Symptom Free – Was I Misdiagnosed with Osteoarthritis or was I Cured?

The biggest stumbling block getting in the way of me treating and ultimately curing my hip OA was the attitude of health professionals and the public perception of what OA actually is. I believe the attitude instills learned helplessness in us which not only reduces our chances of finding a good outcome but actually makes our symptoms worse. Nocebo effect (the opposite of placebo effect) has been researched and it is clearly shown that when told pain and dysfunction is likely we will experience exactly that. It’s known that pain is largely generated by the mind so in my opinion it’s highly irresponsible to tell people to expect it.

We get very little information from our GP’s. To be fair, the likely reason that they don’t tell us much is because very little is actually known. Most of the information provided in the guidelines is educated guesses. In the case of hip OA there is very little research to guide us. The bulk of what we know comes from information leaflets and online sources such as arthritis charities. That information is based upon the official ‘educated guesses’ but over-simplified to the point of being inaccurate and for many people positively damaging. The other source of information is fellow OA sufferers. The huge problem with the latter is that it’s generally those with horror stories to tell that spend their time online talking about their disease. Most of those that have had a good outcome are out enjoying life and have forgotten about that little episode of pain and a worrying diagnosis that they had a few years back. Those that do want to share a positive story are assumed to be lying, deluded…..everyone KNOWS that OA can’t be cured so they must be wrong….right?

WAS I MISDIAGNOSED OR CURED?

This simple question is proving to be controversial. For many people it’s important to get a reliable answer as a good outcome for one person can provide a great deal of hope to others. My case was said to be classic and certainly when I compare symptoms and stories with other hip OA sufferers we seem to have (or had in my case) an identical condition with the same problems and symptoms.

The health professionals and researchers I’ve spoken to fudge around the issue by responding to my statement of “I’m either cured or was misdiagnosed” with “I’m glad to hear that you’re managing your symptoms”. When I reiterate that I’m not managing symptoms – that I no longer have any symptoms and that my joints are being well tested with extreme sporting activities they avoid the subject altogether or make a vague comment about “temporary remission”.

In order to clear up the confusion let’s look at how OA is currently defined.

THE OFFICIAL DEFINITION OF OA

The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care in the United Kingdom. This is their definition of OA:

“OA refers to a clinical syndrome of joint pain accompanied by varying degrees of functional limitation and reduced quality of life.”

They then go on to state:

“OA is characterised pathologically by localised loss of cartilage, remodelling of adjacent bone and associated inflammation. A variety of traumas may trigger the need for a joint to repair itself. OA includes a slow but efficient repair process that often compensates for the initial trauma, resulting in a structurally altered but symptom-free joint. In some people, because of either overwhelming trauma or compromised repair, the process cannot compensate, resulting in eventual presentation with symptomatic OA; this might be thought of as ‘joint failure’. This in part explains the extreme variability in clinical presentation and outcome that can be observed between people, and also at different joints in the same person.“

Piecing together these two statements we can conclude that OA is currently viewed as joint pain that is accompanied by varying degrees of functional limitation. The root cause of symptoms is the actual joint –specifically, inadequate repair of damage to the joint. As damage to the joint is for the most part irreversible, OA is considered to be incurable.

This seems reasonable enough.

The NICE guidelines distinguish between symptomatic OA and radiographic OA.

WHAT IS RADIOGRAPHIC OA?

Radiographic OA is a term used to describe changes to joints visible on X-Rays or MRI scans. Most cases of radiographic hip OA are non-symptomatic and benign. 11% of the population are estimated to have radiographic hip OA yet only 5% are symptomatic. 6% of the population have non-symptomatic radiographic OA in hip joints.

If we look again at what the NICE guideline has to say we can reasonably conclude that radiographic changes to hip joints are a normal part of the joint repair process.

“OA includes a slow but efficient repair process that often compensates for the initial trauma, resulting in a structurally altered but symptom-free joint.”

On its own, radiographic OA is normal and benign. By middle age most people will have it in at least one joint in the body.

WHAT IS SYMPTOMATIC OA

Symptomatic OA is generally defined by the presence of pain, aching, or stiffness in a joint with radiographic OA.

