Info on Hip OA Requested from any health pros reading

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I have concerns about the information that's provided to people diagnosed with hip OA. Information from doctors, health organisations - and sites like this - is presented as 'evidence based' and the assumption is that it is very reliable. Yet I would argue that this is NOT the case.

It's extremely difficult for people to get straight answers from health pros as they always refuse point blank to provide details of evidence - falling back on patronising and dumbing things down into baby talk.

I realise I'm being a bit antagonistic here (and massively generalising about health pros), but we're grown ups so how about having a grown up discussion? If you're reading and you're one of the 'good' health pros, then please share your honest views as you will help a lot of people immensely with honest, open discussion.

My first concern is that health pros are NOT up front about the fact that there is no diagnositic test for OA - that it is a diagnosis of exclusion, yet very common and treatable forms of joint pain AREN'T ruled out - for example muscle imbalance/RSI's. Why not? The risk is EXTREMELY high - especially in over 45's - that we'll be labeled with an incurable disease that we don't actually have and will spend the rest of our lives with pain and disability UNNECESSARILY.  So much for "Primum non nocere" - when you tell people they have an incurable disease you do IMMENSE harm. 

When it comes to treatment of hip OA the guidance given to patients is based on extremely scant information. There is next to no research into hip OA so any info given about it's management and prescriptions for exercise are for the most part plucked out of thin air. Patients follow this advice because they trust it to be reliable; if they knew how little research and knowledge was behind the recommendations they'd probably come up with better management schemes on their own.

I'd like to ask the pros what steps they take to reassure themselves that a patient really does have an incurable joint disease, and how they decide upon treatment recommendations. Do you admit that there is no research to guide you reliably? That there are no 'experts' in the NHS that are adequately trained to identify the curable cause of joint pain (which I would argue all too often will be complex muscle imbalance - certainly it was the case with me, and was at least a huge component for many other patients posting on these boards.). 

People deserve to be given more honest information so that they can make informed choices.

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  • Posted

    To back up my criticisms of the handling of OA cases by health pros...

    This is taken directly from the NICE guidelines on OA. If you are over 45 years old, then if you have joint pain and you aren't stiff for more than 30 mins in the mornings then you will be given an OA diagnosis. You could make the diagnosis yourself - the only benefit to going to a doc is so that things like gout or inflammatory arthritis can be ruled out:

    *********************************************************************

    "1.1 Diagnosis

    1.1.1Diagnose osteoarthritis clinically without investigations if a person:

    is 45 or over and

    has activity-related joint pain and

    has either no morning joint-related stiffness or morning stiffness that lasts no longer than 30 minutes. [new 2014]

    1.1.2 Be aware that atypical features, such as a history of trauma, prolonged morning joint-related stiffness, rapid worsening of symptoms or the presence of a hot swollen joint, may indicate alternative or additional diagnoses. Important differential diagnoses include gout, other inflammatory arthritides (for example, rheumatoid arthritis), septic arthritis and malignancy (bone pain). [new 2014]"

    **********************************************************************

    There is no mention of ruling out Repetitive Stress Injures and Muscle Imbalances which are KNOWN to cause joint pain. Now this is perhaps understandable because there is no one in the health service that's trained to identify and treat these things. It's extremely unlikely that a doctor or surgeon will have the skills, and nowadays the physio is also unlikely to be adequately trained. HOWEVER, THE PATIENT HAS A RIGHT TO KNOW THIS SO THAT THEY CAN DECIDE IF THEY WANT TO PURSUE THESE POSSIBILITIES PRIVATELY.

    We have this ludicrous situation where poor quality studies looked at ridiculously over-simplified diagnostic and treatment approaches (carried out by physios) and found them NOT to be reliable/effecctive. So, rather than trying BETTER approaches to diagnosis and treatment of pathological muscle imbalances, or accepting the limitations of the research methodology, the powers that be decide to conclude that there is no such thing as joint pain caused by muscle imbalances....even though plenty of research actually shows that it is a major factor in a great deal of chronic pain. Net result of this is that physios are no longer adequately trained in treating these things. 

