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
mary20218 susan67756
Posted
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eileen64__UK susan67756
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I'm not sure that I agree with everything you say......My OA was diagnosed by a Rheumatologist at a hospital....after a referral by a GP
It's true that GP's TREAT arthritis but diagnose it ...to my knowledge anyway.
I'm nopt sure that it is curable but it certainly is manageable.
If you have OA everything {almost} is do-able ..OK not the way the person used to do it but do-able none the less.
I think a lot of people reading your post who have been diagnosed with OA will start to think that they should be healthier than they actually are.They will then feel quite "down" because they cant reach your expectations.
I agree with exercise but not HIGH IMPACT exercise {especially if its hip or knee OA}
I'm a volunteer for Arthritis Care and we believe in self management.....not people getting a diagnosis and then sitting in a corner thinking I cant do anything...I'm useless.....Definitley not.
Oh well.....opinions differ but I'm afraid my talks on Arthrits to groups are mostly about self management and how they can still do most things, not how they can cure temselves
Eileen
susan67756 eileen64__UK
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I'm sure you mean well when you give your talks, and I'm sure you believe with all your heart that everyone diagnosed with OA actually has OA. Or that OA really is incurable. But you're wrong.
One doctor actually told me that she knows very frequently when she makes a diagnosis of OA that it's a missdiagnosis. But she says that 99% of people aren't willing to help themselves. Even if there were relevant specailists to refer them to (soft tissue specialists) the patients wouldn't do the necessary exercises to get back to full health. So ultimately they will end up with shredded joints and probably needing surgery. I got the same from one of my physios - 99% of people aren't worth bothering with as they won't be willing to put in the work needed to reverse the condition (his words, not mine).
That angers me. I believe in live and let live. If someone wants to focus on managing their condition then all the best to them. But I want to fight tooth and nail for my health and I'll work as hard as I have to in order to keep it. I get very cross when doctors and physios tell me that I'm getting sub-standard treatment because 99% of people are lazy. So, sorry if it it makes some people feel 'a bit down', but in some cases OA CAN be cured (or maybe the truth of the matter is that some cases commonly diagnosed as OA simply aren't OA).
I'll do my best to share what I've learned in order to help others on the same journey that I've been on these past 8 years. Because I know how soul destroying it was to only ever hear negativity - dress it up with any fancy language you like - anything short of full functionality is unbearable to some of us.
Mary, I'll be happy to help you any way you can. The moderator has edited out your email address, but send me a PM.
eileen64__UK susan67756
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Sorry the second bit of my post shoud read that GP's DONT diagnose OA
kathleen50414 susan67756
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Hello Susan,
I had two hip replacements after a bad fall because of supposedly OA. I NEVER had a problem with arthritis in my hips before (only my back with a bulging disc. problem too.) but he said, after a bad fall, you get OA. The Ortho. Doc. showed me on the x-rays that my the condition was getting worse,& would NOT get better without surgery. After my fall, I also had severve nerve damage & could only take baby steps after monthe of rehab. He said I also had "ridiculopaphy". Well, I had both hips done, & after MONTHS of rehab, can walk again, but he told me I could never do stairs!!! He also told me that a stationary bike is ok, but not a real bike, & I so miss biking. Sometimes my left thigh gives me problems to where I need a cane. I also hit a deer (he hit me!) & the same thing...now I have OA in my hands, & this is very depressing, as I make my living being an Artist, & it is pure hell to move my hands sometimes The jewelry I make takes alot of strenghth twisting & hammering, ect, & the cortisome shots only last a couple months!. I do hand exercises, & do a warm hand wax treatment 3 times a day, but it only works temporarily. I have also worn hand braces. Is there something lacking in my system that I keep getting supposidly OA, or what Doctors or DO's or natural help I can get? Now my left shoulder has really been hurting lately.
Also, since my Fiance started his job 6 months ago (heavy duty steward in kitchens), he can hardly walk!!! He has always had a ILD problem with his knee, but now I feel like he is heading for knee replacement, & after what I went thru, I hope there is another way for him.
