Info on Hip OA Requested from any health pros reading

Bones, joints and muscles
1

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.

2

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:

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"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]"

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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. 

3

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.  

4

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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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 $.

6

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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Ladies, I think with all of these joint pain problems a very promising area of investigation (that the health services ignores completely) is soft tissue problems. So muscle imbalance. 

Essentially, when muscles acting on a joint get out of balance (one too strong) the bones in that joint will be pulled towards the stronger muscle leading to abnormal wear, impingement and pain and even overuse injury in the muscles themselves. 

My own case of hip OA - which morphed into severe pain in feet, shoulders, neck and back too - turned out to be entirely down to a complex, whole body muscle imbalance. The methods that worked for me have had great reports from many others. 

In the first instance, if you want to explore this possibility, I'd recommend looking into 'self MFR' and 'trigger point treatment'. Harmless, absolutely free and info readily available online. I'll give further info if needed. 

This isn't a cure, but if you're able to relieve some of your symptoms using this approach it's a big red flag that your problem may well be down to treatable muscle imbalance. 

8

Hey ladies and gentlemen. I have to add more. Today saw another gp here in Australia who practices from a holistic approach ! Guess what he said I do not have OA or RA and fir the first time since having an all over body inflamation and reoccurring flares he has identified high levels of copper which in turn has my iron and zinc struggling to maintain appropriate kevels. High levels of copper cause inflamation of joints. Furthermore I am undermethylation which I turn means histamine (whole blood) is low.  I am feeling optimistic that by correcting this I can then look at cartilage rebuild ! I am seeing acupuncturist who confers with gp and between them I feel in good hands. What a turnaround. Still major out of pocket expense as none is cover by public or private medical insurance. I guess my message is keep searching. I gave now gone to compounding chemist armed with this information and await his response. Good luck everyone. 

9

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.

10

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.

11

Were you referred to NHS or MSK?

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Thank you for sharing honest information. I feel the same way. I am hoping I can fix the issue woth proper strength training and yoga. I want to stop the pain and suffering and I am not willing to accept the diagnosis until I have given alternatives a chance. I have been given hope so thank you for that.

13

For some reason, a reason not backed by research, the pros seem to be trained to dash all trace of hope. They go out of their way to browbeat you into accepting their bleak prognosis. 

Research clearly shows that self efficacy is a huge factor in keeping pain levels low, sticking to treatment plans and general overall outcome. If you BELIEVE you can help yourself you'll do so much better than if you believe that a disease is rampaging through your body and that you need medical intervention. 

I honestly think the problem is that traditionally OA was considered to be a disease of the joints. Now it's known that doesn't fit, but rather than go back to the drawing board (which they can't, because the system is set up with surgeons at the helm) they try and fit research findings into their original, flawed model. 

Honestly, muscle imbalance is a hugely positive avenue to explore, but it's also a highly complex one. Regardless of the cause of your symptoms you WILL have muscle imbalances contributing to symptoms so it pays to keep working on discovering and addressing muscle imbalances for the rest of your life. Make it part of your routine. There is every chance that one day you'll discover that you've got nothing left wrong with you! (As happened to me).

My advice is start with self MFR / Trigger point treatment - plenty of freely available info online. This is a quick and easy approach that with most people will do a lot to help manage symptoms. You need to find and fire up those lazy muscles though to get lasting improvements!!

Be careful with yoga. The problem with yoga is you do exercises that cross multiple joints. If there is a tight muscle and a lazy, inactive muscle in the 'chain' that's being stretched you would want the tight muscle to lengthen - in practice that won't happen; it'll stay locked down tight and the lazy muscle that is already over-stretched will stretch more, making the muscle imbalance worse. You need to take a more targeted approach and identify which muscles are weak/lazy and which are tight.  Some starting info on my website here: www.impossible-takes-longer.com - all the info you need to beat this is freely available online, but you need to get to grips with what's wrong so that you know what you're searching for!  Feel free to PM me if you have questions.

Not saying it's certain muscle imbalance is the root cause of your problem, but I would bet everything I own that it's at least a player, and the only way to rule it out as root cause is to treat it and see if you're left with any symptoms. 

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Hi Derek.  Not sure what MSK is.  I was referred by my GP under the NHS system.

15

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 ?

16

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. 

17

Susan,

How did you say your hip OA was diagnosed?  I thought you had said your diagnosis was done with X-rays, MRI or CT?  In my case, I have had several X-rays and an MRI, that show extreme thinning to no cartilage in the glenoid humeral joint. Of course, I had pain after the initial injury occurred, but the images indeed do show cartilage is gone. Also, there is deformity of the humeral head with multiple bone spurs attached. It would  be a natural consequence to have resulting muscle weakness, and instability if pain from cartilage loss and bone spurs causes less movement or favoring to the other shoulder, but that wouldn't seem be the primary cause for pain.

