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Osteoarthritis diagnosis: Carenity members share their story

Published 9 Sep 2020 • Updated 11 Sep 2020 • By Courtney Johnson

Being diagnosed with a chronic illness can change a person's entire life. This is the story of Carenity members living with osteoarthritis.

Osteoarthritis diagnosis: Carenity members share their story

Survey conducted by Carenity among 110 patients living in the UK.

diagnostic long 

On average, patients waited 3.3 years and consulted 3 doctors before reaching their diagnosis.

 Yet, a majority of respondents experienced symptoms consistent with osteoarthritis. Here are the symptoms that alerted them to a problem:

Fatigue | Stiffness | Mobility issues | Swelling | Joint pain | Depression 

Before receiving proper diagnosis and treatment, osteoarthritis patients had their daily lives turned upside down by their symptoms. Respondents saw almost every aspect of their daily lives significantly affected by their OA. Chronic pain is the most prevalent symptom that keeps them from living as they did before: 

douleur-physiqueChronic pain - 94%

famille Leisure and physical activity - 86%

vie-travail  Love life - 85%

intime-sexe-relations Social life - 75%

loisirs Family life - 66%

vie-sociale Chronic fatigue - 62%

fatigue-sommeil Professional life - 60%

Before diagnosis, only 43% of patients researched their symptoms online in an attempt to find out what was wrong. A majority of those individuals reported they did their research by typing their symptoms into Google, searching NHS websites and going from there.

60% of respondents decided not to try any alternative treatments for their OA such as homeopathy, massage or traditional Chinese medicine. Those who did seek out alternative therapies reported trying turmeric, acupuncture, massage, reflexology, chiropractic, yoga, CBD oil, Omega 3 and essential oils.

On the other hand, 96% of respondents were not victims of a misdiagnosis. Their symptoms were well recognised as signs of osteoarthritis. However, some were diagnosed with the following conditions:

Complex regional pain syndrome | Depression | Sciatica | Generalised anxiety disorder
|
Walker-Warburg syndrome| Bursitis  

Misdiagnosis: what patients had to say

"I spent many years trying to work between visiting doctors, specialists. As my symptoms had lasted for many years, everyone decided that it was not a physical but mental problem. So after this diagnosis by several specialists my doctor prescribed anti-depressants for at least 3 years. My health deteriorated during this time as I couldn't cope with a pressurised work situation, tiredness and pain!"

"Because I was so young when my symptoms started, the consultant was not willing to consider that my symptoms were caused by anything other than obesity & lack of exercise. It was only when I changed to a new GP & was referred to a new consultant that I was finally taken seriously. It turns out that a lot of women who had the same operations I had as a baby end up with early onset osteoarthritis! If my last consultant had listened properly when I told him about my medical history, the answers were right there!"

suiteBeing diagnosed with a chronic illness is life-altering. Getting a diagnosis of a chronic condition can be a different experience for many patients: they may be relieved to have a diagnosis and be able to begin treatment, but they may also see it as frightening and brutal. Most OA patients were expecting to receive such a diagnosis.                                    

It wasn't a shock, I was expecting it - 51%

ne se souvient pas It was a relief - 29%

pas-un-choc-diag It was brutal - 15%

effrayant I didn’t feel anything in particular - 14%

soulagement It was frightening - 10%

rien ressenti I don't remember - 9%

The healthcare professional plays a key role in sharing the diagnosis with patients. Sometimes patients do not feel sufficiently listened to or informed about their condition; others, on the other hand, are grateful to their doctor for having supported them through this moment. For Carenity members with osteoarthritis, the healthcare professional was an ally. Patients appreciated that their doctor remained calm and empathetic and took the time to explain their illness to them.

le médecin 

53% - The doctor took the time to explain
52% - The doctor was very calm
34% - The doctor was empathetic 

ressenti négatif

14% - The doctor was cold and distant
9% - The doctor didn't seem to care
6% - The doctor used only scientific jargon
4% - The doctor went too fast when explaining 

 

The announcement of the diagnosis: what patients had to say

"The doctor at the hospital was amazed I could walk and said my left hip was just shattered. My doctor said she was so sorry that she didn't think it was OA as I was so young and she apologised for her error."

