u/Flaky_Pomelo_593

I have had ME for 10 years and have suffered from nerve pain in my legs since the beginning. Now that my condition has deteriorated further, the pain symptoms have expanded to include muscle weakness, muscle pain, nerve pain (sharp, stinging sensations), fasciculations, and cold patches under my skin that come and go, mainly in my legs. The muscle weakness is also in my hands and arms.

Is this a common symptom of SFN?

I started taking 0.25 mg for ME/CFS two weeks ago (25 April)

I’m one of the lucky ones, because after just a few days I already noticed an improvement in my symptoms of orthostatic intolerance – fewer spikes in my heart rate.

And after a week and a half, I’ve also noticed that I can do more physically than, say, a month ago. It’s subtle, but given that I was previously lying down for 21/24 hours a day, I can tell a clear difference.
Now, after two weeks, I’m still suffering from headaches, so I’m holding off on increasing the dose to 0.50 mg until the headaches have been gone for a week.

I often read that you need to build up to your ‘sweet spot’, but what exactly does that mean? The point at which you no longer notice any improvement?
Isn’t that incredibly difficult, given how subtle it is? 🤔

I started taking 0.25 mg of LDN for ME/cfs a week ago, with the intention of increasing the dose by 0.25 mg every two weeks, provided I don’t experience any side effects.

I have had ME/CFS for over 10 years, as well as orthostatic intolerance and orthostatic hypotension. When standing or sitting upright, my blood pressure drops, but my heart rate compensates for this by increasing to ensure blood is still pumped to my organs and brain.

Now, a week after starting LDN, I’ve noticed that I’m much less affected by orthostatic hypotension; I can also see this in the data on my Garmin smartwatch – my heart rate stays low.

Can a low starting dose have such a rapid impact on my central nervous system?

This is the only thing that has changed so far; I still have muscle weakness, muscle pain, and so on.