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New Diagnostic Criteria for Osteoarthritis - are you still sure you have OA?

Posted , 5 users are following.

susan67756
susan67756

Many people were diagnosed with OA years ago and still believe the information they were given at that time.

Some doctors and physiotherpists fail to keep up to date on new research and methods so some people are still being diagnosed according to outdated criteria.

Consequently there's a lot of false information spreading like wildfire that people accept as fact.

One thing that I personally found HUGELY damaging and unhelpful was to be given a definite diagnosis of OA and told that I absolutely could not be cured.

Fortunately (thank god!) I refused to accept this. I cut the doctors out of the loop and researched for myself. As a result I am now cured. 100% symptom free. So many people are being given the same false information as I was (pretty much everyone it seems). I want to raise awareness of this so that those that want to do what I did see that there really IS hope. No guarantees, but hope.

It's been known for many years that there is no correlation between X-Ray / MRI findings and symptoms. Most older people have degenerative changes in joints that will show up on X-Ray / MRI - most have no symptoms. Some people have terrible symptoms yet little or no evidence showing up on X-Ray / MRI.

A few years back it was decided that X-Rays and MRI's really weren't helpful in making an osteoarthritis diagnosis. They simply did not tell the doctors anything useful. A diagnosis is therefore made clinically. This is what they say on the NHS website (There are articles on the Arthritis Research UK website saying the same thing - the diagnostic criteria is coming from official sources):

"There is no definitive test to diagnose osteoarthritis, so your GP will ask about your symptoms and examine your joints to help determine whether you have the condition.

Your GP may suspect osteoarthritis if:

    you are 45 years of age or older

    you have joint pain that gets worse the more you use your joints

    you have no stiffness in your joints in the morning, or stiffness that lasts no longer than 30 minutes

"

Two statements there to focus on: *There is NO definitive test to diagnose osteoarthritis* and . *Your GP may SUSPECT osteoarthritis if you meet the clinical criteria*

There is no such thing as a definite osteoarthritis diagnosis. Essentially it is a catch all term used to describe chronic joint pain for which no cause can be found. Yet that is NOT what people are led to believe.

Why this unswerving belief that if you've been told you have OA you cannot be cured? The doctors might not know how to correctly diagnose and cure you but that doesn't mean that it can't be done.

Anyone that wants to try and achive a cure - drop me a pm and I'll share all that I learned in order to cure myself. Or check out the info on my self help website. You'll find it in my profile. Just because the health service hasn't figured out how to cure people suffering with 'OA' doesn't mean that they can't get together and figure it out for themselves.

If any health professional disputes what I'm saying speak up.

1 like, 12 replies

12 Replies

  • loxie
    loxie susan67756

    Posted

    Thank you for the very helpful info and advice.  My OA was diagnosed following a major accident which destroyed my ankle joint.  Whilst OA was 'suspected' following x-rays etc., the formal diagnosis was given after further surgery on the joint to remove some pinning/plates and undertake an arthroscopy.  At that point I was told there was no living cartilage remaining and thus arthritis had set in.  Unfortunately what you say is very true, OA is given as a diagnosis under a sort of umbrella heading to cover any joint wear and tear circumstances and as you say once OA is diagnosed, patients are very much told to go away and suffer in silence.  I personally know I don't have cartilage in the joint and that will obviously cause excessive wear and tear, release of prostaglandins and bone spur growth - having said that - telling me I have OA is like telling people with life threatening viral symptoms (eg RSV) they have "flu" and to go away and take an aspirin.
    • susan67756
      susan67756 loxie

      Posted

      Thanks supercargo smile

      Loxie - I'm only basing this on my own experiences. Obviously I know nothing about the mechanisms behind your problems.

      BUT I'm pretty sure there are documented cases of people with trashed joints, no cartilage and no symptoms. Theoretically then it's possible for you to get to where they are?

      Anyone that's had any cause to limp or move in abnormal ways WILL develop compensatory muscle imbalances. It's entirely possible that the muscle imbalances are causing the symptoms and not the joint. If that were so then a resolution might be possible.

