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Rebecca Barnard

2016-12-01 09:52

Dorothy's Story

Months ago I decided to start keeping a diary of my rheumatoid arthritis treatment and the challenges I have faced since the beginning of my treatment. I guess I was hoping that my diary will help in pioneering treatment for other people like me who have had non- specific test results but are still experiencing rheumatoid arthritis symptoms. Rheumatoid arthritis is a debilitating condition, in particular to those like me who do not follow the usual disease pattern and test negative for rheumatoid factor.

My symptoms started in January 2010 and were of sudden onset. I had flu like symptoms but, unlike previous years, l had painfully achy joints and extreme tiredness too and was bed ridden for days. I felt like I had been run over by a bus but left with no injuries, only pain. I had these symptoms for months and felt too unwell to work. At the time I was employed as a full time health visitor, had a young family and needed to work. I had also been active and rarely went off sick prior to these symptoms.

Nevertheless, things continued to get worse, I was off sick so frequently that my employer threatened to sack me due to a lack of a tangible diagnosis. After humiliating meetings with human resources that basically accused me of faking illness to get time off, I decided to take matters in my own hands and resigned from my post, which was readily accepted by my then employer. Thereafter I experienced significant emotional lows that impacted further on my wellbeing. I spent days in bed suffering from achy joints and feeling very unwell, and at the same time feeling like a fraud because of a lack of a diagnosis or treatment.

I continued to seek pain management from my GP who ran several tests and stumbled upon a borderline test result, signifying the presence of possible rheumatoid markers and I was referred to the rheumatology team.
My journey took a downward spiral following this referral. Basically, the follow up tests by rheumatologists showed negative RNA and my only presentation was generalised stiffness, joint swelling and severe aching pain that led to severe exhaustion. I was seen three times by the rheumatologist and was dismissed and discharged with a diagnosis of fibromyalgia and non-specific swelling as a result of gravity. I was told to lose weight, and was prescribed amitriptyline and naproxen which barely gave me pain relief. To give you a picture of my body weight, I am 5 11" and my weight fluctuates between 15 to 16 stone.

I don't know how I survived after they dismissed my symptoms: all I remember is how l dreaded waking up. By this time I had moved onto working on zero hours contracts as a way to counter the employment sickness propaganda.
Day in day out, I dragged myself to work and suffered from so much pain. My days were long and painful. Most days I cried myself to sleep knowing l could not be treated because every time I sought treatment I was told that it was fibromyalgia and that I was on the best pain management for it. I remember one GP undertook a mental health questionnaire with me because of what they referred to as my 'non-specific symptoms'. Looking back I have no doubt that pain did impact on my wellbeing, and I did cry during most consultations with doctors because I saw no hope for treatment and not because I was depressed.
I visited my GP more times in a month than I had in all my life, and l remember thinking maybe I had developed a fabricated illness. I also remember thinking maybe I had developed depression and started to agree that my pain was not real and that I had to get on with it. At one time I remember having a conversation with my husband and had to contemplate that maybe I should seek mental health treatment to help combat my pain, as it was possibly all in my mind.
This all made me feel disabled and at the same time able-bodied in the eyes of the world. I also felt very isolated and many a night I would cry myself to sleep. Yes, my journey to diagnosis although surrounded by a loving and caring family, and trained doctors was long, lonely and extremely difficult. It is true when they say what doesn't kill you makes you stronger - I am stronger for it and determined to change the system for others like me. To my detriment, throughout this period I developed a very high pain threshold that further impacted on how others perceived my illness, how I relayed my symptoms to doctors, how I accepted treatment for my pain and how I was provided with treatment. In other words I have developed what I call 'automatic pilot' or ability to numb myself from feeling pain.

Five years down the line I moved to the Midlands as part of a plan to re-locate to a warmer climate. I am in a new, permanent job with a more empathetic employer and have found a new GP who has been more understanding, accepted my pain for what it is, and gave me confidence to seek more help.
My new GP ran more tests which showed continued raised markers. By this time I was experiencing debilitating hip pain. As a result he also referred me for X-rays that showed advanced arthritis both hips. He referred me to a rheumatology team and orthopaedic surgeons.
My new rheumatologist did further tests and diagnosed me with non-seronegative inflammatory arthritis and immediately commenced me on disease modifying rheumatoid medication. Despite this my markers have remained high, and I am experiencing regular flares. I have been put on a combined treatment of sulfasalazine and methotrexate injections. I must say, things are still not right and the rheumatology team are considering anti-TNF treatment.
At the same time, orthopaedic surgeons have tried me on anti-inflammatory hip injections that did not help. I have since undergone my first hip replacement and I am in the process of recovering from this. I am now 45 years old and in the early stages of treatment with disease-modifying anti-rheumatic drugs (DMARDs) and suffering from debilitating advanced hip arthritis because I have an unusual disease progress.
It makes me sad that the system I have assured others works for years has let me down. Despite NICE recommendations that provide a clear pathway for treatment and management of seronegative arthritis cases like mine, my condition was left for far too long and as a result treatment with DMARDS may not give me much benefit.

I am of the opinion that my husband was the cornerstone to me starting treatment for my arthritis, because he pursued and pushed for treatment and continued to encourage me to see my doctor. On my own I would have given up and died a slow and painful death. Funny how life turns out, our plan was for us to retire early while we were active and able-bodied, instead I am having to consider early retirement as a result of an untreated medical condition. How ironic is it that I dedicated my life to caring for other sick people only to end up forgotten in my illness.
I hope others get inspiration from my story and that I get inspiration to continue to write down the things that help on paper.