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Living With Fibromyalgia- guest blog by Lydia Phillips

gym Jan 27, 2019

For those of you not familiar with Fibromyalgia (FMS), it is a long term condition that can cause pain all over the body.

As well as widespread pain, people with FMS may also have

  • Increased sensitivity to pain
  • Extreme tiredness
  • Muscle stiffness
  • Difficulty Sleeping
  • Headaches
  • IBS

The exact cause of FMS is unknown, it has been linked to changes in the way the CNS (Central Nervous System) processes pain messages to the body and it could also be hereditary. The condition itself can lie dormant, to then be triggered by physical or emotional stress.

As a personal trainer, I have become more aware of FMS in recent years, but more so when, online client and friend, Lydia, was diagnosed with FMS in early 2018.

Lydia has been kind enough to put in her own words, her story of being diagnosed and living with FMS as a young and active individual. I hope that it helps either those who might be in the early stages of diagnosis to relate or if like me, you want to understand how individuals with FMS live on a day to day basis.

Hi, my name is Lydia, I’m 27 and I was diagnosed with Fibromyalgia (FMS) in February 2018. Since then I have spent much of my time and money trying to lead a normal life as possible. Some things I have tried haven’t helped at all and some things have really made a big difference to my quality of life. I hope that in sharing my story, I can help others of you who may be struggling since diagnoses.

This has been, and continues to be, a constant learning curve where I am learning about myself both physically and mentally.  

Prior to my diagnoses I was working in hospital operating theatres. This meant working long hours, including night shifts which had a very negative effect on my sleep and eating pattern and subsequently hormone balance.

I was also (and still am) a keen gym goer and loved pushing myself in the gym. I even competed in a bikini fitness competition. Unfortunately, I had no idea at the time how much stress I was putting my body under both physically and mentally, trying to balance both a grueling work and gym schedule.

Prior to my diagnoses, weight training was my savior. As a teenager I had been a very successful National swimmer and had my sights set high at swimming in the Olympics. My dreams were quickly shattered when I dislocated my shoulder and didn’t receive the right type of rehab. Devastated, I tried to carry on with my life and eventually found myself in the gym.

I loved the training and being in an environment with like-minded people. It soon became my second home and I’ve formed some lifelong friendships. I even met my now husband in the gym!

Unfortunately, I made a very common mistake of pushing myself too hard, what with the hours required with my full time job and exercising hard 6-7 days a week. I was often over dieting (being in a calorific deficit for long periods of time) and rarely took complete rest days. I had a very low self-esteem, in fact I felt so low about myself that I used to punish myself at the gym in a bid to make myself feel better. I didn’t see the cycle I was in at the time, but looking back now it’s very obvious.

Little did I know I was actually making everything worse. Looking back now I wish I had known how to deal with my work stress better and where I could get the help I needed for my lack of self-esteem and low self-worth.

I hadn’t been well for some time. I was experiencing brain fog, severe fatigue, headaches and constantlyunable to regulate my body temperature. Some days I was unable to walk for more than 45 minutes without being in extreme pain in my hips and legs.

After going to the doctors I was undergoing a lot of tests. Initially, the doctors kept putting it down to post viral fatigue. After months of testing with no improvement, I was under a private consultant where I was finally diagnosed with Fibromyalgia in February 2018. At first I was relieved that somebody finally had the answer to all my pain, however it shortly unfolded that there was a huge lack of knowledge about how to manage and treat the syndrome and very little in the way of support.

Shortly after diagnosis I was prescribed medication (Amitriptyline and Sertraline) and pretty much left just left to ‘get on with it ‘. I was extremely lucky to have my husband’s support and such amazing family friends who have been by my side on this journey with me. Without these incredible people in my life I would be in a very different place and I will never be able to thank them enough.

I still have to live with the symptoms and accept that I will never be ‘cured’. The medication helps manage the pain, but I still have good days and bad days. Some days I can’t even get out of bed. The hardest thing since diagnosis would be for me trying to accept my illness. I still struggle with being kind to myself and put way too much pressure to still be able to do the things I used to do before getting ill.

I’ve found counselling has helped me immensely. Through counselling I’ve learnt I should focus on looking after myself from the inside and outside and allow myself permission to not conform to anything if it wasn’t in my best interest.

So far I have learnt that in order for myself to be relatively pain free, every aspect of my life has to not cause me stress. As most of you reading this will know, life isn’t that simple and sometimes things cause us stress that seem out of our control. I am very much a ‘people pleaser’ and I do let certain things that shouldn’t affect me cause me unnecessary stress. I’m trying to learn to disregard situations and toxic relationships that cause a negative impact on my life and stress balance. It’s not an easy thing to do, but I hope in time this will become second nature to me.

I don’t think there is an easy answer for living with FMS. I think it’s more about working out what works best for me and implementing it to be able to cope and have a quality of life living with this syndrome.

Yes, my whole life has changed, I no longer can work within the hospital and I have to take each day as it comes, but I am slowly feeling my life has changed for the better.

Having FMS meant that I have finally been able to shape my life the way I want it and to make my health a priority. It is about making the most of what we have or can do. It has definitely opened my eyes to what a wonderful life I do have and how lucky I am to have the support I have around me. Things could be more serious and thank fully this isn’t a life threatening illness.

I have so much to talk about surrounding the topic of living with FMS, I don’t really feel this blog post has even touched on everything I want to talk about, but for now I will leave this post here and should anybody wish to speak to me directly please just leave a comment below and I will get in touch.

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