      I'm not trying to raise false hope here. I just feel so strongly that they should be putting more effort into researching muscle imbalance as a cause of joint wear, pain, stiffness. But until they do it's something that is feasible for us all to do for ourselves. The difficulty and skill lies in figuring out the correct things to do but provided you don't go crazy you can't do any harm with a bit of trial and error.

    • loxie
      loxie susan67756

      Posted

      you'll note Susan that I was agreeing with you - hence my comment "Unfortunately what you say is very true, OA is given as a diagnosis under a sort of umbrella heading to cover any joint wear and tear circumstances and as you say once OA is diagnosed, patients are very much told to go away and suffer in silence"
  • wknight
    wknight susan67756

    Posted

    I have been cured by joint replacement but only because I went privately. The first one was very painful but the second one I had no pain at all and only went to the consultant because it was stiff. He said I had left it too long!! so my joint replacement options were restricted.

    I would highly recommend joint replacements as for me I am now pain free and that is priceless

    • susan67756
      susan67756 wknight

      Posted

      If given the option of treating muscle imbalances through corrective exercise and curing your condition completely or surgery which would you choose?

      You see, for some people (like me) corrective exercise can result in a complete cure. This is the issue - people are incorrectly being told that this isn't possible.

      It's assumed that all cases of OA are the same. They aren't. The scary thing is that some people are told that surgery is their only option when everything is pointing towards a muscle imbalance. If you go to a surgeon (and often it's surgeons who are considered the go to experts for oa) then surgery is all he knows. He's unlikely to recommend anything but surgery if your symptoms are severe.

      It's just something for people to be aware of so they can ask all the right questions, expore all avenues and make informed decisions. The fact that surgery resolved your symptoms suggests that it was the right course of action for you. Had muscle imbalance been causing your symptoms you'd expect them to remain after surgery.

      My dad had both hips replaced by the time he was 50. My dad had congenital defects that led to his OA. I doubt that cure through physical therapy was possible for him. But I bet he could have kept his own hips for longer with good therapy. That's not yet available on the NHS though.

    • loxie
      loxie susan67756

      Posted

      good points raised.  I was given only one option - surgery to fuse the joint, leaving me with no dorsa flex - thus with a permanent impairment and disability.  When I refused I was treated like a moron, literally.  I was refused physio therapy on the basis it wouldnt help but realistically I know it was a cost measure and not actually anything to do with my specific needs.  I researched for myself what movements/exercises would be of use and I do them, so far I'm still walking and keep the pain at bay, without invasive and destructive surgery.
  • EileenH
    EileenH susan67756

    Posted

    I was told categorically that I had OA in feet and hands and knees "I can feel it" said the rheumy. A few years later and a lot of muscle stiffness and stuff I was diagnosed as having polymyalgia rheumatica (after I suggested it) and was managed with the standard treatment of prednisolone which produced a miracle in 6 hours. After a few months the foot and hand pain, having faded very slowly, disappeared altogether and the knees were improving. After 5 years I have no foot and hand issues and the knees are as fine as they will be after skiing damage.

    Three years ago I was almost immobile - and finally the pain clinic at the local hospital saw immediately that it was back muscles that were as hard as floorboards. They worked on that (treating the cause not just the pain). Some time before I'd been told by an orthopod that the back pain was wear and tear and I'd have to live with it. It wasn't - it was also due to the spasmed muscles. 

    I still have PMR, I still need a low dose of pred for that. But my back muscles are now normal not hard and as long as I am careful I have next to no pain. The relief acutely came from cortisoneand muscle relaxants used in a technique called needling in the US. I've never come across it in the UK but it is used by GPs in German-speaking Europe at least.

    I also use Bowen therapy - 2 or 3 sessions at a time every 6 months or so. You know after an initial up to 3 sessions if it will help you - if it doesn't there is no need to keep throwing money at it but if it does work it may not be a permanent solution of the underlying cause is something that isn't or cannot be changed such as and old injury leading to incorrect walking or posture, different length legs or so on. Pilates was also a great help in the early days before pred - it kept me far more mobile than would have been possible otherwise.