DANGERS OF ASSUMING LINK BETWEEN SYMPTOMS AND RADIOGRAPHIC OA

The assumed link between symptoms and radiographic OA can lead to a misdiagnosis of OA.

NOT ALL JOINT PAIN IS CAUSED BY OA

There are numerous causes of joint pain – most of them are treatable and curable. Some specialists speculate that very early stage OA is not evident on x-ray or MRI scans. Whilst this may or may not be true, there is no test for OA so you simply cannot conclude that pain is caused by OA without ruling out all other possibilities. In practice OA tends to be a catch-all diagnosis for joint pain that has no obvious cause and is therefore frequently misdiagnosed. Interestingly, the specialist that diagnosed me with OA agreed with this point, saying:

“I agree OA is a blanket term and patients are often written off prematurely because this label can easily be applied.”

It’s important to keep looking for the CAUSE of your symptoms if you are to have any hope of cure.

Correlation does not imply causation.

Even when pain and dysfunction is accompanied by radiographic OA there is no guarantee that the two are related.

  • A large percentage of the population have radiographic changes but no associated symptoms;
  • A large percentage of the population have symptoms but no associated radiographic changes.

It stands to reason that there will be a subset of the population that have both radiographic changes and symptoms – yet those symptoms aren’t caused by the radiographic changes.

This could be due to two unrelated conditions, or both radiographic changes and symptoms being the result of another condition.

It’s important to keep looking for the CAUSE of your symptoms if you are to have any hope of cure.

Radiographic OA and Pain – Symptoms of Another Condition

If pain, dysfunction and radiographic OA are present this is typically considered grounds for a definite OA diagnosis. This is a dangerous assumption that won’t always hold true. Once the diagnosis of an incurable condition is given all hopes of finding the real cause are abandoned.

My symptoms were eventually proven to be caused by a muscle imbalance. It’s known that as well as causing pain and other symptoms a muscle imbalance can cause joint wear and remodelling (i.e. radiographic OA). It is an extremely common and curable condition that can cause all of the symptoms associated with OA. Yet it is not listed in the NICE guidelines as a condition to be ruled out before diagnosing incurable OA.

This is particularly worrying as left untreated it’s quite possible that a muscle imbalance will ultimately lead to true OA and ‘joint death’ could occur. An OA diagnosis could well become a self-fulfilling prophecy. In addition, a muscle imbalance will often ripple through the entire body damaging numerous joints.

It’s important to keep looking for the CAUSE of your symptoms if you are to have any hope of cure.

WAS I MISDIAGNOSED OR CURED?

I would reason that I was misdiagnosed AND cured: I was misdiagnosed with hip OA and eventually cured of the real cause of my symptoms which was a muscle imbalance. It’s likely (but not certain) that the muscle imbalance was the cause of the degenerative changes (radiographic OA) that showed up on my x-rays. Certainly joint wear is one of the known consequences of a pathological muscle imbalance.

The asymptomatic radiographic OA that no doubt still remains may or may not resolve itself now that the cause of wear has been removed. Research does show that improvement in x-ray findings does occur in some cases. As it is a benign condition it doesn’t really matter either way. There is no evidence to suggest that a joint with radiographic OA is weaker or more susceptible to damage.

Those that don’t accept I could have been misdiagnosed or cured are left with one option – that I am in remission.

The argument against the remission theory: The muscle imbalance is NOT in remission. It has been corrected through diligent physical therapy which I will present to you in the self help guide that I am writing. I understand the mechanism of the imbalance and I know how to ensure that it doesn’t develop again in the future. I have less chance of developing a symptomatic muscle imbalance in the future than the average person because of the knowledge I’ve gained. There is no reason to expect that the symptoms that I suffered for nearly a decade should recur. Enough is known about the mechanism of muscle imbalances to be confident about this.

In the absence of muscle imbalance and symptoms what is left? Benign radiographic OA – a condition that almost all middle aged people share. What exactly do they think is in remission?

Author: Susan Westlake

Visit my website to find out more about how I cured my hip osteoarthritis. Find out if you can achieve the same through corrective exercises. If you want to be informed of updates please sign up for my mailing list.

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