road to diagnosis

[RA_123]

Hi everyone,

I don’t know where to start… it’s been a bit of a rollercoaster so far.

It all started when I started getting redness and discolouration in both feet. My GP did a blood test and referred me to my rheumatologist for further assessment. My rheumatologist felt that my feet getting red was caused by a condition called erythromelalgia which was also confirmed by the dermatologist who I was referred to for a second opinion. I was told that erythromelalgia often co occurs with other autoimmune conditions so further blood tests were done to rule this out/confirm. My blood test showed a positive ANA and also Anti double stranded dna antibodies which I was told is an indicator of lupus and thus they would see me on a yearly basis to review things. This has been ongoing for nearly two years. I’ve recently experienced what I think is a flare up. I’ve been experiencing extreme fatigue to the point that I have to force myself just to do simple tasks. I’ve been feeling mentally exhausted and can’t seem to think straight. I’ve also been getting a rash across both cheeks which looks a bit like a lupus rash to me. I have also been getting recurrent boils throughout my body. I was given a course of antibiotics for this previously which helped to some extent . I’ve had other health issues previously but I’m not sure if these are all related. Based on the above information, does this sound lupus related? I’ve been asked to keep an eye out on new symptoms and I feel like I’m just imaging things at this point!

Thank you

[Maycontainnuts]

Good morning RA_123, I’m sorry to hear of your health woes. Short answer is that butterfly rash and fatigue are indeed hallmarks of lupus - but they can be present in other conditions too.. By definition systemic diseases can affect any part of the body. It’s not for nothing that lupus is called The Great Imitator. All of us present with our own unique set of symptoms and they are constantly changing and as you’re aware, one autoimmune condition often begets another. Looking back I’d had symptoms all my life but the dots weren’t joined until my mid-50s and yet even though I’d had symptoms for all those years, just dealing with them as they came along, as soon as I got the lupus label I became hyper vigilant for any new twinge, ache, rash, etc. So I don’t think you’re imagining anything at all! It took a few years but my health anxiety settled even though I have to stay on that rollercoaster - I’m always getting new random symptoms, it’s difficult to know for sure whether they’re lupus-related or not, and I’m back to being able to just deal with them as they come along, not to say it doesn’t get me down sometimes but that’s just part of the package. The reality is that there is no conclusive way to rule it in or out and my own experience tells me there is no one size fits one, never mind all, treatment as range and severity of symptoms is so different for every one of us. I hope you are fortunate to have access to a good healthcare team but never be afraid to ask for a second opinion or another perspective. I wish you a happy new year - hope 2024 brings you all the lucky breaks. Sending love x

[RA_123 in reply to Maycontainnuts]

Thank you for your reply.

Happy new year to you too and I hope the same for you too x

[Walkinglondon]

With the positive ANA, the rash, the fatigue and brain fog it sounds very much like Lupus. The boiling feeling also familiar, as if your blood is boiling. Any fevers with it? Lupus manifests itself in many different parts of the body and in many different ways. Don’t doubt yourself, you know when something doesn’t feel right. I hope you have a good rheumatogy team who know about Lupus. That is important. All the best!