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.
31 likes, 607 replies
Maureen1111 susan67756
Posted
The woman who wrote it happens to be somewhere in the U.K., I believe. St. Albans? Just google Sohan Jalaiai Pelvic Correction and you'll find information and testimonials from those she's treated.
On her website she writes;:
When a pelvis is out of alignment, the spine is out of alignment. When the spine is out of alignment, there are adverse effects on the neurological system. For example - nerves entering and exiting the spine may be compressed and thus unable to perform their function of ennervating the major organs to the full extent. The body will not be served energetically as it should. Circulation and metabolism will be affected, and digestion and elimination can suffer. Legs will be out of alignment, causing knee and ankle problems. More weight will be placed on one hip than the other, causing more wear and tear which can result in the need for hip replacement. And so the list goes on.... The skeletal system is pulled out of alignment by the myofascia of the body (soft tissue) - thus, our bony structure can be maintained in correct alignment ONLY when our muscles and fascia are balanced and operating in the correct way. This point cannot be over emphasised. It is a common misconception that we are held up by our bones, in fact our bones are held up by our soft tissue. Tension or weakness in one area of the body will inevitably affect the entire structure. In short, and to quote Dr. Rolf "BONES ARE WHERE THEY ARE BECAUSE OF THE RELATED MYOFASCIAL STRUCTURES".
Perhaps some of you who are near her can seek treatment from her.
susan67756 Maureen1111
Posted
I have no idea what this lady does, but I think lots of people are aware of the types of problem that occure when an imbalance develops (not so much mainstream healthcare professionals, but chiros, osteopaths, those specialising in myofasical release, massage etc). The difficulty lies in untangling the mess. All claim to be able to do it reliably but in my experience few deliver.
The reason I'm thinking right now that Functional Patterns shows so much promise is that a) they have a unique and I think excellent grasp of how the body SHOULD move, and b) they use the whole spectrum of techniques to get results - along with some unique ideas of their own.
A lot will rely on 'clicking joints' or massage & manual mainipulation. But I think for a complete fix with a long standing problem you need to combine all sorts of techniques to ultimately get the body moving freely and correctly permenantly.
But thanks - I will try and track down her website
jacquie16342 susan67756
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After being a very active sportswoman - basketball, volleyball, squash, skiing, runnin (2 London Marathons) , and having dislocated my left knee when I was 12 (I did this three times) I had a right hip replacement last year, after having suffered joint and back pain for some years. GP would just say ,you are too young, they wont do anything. Because I was left for so long, recovery is slow. No Physio was offered after the op - and then I got a DVT - they think two days aftre the op. this slowed down recovery. After seeing OH Doctor, who was surprised I had not been offered remedial physio he suggested I see my GP etc. Upshot is - I have been attending private Sports physio for about five months, and although I have a way to go, feel more in control of my mobility!!!!! She talks such common sense - I shoul;d have been doing physio BEFORE the op to build up!!!!! I do the resistance exercises she has given me regularly, and can now stand for about 10 minutes or so at a time. Doesnt sound that good,but It is so much better than was. I agree with you, someetimes you have to try a different route. I have not actually been given any advice about OA - from GP or Hospital, only that they can do nothng for my back. Well, with proper physio and taking charge of what you do helps!!!!!! Thanks again.
dpj susan67756
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susan67756 dpj
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The fact that the doctors and physios all came to the same conclusion with just a short exam is down to the fact that the test
is very simple and only takes moments.
My diagnosis was initialy made by an extremely highly regarded specialist. I paid (10 years ago) something like £300 for the appointment. He'd been in surgery and was running late. I got less than 5 minutes for my money and he spent most of that insisting that there was no possibility of a mistaken diagnosis and that my symptoms were classic. He had no doubts.
Years later I mentioned this to a physio and his comment was "Even if you'd had half an hour with him he'd have simply padded things out. The exam only takes moments."
The exam can very easily give false positives though. For example, there were possible treatable soft tissue causes for all of my symptoms. The only way to rule those out is by treating them. There are no experts in this field and no repeatable, tried and tested method. It is simply not cost effective for the NHS or the paying patient to go down the route of ruling out soft tissue causes. I think this is why they make the snap OA diagnosis - cost and unreliability/lack of procedures rules out exploring the other possibilities. Also, it's been pointed out to me by more than one physio and GP that 99% of people are too lazy to do what's necessary to turn these problems around so it's really not worth bothering.
If you're determined, stubborn and persistant I think there's a chance!!
Describe in as much detail as you can your symptoms and I'll let you know if anything strikes a chord with me.
