The long winded CFS diagnosis..

It all started with the leg cramps:

It all started on a random weekday at work. I was walking round the office then all of a sudden I had awful cramps in my calves. I felt like I couldn’t walk properly. What was this? I continued on with the day, but thought it was incredibly strange. I mentioned it to my boss, who suggested it sounded like someone she knew who had had Lyme disease. Surely not?! Thinking nothing of it, I carried on with my life.

It happened again. I was out running with the running club at work, and suddenly I couldn’t run as normal. My legs were cramping and I was falling so far behind. How strange?!

This then progressed, to back pain, leg pain, headaches, neck pain. Tiredness, tiredness, tiredness. Sore throats, cold sores, swollen glands. The urge to sleep at. Every. Possible. Moment.

Next came the time off work..

I wasn’t feeling great. I was so so tired. I barely had the energy to get out of bed and walk to the fridge to get breakfast. I had headaches almost daily. I remember a period of flu-like symptoms. I took some time off work, but due to the flexible nature of my job at the time (marketing intern) I was able to work from home..so I did. In between naps, I would try and get one more email done. I’d attempt to write or edit one more blog post – but it was like my brain wouldn’t work. I think it took me nearly a month to write about ‘the benefits of exercising in the outdoors’; a post that should have taken no more than a day.

I think I was in and out of work for a few weeks. Then I returned properly – but I would often leave early to rest, or take afternoons to work from home. I most definitely wasn’t myself!

The return to work:

I returned to work, not feeling my best, but it was manageable. My boss was wonderfully supportive.

I was able to work on the comfy sofas in the office, to rest my forever aching back. To be honest, I work best in a sassy environment with a cup of coffee anyway – so it wasn’t all bad.

The napping..zzzz….

Everyday I would return home from work and nap from 5-7, often then able to get up and eat. Despite all the napping, nothing helped.

I would also get up for work at 9, quickly shower and go in with no make up on and awful hair. Just about making it in for 9:30 (the cut off point for our ‘flex-hours’). I think I cancelled a lot of meetings on these days, too embarrassed to attend meetings looking like the human version of a cross between a toe and a potato.

The horrific point of changing jobs..

Then, in March 2018, my year long contract as a marketing intern ended. I would put this up there with the worst experiences of my life. It’s not that I have led a sheltered life, it is just that it was THE BEST JOB EVER. I absolutely loved it. I would do it forever if I could, even though I would never be able to afford a house or a new car. It didn’t matter, because it made me truly happy. It challenged me, and pushed me creatively. I woke up excited to work (although sadly this wasn’t enough to drag my tired and heavy body out of bed some days).

So, wanting to stay at the same company, I applied for a different job there. I got it, and had every hope it would be fun. It wasn’t really…but was probably made worse by the progression of this mystery tired illness I had.

The new job..

So, I started my new job. To start with, I was working every hour I could, because I was keen to impress. But then, the memory problems started.

I couldn’t remember the day before. I’d stay working til 9 to host an event, then when asked about it the next day I would have no clue I had even been there the day before.

I’d forget basic aspects of my job. I’d forget my lunch or gym kit. I’d go to make a coffee and forget why I was at the tea station.

I would have to check my calendar every hour, just so I didn’t miss meetings. WHAT WAS WRONG WITH ME?

The tiredness returned. The headaches and sore throats got worse. I’d spend weekends asleep. Weekends away with friends would consist of me taking to my bed at 4pm, missing the evenings of fun. IT SUCKED.

The doctors.

I’ll try and keep this short, as I am sure I’ve been rambling a bit..

I asked the doctors what was wrong with me. They did every test under the sun. From the top of my head, this is what they tested:

  • Cealiac disease
  • connective tissue disorder
  • depression
  • anxiety
  • vitamin D, b12, C
  • C Reactive protein
  • LDH
  • Full blood count (white cells, lymphocytes, monocytes, RBC etc etc)
  • thyroid tests
  • liver function tests
  • ferritin
  • renal profile
  • diabetes tests
  • hormone tests – androgen and testosterone
  • FSH – what even is this?
  • folate

The lump.

My LDH levels came back very high. For those of you that haven’t been poked and prodded and googled every test: LDH is kind of a measure of inflammation in the body. It’s also an indicator of muscle damage. It’s also a really common marker for cancer.

My doctor had felt my glands, and found I had a pretty giant lumpy lymph node. This combined with raised LDH and all of my other symptoms, led to her believing it was pretty possible I had lymphoma – cancer of the lymphatic system.

I went for multiple scans and multiple tests. All came back fine, phew. But, if it wasn’t this, what was it? My doctor was baffled.

Finally, they did the EBV Serology – The Glandular Fever Test

Glandular fever.

The positive EBV test proved I had had glandular fever at some point.

When?!

No one knows for sure, but they think that it was back when I had the time off work and the back pain and sore legs.

Doctors think, that the glandular fever has led to the development of CFS, as there a strong links between the two conditions.

There is some information from NHS here, on the links between glandular fever and CFS, and there is also some other reading here.

So there we have it. A diagnosis. After a long hard year, they came to a conclusion. I will post another blog on how this affected work and life, but I thought I would give you an insight into how it developed, and how it may be similar/different to your journeys.

Check out some useful links here:

Action for ME

ME Association

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