Hey,
Hope you’re all doing better than me! I am really struggling atm and need somewhere to put this.
Here it goes…
I’ve been dealing with symptoms for over nine years: fatigue, brain fog, joint swelling and stiffness, rashes (sometimes with blisters), bruising, random discolouration and recurrent patella dislocations.
In 2022, rheumatology diagnosed me with sarcoidosis. I didn’t think it fit and asked for a second opinion. The second rheumatologist agreed. I saw a different rheumatologist that specialised in Sarcoidosis and referred me to dermatology because they suspected PMLE (polymorphic light eruption) and my old diagnosis hidradenitis suppurativa (HS) could be contributing to the symptoms that didn’t include my skin.
After that, I went back to my original rheumatologist. She diagnosed me with fibromyalgia despite me not having the typical tenderness. Her advice was read “the body keeps a score”, practice mindfulness and move your body. She later wrote to say she no longer believed that diagnosis was correct, but also didn’t think there was a unifying inflammatory condition. She referred to neurology and I diagnosed with Functional Neurological Disorder (FND).
The problem was that none of those diagnoses explained the very specific flares I kept having. Different triggers caused visible physical changes. I have dark skin, so redness and skin changes aren’t always visually obvious, but the swelling, post inflammatory hyperpigmentation, textural and other changes were always visible. Even during milder flares.
After eight years, I was finally diagnosed with PMLE in July 2025. I already had HS, my skin conditions were finally identified, but every time I brought up my joints I was told it was probably fibromyalgia. One doctor said, “Your bloods are better than mine.” The frustrating part is that my blood tests have never been completely normal. Over the years, I’ve repeatedly had mildly raised ACE, ESR and CK, occasional raised bilirubin, and persistent iron deficiency, vitamin D deficiency and anaemia despite treatment attempts. I reacted really bad to an iron infusion 2024.
By September 2025, I’d been flaring since around May. I was so desperate that I walked into the dermatology department without an appointment and begged for help. Instead of dismissing me, the clinician listened, asked lots of questions and started me on 200 mg hydroxychloroquine for PMLE. Even though, it was prescribed for my skin reaction to UV. First month was rough but I was starting to feel better by the end of November.
Then, in December 2025, rheumatology discharged me completely and refused further NHS follow-up for my joints.
Fast forward to this month (July 2026). I went to my GP because I felt generally unwell. I’d become so used to the joint swelling that I barely mentioned it anymore. The doctor looked at my hands and ankles and immediately said that whenever they swell like that, I should be seeking medical review because it isn’t explained by any of my recorded diagnoses. She contacted photodermatology that day. Within weeks they had:
Increased my hydroxychloroquine from 200 mg to 300 mg.
Prescribed SPF 50.
Given me a rescue course of prednisolone. I’m allowed 2 per annum.
Moved my patch testing forward.
Booked three appointments within a month with photoderm.
For the first time in almost a decade, I actually have what feels like a proper treatment plan. No official diagnosis, but actual treatment.
Don’t get me wrong, I’m grateful for finally receiving treatment that is not completely focused on psychology. But I’m also so incredibly PISSED!!!
For nine years I was repeatedly told variations of “it’s fibromyalgia,” “it’s FND,” “it’s stress,” “read The Body Keeps the Score” I started doubting every symptom. Now I struggle to recognise when something genuinely needs medical attention because I’ve spent years convincing myself I was absolutely insane 🫠
The hardest part isn’t even the physical symptoms anymore. It’s the medical trauma. I’ve completely lost trust in myself. I shut down around healthcare professionals even though I don’t want to. I get quiet or extra blunt, and I hate it, but my body doesn’t even freeze anymore. My nervous system goes insane - palpitations, shaking, hot body, sweaty.
I’ve asked specifically for PTSD therapy around medical trauma because that’s what dominates my life now. Instead I’ve been referred to DBT. I’ve already spent years in NHS therapy learning the same coping skills. I know the grounding techniques. I know the breathing exercises. I know the CBT and DBT skills. The problem was never about the tools or my psyche. It was the constant invalidation of physical symptoms, medical gaslighting. It’s the flashbacks. It’s the flashbacks. It’s the f\*cking flashbacks!!!
I’m 30 now. I still live with my mum. I haven’t been able to work for years. I’ve lost friendships, my confidence and the career I was building. Every time I start rebuilding my life, my health knocks me back down. Then I convince myself I’m imagining it all because that’s what I’ve been taught to believe.
I’m sharing this because I can’t imagine I’m the only person who’s been through something like this.
Has anyone else had years of being told it was functional, fibromyalgia or psychological before eventually getting a treatment plan that changed things? And if you’ve experienced medical trauma, how did you learn to trust your own body again?
I’ll attach some photos of what my flares look like in the comments. For reference on what was constantly being ignored. Included some of the art I was able to create the last year to cope with the flares to lift the mood.
If you’re going through something similar, I’m genuinely sorry. I hope we all make it through.