Describe your pain - what does it feel like? Where do you feel it? What relieves it? What makes it worse?
Are you aware of any postural problems or movement impairments? Slouching, knees or feet rotated in our out? tilts and twists in the pelvis?
If you have lost range of motion then describe (so internal rotation of the hip, extension etc?)
Do you have symptoms anywhere else in your body?
I'm not trying to diagnose you!! LOL Just point you to anything that I've come across that might help.
Sometimes I think a good personal trainer might be the best person to help with these issues. I've watched a few that work in my local gym and they're pretty knowledgeable and good at spotting when people are moving incorrectly and knowing how to fix it. Of course, you also get a lot that are clueless so finding the right one would be tricky. Then paying them £30 per week or so.....
dpj susan67756
Posted
The pain since that time has been a bit of a movable feast - often in my hip but sometimes it feels like a 'toothache' dnwon my whole leg. (Worse at night). Then I get it in the knee and calf and even foot sometimes. Recently it has got worse driving and I cannot sit for long periods. In fact I wonder if sitting at a desk for too longer triggered it all in the first place. About 15 years ago I started working for myself and spent a long time writing in front of a computer. I usually feel better when I'm walking and moving about - although digging makes it worse. I also do quite a bit of boating and sometimes that can make it worse it if I hold the same position for a long time.
One physio told me I had one leg (my left) longer than the other. A consultant afterwards said that was rubbish and the length discrepancy was within the normal range. However I fitted the heel lifts the phsyio said I should use. I had them about 6 years then took them out a couple of years ago and have noticed no difference.
I try and do stretch exercises. The toughest is when I lie on my front and try and bring my left heel up to my back in a thigh stretch. It is very stiff but eventually I can get it the whole way - you pay a price in the pain but it eases off afterwards.
Sorry I can't be more specific about the pain but it shifts around a lot. My left leg where I have the hip probelm has also got weaker. However when I try muscle building exercises again i seem to make things flare up. I don't have symptoms anywhere else but the rotation in my left hip is limited. For example if I lie on my back and lift my left knee up I cannot move my left foot much 'outwards' as it were. It has been like rthat since the initial diagnosis and i was told thios was a classic symptom of OA. Also it is stiff to get down when tieing shoelaces etc - so I compensate I suppose and bring my leg upwards and inwards to meet my hand.
The thing is I know I have favoured my right leg a lot doing physical work etc which has made the stiffness and lack of movement in my left hip worse.
I also tried acupuncture. The needles did nothing but the Chinese masseuse seem to help free it up a bit but they was still no cure. I hate - hate - the thought of surgery. It seems crazy to cut so much of a joint away with so little consideration of why that should be necessary. I, like you, have always felt there must be more to it than that. Thanks so much again for responding - it's really kind and if you have any tips I would love to hear them.
David
susan67756 dpj
Posted
This is all promising David. Very similar to me. I'm not at 100%, but 10 years after the initial diagnosis I'm infinitely better than I was back then despite being told that by now I should be a few years into living with a hip replacement!
Here then is another 'possible' diagnosis (this is my story, but yours sounds like it could fit in many ways).
A twist in the pelvis can easily occur through years of one sided use. Particularly in martial arts, kicking sports etc. We all tend to develop a little bit of one-sided dominance which, due to the way in which the body works, will lead to a degree of twisting. In most people it's not enough to ever be noticable or cause issues.
If you have a twist in your pelvis that will cause an *apparent* leg length discrepency. This simply means that because of the way the pelvis is lining up one leg is longer than the other despite the actual bones being the same length. In other words - they can be restored to the same length!! So that leg length discrepency is a possible clue.
Imagine then that you have a twist and tilt in your pelvis.
It's not hard to imagine what would happen if your pelvis 'stuck' or started to favour a particular phase in the gait cycle. With the boney landmarks all shifted out of position the attachement points to the muscles have moved. Some muscles will be over stretched, others slack and yet others will be at a mechanical disadvantage and find it difficult to do the job they are supposed to do.
Looking at my case then. My pelvis was twisted back on the right side, and tilted. So really held in a weird position - due to years of one sided karate practice. This led to weak atrophied right glutes, tight TFL, quads, psoas and iliacus and adductors. When an important muscle is weak and inactive the nervous system won't allow you to get into a position where you're reliant on that muscle. It starts to fire up other muscles to stabilise and support your body. You end up with a cyclic problem - the glutes can't strengthen because the tight muscles won't allow them to work through their full range of motion. The tight muscles won't let go until the weak muscles are strong enough to be able to support you safely. This is why corrective exercise typically has such poor results.
