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Personal Stories

Case 1: 52 year old Female

My name is June. I am in my early fifties, I have two daughters, and am engaged in difficult divorce proceedings after a marriage breakup. I am in constant pain and have to wear morphine patches night and day. I am on a permanent cocktail of medications. My entire life, from early childhood on, has been a litany of constant, terrible pain, illness and depression. I have been in and out of hospitals for a variety of illnesses and surgeries for the entire time.

As a child, I was always feeling sad that I couldn’t be like my friends. I was clumsy on a bike, couldn’t swim or skate, not very bright in school, often made to sit at the back of the class. My reports were always that “June is a nice girl” but “she must try harder”. While I was really struggling with pain and illness, I was seen as “lazy” and “not academic”.

I left school at age 14 and got a job in a sewing factory. I was excellent at sewing and in two years I had become the top machinist. I held down a fulltime job while rearing my two daughters, but after the arthritis became worse I had to go part time, and have now been unable to work for a number of years.

I do find living with pain very tiring, not just physically but also emotionally, and it’s worse because people can’t see it. There is this awful fear of being seen as a whinger, so you tend to play down a really nasty experience. It makes me a less smiley person and I hate it when strangers say to me, “Cheer up...it may never happen.” My usual answer is that it already has.

I am dealing with rheumatoid arthritis, osteoporosis, lactose intolerance, coelic disease, depression and, last but not least, fibromyalgia, which was diagnosed in 2005. I had never heard of this, but it made sense to me. All the symptoms fit in with how I was feeling, and the foggy brain I now have. I don’t know what it’s like to have more than four hours of continuous sleep any more. My body is very sore to touch and bruises very easily. I have more bad days than good days, but I try to keep on top.

On the upside, I am a volunteer for Arthritis Ireland on the Helpline. I go to a heated pool at least five times a week to exercise and I walk my dog most days. I have been an active member of the FM Support Group in Blackrock, Co. Dublin for some time and I have found the positive attitude, the support and understanding of other members of the group has really helped me. I feel I am lucky also to have the constant support of my family and partner, which has helped me to carry on.

 

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Case 2: 36 year old Female

At the age of 33 I was diagnosed with an illness that I had never heard of before. It was difficult to pronouce and spell. It would prove to be even more difficult to live with. Fibromyalgia - an awkward name for an equally awkward illness. Fibro (fibres) - my (muscles) - algia (pain) affects women 9 times more than men and it is estimated that 2-4% of the population have it. It can take an average of 10 years before a patient is correctly diagnosed.

Although Fibromyalgia has closed some doors for me it has also opened quite a few. It made me look at lifestyle changes that I needed to make. I am 3 stone lighter; I have learnt alot about myself and become a more positive person; I’ve taken up many activities that I never would have had time for before. Most importantly I have changed careers and found a better work/life balance. Fibromyalgia does not have to mean the end of the world and if you choose to engage in ‘mindful’ living it could even bring about, the start of a whole new one.

Things you can do

  • Sleep - If you can get into a better sleep pattern it will help ease your aches and pains. If you experience TMJ ensure you wear a mouth guard.

  • Graded exercise - Will help with moods, pain management and sleep. It is very important that the exercises are graded slowly and that you don't overdo it otherwise you will feel worse. Get one-on-one sessions with a trained physio. Hydrotherapy is an excellent and gentle form of exercise. Tai Chi is also very helpful as it is very gentle on the body and has the added bonus of stilling the mind.

  • Medication/pain management -The right medication can help with anxiety and pain. Have a review with your doctor to discuss your options. Be aware of side effects before trying anything and always start off on the lowest dosage. It’s a case of trial and error to see what works for you as everyone reacts differently.

  • Managing stress - Cognitive behavourial therapy is very useful as is biofeedback. It has been documented that a high proprotion of FMS sufferers are A-type personalities with perfectionistic tendencies. Pacing is key to recovery and it is beneficial not to take on too many tasks.

  • Diet - Although there is no specific diet for Fibromyalgia it has been shown that a lot of sufferers have difficulty with carbohydrates and as such benefit from monitoring their carbohydrate intake. Wheat, sugar, alchohol, chocolate, diary, caffiene, tomatoes, potatoes and citric fruits can also be significant allergens for FMS sufferers. 30% of people with FMS are also hypoglycemic. If you fall into this category you need to keep your blood sugars constant. Eat 6 small meals rather than 3 big ones and stay on a HG diet. Keep a food diary and note what works for you and what doesn't.

 

Case 3: Rosie 75 year old Female

I was 56 years old when I was diagnosed with fibromyalgia. I am now 75 years old. There was very little known in Ireland about the condition at that time. It was 19 years before I had the opportunity to meet and talk to anyone about how I felt and how to manage my life. Although there is, as we know, no “cure”, there are choices you can make to improve your everyday life. At the beginning, I had very severe pain – headaches, pain in both ankles, back pain, shoulder pain. The only course open to me was to try to relieve each pain that came along. I don’t have as much pain now, really, only soreness and stiffness. I have found ways of managing, and lead a good, active social life, as long as I don’t try to do too much. Talking to people with FM has been a great help in understanding how to get the best out of life.