    As time goes by, the evidence points more strongly AWAY from the joint being the root cause of problems. We're left in a situation where surgeons are seen as experts in OA when in actual fact it is not looking like it's a surgical problem. The 'experts' are pretty much clueless about the real cause in the cases like mine where it's ALL down to muscle imbalance. It SHOULD be physiotherapists at the helm, but flawed methodologies are leaving a trail of breadcrumbs that seem to be taking us away from the solution and over a cliff edge!  The physios that SHOULD be able to solve this are losing the relevant skills.

    Is it just me that sees that sees this as irresponsible to the point of being criminal?  To tell someone that they have an incurable disease with NO EVIDENCE to support that claim? When a treatable cause is equally or perhaps more likely? 

    THERE IS NEXT TO NO RESEARCH INTO TREATMENT OF HIP OA

    Even NICE draw attention to this fact and point out that as hip and knee OA are very different beasts you can't apply results of research into knee OA to hip OA. So what do they do? Well, they used to make things up, but nowadays they're tightening up more and they simply don't tell you what exercise to do for hip OA - just that you should 'exercise'. Most people with hip pain / hip OA know better than the health pros how well that's likely to go over the long term!!!  

    Many people try exercise - perhaps they're given a little exercise sheet (with exercises plucked out of thin air) by a doc or physio. It doesn't work and that re-enforces the belief that they have an incurable disease. It becomes a self-fulfilling prophecy.

    Yet for those that have figured it out for themselves - highly TARGETED exercise based upon a detailed understanding of the underlying muscle imbalance can lead to massive improvements and even complete resolution of symptoms. 

    Things like trigger point treatment that most people that try it know can bring tremendous pain relief and improved function don't even get a mention. Some quotes from people on this very forum that tried it:

    "It is good to feel empowered, to be able to relieve the symptoms oneself. I cannot thank you enough, Susan. To be able to walk normally makes me feel euphoric!"

    "Woke up at 4 am. Pain in thigh. Maybe I was too keen doing exercises yesterday. But no longer do I reach for the Anadin. I am no longer in a state of learned helplessness. I start taking control. I feel for my known trigger points, run through the glutes, the TFL, the IT band, then hit the spot on QL. Eureka. I know I have found it. Massage both sides, relief, followed by deep,restful sleep until 7.30, when I wake up pain free and exulting in the control I now have over my so-called “Osteoarthritis”."

    ""I am amazed and frankly stunned that no-one of the so called 'health experts' I have visited has ever mentioned it [trigger point self treatment] to me and I had to discover it through the dedicated efforts of someone like you online"

    Harmless, DIY treatment that doesn't cost a penny yet no one sees fit to suggest it to patients. Why? There is even a pilot study that shows trigger point treatment eliminated symptoms in pretty much all subjects in the study - these were people on a waiting list for knee replacement surgery! 

    Would it be so bad just to be honest and say "Sorry folks - we have no idea why you have joint pain and there is no research to guide us. Treatable muscle imbalance and RSI is a possibility but you'd need to look into that for yourself". I wish to god I'd been told that over a decade ago. I successfully treated my muscle imbalances, but the biggest hurdle was battling with health pros that were full of confidence yet 100% wrong. Guys - you have no idea how damaging your unfounded negativity is. I get that some people just want a prescription and a sympathetic ear. But there are people out here that will move heaven and earth to get their lives back and they (we) deserve honesty. 

    The explanation I got from a GP and a physio was (paraphrasing):

    "Most people are too lazy and inactive to help themselves. In most cases it doesn't matter what you diagnose as the outcome will be the same - drugs and possibly surgery".

    I don't think that's good enough. Apathy isn't an excuse to lie to patients. 

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  • Posted

    Hello Susan,

    You talk about so many pertinent topics WRT OA, and these are the same things I've been saying for a long time. If you think that drs are remiss in knowledge for hip OA, try getting any sound science for diagnostics and safe treatment for shoulder joint OA. 

