The ME/CFS Society of NSW Inc.

by Simone Hoffman

I believe I had FM from a young age. As a child I went to a physiotherapist for pain and as a student I struggled with stress and neck pain due to my posture. I grew tall with heavy breasts, so that was the explanation given for my pains. When I started working the pain worsened and I couldn't cope with working five days, so I changed to four. Driving in heavy traffic, standing for a long time, sitting behind the computer gave me aches and pains temporarily relieved by taking regular warm showers.

During this period, although I believed that there was much more going on, I was diagnosed with IBS. This was the start of endless visits to GPs and specialists and blood tests and I ended up no further ahead. I had numerous back and neck scans, saw many physiotherapists, but there was always “nothing” wrong with me. Obviously that confused me and I backed off thinking maybe I really was “just a whiner”. But the pain always returned, so strong it took away my ability to function on a daily basis, so these doctors visits never stopped.

Having my first baby was pretty rough on me. I struggled with back pain, leg pain, pubic pain and shoulder pain, but hey, wasn’t this pregnancy? After my baby was born I couldn't even lie in my bed without being in a fog of pain. Holding my baby was difficult and just standing in front of the change table was uncomfortable. I had aches in my hands and wrists and generally all over.

Breastfeeding was even worse. After eight weeks of shooting pain and my nipples turning from white into purple after feeding, two lactation consultants told me I had Raynaud’s Syndrome and that was the reason why I was in so much pain breastfeeding. I tried everything from plastic nipples to cold and warm packs before and after feeding, but the pain stayed and I had to stop breastfeeding. That was really hard for me because I felt I failed my child.

When my first born was almost one, I was in so much pain that I went to see my GP again and was referred to a rheumatologist. I was convinced I had rheumatoid arthritis. I gave the list of my pains, she did her test and, of course, there was nothing wrong with me. This now makes me really angry. I look at the list and, yes, my blood work looked normal, but there was definitely something wrong with me! More bills for specialists with no results.

A couple of months ago it was that time again; the pain was taking over, my IBS was really playing up and I had to do something. I went to my GP and told her how I felt. Her first response was that I felt like that because I am a mum with two boys and of course you feel achy and run down. At my husband’s insistence, she ordered scans of my neck, back and abdomen. Again I was sure they were going to find something. That kind of pain couldn't be normal. Again nothing showed up.

By now I was having regular sessions with a psychiatrist to find a way to be happier and less stressed and tense. Then a friend suggested I read a book about fibromyalgia. It was a freaky moment for me, lying in my bed, realising this was my story. Nobody wants to have a illness that doesn't have a cure, it all sounded so serious, and I felt really sad.

I feel great since I diagnosed myself with FM. My husband agreed with my diagnosis and some friends understood. In reality, just one understood. I don’t like to talk about it to other friends as I am afraid of being further misunderstood But I feel that they are looking out for me.

I have developed coping skills by educating myself with books and internet articles on FM. I run my own business and know that I must stand up from my desk every ten minutes and move around; I have to work out in the gym; I am extremely cold-sensitive and I have to take more showers then other people (despite the water restrictions, but I hardly water my garden anymore); I have visit the chiropractor; I have to drink my camomile tea before I go to bed and take another shower as part of my bedtime routine, so I sleep better. Before I found this routine, I would wake around three in the morning and not get back to sleep.

Most importantly, I try not to stress about things. This is difficult for me, but regular sessions with a psychotherapist given me a different perspective on how I look at things. My kids are a bit older now, almost three and five and even though they are still so young, it has eased my stress load. I have a nanny helping us for 35 hours a week. She does the laundry, cooks healthy dinners for the kids and helps with the bedtime routine. I am aware that this is not possible for everyone and that I am fortunate having so much help, but this is top priority for us and we economise in other areas.

When the kids were babies, I was always in a lot of pain and not always happy. Now I have established balance with my health, family and work and my life is great - couldn’t be better! I feel that since I discovered that I am a FM sufferer, much has changed in my life for the better. I now take my pain seriously, although not every specialist or physician does the same. I try not to worry about that, as long as I know what to do and how to take good care of myself, I will be fine.

Take good care of yourselves

Simone Hoffman