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

    A quick update :

    A lot of people have contacted me to suggest I write a book with more detailed info. For a couple of years now I had been planning to either put up a website or get everything into a book but somehow just couldn't figure out where to start. It's such a huge and complex subject. Everyone's case is different so how do you go about presenting information in a way that's helpful to everyone?

    Well, after a couple of book requests recently I put my thinking cap on and started figuring out how best to present the info to really help other people get similar results to me.

    I wanted to demonstrate to people how curable muscle imbalances could lead to symptoms that are currently diagnosed as hip OA. It's a hard sell because the experts don't even give this lip service. People just assume I'm a crank. If there were any validity in my claims the experts would be looking into it, right?

    I'm a software engineer by profession so tend to think in those terms. Over the past week I've managed to create an animated simulation that shows how the hip moves when the pelvis is twisted out of alignment. This is all done mathimatically. Essentially what I've done is simulate what happens when you take a person with normal hips and fix their pelvis into the position that mine was in. The results really are quite astonishing. The hip doesn't track normally. You get a loss if hip IR in one hip (one of the tests for hip OA) and the knee tracks out when you try to lift knee to opposite shoulder (further proof of OA according to the experts).

    This, along with lots of other info that I've put together in preparation for the book should I think be proof enough for someone involved in OA research to take seriously. I'm going to move forwards with the book and website but at the same time I'm contacting everyone I can think of - from the specialist that first diagnosed me, all the physiotherpists, osteopaths, chiropractors, Arthritis Research UK - hopefully someone will at least look at all my research. If anyone has a contact that might be interested in looking into this please let me know!

    I'll get a mailing list set up in due course so that I can notify people that are interested when the material is online. In the meantime, PM me if you'd like me to add you to that list.

    • Posted

      Thanks for the opportunity, Susan. Please put me on your list. 

      I don't say much here (having said so much at the start) but I read everything that comes up. AND I'm relatively pain free during the day...just sleep that gets disrupted. You have helped me so much, and I think of you as a selfless friend.

      Thank you.

      Fran

    • Posted

      Will do Fran.

      You say it's just at night you have pain. Is it a kind of gnawing, toodh-achy pain - perhaps in your hip, down your thigh, your knee and calf sometimes even?

      There was a point where I had night pain - I'd be fine during the day when I was moving but at night or when I lay still for too long watching tv the ache would start up. It would wake me at night. Pain killers didn't really help much.

      In my case it was nerve pain. Very treatable if that's what you've got. Let me know if it sounds similar and I'll tell you more.

       

    • Posted

      Spot on, Susan.

      Of course, sometimes - from whatever peculiar position I found myself into avoid the pain - I have a lot of soreness in the morning. This quickly passes once I'm active. I have also experienced a couple of bouts of leg cramp (agony for a few minutes until I jump out of bed and bounce around a bit  - must look like a clown!) and I think these were caused by that same positioning.

      The groin pain...which was always more painful than the hip...seems to have gone completely, by the way. Always thought that was purely an injury of some kind. I am very, very careful not to reinjure it.

    • Posted

      Then your night pain sounds like nerve pain. I can't remember if we've already talked about this.

      Based upon my experience with this I think the actual cause of the nerve pain could be your missaligned body causing nerves to be stretched, pinched or compressed in some way. Or maybe (as in my case) as you start to re-align your body you're 'yanking' on nerves that have become attached to soft tissue with scar tissue - or lengthening nerves that have shortened over the years.

      To completely resolve the issue you need to stop whatever it is that's causing the nerves to be irritated. So essentially sort out any remaining muscle imbalance or movement impairment. But the thing is, once a nerve does get irritated it seems to stay that way. So maybe you have fixed the underlying problem but the nerve just won't settle down.

      Drugs commonly used to treat irritated nerves and get them settled down are called tri-cyclic antidepressents. They AREN'T used because the doc thinks you're depressed. Just by chance they discovered that these drugs happen to be very good in low doses at settling down chronic nerve pain.

      They don't work for everyone, but it's known that in many cases they don't work because either the dose isn't titred up high enough (some doctors seem to routinely prescribe 20mg for OA patients but that will often not be enough for nerve pain) or because people don't give it long enough to work. You need to persevere for a few weeks before you can say whether it's been effective.

      Some people have side effects, although most are mild and wear off as you get used to the drug. By starting on a low dose and titering up slowly you can make the process quite painless.