I too had a sitting job (also self employed!). This compounds the problem adding typical 'sitting job' symptoms to the twist.
This would explain your lost range of motion and your other symptoms.
My guess is that your groin pain is caused by trigger points in the tight, overworked (or weak, atrophied) muscles.
So in my case - groin pain due to a tight psoas, obliques, rec fem, TFL, glute med etc. The pain would move depending upon which muscle was currently tightest. So for example, if the TFL was tightest I'd feel the pain in one place. If I got that loosened of a little the psoas might now be the muscle that's most restricting movement and that would become the new source of pain. If I'd been working hard perhaps trigger points in the glutes would flare up and I'd feel it there.
The ache down your leg - sometimes just in your glute? Other times the outside of your hip, down to your knee, the side of your calf and even right onto your foot? Worse at night or when sitting/resting? I'd bet money it's sciatic pain. I had that for a while. Probably caused by a tight piriformis pressing on the sciatic nerve. Once the nerve flares up it will often keep grumbling long after the source is gone. I **STRONGLY** recommend you have a word with your doctor about this possibility and see about getting onto something like amitriptyline. Google amitriptyline for nerve pain to learn more. I had this for several months - eventually leading to severe uncontrollable pain. The amitriptyline settles down the nerve - it can take a few months. Then you should be fine. Any lingering pain can be in the mind. Google "pain all in the mind youtube Lorimer" for a video explaining this. If you come to the conlusion that it could be partly in your mind get back to me and I'll tell you how I resolved this issue!
So, my guess is you can eliminate that dull 'toothache' with amitriptyline or similar. Although you will need to address the cause - probably the piriformis being tight else it'll probably come back at some point.
Then it's just a matter or rebalancing all of those muscles and that is tricky. Trigger point therapy should help - but DIY. Use the book I recommended in this thread or get a lacrosse ball or foam roller and use it to dig into all the muscles around the hip. You'll get to learn where your tight spots are and this will give you lots of symptomatic relief.
Working on the trigger points will only provide you with temporary relief. You'll need to fire up those lazy muscles. *Probably* the glutes. However, you'll have huge problems doing the corrective exercises correctly because everything is locked down. After all these years there will be fascia involved, tight ligaments, joint capsule etc.
If you can find someone qualified in NeuroKinetic Therapy close to home it would be worth paying them for one or two sessions to see what they can come up with. Their speciality is in figuring out what muscles are lazy and inactive. But don't spend too much on any one person as if they don't make big inroads in a couple of sessions then chances are they're just stringing you along. I think really you need to just keep educating yourself, occasionally getting some expert help (but don't pay out too much for this as it's mostly false hope) and just keep improving rather than sliding backwards. It's a long haul!
I hope that helps. It's a lot to take in. I can expand on any of it if necessary!
dpj susan67756
Posted
All the best
David
Trixybelle susan67756
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I am sure to see my consultant next Monday for the report on my mri. He had already told me there is no cartilage in my right hip , so it is just bone on bone .
He said my only option is a hip replacement but I'm only 38.
My symptoms are pain during sleep, unable to tie my shoe laces comfortably . I can usually walk for maximum forty minutes but usually use my babies pram for support.
Di you have any advise or suggestions on what to discuss with the consultant.?
TIA
susan67756 Trixybelle
Posted
Trixybelle, I think it's certain that in some cases the worn hip IS the root cause of the problem else why would joint replacement resovle some peoples symptoms?
However, even where the joint is the root cause the resulting instability or pain will cause the muscle imbalances and postural problems/movement impairements that I've been talking about in this thread.
To my mind then EVERYONE will benefit from addressing the soft tissue problems. It is known (your consultant will support this) that some people have virtually no joint degeneration and lots of symptoms. Others hae virtually disintigrated joints and no symptoms. It has to always be worth addressing the soft tissue problems to see how much you can improve things regardless of what MRI's and xrays are saying. Even if hip replacement turns out to be your only option you'll do much better with that if you get the soft tissue into a good state first!
As I've said before though - there is no affordable and reliable way to approach this within the health system. Lots of experts will say they know how to tackle it but generally this means that a variety of different specialists have had success in treating this with *some* people. At this stage I think a lot of it still comes down to luck - happening to find the person that randomly does the right things to get your particular dysfunction moving in the right direction. You could spend a lot of time and a small fortune getting nowhere. Or you could get lucky and get great results in a couple of sessions.