Thank you for all you do~you're wonderful!
Kathleen
susan67756 kathleen50414
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I can only go my own experiences, what research I've done (loads!) and other people that I talk to.
My belief is that they look at 'OA' from the wrong end. A patient has pain, inability to move a joint normall and an x-ray shows degenerative changes. So they assume it's those degenerative changes that are the cause of the problem. The only solution is pain medication and surgery as they've found no way of helping the joint to repair itself.
Now obviously I can't speak for every case diagnosed as OA. But for many I believe they've got that completely back to front.
Certainly in my case, and many others what happens is a mucle imbalance develops in the muscles acting on a joint. This causes it to move incorrectly resulting in pain, stiffness and ultimately joint wear. If the imbalance is not corrected then in many cases, in time the joint will be so badly damaged that it is the main source of pain and needs to be replaced.
The cause of the initial muscle imbalance can be a fall, too much repetition of a particular movement (such as at work or sport), or even just spending too much time at a desk or in front of the TV!
It's an established fact that there is no correlation between joint wear and symptoms. Some peoples joints are virtually diintegrated and they manage just fine. Others have next to no wear of their joints and are crippled. In other words - it seems likely that the joint itself isn't really the cause of the pain and dysfunction.
Surgery or living with pain and dissability are not acceptable solutions if there's a better way. Which is why I think everyone should explore the soft tissue explanation first as complete recovery will in some cases be possible.
The difficulty with this is that :
a) It can be increadibly difficult to untangle the muscle imbalances that lead to this type of problem.
b) Within the NHS there are no experts to help you. If you suggest other approaches you'll probably be told you're in denial. Not because the doctors etc have the first clue about this kind of thing - as a rule they don't. But that's what they've been trained to say - they just work from a script.
GP's, surgeons, physios (unless they've done independent research are frighteningly unaware of how to diagnose soft tissue problems caused by imbalance.
Sometimes people recover simply by changing their main activity. So for example I know a runner that was told he'd developed knee OA. He switched to cycling for a year but wasn't happy, reverted to running and was amazed to find he was now symptom free. He's gone on to set new PB's in ultra distance races and hill races.
Sometimes the problem can be down to a tight 'knot' developing in a muscle. This can refer pain, tighten muscles around the joint and cause the joint to wear abnormally. A simple bit of massage can resolve this completely. So Trigger Point therapy, sports massage can instantly resolve severe cases that are awaiting surgery - the problem just goes away when the tight muscle is treated.
But I suspect most cases are like mine. The whole body locked into faulty movement patterns .It's INCREADIBLY difficult to untangle it all. It took me 8 years.
I hate to say go to some kind of specialist as chances are you'll end up paying a lot of money just for them to ultimately go along with the OA diagnosis rather than admit that they just can't figure it out. I wasted thousands of pound that way.
But, it might be worth trying one or two. I personally think most chiropractors are useless, but some of the better ones that deal with soft tissue problems too can be good at this kind of thing. Osteopaths maybe. NOT physiotherapists. Whilst there are few that are clued up most just work off the NHS script.
Trigger point therapy is worth looking into to see if that gives you relief - you can do that yourself. Google it.
Some websites to look up include Gray Cook, NeuroKinetic Therapy, Postural Restoration Institute (if you're on fb look up their pages as there's lots of info there)
You might get lucky and find a professional that's able to help. But for me at least the reality was that I just had to study, research and figure it out for myself.
I hope this is of some help, and good luck!! You probably should seek the advice of a couple of people - privately. Because if it's something they're used to dealing with you could get big improvements quickly. But if they can't help don't give up hope - keep learning for yourself. And don't pay out too much for too long. Chiros in particular like to string you along with false promises.
lindsay92252 susan67756
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I've just been diagnosed with spine and hip OA, i jog every other day, press ups, sit ups and squats too. I'm trying to keep as fit as possible as like you i believe i can strenghthen my bones, muscles etc to help me live a better life and longer without a wheelchair. I'm 43 now and hoping the pain doesn't get much worse. i walk with a limp always, but jog without one! i'm due at the doctors next week for them to tell me how i should proceed and how many drugs they will try to give me. Are these the right things to do regarding exercise? I swim to once a week and walk my dogs twice a day but i really would appreciate it if you could let me know if i'm doing the right exercises, thanks.x
susan67756 lindsay92252
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I can't really advise you on what type of exercsie is best as each case will be different.