    I have a failed scope on my right shoulder from 3 years ago, and I had got high hopes up for cartilage implants recently as there are a few surgeons in the US that claim to perform them. It has turned out to be all smoke and mirrors. Good luck in getting a health "pro" to respond here. 

    You are correct about the harmful psychology of being told that OA is incurable. I like to call it the "non notable" disease because it gets very little attention in R&D when compared to other diseases.  

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  • Posted

    Oh Susan I echo your sentiments! It appears to me that we are running around almost like doctor shoppers seeking quality advice and management without further damage to our health: yet thousands of dollars later over a few months (for me) same position! I feel like a doctor shopper and each have OPINIONS and do not dare consult with each other let alone the patient - then they take us down another course of meaningless causes and solutions to something they cannot describe what it is. My latest Dr says he will cure my eroded wrists and neck by diet. Yeh meantime more erosion. I wish there was a active group attempting at minimum to get  all these therapies for relief on the medical benefits  scheme . At least that would be a start and then begin with honesty - they don't know and any erosion is thought to be osteoarthritis- when it may be in the final stage but the beginning is another question. I would be writing all day at the variations from each doctor ! You go girl! We need some fight for our physical wellness. Kes 

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  • Posted

    I wanted to say just a bit about diagnostics since that should be the baseline for all decisions and treatments. It seems that most ortho drs I have seen in the US are deficient in this area because they do not know how to read images and rely on the rad report. One of the surgeons who I have seen and was referred to as "elite top dr" ordered an x-ray shortly after I had checked in to his office. Before i had set a foot outside the imaging room I was already being offered a cortisone injection by the technician. I got the same line when the PA came into the waiting room for the eval. The first thing he asked was would I like an injection? I asked for what reason or diagnosis would i be treated with an injection because as of yet I had not even been seen by the dr. Then the almighty dr came in with an entourage of trainees and proceeded to offer me an injection also, before even doing any evaluations. Then the sales pitch for an artificial shoulder was made, as that is how this dr treats the majority of his patients. 

    I abruptly explained that I would in no way be accepting this kind of radical surgical treatment, especially with such scanty diagnostics as an x-ray. The room fell silent and you could have heard a pin drop. I asked how he would understand the extent of my joint damage without any other diagnostic tools and he succumbed to ordering an MRI. At this point, he realized I would not be the "cash cow" he was hoping for, so he didn't have any more time for me and didn't bother to show up for the appt when i picked up the MRI results. 

    This is how diagnostics is done in the US - follow the injections and the $.

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    • Posted

      Firstly, well done Susan and everyone who is speaking up on behalf of what must be a very large very unhappy group of people.  I am in the UK, here it's all about what our health service will offer due to cost.  It's a bit of a false economy however to keep labelling people with OA and first port of call, prescribe pain meds or anti-inflammatories.  The cost of these meds prescribed in their millions must be off the scale.  I dont have hip issues.  What I do have is a severely affected ankle following a major accident.  WIthin a very short time of having the initial repair surgery I was told that any further problems I was having with the joint were osteo arthritis and the only options  (there were only two options given!) were to keep taking the anti inflamms or have surgery to have the ankle fused.  Hobsons choice.  Signed off from the fracture clinic and effectively told only come back when you're willing to have us fuse your ankle so you never walk properly again.  Since then I've developed joint pain in thumbs, shoulders and knees.  Fruitless visits to the GP only resulted in having yet more prescriptions for anti inflamms waved at me.  I too got offered a cortisone injection for the thumbs - it was horrendously painful and the benefits lasted precisely one week. Next time I was offered one I respectfully declined.  At this point I could almost see some irritated doctor putting a large red cross through my notes ...........So now I cope with extensive joint pain, trying not to take too many anti inflamms because they make me sick and knowing I have less chance than a snowball in hell of ever getting anyone to investigate the problem properly.  

