What Triggered Your CFS/ME?

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I was diagnosed with severe CFS in 2006. 4years after symptoms began to manifest themselves.

I had a head injury after a fall from a horse in 2002.  At the time I was diagnosed with soft tissue damage around the top of my spine.

This was followed by an insect bite 6weeks later whilst on trip USA...this caused a fever and infection in my leg(site of bite) and I was on antibiotics for 6months but I never recovered and went down hill from then on.

In 2010 I had a Mitochondrial Function Test.... It showed very poor mitochondria function

In early 2016 I was diagnosed with Hypopituitarism and specifically Severe Adult Growth Hormone Deficency caused by severe head injury(in 2002).

The Pituitary Specialist that I saw said that it is well known that people who present with CFS symptoms following head injury can have Pituitary Damage due to TBI(Traumatic Brain Injury) and the symptoms can take months or even years to develop.

Would anyone like to share what they think may have triggered their CFS/ME? 


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  • Posted

    Hi Maureen! 

    My god you’ve been through the wars sad 

    So around four years ago I was hit with what I thought to be tonsillitis only worse .. which I guess is what you could explain glandular fever to be 🙄 didn’t quite believe my doctor at the time since as I said although very fatigued and finding it VERY hard to swallow and fighting a fever (my body naturally fights a fever when it fights a virus of any kind) I didn’t really feel too different .. until a year later .. I was having palpitations, short of breath, migraines so excruciating I couldn’t move without the rippling pain shoot through my head. So I went to my doctor, had a million tests on my heart and a million scans on my head.. where they came to the conclusion I was allergic to caffeine. Having stayed off it for the next year Years I was fit and well.. for now. 

    A year later and I start uni, I’m so excited and ready for this huge step in my life. Three weeks in and I’m hit with the same three symptoms, plus the symptoms from what I assumed was so tonsillitis .. my health hasn’t always been great since being born with a kidney reflux and needing antibiotics for 6 years .. it’s to be expected. So I battle through assuming I’m doing too much.. I take time off work and try my hardest with uni but three weeks later and nothing changes.. I go and see my doctor repeatedly and then suddenly.. it’s gone. Every symptom just like that.. another year goes by and it’s now been 5 months since the symptoms returned.. this time they aren’t leaving and I’m waiting to hear from a specialist with the hope of a diagnosis. 

    Here’s to one day finding a cure or at minimum a treatment for us all.🤔 


    • Posted

      Hi Meg

      I have heard of many people having been left with CFS symptoms following EBV(Glandular fever).

      I am so sorry to hear that you have suffered so much and being so young.  You have not even begun to live your life yet which is absolutely awful.

      I did not have problems until I was 46 and had always been active, worked full time etc and now almost 18years later!

      Thank you for sharing Meg and I really hope they can get you some answers when you see the consultant x


  • Posted

    Sorry to hear all you’ve been through in the past few years.  My CFS was started with a terrible case of stomach flu and was so sapped that I was in bed for 7 days but my usual energy didn’t feel like it ever came back.  I kept getting this “flu” every couple of months for 5 years before I was diagnosed with CFS/IBS.  Hope you get the answers you’re looking for.
  • Posted

    Hi Maureen,

    Mine was a car crash in 2012 ( not my liability) I had a spinal injury and had CFS/ME from the day after the crash, I literally woke up feeling like this. I was in alot of pain and had PTSD symptoms so DR's thought it was just me healing and would take time. 18months later, I got the CFS/ME criteria when I went to the CFS/ME specialist service.



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