My Story

By Tanya

I am 46 years old. I was diagnosed in 2018 after experiencing extreme pain for 2 months that kept getting worse.  I also felt tired beyond anything I could believe in and so emotional.

I went to my G.P. and cried.  I begged him to cut my skin to relieve the pain.  

He took bloods there and then, thinking it might be Celiacs Disease.  I left the surgery with valium and painkillers.  When the results came back a few days later he referred me to the M.E./CFS Clinic.   4 weeks later I had my appointment with the clinic and got diagnosed before leaving.

I started Occupational Therapy with a Psychotherapist and she requested I went through my full medical history to see if anything stood out.  My G.P. printed up all my records and I discovered at 8 years old I had Mumps.  Everytime I went to the doctors after 8 years old, I had a symptom of M.E./CFS.  I never had a virus, just virus-like symptoms.  I never had the flu, just flu-like symptoms and so on.  

I remember growing up always feeling ill, even being made, at one point, to feel like a hypochondriac.  I never seemed to outgrown my afternoon naps and most nights I was in bed for 7.30.  In my late teens to early twenties I went clubbing, as most do, but I remember always being violently sick after alcohol and feeling more than hung over the next few days afterwards. 

I have not touched alcohol or caffeine for many years now and manage my wheat/gluten intake. I have a balanced diet for hormones, low blood pressure and low sugar levels.  I continue to have afternoon naps and go to bed early.  I get plenty of sleep but never wake up refreshed.  I have to practise daily mindfulness as I need to control my moods, anxiety and panic attacks.  I have qualified as a Pain Management Practitioner to lower my pain levels.  I now only occasionally take pain medication.  

For me the worst symptoms are brain fog and weakening muscles.

I love the Hull and East Yorkshire group as it allows me to connect with others that ‘get it’ and are non-judgemental.  Everyone that attends is so supportive and I take great strength from this.  It’s a very lonely condition without the members of the group.