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    • Posted

      Loxie,

      I'm so sorry you are in such pain and not getting help - just like me. There are so many folks that are offered just "band aids" of cortisone shots, but they do further damage. When I was in Germany in 2009 for artificial disc replacement (ADR) of the L4/L5 which was completely successful, I was told then that cortisone was never used for any kind of treatment in the ortho hospitals, but that may have changed in 2018. 

      I'd like to give you some word of encouragement about the ankle fusion. My sister and nephew have had them - my sister's being 15-20 years ago. She does walk on the ankle but is more in pain due to a bad knee rather than the ankle.  As far as I know, my nephew has had to cut back on some of the athletics he formerly did, but he can walk normally. My sister is 60, and my nephew is 30.

      Keep us posted on how you are doing. Just curious if you've seen a rheumatologist? Some of ddyour symptoms seem to sound like RA, and could be treated with nutrition, physio therapy, and RA meds.

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    • Posted

      Thank you Holly.  I did get referred to a rheumy.  It wasnt a happy experience.  She said I had no inflammatory markers so there was nothing she could help with except to refer back to my GP for prescription pain meds.  I asked her if there was any alternative to taking opiates - firstly because I dont tolerate them well (I get severe nausea) and secondly because they are all so addictive.  She got quite nasty and told me she was a 'pill pusher' and thats all she could do.  Not a great result having waited four months for the appointment.  I've given up on the doctors now, waiting weeks and months for a 5 minute appointment with nothing much being done as a result, it got depressing.  I rub ginger on the painful thumb joints and try meditation for the rest and basically just cope as well as possible if I'm having a bad day.  GP did get my vitamin levels tested - all within acceptable range, so I dont bother with vit supplements either now.

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    • Posted

      The government put muscular/skeletal/arthrtis treatment out to tender with private centres competing with the NHS for a five year contract from 2015. It depends on the area you are in as to who is the health provider. You would know as appointment letters would say MSK.

      Which area do you live in ?

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    • Posted

      Hi Loxie. I can't be much help except to say get your levels to max levels esp vit d, c , b12 along with zinc and iron and be sure you are absorbing well. I also have thumbs and wrists inflammed and painful. I soak every day in ginger garlic and cucumin (I actually break open tablets along with fresh) it really does ease the pain ! My markers are ok tho cpr is at 7 - don't know if that's high or not! But doing everything to get inflamation down. I have been looking at food for blood type and avoiding any foods that could increase inflamation. I also take chloroquine (prescribed by a rheumatologist in India) ..it has or appears to be doing something nodules on my elbow and finger has reduced. MY dr here in Aus agreed to see it through for six months. i too am jade but what else can we do except to increase immunity and overall health coupled with some therapies. The medical research are not investing into causes and preventive measures for joint damage. 

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    • Posted

      After getting blood tests, I quizzed my doctor about my vit levels, specifically zinc and magnesium, as always the answers are very vague - I'm sure they think theyre talking to a five year old!  I got a copy of my test results by accessing the health centre website and did some research online.  They were all totally acceptable levels.  I questioned the practice nurse who has wider nutrition experience and she said not to take supplements are some vitamin levels are dangerous to exceed.  I was worried about B12 as I'm mostly vegetarian but apparently my B12 levels were very good.  Our local health food shop is run by a guy who's very knowledgeable about alternative therapies and is a homeopath, so I asked him about turmeric and other stuff. He said not to bother with tumeric per se as the active ingredient which is curcumin is only at about 5% concentration in turmeric, so on his advice I got some concentrated curcumin and took a few months of it.  Not much effect so I didnt bother continuing.  I do use ginger - I mince up the fresh root and mix it with body lotion or hand cream and slap it on the thumb joints - it's very very helpful in reducing swelling and inflammation, and also pain.  The blood tests requested by the rheumy showed no inflammatory markers - bit like saying we cant fix your computer/car/etc because there are no error codes!  My immune system is not right - surely some test or other must be able to show this but all I ever get told is 'tests showed no markers' grrrr.  The practice nurse told me to try excluding nightshade foods (tomatoes, peppers, aubergines etc) from my diet as they sometimes cause heightened inflammation.  This was hard being vegetarian as they are a staple in my diet but I gave it a shot.  Tried a period of three months avoiding or substantially cutting down.  Not a jot of difference.  Friends of mine who live in southern spain also had a diagnosis of OA and moved to the mediterranean specifically for warmer climate - they eat these foods almost three times a day as it's the local diet.  Their pain levels have dropped to almost nothing so obviously not increased by eating these foods.  My doctor refuses to acknowledge my pain would be made worse by cold and damp weather - his words 'utter nonsence'.....hmmm.  I'm certainly in agreement that a lot of this is muscle related, as a recent ultrasound showed I had ruptured bicep tendons - definitely not as a result of extreme exertion/sports activity etc., just 'wear and tear' which indicates my muscles are abnormally weakened in some way.  To be honest I've totally given up on the medics and will continue to read up, either research info on line or these forums - which are more helpful than my doctors have ever been.

