So today is the eve of my second attempt of returning to work – however, I still have no concrete answers as to what caused my multiple infections or what is behind this fatigue, the like of which I have never experienced before.

Some of the topics discussed in this post follow on from a previous blog post, although it is not essential reading: 6-weeks-to-forget-the-start-of-humira-but-another-infection

As a quick recap for those that haven’t been following, since the start of October, I have had a run of back to back infections along with other health issues – chest infections, tonsillitis, asthma attacks, sinus infections – it’s been a fun two months.

The infections are no surprise, I’m on biologics and it goes with the territory. However, although I might get a number of minor annoying infections, on average I only need to use antibiotics once or twice a year for either a really bad one or a persistent infection that my body just can’t shake off. For context, in these last 8 weeks, I’ve had three courses of antibiotics, two different types and a course of steroids – and I still feel terrible!

The infections are all but gone, asthma back under control, no more fevers but I am left with this absolutely crippling fatigue, night sweats, lack of appetite, mouth ulcers and lethargy that I just can’t explain. I’ve heard people curse chronic fatigue but having only ever experienced it for say a week when I’ve had the flu, I’ve never appreciated just how debilitating it is. I literally cannot plan my day around it, sometimes I feel twice my body weight and sapped of all energy all day, other days I’m fine and then out of nowhere it hits me when I’m in the middle of something and I can’t keep my eyes open or get out of the chair. Something isn’t right and that’s why I am now pushing for answers – it feels like more than just another infection. It feels autoimmune.

In discussion with my healthcare providers, there are a couple of theories here. Either my immune system has been knocked down too low by the biologics, perhaps with the switch back to Humira being a contributing factor. The other theory is that I am worn out because my body is fighting something, either autoimmune-based, fatigued from all the infections or something else.

I’m waiting on the results of blood tests to help us narrow down the cause, however getting a complete answer is going to take time and I can’t sit around and wait for a diagnosis – so I am dreading returning to work tomorrow but I have no choice.

This whole episode and dealing with chronic fatigue for the first time isn’t going to go away so I need to focus my mind on dealing with it and managing through the day. Therefore, any tips or advice you may have on this subject would be most welcome and I’ll share the best ones in a future post.

Perhaps you have long since suffered with chronic fatigue and are a bit of an expert – if so, get in touch, I’d love to have a guest post on the subject.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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