Hello Comp - ADHD meds after 2 years

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ADHD meds after 2 years

As dry January ended I cleaned out the alcohol cupboard of my favourite whiskies (I had a 12yr old Yamazaki in there), and readied myself for a level of productivity that I could only dream of. No more last minute jobs. No more putting things off. 2024 was going to be the year of getting things done. Unfortunately I got COVID during the titration period and Productivity Pete never went into production.

The months after Covid left me feeling tired all the time. “Ah it’s probably just post viral fatigue” I thought. A morning swim would leave me exhausted for a couple of days, and entire weekends were lost in an attempt to stay fit. In the early days of titration I felt a real kick from the meds, like how people described their morning coffee, and I missed that. As coffee had no effect on me, I was glad to finally have something that did get my morning started. Covid robbed me of that.

About 1 year after starting titration I spoke to my local GP about my exhaustion. They suggested it could be Long Covid or ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). I had never considered Long Covid as I thought it wasn’t something you got with the vaccine and boosters. They added that most of those clinics were closing down, and referred me to the ME/CFS clinic instead. It is now an entire year later and I will have my first appointment with the ME/CFS clinic in a few weeks. I hope they have answers.

While I’ve been waiting I felt my health slip away from me. I wouldn’t say I was a super healthy, lean, trim, person but I was able to run 10km whenever I felt like it. As 2025 progressed I lost the ability to walk up the hill by my house to the bus stop. By the time I reached the top I felt completely exhausted, as if I had just ran 15 miles. This wasn’t a 5pm on a Friday exhaustion. This was pins and needles in my hands and face along with the inability to talk exhaustion. When I say it was like having ran 15 miles, I mean it because that is the only time I’ve ever experienced that feeling. From a self diagnosis via the CFS Reddit and WebMD, that feeling maybe caused by Small Fiber Neuropathy. Maybe... I’m no doctor.

By late autumn I was triggering this issue on almost every photography commission, and having no choice other than to battle through it. Imagine feeling like you ran 15 miles to every job you had to do. It was exhausting, and soul destroying. With bills to pay I had no choice to keep pushing, but from what I had read about ME/CFS the act of pushing, of carrying on with your active life was one of the key factors in making you worse. Even knowing that, I could not afford to pass up work. So I bought a walking stick and kept on keeping on, hoping I would not become bedridden. Every day my legs and arms felt weak. Going up and down the stairs felt like I’d just done 100 squats. Doing the washing up was as if I’d been lifting heavy weights before hand. My body was physically exhausted every single day.

General symptoms which led me to think ME/CFS;

• Daily muscle weakness / aches
• Flu like feeling of tiredness
• Dry mouth from over exertion
• Breathlessness
• Brain fog
• Raynaud’s symptoms - wearing multiple pairs of socks / gloves all the time

During these incredibly hard times I did not feel at all productive. I kept taking the ADHD medication, feeling no boost of energy and crashing at random times of the day. If I could only have been super productive without needing to leave my house, maybe I could have made money that way? I kept going with the medication because none of the three doctors I had spoken to suggested otherwise. I asked whether the ADHD medication could have been causing my chronic fatigue and no-one said “Yes.” So I carried on taking it.

One tip the doctor gave me was to take breaks from the medication now and then. I did so when I was on holiday. In 2024 my wife and I spent a few weeks touring Europe, and I had no issues. However, as I walked from Euston Station to St Pancras to board the Eurostar for our 2025 Christmas trip my energy crashed. Both times I was off the meds. The 2025 crash left me feeling like it wasn’t the ADHD medication and was ME/CFS, and that I probably won’t be travelling like we once did.

Over Christmas I took another break from the meds and did not feel any different. I was tired, but not exhausted. After New Year I should have restarted taking the medication, but as I wasn’t planning on getting back to work for a few more days I skipped them. By around the first week of January I started feeling... good. You know how people describe getting their energy back after giving up sugar, caffeine, and alcohol? It was like that. For the past 2 years I had given up caffeine and alcohol and felt nothing. Maybe coming off the ADHD meds meant I was finally starting to feel the benefit of being decaf teetotal?

As the weeks continued I tested myself by going for walks. I managed walking up that hill without issue. This week I managed to do a 5km run, a few upper body weights classes, and a 7km run. If I had ME/CFS, the 5km would have crashed my body for a week. There is no way I would have been able to do the weights class let alone the 7km run. I asked ChatGPT, which I know I shouldn’t do but I need answers, and it said;

– ME/CFS: currently unlikely, based on post-medication exercise tolerance
– ADHD medication side effects: strongly supported by temporal pattern and resolution
– Autonomic sensitivity (not a diagnosis, more a trait): plausible
– Raynaud’s-like symptoms: can absolutely be stimulant-induced

There is a chance that I did not have Long COVID or ME/CFS, and that instead I’ve spent 2 years taking my ADHD productivity pills only to completely trash my health. It would have been nice to have felt great after giving up alcohol and to have then spent 2 years being more productive than I ever have been, but it was not to be. Instead I’m left feeling frustrated. NHS waiting lists are wildly out of control. A year waiting to talk with someone properly about ME/CFS, absurd. My ADHD doctor has suggested trying a different type of medication that was in short supply 2 years ago, but he cannot say when that will be. It could be months or years.

Years... on top of 47 years struggling with ADHD with so little help. I had no idea I had ADHD until 2021 when I discovered there was ADD. ADHD without the H, which they changed to ADHD type inattentive (because its snappier). A few years pondering, followed by a few years waiting to get a diagnosis, followed by months waiting for medication only to have it clash with COVID and make life extra hard to play. This was supposed to be the pill that would clear my head of distraction and fix me. I was supposed to be focused and able to stay on target without ... squirrel! Instead I had no energy, no will to live for 2 years. Sure I managed to do a few things like travel around Europe, Wales, do a mass skinny dip, think and question life but what more could I have been doing? I could have been functional, maybe even normal?

I don't blame individuals, but the system is broken. 2 years feeling like my life was ending, not fun. I have to be glad it isn’t and really push hard now because I’ve had a taste of feeling like life is over and I don’t like it. If only there was something I could take to help me get started before I get distracted by ... squirrel!

Links

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