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    • Posted

      Oh you guys are amazing! I have had this for just 5 months and am consumed by it...my gp is a naturopath too..I am so pleased to have found him after seeing many doctors every week including in India where at least they introduced some ideas to me. Yes tumeric is not the answer, however 100 percent active curcumin is what is necessary, so I am told. . I guess I am willing to explore everything right now. Thinking about Susan’s experience my acupuncturist says it’s my tendons that are causing the inflamation. I was doing yoga dailyt times a week until this occurred. When I first began yoga my instructor suggested my left and right side was not aligned. This is true and again Susan’s story rings in my ears as it might just be this that caused the initial, flare,, two months in bed with every joint inflamed.  I wonder now if I caused damage to my tendons when doing so much yoga. Gawd, I don’t know, I am just trying to follow one course to see it through. 

      I to am a vegetarian, well one could say now a vegan as limiting dairy. . And yes feel like I am not eating just rattling around with stain fingers from soaking, lol I have to laugh. I am in Australia on north coast which is similar to Mediterranean climate. My active b12 was  good but in total it was on the lower side, 161. So GP just wants to see these up to higher end of range as further protection, . I don’t full understand all these tests but each day become more informed. 

      I sometimes wonder though, as stress plays a big part in wellness, that all these tests just cause great anxiety. All I want is to bring the CPR levels down so I don’t have inflamation in my body. I am focussed on copper levels now as mine are quite high...probably from drinking in copper jugs in India..grrrrr. 

      I am am going to meditate now and imagine all my joints, muscles and tendons happy and healthy, 

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    • Posted

      No Derek my symptoms began after a flight from Aus back to India. I was bedridden for two months with every joint including jaw neck feet ankles knees and any other moving joint. I had luckily been able to see a rheumatologist who had lived in uk. I was about to fly home and he gave me predisinole (never again) and Hydroxychloroquine . He also did not want to label what I had until reviewed. This got me home where I th run started the doctor shopping. So the one constant is the Hydroxychloroquine that now seems to be doing something. The rest is supplements , self massaging and weekly visits to my acupuncturist. The big find is my gp/naturopathic identified I had too much copper which had depleted my iron and is also known to cause inflammatory arthritis. So I will see this course through in an attempt to get the darned inflamation down. 
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    • Posted

      Oh Derek. I had typhoid fever and salmonella back in 2015 gee would I have received something like you describe. It's funny as I have told doctors over and over that I was unwell since this infection. I was in Mexico at the time and taken to hospital I was on something for about two months . Hmmm 

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    • Posted

      In another post in another forum it was prescribed for someone with Typhoid. I'll see if I can find it again although we have two posters who pick up on any Fluoroquinolone mentions. It is though allowed for a serious illness like Typhoid. It is UTI's etc. where it is overkill

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    • Posted

      Oh Derek thank you so much I am gobsmacked. All that time during 2016 I was just not on the ball and then 2017 this. It goes straight to the BONE of pyoblrm. Lol thank you for making mention. X
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