However, my *belief* is that we do all have something in common that the doctors don't as a rule pick up on. There will ALWAYS be a huge soft tissue element to the problem. So movement impairments (altered sequencing of muscle firing patterns), weak muscles, inactive muscles, atrophied muscles, over-active muscles. As we're all basically made the same, there will often be similarities in the patterns of dysfunction, but because we all lead very different lifestyles the precise pattern is unique to each one of us.
Anyway, regardless of whether the soft tissue issues are the cause of the degenerative changes (in my case they were, and therefore totally reverseable in time - but I stress, it was HUGELY difficult to figure it all out) or a result of the joint problems, treating these soft tissue dysfunctions is vital as they will otherwise make your problem much worse and create problems in other parts of your body. It's impossible for anyone to tell how much improvement is possible from addressing the soft tissue problems without trying. Most people don't want to try therefore most doctors consider the success rate low. The bottom line is, if you want to persue this then you need to be very proactive and not count on professional help.
It's common for doctors etc to advise against high impact exercise. However, nowadays many say do it if it doesn't worsen symptoms. It used to be thought that running etc caused OA but now they realise it actually provides protection from OA. With people already suffering from joint problems it's not clear whether running will help. But the sensible approach I think is to do it providing it's not making things worse. You want to stay as active as you can.
One thought to keep in mind. If your problem is the result of faulty movement patterns (highly likely at least partly) then what feels like normal movement to you could well be the cause of your problem. The more you repeat those faulty movements the more you re-enforce them. The more you re-enforce them the worse your problem gets. So, if you aren't moving correctly doing a given exercise (ANY exercise) then rather than do you good it could be doing you harm. It's SO important to understand how your body moves - find out what you do wrong and learn to correct it. It's NOT easy but very important!!
If I knew 8 years ago what I know now I would have got a single appointment with a range of private health professionals. I'd ask around and get recommendations for the very best. A physio, an osteopath, a chiropractor - someone that specialises in soft tissue massage techniques (myofascial release). Find out if there's anyone in your area qualified in NeuroKinetic Therapy, PRI (Postural Restoration Institute) or FMS (Functional Movement Systems) - any of these would I think be particularly useful. If you search for the sites for these things and contact them. They'll put you in touch with someone qualified.
The reason I say just one appointment with each is that in my experience most people won't be much help but you'll spend a lot of money discovering that. Do a bit of information gathering first. Get them all to tell you what they think is wrong. Take notes. Research what they tell you. Learn as much as you can from them, but don't believe any of them on blind faith. If it helps talk it through with me once you've spoken to them.
Buy a book called Trigger Point Therapy Workbook. I can guarantee that some of your symptoms are down to trigger points. Tight 'knots' in the muscles that can refer pain to joints, restrict movement and cause all sorts of symptoms. The form as a result of a muscle being overyly stressed - so from bad posture, overuse OR as a consequence of an injury or joint problem. All easily remedied with a bit of self massage. It's a fantastic book that shows you how to find your trigger points based upon where you're feeling pain.
Don't have blind faith in anyone over this. The experts aren't nearly as expert as they'd have you believe. Become your own expert. You've got a lot of life ahead of you and it's really down to you to determine how active that life will be!
