OMF researcher working to solve ME/CFS

How can you tell if you have ME/CFS?

Do you have ME/CFS?

According to the United Kingdom National Health Service, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CFS) is a long term condition with a wide range of symptoms, the most common being extreme fatigueMost descriptions of ME/CFS talk about significant and often debilitating fatigue, as a clear signature of the illness, which is not surprising given its name.  However for someone who lives with ME/CFS, I can tell you there's so much more to this thing than simply fatigue.  It's a complex illness that can affect people differently. The following is a description of my ME/CFS journey and how it manifested for me.

The onset of my illness

I was a 45 year old healthy, happy, active person who could swim 2.5km a couple of times a week and walk up a local 232m (761ft) high mountain most days. I bounced through life working and socialising.  Like most people, I'd experienced stressful events, but nothing that I considered to be significantly more burdensome than my peers, family and friends.

One morning I awoke with sore ankles. I brushed this off as having slept in a strange position and began my day heading out for a walk with my girlfriends. Forty minutes in, I started to feel very light-headed, sweaty and unsteady.  My vision became blurry and I felt shaky all over. I assumed I needed sustenance, so I shuffled into a cafe where I ordered a large cooked breakfast and a coffee.  

Within a few minutes of consuming it, I felt as if I was falling through my chair. I could barely raise my hand to my mouth and things became other worldly.  My heart was racing, but I swore my blood pressure was dropping.  This was so out of character for me that I felt panicked.

Overwhelming Fatigue

The shaking and overall weakness continued to the point where I found it difficult to stand for more than a couple of minutes.  I kept eating whenever I got the chance, because I thought this would resolve the sensations I was feeling.  A close friend, pulled me aside to ask if I had an eating disorder.  She'd become concerned that I was eating all and yet losing weight.  Overwhelming fatigue meant my muscles spasmed with even minimal exertion such as holding my phone to my head.  Weirdly, noise and artificial lighting became intolerable and walking through a shopping mall was complete sensory overload.

One Week Later

A week later, things deteriorated further. I developed intense pain in my right hip which was so bad that I couldn’t roll onto my side without screaming in agony. Simple things, like walking to the toilet, became challenging. I had to really concentrate to get my legs to move properly and started to wonder if I'd had a stroke.

After a few days, I became ‘tired but wired’ because I hadn't slept for 3 days straight. This is no exaggeration. I couldn't even achieve a 5 minute cat nap! At night, I would lie in bed hoping I would drift off, but sleep never came. I remember the sensation of feeling like my brain was being bombarded by unformed thoughts. It was as if it was under attack with this whooshing sensation.  I also couldn’t stand the smell or thought of food, which was a dramatic shift from eating every 30 minutes. 

New Symptoms Emerged

Some new symptoms emerged as the months progressed. My skin became wrinkly and papery and my muscles felt like they were wasting away. I felt like I was aging overnight. Certain areas of my body felt like they had been burnt, particularly the upper quadrant on my back. It was sore to even touch.

The glands under my right armpit were enlarged and tender and I developed a sore throat. I also felt as though I had an obstruction that was making it difficult to swallow.  Sharp pin prick sensations would randomly occur all over my body with tiny red spots erupting at these sites moments later. 

If I exerted myself in any way, I would yawn uncontrollably as though I  was completely starved of oxygen.  One of the strangest things that happened was bruising around both ankles after a short walk around the block. 

Showering was one of the hardest tasks of the day, which was disappointing it has always been a sanctuary for me. It was exhausting to lift my arms to wash my hair, and my leg muscles would shake with the effort of standing.

I also had problems staying warm. Despite a temperate climate, I would hop into our spa pool several times a day and wear skin compression garments under my clothes to try and add a thermal and supportive layer over my aching muscles.  

I found it impossible to concentrate enough to read a book or watch television and I could only tolerate a few visitors before feeling exhausted.

A Slow Recovery

Fortunately, my Chronic Fatigue Syndrome feels largely under control but it has been a long journey to arrive at this point. The initial acute stage lasted for about 18 months. It's 10 years since my ME/CFS started and I now operate at about 85% of my pre-illness self.  I continue to have periods  when my symptoms flare, normally when I physically or mentally overdo things.  

Covid-19 re-ignited my Chronic Fatigue Syndrome

I'm not afraid to admit that I was anxious that I might have a rough time, if I got Covid-19. Surprisingly when I did get it, (the Omicron variant) I felt like I had quite a mild dose. Apart from a sore throat and some flu-like symptoms, it was pretty uneventful.

Unfortunately about 3 weeks after testing positive, things changed for the worse. Suddenly I felt like I'd shot right back to the beginnings of ME/CFS.  

I’ve read a lot over the years about ME/CFS and the symptoms others report. I have noticed that there are always similarities as well as differences between their experiences and mine. This makes sense given that we are individuals.

Like many illnesses, ME/CFS varies in severity. Some will recover like me, while others will have peaks and troughs. What is frustrating for us all, is not knowing what lies ahead, if recovery can be sustained and whether a cure will ever arrive.
This uncertainty used to make me feel scared and helpless, until I decided to do something proactive to try and help us all.

I couple of years ago, I started building Coppered®, a social enterprise to fundraise for ME/CFS research. It's taken time, but it's ready to be revealed.

Coppered® is signature ME/CFS jewellery designed for those of us impacted by Chronic Fatigue Syndrome.  My hope is that we'll feel united as community through Coppered® while fundraising for critically needed research.  I'm committed to donating 100% of company profits to ME/CFS research.  I've connected with Open Medicine Foundation to ensure any funds raised will go directly to research.

You can learn more about this initiatve here

Sally Cox
Founder | Coppered Company