“Nobody saw or understood what I was feeling”

By Peter Boyd

I was 27 when I was diagnosed with fibromyalgia. An invisible illness of chronic pain, fibromyalgia patientchronic fatigue and stiffness, it was a difficult condition to come to terms with. 18 months of clear blood tests, x-rays and countless doctors’ visits meant that at first I was just happy to have any kind of diagnosis. A week later, however, I had more questions than answers because I couldn’t explain my situation and no one could see my pain.

Three months ago I was diagnosed with arthritis. Initially it was called psoriatic arthritis but we’re leaning more towards rheumatoid arthritis now. All I know it is another auto-immune condition chipping away at me through pain, fatigue, innumerable symptoms and invisible impacts.

For two full years, before every appointment, I waited for my bad news and confirmation that I was getting worse. I felt trapped by my physical symptoms and beaten down by the emotional onslaught. It’s been said that ‘in space no one can hear you scream’. Well, confronted by fibromyalgia and its symptoms for two years before a diagnosis, no matter how hard I screamed no one saw, understood or heard the fatigue and exhaustion I was feeling.

I’m 30 next month and can’t wait to leave my twenties behind. Despite the successes I’ve had in the last decade, my life now is very different from what I had mapped out for myself. I no longer work due to fibromyalgia and arthritis; I struggle each month to maintain payments on my home due to my fibromyalgia and arthritis. From training nearly every single day, I no longer run and even a fast walk is sometimes too much for me. Again this is 100% due to my fibromyalgia and arthritis.

This is where the support of Arthritis Ireland steps in to help me. Just after my fibromyalgia diagnosis I took part in a Living Well with Arthritis course. This self-management course introduced me to others with the same problems AND who were the same age as me. I was no longer so isolated and I had a massive support network too tap in to.

Peter Boyd at the JA Road Trip

Peter Boyd on living with arthritis and fibromyalgia

Without the support of the employees of Arthritis Ireland, the members of Arthritis Ireland, the members of the Young Arthritis Network and the courses, seminars and events they all contribute to, I was headed to a very dark place. That is why fundraising is always required but crucially is also always appreciated. Your money will help others, from tots to Grannies, teenagers to Granddads and what’s more they’ll be so appreciative of the helping hand your fundraising provides.

I know I am.

You can follow Peter’s blog at http://fibrofella.wordpress.com/

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4 thoughts on ““Nobody saw or understood what I was feeling”

  1. O my god what a journey for a young man and stand proud of yourself My name is Caroline.and begin diagnosed with aostarthtris. Now I’m 52 I.have been fighting this for over 2 yrs. o the pain and I was a. Career and loved my job but due to this arthritis I had t give up my job. It’s a very strong pain I did not understand the pain but I do now I’m waiting to be accessed for a hip. Replacement in Nov but it’s all in the bones. Thank y for sharing yr story.thankful we have arthritis group to help us through the pain.thank y for sharing yr story. Caroline

  2. Hi Peter,
    it was a young age to come to terms with a cross like that. i can understsnd your frustrations on the waiting game, even Family and Friends can begin to doubt your pain, suffering and extreme tiredeness, I led a very active life up to about 40 years of age, I loved mountaineering and had the privalage to travel to many parts of the World to climb its peaks. i was struggling from about 35 but cortizone injections and pills kept me going. From 40 on i really started going down hill
    and found it extremly frustrating to explain to people what i was going through. i am now 50 and on 2 injections 1 x Cimzia and 1 Methotrax + anti inflams and pain killers with many years, I have RA and peripheral neuropathy which can be extremly dibilitating .i have been Hospitalised many times and i thank God i have a very kind and understanding employer., My Doctor and rheumatoligist have both advised me to give up work but this is not an option as my youngest daughter is starting collage this year for 4 years .(hopefully i will keep going until then) its tough and frustrting for all of us sufferers
    especially when people dont know what your going through. i completly gave up on socialising
    because of falls etc it takes the confidence away, i am now very happy to stay at home where i read alot go for walks (short or long depending on the way i am, and listen to Music.Best of luck to all sufferers and hopefully we are getting nearer a cure, i really feel for Peter and those younger than him as the all were struck dowm much younger than I.

    Regards
    Eddie

  3. It’s crazy how misunderstood fibromyalgia is, in fact I have a friend who lived for years fighting all these mysterious and debilitating symptoms without knowing what the root problem was. Peter’s story actually reminded me of a piece that I authored not too long ago. It was about a study which suggested that lots of men could be going undiagnosed for fibromyalgia. If you would like to read it, it’s posted here: http://www.clinicaltrialsgps.com/news/could-more-men-have-fibromyalgia/

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