CFS/ME diary 1 – My GP Experience

I did a poll on my Instagram stories asking if you would be interested in reading my hospital experience / what to expect, and I got a resounding yes!  So here it is, my CFS/ME diagnosis story with my GP – before I was referred to the hospital.

I initially started experiencing symptoms during my coeliac disease diagnosis back in 2015 / 2016.  My symptoms were put down to my coeliac disease rather than any other illness.  I did undergo testing for some illnesses, I had an ultrasound, a barium swallow & x-ray, a brain MRI scan and during my endoscopy they also tested for a stomach bacteria and stomach cancer – they all came back negative.

I was under consultant care at the hospital and whenever we questioned if it was normal to be bed bound, suffer extreme fatigue and muscle aches, she always put it down to my coeliac disease.  At the end of 2016, I was given back to my GP for my coeliac care and was told that the fatigue I was experiencing is still normal with coeliac disease.  I just accepted this and got on with my life, and I started my A level studies.

In April / May time of 2017, I was still suffering with my fatigue and decided to go back to my GP to see if there was anything he could do.  He did full bloods and found I was vitamin D deficient.  I was prescribed a course of tablets and I did feel an improvement but it wasn’t considerable and I was still spending a lot of my time in bed after school, going to bed at 7.30/8pm and not going out much.  Once my tablets were completed, I carried on taking ones you can buy at the supermarkets (as advised by my GP – apparently most of us are vitamin D deficient in the UK) and just accepted the fatigue I was experiencing.

In April / May 2018, it was coming up to exam times and I was suffering with the fatigue badly.  I was still going to bed at 8pm and doing the majority of my revision from bed.  I decided to call Coeliac UK’s helpline as I was getting frustrated being told that my symptoms were down to my coeliac disease.  They confirmed my suspicions and said the fatigue I was experiencing wasn’t coeliac related being as I had been following a strict gluten free diet for so long.  I then went back to my GP with this evidence and he sent me for full blood tests.  He did tell me at this stage that if something was wrong with my bloods, he would treat that but he was suspicious that it could be ME/Chronic Fatigue Syndrome.

These bloods all came back negative and I was asked to go to my GP for a few more tests.  He felt my stomach (I presume for any lumps!) and tapped on my stomach (I guess listening for gas?!).  Everything was normal.  He said he would then refer me to the hospital to see a specialist doctor to confirm my diagnosis and to offer possible treatment.  This was all confirmed in the middle of my A level exams in June (quite a slow process!) and my hospital appointment came through for the start of September.  I had to manage these next few months with no real help from the doctors.

I was due to start full-time work at the start of September as I had a 39.5 hours a week business apprenticeship lined up.  My parents were a little concerned that maybe I couldn’t manage (as a result of this diagnosis and what we had read on the internet) so I went to speak to my GP.  He confirmed that I would definitely be able to manage this (and did make us feel quite silly for asking) – we know now that I couldn’t mange it!!

If you think you have ME/CFS and your GP isn’t being the most helpful(!), I would recommended asking for the following:

  •  Full blood tests to rule out any other illnesses
  • If the blood tests all come back negative, ask to be referred to the hospital to see a specialist as they know exactly what the symptoms are and diagnose the condition often.
  • Possibly remind your GP that the symptoms and severity vary from person to person greatly!  Some people are unable to leave the house, while others are able to work part-time hours.
  • Remember, you may not have CFS/ME.  Don’t encourage your doctor to rule out other illnesses to swiftly that are easily treatable (I know they’re the doctor but it can be easy to be pushy, especially when you are frustrated!).
  • There is no real treatment for this condition, just management.
  • The ME Association is a good resource for information.

I hope you’ve found this interesting and / or helpful.  I’m going to carry on with this series for now and I will document all of my appointments related to my CFS/ME.

The next post can be found at Diary 2 Initial Assessment


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