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Hip OA - Can you help me by providing some info?

ITLSusanITLSusan Posts: 74
edited 25. Sep 2015, 13:19 in Living with Arthritis archive
I explained in the introductions board that I managed to cure my hip OA that was diagnosed back in 2006. It was all down to complex muscle imbalances. I'm pretty sure others can be helped in the same way but I need to get more evidence and research together in order to get research people to take me seriously. I've worked out a detailed model of what goes wrong. I have 5 people I'm currently working with and it looks like their case is the same as mine.

I want to try and get an idea of how many people have similar symptoms. I wonder if people diagnosed with *HIP* OA would mind doing a couple of simple tests and telling me the results?

Test 1
*****

Lie flat on your back, knees bent, feet flat on the floor. Keeping both shoulders firmly in contact with the floor drop both knees to the floor on your left - allowing your pelvis to rotate and your right hip to come off the floor. Then repeat on the others side. Was one side tighter or more painful than the other? Which side (so knees dropping to right or to left)?

Test 2
*****

In the same starting position, lift right knee to your shoulder (not using hands - just using the strength of your hip flexors). What happens? Does one knee track out? Is one side more restricted? Do you feel pain anywhere? Tell me what you feel on each side.

Question 1
********

Do you have a sense that one leg is longer than the other? Has someone told you that you have a leg length discrepancy? If so, which is the longer leg?

Question 2
********
Which is your symptomatic hip?

Thanks in advance for any help!

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I am sure you mean well but for the majority on here these 'tests' of yours are beyond our physical capabilities. From what you have told us I gather you had a specific area which was creaky (and now sorted) but we have far more to deal with, plus other kinds of arthritic troubles. You remind me of my neighbour who didn't know that one could have arthritis in more than one joint because her experience was just that.

    Apart from being misdiagnosed (as you see it) what else qualifies you for research of this nature?

    As I said in my reply to you on 'Say Hello' I am pleased that things are far better for you and I still hope you don't have to post when in distress. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    :shock:

    I fell at the first hurdle - 'lie down on the floor' :lol:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    I don't think doing the tests that you have described will prove anything really, you get a difference like that if you have back pain or other injury, it doesn't necessarily mean a misdiagnosis of hip OA. Any physio, chiropracter, osteopath will know that.

    That is not to say those with diagnosed OA won't also experience such discrepancies in movement.

    In addition there is criteria for studies which can involve, thousand of pounds involving thousands of people over several years before anything is taken seriously.

    Although it would be marvellous if everyone with hip OA could be cured simply by physio expertise.

    I wonder if you contact arthritis research to investigate if they have already undertaken similar research, this may help in the good cause.

    I usually check things at arthritis research myself, they have archives of information.

    Best wishes
    flower2520paars.gif~c200
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    Jen, you asked:
    "I wonder if you contact arthritis research to investigate if they have already undertaken similar research, this may help in the good cause."

    Arthritis research UK can't help. They are only interested in published, peer reviewed research or people carrying out research at recognised research universities. It's a crazy situation - there is no mechanism in place for recording cured cases. Or for looking at HOW they were cured. Who knows how many people have been cured? In addition, when someone that's not a health pro manages to cure themselves AND come up with a model that is likely to apply to others there is no way to get that investigated or reviewed. Bureaucracy at it's finest!! The Arthritis Care help line suggested I contact NICE - which i've done. But I don't hold out much hope.

    I am however in touch with the doctor that's responsible for GP training in the UK in relation to OA. He works at one of the Arthritis Research UK's research centers. He's actually written some of the documents that you find on the Arthritis Research UK site. He's promised to champion my cause and find someone to help me make sure this is properly investigated. He's passed the info on to two professors in physiotherapy research that specialize in OA - so waiting to hear back from them. In the meantime I'm documenting everything as best I can so that I can present everything to them in a structured way - that's the best way to get their help.

    I'm also making publicly available my story, a detailed account of what was really wrong with me and precise details of how it was resolved. This is at the request of people i've gotten to know on forums like this. Some people are desperate for the kind of info I'm sharing. I know I was!!