Good luck!!
lindsay92252 susan67756
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angelikamarlies susan67756
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I am intrigued to read your message simply because it is exactly what has happened to me. I thought I had some knee pain, have been a bit stiff here and there in the mornings and went to see the doctor when I had a lump at the bend of my knee. Doctor said: leaking fluid from the knee cap because of onset of osteo arthritis, will get worse but in the end I could have a new knee joint. Oh well that did not go down well with me. I am not naturally a very sporty person but like swimming and going for walks. I am also a teacher, meaning I stand a lot. So I did a lot of research (as you do after seeing a doctor) and I am still looking..... However I would be greatful for your experiences. Gone are the dayd when I could sit comfortably in the yoga seat but i would love them to return !!!
susan67756 angelikamarlies
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I don't know that there's much more to tell you really - unless you have specific questions?
Your doctor may be right. I don't want to give anyone false hope (although for me I'd always rather than have hope and keep fighting than just giving in and accepting things!!).
The only thing I can tell you with certainty is that it's very possible that your symptoms are all the result of some kind of CURABLE movement impairement or muscle imbalance. Even when the doctors/physios detect 'bone on bone' hard end feel it can STILL be a simple soft tissue/nerual problem. It's also EXTREMELY unlikely that you'll find a doctor or specialist that's able to detect this. These imbalances can be hard to detect/fix and few people have the experience and training needed.
So you could spend a great deal of money trying to find someone to help you; a great deal of time and energy trying to help yourself and it *could* turn out that you're wasting your time because the doctor's diagnosis and prognosis is right.
Another thing I'll say with certanty though. By working on correcting any nerual/soft tissue problems you WILL help your condition and prevent problems elsewhere in your body. If you do at some point need a joint replacement you'll be in much better shape for it. When a joint doesn't work properly/is painful the body will create all sorts of compensations to work around the problem. These ultimately are harmful and are often what causes abnormal joint wear.
If you're on fb follow NeuroKinetic Therapy; Gray Cook; Postural Restoration Institute; Eric Dalton - and look up their websites. These are all people that have good understanding of soft tissue problems that cause joint wear and are often diagnosed as OA. From these sources you might find a professional that can help you, or you might learn enough to help yourself.
Good luck, and if you have any specific questions I'll answer them to the best of my ability.
Susan
angelikamarlies susan67756
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thanks for your reply. I am definately going for the soft tissue issue and will do a lot of research on this. I do feel the doctors did not have enough information to give me this diagnosis and I have had these 'flare ups of pain ' before and they then went away. Do you think it is because I have candida overgrowth ? Because of this I am on a no sugar etc diet (taking supplements like anti-inflammetaries, calcium etc). The candida is dying off now and this can cause all sorts in the body for me. It has gone into my joints and I do know I have a lot of inflammations (elbow, shoulders, big toe, thumb and of course my knee). Sme of them have leaked fluid from those pouches/bags which are around the joints and this is the first time this had happened. So there is a lot of inflammation. This is the only indication the doctor had to give his diagnosis. There is no swelling anywhere and no bones grown funny so far anyway but the doctor said that will happen now.
thanks
Angelika
susan67756 angelikamarlies
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Obviously I focus on the things that are relevant to me (that's all I know about), but certainly I think there are lots of possibilities for your symptoms that really should be ruled out first before giving up hope of full recovery.
One thing I'd give a quick try is a google search for "Trigger Point Knee Pain". Trigger points (painful, restrictive knots in muscles) are highly likely when you have joint pain - they may be a result of your symptoms, or they may even be the cause!! Treating them is just a matter of doing a little bit of self-massage so it's always an obvious choice for the first thing to try. There's plenty of 'how to' info on line.
angelikamarlies susan67756
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your advice about the trigger point has been great and I have found some good sites showing the massages I could do, some even on utube.
I will also start a new site because the inflammation I think I have around the knee has started around the time I started on my anti candida diet. So there is a lot I can find out from others I am sure.
susan67756 angelikamarlies
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Trigger points occur because of unnatural strain on muscles. Even if the true source of your problems genuinely is degenerative changes in joints I can guarantee you'll have trigger points adding to your pain and dysfunction. The very fact that you're in pain, or lack full range of motion WILL cause trigger point to occur.
susan67756 angelikamarlies
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