I would be a dream come true if, for example, the muscles were restabilized & I was able to come back to a normal range of motion. However, would restabilizing have an affect to mitigate even pain from pain spurs and bone friction from cartilage loss?  

18

Hi Kerrie,

How did the new gp determine your mineral levels? Did he take a hair sample or run blood tests? I do believe that mineral deficiencies can play a big role in healing and health maintenance, and I'm curious to know if you've looked into how Fe interacts with other minerals? You may want to look it up, but from my research on the effects of minerals I learned Fe and Ca block the uptake of Cu, Zn, and Mg. Here in the US we have an over abundance of Fe in water and food, which comes from the soil. If there is too much Fe, I'm not sure how you would absorb the those other minerals. Did the doctor mention anything about this? 

Holly

19

Mine (initially just hip OA) was diagnosed with a combination of x-ray and physical exam. The non symptomatic hip had the worst degeneration - that never developed any symptoms. That diagnosis was over 10 years ago and research is now showing that for the most part it's pointless to use x-ray to diagnose or even assess how it's progressing as there is simply no correlation between x-ray findings and symptoms. 

My xrays showed degeneration in both hips, severe degeneration in neck and moderate in spine. Shoulders were never x-rayed. At one point I had severe neck pain (a couple of times requiring emergency medical treatment) and no mobility whatsoever - couldn't turn to look behind when driving. Neck is now fine - I can balance on my head! I'm sure the severe degenerative changes are still there; it's likely that they're worse as I stumbled along for another decade with the imbalance that no doubt caused the joint wear! 

In the UK, it's now recommended that x-rays / MRI's aren't used in people aged over 45. People do still seem to be given definite OA diagnosis (strictly speaking, they shouldn't be), but more recent guidelines are recommending that it's more of a 'provisional' diagnosis subject to change. The reality is that there is no test for OA - it is just a catch all term to describe 'unexplained joint pain'.  Also, NICE point out that OA isn't a single disease, but a collection of diseases each with different prognosis and characteristics. 

If you doubt what i'm saying I'm very happy to post more info and links to research etc. I realise that that's not the information that's typically handed out to patients, but it's what the current guidelines say. 

Why do you assume that your pain is caused by friction from cartilage loss and bone spurs? Research indicates that it's simply not possible to tell from x-ray. As I've mentioned, research shows no correlation between symptoms and degenerative changes on film; some people have badly degenerated joints and NO symptoms; others have joints that look fine on film but bad symptoms. Recommendation nowadays is that there's no point in using x-rays to establish severity of the condition. The only reason they're recommended now is to rule out other conditions. 

It would be impossible for anyone to guarantee that, if you got muscle balance corrected, that you'd be symptom free. HOWEVER, the converse is also true - it's possible that ALL symptoms are down to muscle imbalance. Muscle imbalance WILL cause abnormal joint wear; It's also likely that a diseased joint WILL cause muscle imbalance.

Regardless of the root cause of the pain, treating muscle imbalances will surely help. Chances are that it's causing at least some of your symptoms. Why assume the incurable rather than the curable when the ideal treatment is identical - treat the muscle imbalance for the best possible outcome! 

I had severe pain in both shoulders a few years back - left shoulder in particular. I had hardly any range of motion and even the slightest movement was painful. Because I already had a hip OA diagnosis OA was assumed to be the cause of shoulder pain too. A physio told me "Move things around at home so you don't have to reach overhead. It's not as if you want to be swinging from the chandeliers at your age!".  Well, he was wrong. A few years on I can do handstands, walking on my hands, pullups - including extreme variations - maximum pullups in a single day is 670 (on video if you want proof!).

Muscle imbalance causes pain identical to that described by people awaiting joint surgery. 

In this study - "Detection of acromioclavicular joint pathology in asymptomatic shoulders with magnetic resonance imaging." Goolgle for it as if I add a link it will be held back for moderation - 42 symptom free patients were given MRI's (50 shoulders in total). Almost all the over 30's had evidence of arthritis but no symptoms. 

"Forty-one (82%) of 50 shoulders had abnormalities consistent with arthritis on MRI. Patients were divided into two groups according to age: those older than 30 years and those 30 years old or younger. In the 30-and-under age group, 68% of the shoulders had arthritic changes, whereas in the over-30 age group, 93% had arthritic changes."

 

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" In the UK, it's now recommended that x-rays / MRI's aren't used in people aged over 45"

Why?