I’ve been diagnosed with fibromyalgia for about 10 years and it took probably that long to get a diagnosis. I had chronic fatigue syndrome some 25ish years ago. I got Covid in 2023 and had long covid badly for more than a year and haven’t returned to my normal fibro baseline even after that.
I was on naproxen (and various other NSAIDS before that) but discovered 3 years ago that I had developed small stomach ulcers so I’ve not been allowed NSAIDS since. My pain relief for fibro come mainly from paracetamol (acetaminophen), gabapentin, dry needling, and a tens machine. It’s still not as effective as naproxen was but it’s as good as I can get it right now.
After many years I finally got my shit together to try LDN. In the UK you can get it on private prescription from a pharmacy in Glasgow called Dickson’s. It works out at about £40 a month with the private prescription and the drops. I’ve been on it for 4 months now and am only just up to the target dose of 9 drops (4.5ml).
Benefits: so far my brain fog is much less. Since covid 3 years ago I’ve really struggled to read books and to order thoughts. I used to be an academic. It wasn’t unusual for me to read 50-80 books a year. Since Covid I mostly used audiobooks. Currently I’m reading a paperback a day pretty consistently instead of binge watching things.
What it hasn’t helped as noticeably is my energy levels. I have been doing more on some days but then crash afterwards so I suspect it is helping a bit but I need to not dive in but be sensible with how much I’m trying to do.
Side effects: some gut discomfort. I chose drops because of my history of stomach issues so the tablets (capsules?) aren’t recommend for me. The drops are sublingual and taste minging but I’m getting used to them. I do get a slightly sore tummy though most days. A snack an hour or so after taking it can help though.
Possible side effect of slightly manic online shopping. That may be tied into my mum and uncle dying in quick succession but I think the brain chemistry changes played a big part in it too. I have spent money I can afford but it was out of control for a bit.
I can cry again. I’m on fluoxetine (Prozac) to try and support my fibro as I can’t tolerate duloxetine without harming myself. Since being on fluoxetine I have struggled to cry even with the aforementioned deaths. I will now cry at The Pitt like god intended.
It’s also easier for me to orgasm. If you struggle to come on SSRIs/SNRIs like I do on fluoxetine then this seems to combat that.
Biggest side effect is lucid dreams. I’ve been badly anaemic several times in the past and had 2 full term pregnancies so I’m used to my dreams being fucked up at times. Anaemia dreams were horrific with people close to me dying. Pregnancy dreams had a certain urgency to them and always felt quite anxiety inducing. I would say my LDN dreams are much closer to pregnancy dreams than anaemia dreams. There’s a level of anxiety to them - usually having to sort out my now deceased mum’s home or those sorts of stressful organising tasks but they don’t feel like nightmares. If you already have PTSD it may be different for you though. I started on a slightly higher dose of LDN (3 drops I think) but you can start on 1 drop (0.5ml) and work up from there and have increased weekly for the first few weeks and then fortnightly and for the last increase I took 3 weeks just because it suited my diary better. I slowed down the increase to reduce the side effects and you can increase the dose or decrease it if needed according to your own situation.
I’m told it can take 6 months to feel the full benefit so I’m hoping I still have some improvement to come with the increased dose and with more time. We’ll see. It is so far a good experience for me overall. It’s not a magic cure. It’s helped some symptoms but not others.
I know my fibro/long covid symptoms fluctuate so it may be that I was due an upturn anyway but I do think the meds have either triggered that or caused it or held its hand. Overall for me LDN seems like a good option given my long term issues and multiple causes. For me it’s affordable too. But I know for some people an additional £40 a month isn’t doable.
Happy to answer any questions.