      I used amitriptyline (elavil in the US) and did well on this. Drowsiness at first but I took them at night and this in istelf helped me sleep through the pain. I also got a dry mouth but just kept a bottle of water by the bed - it was fine. I started on 10mg and titred up to 50mg before it had full effect. So maybe 2 - 5 weeks to eliminate pain - I don't remember exactly. I tried reducing the dose after a month and the pain started to come back. After 2 - 3 months I reduced the dose succesfully and was off it all together within 6 months or so with no reoccurance of pain. Although it is safe to take the drug for life if necessary - with regular checks from your doc.

      The side-effect list can be off putting but side effects are rare and many only occur on the coparatively high doses used to treat depression. I researched at length before taking and was confident it was the right route for me. Worth talking to your doc about? Lots of variations of this drug to try if one doesn't suit you well.

  • Posted

    Hi Susan,

    would be delighted if u could add me to that mailing list for when the book is available online.

    Pat

  • Posted

    Susan, I was last in touch over a year ago after receiving a similar diagnosis and prognosis and like you have gone through physics chiropractors and even a postural restoration therapist in Glasgow all to no avail. However the recent consensus is the my cartilage is normal 'for my age' and the issue is gluteal tendinopathy although the evidence is equivocal to say the least. Pain is now predominantly over my greater trochanter and increases with weight bearing. No stiffness and reasonable range of movement although my left hip still has reduced internal rotation compared to the right.This has NOT improved my functioning or pain but clearly management is different although still as problematic. I was interested to see you are hoping to pull together all your research , a massive task, and I would certainly wish to see the end product. Also, is tendinopathy a diagnosis you have ever come across in your travails. Thanks Alison
    • Posted

      Alison, I'm working hard on the book and a website. I'm actually really enjoying collating all the information and researching more to fill in any gaps.

      I think there will be lots of info that will help you. It should be ready in a couple of months.

      You say gluteal tendinopathy - if you have reduced internal rotation in your left hip then tight external rotators (eg glute max) would be a likely cause. You'd think a painful muscle with tendinopathy would shorten. So if lost internal rotation is on the same side as the tendinopathy that fits.

      Alternatively, if you have a muscle imbalance causing your whole pelvis to be shifted out of position then it could 'appear' as if you have reduced internal rotation simply because your hip is internally rotated at rest. In this position the glute max will be under constant strain (stretch) which could lead to tendinopathy. The solution then would be to realign the pelvis to take the strain off the glute max. With the pelvis realigned the femur wouldn't need to be jammed into internal rotation and the glute max would be restored to normal length.

      Lots of other possibilities but I'd be trying to establish for sure whether your pelvis is correctly aligned and whether your hip truly is lacking internal rotation. Is the glute max tight or overstretched? Often it will feel tight and in need of a stretch when in reality it's complaining because it's OVERstretched. I think assessing pelvic position (boney landmarks) is the best way to know for sure. I'm putting together what I think is a good foolproof way of doing this yourself. I'll let you know when it's ready.

       

    • Posted

      Thanks for info. No one has mentioned gluteus maximus only medius so worth looking into. Look forward to your book. Good luck!!
  • Posted

