Richmond, Kingston &
West London M.E. Group

I'm taking 3.8-4mg now,  after around a year of taking it.

 

Side Effects I have experienced

 

• Initially further fatigue & drowsiness

• Vivid dreams (already a very vivid dreamer!)

• Perceived more aches than usual

• However-these effects lasted around 2 weeks & were mild.

 

I also experienced them when increasing dosage, but lasted less each time. Now I don't have any side effects.

 

I found benefit after a couple of weeks, however this hasn't been linear.

 

• I still have 'rough' periods, but they're not as brutal & not as long lasting.

• My PEM has been drastically dampened.

• I have more capacity than I had before taking it.

• It stopped me sliding further into severe & now moderate end of mod-severe (when I was the other end initially). Saved my life in that respect!

 

When I first took it, I was in rolling PEM, so had no capacity to pace. Whereas now I'm pacing much better & even leaving the house (still not often & still have to prep/recover).

 

 

Laura’s experience of LDN

 

I have had ME since 2014. In summer 2022 I also developed quite severe fibromyalgia. 

 

In Spring 2023 a friend gave me two 50mg naltrexone tablets to try to see if LDN would help. By crushing and dissolving a tablet in 100ml water I was able to measure my dose very exactly using a syringe.

 

I started by taking 0.25mg (0.5 ml of the liquid) a day for four days, then 0.5mg for 4 days, 1mg for four days, 1.5mg for six days and 2.25mg for 3 days. As I'd experienced no side effects (a pleasant surprise as I often don’t tolerate supplements well), I then increased to 4.5mg.

 

When I got to 4.5mg the first and almost immediate effect was a reduction in ME symptoms (unexpected!). This lasted for a while but gradually reduced. But over about 3 months I had a steady reduction in my pain, which enabled me to remove some of the aids I had needed, like a raised loo seat.

 

I went to Dicksons Chemist for a private prescription. I had a “consultation” which seemed mostly about explaining that LDN for fibromyalgia was off-label. I had to provide written evidence that I had an ME or fibro diagnosis to get the prescription. You pay for a prescription (3 or 6 monthly) and then a monthly fee for the LDN.

 

Initially Dicksons supplied their liquid (which I found less effective and harder to tolerate than the dissolved ‘pure’ LDN I had started with). I moved to capsules as soon as I could. Dicksons have 3 LDN formulations (liquid, capsules and sub-lingual) with formulations including differing levels and types of additional fillers; the liquid has the most fillers, but enables you to increase dose at your own pace and I know many people find it fine.

During 2024 I was diagnosed with a number of gut issues (not LDN-related) and I stopped taking LDN (and anything else).  My pain level has not returned to the earlier levels but I would restart LDN if that were to happen.