Louth man’s battle with painful fibromyalgia he calls the ‘phantom illness’

Always an active man, involved in rugby most of his adult life, in recent years Drogheda man Seamie Briscoe found he was wracked with inexplicable pain and exhaustion, which doctors initially found difficult to identify.

With fibromyalgia now the most likely diagnosis for his crippling pain and tiredness, Seamie describes how he copes with this silent but severe ailment.

“I have named it ‘The Phantom’ condition, because its symptoms can often identify with other ailments which when tested, can’t be found.

The most common symptom is widespread pain all over the body with muscle aches and flare ups of pain. Sufferers will feel very tired and lethargic, which doesn’t always improve following periods of sleep.

The biggest issue for me and other sufferers is because people can’t see your pain, you don’t feel believed or listened to. To everybody you look fine and receive the compliment; ‘sure you look great’ when you are having one of your worst days.

It is so frustrating when you can’t link the symptoms to any cause and yet the pain can be overwhelming. The problem is that medical opinion does not know what drives the pain and they cannot prescribe medication because the side effects, which I experienced, outweigh the benefits.

The early years of my life were active, having played serious rugby until a neck injury curtailed my career at 1st team level, which led to my retirement in my mid-thirties. I trained regularly and maintained a good level of physical fitness throughout those years.

My work life was normal, and I certainly always enjoyed my social activity. I was a committed activist in sporting, community and trade union involvement which kept me busy. I have had a great family life with my wife Patsy and my two sons, Anthony and David, on all fronts, I was very lucky to live a life of contentment, and whilst at times, there were some instances which did present some moments of anxiety and stress, I dealt with them all capably and without any undue consequences.

I enjoyed normal good health and remained in pretty good shape with little cause for concern until I reached my early forties. 1993 was a traumatic year for me, which was probably the most stressful of my life. It had some life-enduring experiences which took me a long time to overcome.

However, it was during this period I began to experience pains and aches when I also encountered symptoms of fatigue and heart palpitations. There were also changes apparent in my personal demeanour and friends began to notice these changes.

These symptoms became exaggerated during times when I would travel abroad or, in certain circumstances of anxiety or stress. I went through rigorous medical checks and was referred to various consultants to get a diagnosis.

Numerous medical remedies were prescribed but none of them worked to any degree of satisfaction. What I personally decided to do was lose weight and I applied myself to a strictly supervised diet regimen which saw a reduction of three stones.

Before I could assess properly whether my weight loss was a relief or not, I encountered further health issues which required two major surgical operations within a year. Both operations were successful but the anxiety I went through because of the symptoms I was continually enduring increased my worry and anxiety, thinking that they may be related to problems after my operations. Thankfully this was not the case, and the reassurance from one of my surgeons, who carried out intensive scans, greatly quelled my fears and anxiety.

I was now left with the situation of continuing to endure spasms of pain, aches, fatigue and general discomfort. This led to my naming the mystery ailment as the “Phantom” condition. The reason for this being because fibromyalgia it is not apparent in one’s appearance and anyone suffering from the condition, in most situations, looks normal and indeed, will act normal.

When I decided to research my condition, I discovered my beloved sister had been going through the same painful and enduring symptoms but suffering more acutely than me.

Having gone through numerous scans and medical consultations with no diagnostic outcome to my condition I personally researched the symptoms and came up with Fibromyalgia as the likely self-diagnosis. I then contacted fellow sufferers and exchanged views on how they dealt with the condition.

Whilst they were all suffering from various degrees of pain and fatigue, none of them could get any medical assessments of their condition and had their own way of managing the pain in their lives. There was a consensus that very few medical practitioners were experts in this condition and therefore, diagnosis was not forthcoming.

What I did discover was that there were no diagnostic tests for fibromyalgia; the condition is diagnosed based upon the patient’s history and the exclusion of other disorders.

At one stage during a medical visit for severe joint pain, I was asked if I ever had a ferritin test. I didn’t even know what it was.

The GP, in his great efforts to get to the bottom of my pain predicament, had a ferritin blood test carried out which revealed that I suffered from haemochromatosis.

Whilst this came as a big surprise to me at my stage of life, nevertheless, it gave hope that it could have been the kernel of my pains and aches because it is associated with similar symptoms to fibromyalgia. Despite my excellent monitoring and treatment by Dr Sengupta and his wonderful people in the venesection of the Dundalk Hospital, my hopes were dashed (and theirs) when the joint pains and aches didn’t abate and continued to affect me.

There can be no doubt that fibromyalgia is a life curtailing condition for its sufferers. As to its origins and where it stems from, it is neurologically sourced and believed to derive from one of the three main neurological centres in the body. What triggers its activity can be attributed to several opinions. In my situation and on the research of a consultant of my medical history, it was extreme trauma and anxiety at one stage during my life to which it could be certainly related to.

Unfortunately, there isn’t a simple cure for fibromyalgia, or a course of tablets that will sort it out. It may clear intermittently on its own, or it can wax and wane, or indeed it may persist, and then it becomes necessary to learn to live with it as in my situation. That can be done and I, along with my fellow sufferers, find ways of managing it, so we can live and maintain some sort of normal life.

The last thing you feel like doing, when you’re stiff and sore, is exercising, but it is worth the effort in fibromyalgia, as it can be very helpful.

Finally, whilst it is an extremely painful and distressing condition, the fibromyalgia medical experts deem that it’s important to know, it is unlikely to become progressively worse or cause disability. I am hugely grateful for small mercies.”

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