Susan, that I will send on to many people. Thank you so much for all the work you have done, to help people diagnosed with OA, and for giving them sound advice and hope. 
    • Posted

      Claire, I wonder if you could help me test something out by confirming my understanding of your symptoms?

      Your job involved twisting your torso to the LEFT?

      You also said you had a longer LEFT leg?

      That you symptoms are in your RIGHT hip?

      Is this correct?

       

    • Posted

      Also, just to check, when you lie on your back, knees bent, feet flat on floor is it more restricted when you try to drop your knees to the LEFT?
    • Posted

      Dear Susan, 

      Yes, I was seated or standing during dental work, twisting always to the left. My left leg is appox. one-third of an inch longer. All my symptoms are in my right hip.

      Yes, when I lie on my back, with knees bent, dropping both my knees together to the left IS more restricted. (If I try to drop just my right knee outwards, it is more restricted than doing the same with my left knee)

      Pleased to be of help.

    • Posted

      Thanks Claire,

      This suggests a different type of twisted pelvis to mine - but one for which my model will possibly explain your symptoms. If you're willing I'd like to use you as a guinea pig for testing out this specific type of torsion?

      When I get to an appropriate point with my model I'll work out what predictions it makes for your case and maybe you can confirm how much of it holds true?

       

    • Posted

      Awesome! Thanks - sod the doctors and researchers. We'll do our own little research study smile

       

  • Posted

    I have just logged on and seen the website Susan and it looks brilliant. I am so pleased for you and also all the people who will hopefully benefit from your tireless efforts and research. I think it's us who should be thanking you for your determination, consideration and sheer guts in pursuing this. It also must have been very demanding along the way  - particularly to continue to answer questions so comprehensively while building the website and I am really grateful for the exercises which you suggested. I'll let you know how I get on with them meanwhile once again a huge well done. All the best, David
    • Posted

      Thanks David - can you clarify one thing for me again as I think having re-read I might have missunderstood.

      When you lie on your back, knees bent, feet flat on floor is it more restricted when you try to drop your knees to the LEFT? I get confused because I'm thinking of what the sacrum is doing which is the opposite of wha the knees will do!!!

  • Posted

    Yes that's right Susan. When I lie on my back, knees bent, feet flat on floor it is more restricted when I try to drop my knees to the left. Also I was going to PM if that's ok with an idea I had. 
    • Posted

      Sure - pm me.

      David, I'm really sorry but I miss-read what you told me before. Hold off on those exercises for now as you're rotating the opposite way than I thought! If you give me a few days to get my model worked out (I'm I software engineer so needless to say it's all getting programmed up in a spreadsheet) I should be able to make much more reliable predictions with regards to what's out of balance (and how to put it right - or at least ease symptoms if it really does turn out to be a joint problem).

      Sorry for telling you the wrong thing to do - I need to be more careful when I'm reading what people tell me!!

  • Posted

    No problem at all Susan and those exercises have been causing me no difficulties at all as regards pain etc so I don't think they have done any harm - quite the contrary probably as any gains in flexibility seem to help. 
    • Posted

      The trouble is, you can sometimes make things feel better by stretching already overstretched muscles - but you're getting your flexibility from the wrong place. So just hold off for a day or two and I'll come up with something more appropriate.
  • Posted

    https://patient.info/doctor/osteoarthritis-pro

    https://patient.info/health/osteoarthritis-leaflet

    www.arthritisresearchuk.org

    • Posted

      Hope4Cure - I'm assuming you're posting those links to tell us what we already know. That the health professionals insist that there is no cure for OA? That muscle imbalance is NOT considered by them to be an alternative diagnosis to OA?

      Well, my case proves that theory wrong beyond all doubt. I'm hard at work trying to get the powers that be to look into my case and understand HOW I was cured. Also to get them to look at my model for diagnosing and treating muscle imbalances. (It took 9 years of research to figure out how to treat myself!).

      The lecturer in charge of GP education from one of Arthritis Research UK's main research centers is talking to his colleagues and trying to find someone to help me to validate my research. The trouble is, the 'system' doesn't expect someone who's not a health professional or researcher to come up with solutions so there's no mechanism for having my solution reviewed!

      Arthritis Research UK have my website URL and I'm told someone will look into it. I've also contacted a number of other research facilities in the UK.

      In the meantime I'm doing my own research. The things is, the doctors will give out harmful drugs and do unnecessary surgery. That's not good. My approach just involves doing some easy 100% pain free excercises. It can't do harm. It can only do good.

      If anyone knows of other places that might verify my approach and make sure that my cured case (I have evidence) is recorded and investigated I'd get in touch with them in an instant!

      I hope that puts your mind at rest. smile

    • Posted

      Moderators - who can I contact at Patient with regards to this matter?

      It's a crazy situation. I was diagnosed by a leading UK specialist - my case was described as 'classic'. There was no doubt in his mind and he guaranteed me that I wouldn't get improvement on symptoms. His diagnosis was confirmed by many experts in subsequent years.

      Yet I'm cured. I have proof - if necessary I can even go back to the profefessor that first diagnosed me and he will be unable to find a single OA symptom. What is more, I know HOW to go about rectifying this in other people. If my 'classic' case was incorrectly diagnosed (or wrong prognosis) then it stands to reason that others will too. I've already found some people with cases exactly like mine and I'm sure I can get them a good resolution.

      If you accept that what I say is true (and as I say, it can easily be verified) then you have to admit that it's criminal to tell people that toxic, addictive drugs and surgery are their only options. How many thousands of people are living in pain and disability unnecessarily?

      This is very frustrating because I KNOW people are being given wrong information. I can prove it. But finding someone in a position to put things right THAT IS WILLING TO TAKE 5 MINS TO LISTEN is proving impossible. Everyone just assumes I must be wrong because I'm just a regular person and not a doctor or researcher. (Except of course for fellow sufferers who know my story rings true and have been through it all themselves).

      If anyone has any contacts or ideas. I'm sure someone at Patient must have suitable contacts?

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.