In my case (which the specialists say is classic OA) the secret is a combination of MFR (so myofacial release - essentially a kind of massage) to loosen of the tight fascia and muscle; activating and strengthening weak/lazy muscles; mobilization/stretching to restore full movement and re-educating the nervous system to restore correct posture and movement patterns. Again, in my case I've found that it's not a quick fix - more a case of continually moving things in the right direction so you're getting better rather than worse. Learning about how your body responds as you go.
10 years after my diagnosis I'm running comfortably and with good form, lifting weights, climbing mountains - nothing much I can't do really. I still have a little bit of restricted range of motion, but more down to pelvis position than hip. And I have no pain. Ever. The remaining problems are steadily improving.
elkio susan67756
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I was diagnosed with OA. My filling was that it was not correct. After a search I came across this post. I am visiting a chiropractor. Exercise helps but my pelvis is twisted and my lower spine is tilted. Ones all my bones are adjusted I think exercise will work better.
Am I doing something wrong?
susan67756 elkio
Posted
Just don't pay out too much. It's easy to get ripped off when you're desperate for a cure! Mostly with these tricky problems I think you need to gradually educate yourself, taking a little help every so often to move you forwards.
hope4cure susan67756
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Now muscles are what hold our bones and bodies up. A good practice to maintain muscle and tendon strength is important. Any clean good diet and appropriate supplements can keep us in shape according to the degree of the disease. I have had both my hips cured of OA WITH THR.
many joints can be replaced. Many cannot depending on the degree of OA.
Trixybelle hope4cure
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susan67756 hope4cure
Posted
However, I am proof that what you say is incorrect. I had evidence of joint degeneration on X-RAY. I'm sure that joint degeneration is still there - almost certainly worse - 10 years down the line. I am however virtually symptom free. I can climb mountains, run, run up moutains, lift heavy weights - competetively too. At age 52 I'm physically more capable than most people half my age. Never any pain. I would describe myself as very athletic. More athletic and capable than most twenty-somethings!
The experts predicted that I should have had a joint replacement a few years ago!
It's also known that most people of my age have some degeneration in joints yet no symptoms. Many people have severely degenerated joints and zero sysmptoms. Others have virtually no trace of degeneration in joints and severe sysmptoms.
I think the problem here is that whilst joint degeneration can't be cured/repaired, in many cases at least, the state of the joints has zero bearing on symptoms. Suggesting that in many cases the actual joint degeneration is a benign symptom rather than a cause of the problem. The real cause is, in some cases at least - curable.
Now the fact that some people do fully recover right after THR proves that in some cases at least the joint degeneration is the root cause. But many people still suffer after THR suggesting that in those cases the joint degeneration was a symptom of another issue.
The only way to figure out which is by elimination. Now what do you think is the most sensible approach? To cut away someone's joint to see if it helps or to do some non-risky, non invasive corrective exercise to see if that yeilds improvement?
I appreciate what many doctors say - that 99% of people are too lazy to try to help themselves so it's not worth bothering. I also appreciate that at this stage there is no reliable, tried and tested approach to addressing soft tissue problems. The expertise isn't available. This thread is for the people that want to try and figure it out for themselves. A lot IS known; A lot has been discovered. It's a matter of trial and error and putting together all the pieces. No guarantees of a cure or even improvement. But some people want to try rather than simply going straight for surgery. It can only do them good and if surgery does turn out to be their only option then they'll recover better from that if soft tissue is in better condition.
claire34834 susan67756
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You are giving me much to think about, and much hope. I have zero cartilage in both hips, stiffness, but the pain I manage with the occasional aspirin. What is the prognosis? Will the pain get worse? The 2015 pelvic xray looks the same as it did in 2012. I am very fit indeed in every other way.
Many thanks.
susan67756 claire34834
Posted
If you're managing pain with the occasional asprin, x-rays aren't getting rapidly worse (and if you already have zero cartliage that just shows that zero cartliage doesn't equate to excrutiating pain and sever disability) then I would be hopeful that it need NEVER get worse. And perhaps could get better?
What's to lose by trying?
Google "Trigger Points" - or by the Trigger Point Workbook online (it's not expensive). That will show you how to do myofasical release on yourself. It's very easy to do and can't do any harm. See if you can improve on stiffness and pain with that. If you can then you have an easy way of managing things but you'll need to keep at it as the relief tends to be temporary until you find the root cause. But if that works for you then the next step is to start trying to figure out WHY the muscles are tightening up and forming trigger points. Probably due to a lazy muscle somewhere that's stopped doing it's job.
But start with MFR (myofascial release) and see if you can find some tight, painful muscles with trigger points in them.
claire34834 susan67756
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I am very grateful for your comments
eileen64__UK Trixybelle
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Eileen UK