"My doctor kept calling osteoarthritis 'just wear and tear'. The consultant who did my hip replacement was much better, he told me about the arthritis and how it would affect me in the future."

"The GP shared his thoughts on the likely outcomes of continued pain and walking problems I was going through, talked about what treatments or tablets he would be putting me on. We tried a few different pain relief tablets to find a good match that would work for a good length of time."  

Following their diagnosis, 65% of patients felt relieved to have been diagnosed and 36% were determined to fight the disease. In addition, 30% felt anxious, 45% felt angry and 15% were shocked. Loneliness also weighed on them: 23% felt alone, 18% misunderstood by those around them.

 

merci à tous 

Many thanks to all the participants in this survey! Our Carenity members took the time to share their experience to help other patients get the right diagnosis sooner.

 

"Doctors need to be more sympathetic, explain things and not just offer pills."

"Diagnosis is so important that it should be done by a capable concerned specialist that has time to answer questions. Not by a doctor who only has 5 minutes to tell you results read from a letter from the specialists and can inadvertently misinterpret the words."

"I think GPs should be more open to alternative treatments to help your condition."

"More info should be given on lifestyle - diet and exercise, anti-inflammatory foods, what not to eat or drink, what kind of exercise NOT to do. More empowerment of the patient rather than - 'this is old age, nothing can be done apart from take medication' approach."

"My GP at the time was very good at explaining and listening to me. He talked about what could help me, and remained very supportive throughout my time as his patient. He was never brisk in his manner, he understood that it would have a big impact on my life and restrict my plans for work and any social events."

 

Do the results of this survey reflect your story? Let's share our experience and discuss together to move things forward!

avatar Courtney Johnson

Author: Courtney Johnson, Health Writer

Courtney is a content creator at Carenity and focuses on writing health articles. She is particularly passionate about exploring the topics of nutrition, well-being, and psychology.

Courtney holds a double... >> Learn more

6 comments


lesmal • Ambassador
on 06/10/2020

@Courtney_J‍ 

Thank you for an interesting and informative article! 

I had a good local doctor in South Africa who recognized Osteoarthritis in my knees a few years ago, which gave me a good warning for now later on in life.  Three years later and now in another country, I was able to tell my new doctor I have osteoarthritis in the knees and was sure it was forming in the shoulders, neck, left wrist, together with lower back pain. My family is very arthritic so it would be natural for me to follow in the same way. 

I tried Physio for lower back pain but this made it worse. Only then did I put it down to epilepsy medication, Phenytoin, and Carbamazepine, together with hormonal replacement therapy which I'd been on for years in South Africa. I was sent for a DEXA scan and Osteoporosis was diagnosed.

Last year, I had brain aneurysm surgery and I've noticed a year later that the pain in my neck has increased, together with osteoarthritic pain in both knees and muscle pain in both calves. I've been on 2 lots of new epilepsy medications in the last 14 months, which I have weaned off and started a 3rd. From reading reports online, both medications have caused severe joint and muscle pain so as my trial period on new medicine is too soon to tell, I'll give it a few months before I request more testing on all areas for proper diagnosis, i.e. through x-ray, MRI or scanning. 

Being on Aspirin, I'm not allowed to take Co-Codamol. Paracetamol doesn't ease the pain and Panadol only relieves the headaches. My Neurologist is trying me on a medication by the name of Topiramate which is supposed to ease both epilepsy and migraine, so hopefully if this works for the headaches, then Paracetamol might do the trick for a short amount of time.

My father had a hip replacement, my Grandmother had chronic arthritis in her left hand and could hardly use it in the end, my Mum has Rheumatoid Arthritis and it makes me wonder if the osteoporosis diagnosis of the spine and osteopenia of the hip is just in the genes! 

Happy days! 

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