    I have been following the progress of the discussion and I think it’s great that you’re working on the book and website Susan. I’d be really interested in both when you’ve finished your work. Must be a bit of a mammoth task but it’s fantastic that you’re doing this. I think as word spreads the medical profession can’t just keep ignoring the progress you’ve made and the encouragement you’ve given to others.  Just as a practical point I’m sure you’ve thought of this but when the book and website are done it might be an idea to get a press release out to medical journals, websites and wider media including the national press. It doesn’t have to be long – about a page but if you include some good testimonials that always helps. As with most press releases it will be ignored by most but someone may pick up on it and any publicity would help. Health editors etc as listed on contacts pages could be a good bet – especially the daily newspapers which are always looking for stories/profiles. For my own part I’ve been working with The Trigger Point Therapy Workbook for about five weeks now and I think made some reasonably good progress. Like you I have tried so many different specialists and supplements over the years that I have become suspicious about claims from interested parties about the various therapies they are trying to promote. However for the first time with this book I have found something which seems to actually achieve something. I am amazed and frankly stunned that no-one of the so called ‘health experts’ I have visited has ever mentioned it to me and I had to discover it through the dedicated efforts of someone like you online – I only stumbled across the forum and your posting by accident and if I hadn’t I never would have known about this book. I actually found about half a dozen of these triggers points – some of which must have been pretty long standing and from old injuries. A few have eased but the most persistent in my mid and lower back remain. The lowest in the back feels as tight as a cable still so must have been there a long time and will take time to free up I imagine. The result though of massaging the trigger points is that I have more stretch in my back and can even touch my toes again. When I do free squats the pelvic upslip which pulled me over to one side seems greatly reduced although it’s still there. Curiously when standing my right hip is higher than the left and then when I try and squat down the left hip (with the supposedly longer leg) goes higher. I think I also have an anterior pelvic tilt on my left side. I would not have discovered any of this without the book. As a tip to anyone else I also found that the rubber balls you get in pet shops seem readily available and ideal as massage ball. ( I couldn’t get a lacrosse ball when I went looking, called in a pet shop by chance and they had different sizes of rubber balls starting at £1.25 – I bought a couple and they seem much better than the tennis balls I started with.) I also found a  piece of 25mm doweling with a rounded end also works great for getting at the deep muscle in my back – I use about 8” cut of the top of an old wooden broom handle. Unfortunately the primary stiffness and pain from the hip remains, particularly when driving and at night.  Initially there seemed some mildish trigger points around my hip and thigh but these have passed and I can find nothing of any real significance which has made a difference. Therefore I have been trying some corrective exercises from online videos but made things flare up and hurt more I think.  However I’m hoping when I make further progress with the most stubborn trigger points in my back things might improve. At that point when I’ve done what I can I will go and see a specialist in neurokinetic therapy as you suggested when some specialist advice on a one-to-one basis could help. All the best, David.
    • Posted

      David, thank you for this - great advice re the press release!

      This whole twisted pelvis things seems to be so common. The part of my book I'm working on right now will I think be so helpful to you. I can't wait to get it finished as it's going to take a bit of explaining but if I get the explanation right I think it'll help so many people.

      I knew for a couple of years that I had a sacral torsion. Over the years so many experts specialising in this kind of thing failed to make any progress with correcting it. For a long time, as you're doing now, I made inroads into it but something always seemed to keep the problem locked in.

      I'm pretty sure I've now figured out a reliable step by step process for identifying they exact dysfunction and coming up with the perfect set of correction exercises. Get those exercises right and, in my experience at least, the fix is as simple as falling off a log!

      What you're telling me here seems to fit with my theory. If you could give me a little more info it'd help me test that theory out some more.

      You say you have an apparant longer left leg?

      Is it your left leg that's symptomatic?

      What happens when you try to lift your knee to your chest on the symptomatic side?

      Do you have loss of internal rotation in your symptomatic hip?

      When you lie on your back, knees bent and feet flat on the floor is there more tightness on one side when you let your knees drop sideways to the floor? If so, which direction is tightest?

      Thanks again David!

  • Posted

    Thanks for getting back to me Susan and I am really looking forward to the book. I’m glad the advice about the press release was useful. Like I say many times press releases will get ignored and it can be a question of luck who picks up on it. Either way it never hurts to have it ready to forward to someone and it serves as a précis for the subject. The thing is to send it to as many people as possible – including local press/regionally television and radio stations. Try women’s and men’s magazines too. Also (and writing in the third person) if you are happy to do it say you are available for interview with a contact number – it makes it easy for a journalist/news editor to just pick up the phone and get a quick feel for the story if they want to follow it up. To follow up on your questions in my case I was told by the NHS physio I first visited that my left leg was longer so I wore the heel lifts they gave me in my right shoe for about five years. They were only about 12mm thick but I did what I was told but they made no difference so eventually I got rid of them. Yes all the problems are in my left hip. I have probably made it worse by therefore always leading with my right leg when doing physical stuff so the right leg is much stronger – just feels normal really. I can’t get my left knee up to my chest either standing or lying – again no problem either way with my right leg. I have loss of internal and external rotation of the bad left hip. Again when I lie on my back, knees bent like you say the left side is very, very tight. I have often tried forcing the stretch to try an free it up and never learn because it then ache for days after which I know is my own fault. Do any of those symptoms sound familiar? Thanks again for your help Susan.
    • Posted

      Awesome, OK check back shortly. I need to think this through but I'm going to use the information you've given me to come up with suggestions as to what muscles I think you need to stretch and which you need to strengthen. I'm not sure how accurate it will be as I can't actually see you but if you're willing to try it for a few days and give me feedback it will help me a lot. It can't do you any harm - just don't do anything that doesn't feel right.

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