    Getting a rough idea of how many people fit the pattern would be helpful, but not imperative. I have had one person from this forum share their info and they were delighted that I was sharing my story - they said it lifted them out of a huge depression. That's actually what prompted me to post this question here. If people want to respond they will. If they don't they won't. No big deal either way :)
  • OliverTOliverT Posts: 26
    edited 30. Nov -1, 00:00
    :)

    I'd not go as far as to say that the depression was entirely abated from reading Sarah's website, but without any doubt it's given me a huge lift - that is true. Not only a lift, but strengthened my resolve to improve my lot and my outlook. For that I give thanks and respect for the work she is doing, it is both valid and worthwhile.

    I think from the information we have about what constitutes a diagnosis of Arthritis it's clear that those posting here will be from a very very broad church with incredibly varying conditions, presentations and experiences, and so some of the advice and responses from the site's correspondents will be utterly inappropriate for some members and utterly on the money for others.

    For me, the idea of using a wheelchair or a scooter is lightyears away from my idea of reality - if I needed to commune with nature that much I'd rather just go and roll around on the forest floor. :)
    For others a scooter will be a godsend.

    So for anyone from a hard-core sport background dealing with OA of the hip Susan's ideas are well worth paying attention to - if you're like me you'll already have worked out that activity and exercise are key elements of pain reduction and a return to mobility.
    For those who cant lie on the floor you can either stay as yourselves or opt for transformation. For some it might not be a choice, but it's just as possible that it is.

    Your body's own endorphins are every bit as effective at pain relief as any other opioid - so if you have any option to produce some then grasp that option with both hands and don't let go!

    Here's another inspirational guy who clearly has something to say about the transformative nature of the application of a little exercise...
    https://www.youtube.com/watch?v=qX9FSZJu448
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Don't you think we already know that exercise is beneficial? That relying on meds is not ideal and that a positive mental attitude helps?

    We do know this but some are far more compromised by this disease in all its guises than others. It is not necessarily a matter of personal choice as to how disabled we are, it's more a case of disability being thrust upon us whether we like it or not. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • OliverTOliverT Posts: 26
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Don't you think we already know that exercise is beneficial? That relying on meds is not ideal and that a positive mental attitude helps?

    We do know this but some are far more compromised by this disease in all its guises than others. It is not necessarily a matter of personal choice as to how disabled we are, it's more a case of disability being thrust upon us whether we like it or not. DD

    Don't get me wrong - I work in the field of disability so I know that someone with a stroke cant help having whatever symptoms persist or whatever.

    Maybe there are those reading that are less compromised - and if they need a push to get themselves motivated then a push is the right thing to give. It would be wrong to deny those people the opportunity wouldn't it?
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    Good Luck with it all ITSusan.

    Hope you find in most all cases OA can be cured this way. It will be disappointing for those whose OA can't be.


    I am sure the news will hit the headlines when adequate numbers can be cured of OA .

    Best wishes Jen
    flower2520paars.gif~c200
  • barbara12barbara12 Posts: 20,902 ✭✭
    edited 30. Nov -1, 00:00
    :shock:

    I fell at the first hurdle - 'lie down on the floor' :lol:
    Same here SW....if I could get down would never get up... :o
    Love
    Barbara
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    Jen wrote:
    Good Luck with it all ITSusan.

    Hope you find in most all cases OA can be cured this way. It will be disappointing for those whose OA can't be.


    I am sure the news will hit the headlines when adequate numbers can be cured of OA .

    Best wishes Jen

    Thanks Jen :)

    Regardless of how many cases *could* be cured this way I suspect not many will. I talked this over with one of the physiotherapists that I'd worked with for a long time. He knew my case very well and when I shared the news that I'd unraveled the puzzle and fixed the muscle imbalance (I'd had a little rant about the misdiagnosis and the fact that physios aren't trained to detect these problems) he had this to say:

    "I do agree with you about the training to a part but all I'd add is try to understand you are the minority of the type of patients diagnosed with that so putting more effort into training in one small specific part of the physiotherapy degree is probably deemed not worth it...that's my best guess at why anyway (remember musculoskeletal Physio only makes up about 1/5th of Physio training of a 4 year course, 3 years in England or 2 year masters). Harsh to say but most people are lazy and inactive and unwilling to put in enough effort to even begin to start addressing muscle imbalances of that severity. Doesn't make the diagnosis any less wrong but even if it was right to the majority it would make no difference. "

    A GP echoed the same thing - she said that often they knew that an OA diagnoses was incorrect, but for most people the outcome would be the same no matter what was diagnosed (drugs and perhaps ultimately surgery). Most people don't want to work at addressing things like this through physical therapy.