    But I do agree with Susan - clinical diagnosis isn't as good as it should be and when it comes to OA (and other things) there are things you can try - it could well be muscular in origin rather than "merely" lack of cartilage in the joint. In the UK at least there is a great deal of sniffing at alternative therapies - but Bowen is being trialled by a north of England Trust to study whether it can achieve pain relief where the pain clinic has had no success. I can only say I know at least a couple of dozen people whose pain has been reduced considerably using it. Fifty percent of the pain is easier to live with than 100%.

    I was reading the NICE guidelines for OA a few hours ago in fact and notice they are to be revised in September 2016. I don't imagine they will change a lot given NICE's attitudes "Take paracetamol and lose weight". What a misnomer ;-)

    • susan67756
      susan67756 EileenH

      Posted

      Eileen, in 2012 a physio told me that she felt bone on bone restriction in my hip. She could tell by feel that I had no cartilage. She said at best I'd get a year out of my hip.

      In Dec 2013 (still with two hips of my own) a physio told me I had bone on bone restriction when I flexed my knee to around 80 degrees. That was proof positive that I had oa and that I could NEVER improve range of motion.

      Now I'm completely cured.

      Completely agree re not throwing money at things. When first diagnosed in 2006 I was determined to find a cure. I went to a chiro that told me he could cure me completely and that it'd take 12 sessions costing £300 payable up front. With that carrot dangling how could I refuse. I KNEW his treatment wasn't working yet I wanted that cure so much that I paid out £1000 for nothing. These therepists know how to part desperate people form their cash!

      I agree that you can probably tell by 3 sessions if something is going to work. But even then you need to be careful as you can end up being strung along for ever doing something that elivates symptoms when, if you moved on from that, you might find the actual cure.

      It's a minefield. NHS is no good for these problems. Private practice - well even the most ethical have bills to pay and kids to feed.

      My conclusion is that self help is the way to go. You're probably going to have this for a while if not for ever. It pays to make the effort to become your own expert. That's what ultimately led to my cure.

    • EileenH
      EileenH susan67756

      Posted

      That is typical of my experiences of chiropractors! "You will need a session every few weeks for the rest of your life..." One of my friends fell for it and must have spent thousands on it! 

      I found that I got a far more realistic approach if the person called themselves an osteopath and were registered as such. Chiropractors always seemed have spent far more money on a fancy room and always wanted to sell supplements - to supplement their income!

      My Bowen therapists have all said from the outset, if it hasn't helped in 3 sessions, it won't - it might help for another problem but not for this one. Almost everyone I have heard from who has tried Bowen - and there are a lot on my forum for PMR (which is an autoimmune vasculitis) - said they could feel a difference within hours sometimes. Sometimes in something they hadn't been aware of initially - but overall. in a very high percentage there was a decided improvement in pain levels.

      And yes - knowledge is power, whether doctors like us becoming expert patients or not!

    • susan67756
      susan67756 EileenH

      Posted

      Bowen isn't something I looked into - I'll rectify that!

      In my case - which was a twisted pelvis caused by muscle imbalance that was diagnosed as incurable oa - the chiropractor identified the problem I believe. He didn't explain it in detail - I wasn't clued up back then. But from things he said and the way in which he attempted to correct it I think he probably did diagnose it correctly.

      My experience is that osteopaths and chiros are very good at diagnosing this but their approach to cure doesn't work well. I've heard this from others too.

      It's tricky - you need to get input from experts in the early days. You have no knowledge of your own when first diagnosed. Yet the fact that you have no knowledge leaves you wide open to being fleeced! Even an honest person can do serious harm if they give you a wrong diagnosis / prognosis as you'll no doubt view them as an expert and it won't occur to you that they might be wrong.

      I'm a HUGE proponent of self help for OA. It's the only viable approach. Educate yourself and recruit expert help as needed under YOUR control. With YOU calling the shots.

    • EileenH
      EileenH susan67756

      Posted

      Another lady on a forum I'm in put it this way: when she contacted her osteopath he said No, not me. I do bones, Bowen does muscles. If you have a muscle imbalance then Bowen will very likely at least help. Whether it will be a cure is another matter - it depends WHY the muscle imbalance exists. But it worked for me originally with something very similar. Other problems turned up later which require on-going sessions every 6 months or so - but to me it's like going for a nice massage and equally uplifting.
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