    Which is why I think it needs to be a self-help approach. Providing the resources and support needed for that 1% that do want to give it a go.

    The thing is, if they give the 1% the guidance to help themselves they'll learn a LOT about the condition through them. That may well help them to find approaches that can be rolled out to everyone. Currently the 1% are just thrown on the trash heap on the grounds that, as a minority group it's not cost effective to divert resources to them. I think that's the harsh reality.
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    A.) Can't get on the floor
    B.) Can't rotate my Hip's
    c.) Can't bend my knee's !!!
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    I suspect that applies to most illness ~susanITA, there is always a small percentage that are the exception to the rule.


    ohhhhh Babbadog wish some one, somewhere could make a magic lotion that would oil your joints for better mobility. x x
    flower2520paars.gif~c200
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    Agreed Jen! There's no way of knowing how small - or big - the group of exceptions is. It hasn't been studied. Cured cases aren't monitored, investigated or even recorded. What is certain is that each and every one of us COULD prove to be the exception that CAN be cured. Yet we're all conditioned to BELIEVE that there's no hope. Learned Helplessness.

    http://www.impossible-takes-longer.com/blog/2015/09/25/osteoarthritis-and-the-role-of-learned-helplessness/
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    ITLSusan wrote:
    Agreed Jen! There's no way of knowing how small - or big - the group of exceptions is. It hasn't been studied. Cured cases aren't monitored, investigated or even recorded. What is certain is that each and every one of us COULD prove to be the exception that CAN be cured. Yet we're all conditioned to BELIEVE that there's no hope. Learned Helplessness.

    http://www.impossible-takes-longer.com/blog/2015/09/25/osteoarthritis-and-the-role-of-learned-helplessness/


    I disagree, we are not all conditioned to believe that there is no hope.

    That statement is just your perception of what you believe to be the case.
    flower2520paars.gif~c200
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Well said, Jen.

    That was quite insulting, ITLSusan both to us and to our health professionals.

    I think you would come over as less dogmatic and more sympathetic if you prefaced some of your statements with 'I believe' or 'I think' or 'It seems to me that..' rather than presenting what are simply your opinions as incontrovertible facts.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    I think it safe to say that we are ALL sharing opinions. I'll take your advise though to avoid further upset. I'll pop a disclaimer in my signature.
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    LOL Susan its gets even more descriptive or less?. define physical therapy?

    I thought I had it figured on the other post but now not so sure with this new description.

    I think I had better give up or shut up trying to fathom what it is precisely you are communicating.

    Sorry folk I will shut up now.
    flower2520paars.gif~c200
  • ITLSusanITLSusan Posts: 74
    edited 30. Nov -1, 00:00
    According to dictionary.com:

    "Physical Therapy: the treatment or management of physical disability, malfunction, or pain by exercise, massage, hydrotherapy, etc., without the use of medicines, surgery, or radiation. "

    A very quick and dirty overview of what is in actual fact a hugely complex subject:

    When you do something repeatedly your body adapts to make you better at doing that thing. So, if you spend 40 years of your life sitting at a desk then there's a chance you'll develop a desk job posture. Rounded shoulders, excessive lumber lordosis, tight chest muscles, neck jutting forwards, internally rotated femurs etc. It's well known that this can lead to pain - including wear and tear to joints. It's common to have degenerative changes in the neck for example - because so many people have this posture where the neck juts forward. For most people it just means occasional aches and pains (normally caused by trigger points - the muscles are strained so trigger points form). They don't get given a diagnosis of neck OA.

    Sometimes the imbalance gets so bad and the strain on muscle so great that pain becomes really bad. Sometimes joints seize up as the body tries to stabilise and protect itself. Assuming something serious is wrong we go to the doctor. The doctor takes an xray, finds degenerative changes and tells you that you have OA and sends you home with pain relief drugs. The dysfunction gets worse; the joint wear gets worse; problems occur in other joints due to the strain. Before you know it you have pain in every joint.

    What if you didn't go to the doctor? What if you worked at figuring out the muscle imbalance? People rarely do this because a) they're in too much pain and b) they wouldn't know where to start. But it stands to reason that it's going to be the cause of joint pain in many people.

    The fly in the ointment with this lovely theory is that fixing muscle imbalances is hard. You won't get much help from doctors or physios (not until they start researching it at least). But it IS something you can experiment with yourself if you're so inclined. It can only do good and in some cases complete resolution of symptoms will be possible.
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