I’m three weeks into treatment now. I hadn’t expected to be giving an update again so soon as I’m only a few days into my increased dose. I’ve been noticing some slight improvements in my ME, Fibro and other chronic symptoms which I can’t attribute to anything else, so fingers crossed it’s the LDN.
Firstly I’ve had an improvement in my general sense of well-being. I feel I’m battling less against the chronic pain – it’s still there but it’s having a less devastating effect on my mood when it flares. And overall I feel less ill, less like I’m coming down with something which has been a permanent feeling since developing ME.
A few days ago I went for a walk – only a couple of hundred yards but that is much, much more than I can usually manage. I stopped myself walking further because it would have been easy to really overdo it and then suffer a big crash, like I do when I’m adrenalined up. But this didn’t feel like a burst of adrenalin. It was a gentle rise in energy. I turned back towards home as soon as I remembered to listen to my body but didn’t get the usual feeling that I might not make it home. I had a lie down when I got back but had no desperate need to sleep (which is what I call a blue screen and reboot moment). And no PEM! I have to keep pacing myself so as not to ruin everything though, so have done much smaller walks since then.
The sun-sensitive rash on my face which I’ve had actually for a year longer than I’ve had ME, has started to heal. I’ve had it for that long that the reduced inflammation and smoother texture has been very noticeable to me and a real surprise! A lot of the redness has gone and the itching has reduced. That’s got me thinking that it has been an autoimmune reaction all along because it never responded to antihistamines or steroid creams. It’d be wonderful if it disappeared completely. I think it makes me look like I’ve got acne, but my boyf tells me it makes me look like an alcoholic! (He’s a flatterer, that man of mine)
The dermatitis I have at the back of my head and elsewhere as a result of spending so much time bedridden, has suddenly reduced in itching and scaliness for the first time in a year or more (none of the doctor’s ointments would clear it). This is despite the fact that I am still spending just as much time laying down as usual, implying once again that perhaps my immune system is calming down.
I’m asthmatic but take a COPD inhaler, and twice this week I’ve forgotten to take it because my lungs have been clear. That’s the first time I’ve had clear lungs in ten years.
Last but by no means least, I’ve had an improvement in sleep quality which is one of my most problematic Fibro symptoms. I think that’s largely due to improved breathing because I don’t seem to be waking up with my head pushed back and my mouth gaping anymore, like some Freddie Krugeresque paramedic has put me into an extreme recovery position to open up my airway in the night. Again, the improvement in sleep is only slight but it’s enough to be able to get out of bed to go to the loo in the morning without as much pain and stiffness and without an hour or more of trying to stand up, as usual.
Don’t get me wrong, there’s been no miracle and all these improvements are very slight – a healthier person probably wouldn’t even notice them. I’ve not picked up my bed and walked! But all apart from the increased sense of wellbeing are unexpected improvements of symptoms and conditions (like asthma) that I have not associated with my immune system in the same way I associate my ME and Fibro with it. So I don’t think these effects are psychosomatic. It’s a real surprise that symptoms I forgot existed because I’ve lived with them so long, like the face rash, are healing. Cumulatively these little improvements are already making a difference. So fingers crossed, I experience more of the same.
Incidentally, the bad headaches lasted nine days before gradually fading away. I think it was a side effect of the LDN and it didn’t seem to like me taking gabapentin. Although it’s not listed as a contraindication. Having reduced my gabapentin dosage by half last year with few after effects, I decided to stop it altogether last week to give the LDN a chance (although I take gabapentin for my pain not my seizures, don’t try this at home folks, without getting the okay from your doctor first). So the headaches ended, and I’ve not had too great an increase in pain, relatively speaking. That might be being mitigated by the LDN increasing my endorphins. I’m not aware of any other side effects from the LDN as yet.
Normally I’d round up my blog post with a positive observation. But all of this post has been positive so I’ll do something different: I’ll give myself a little word of caution to heed. A realism check. I’m going to be careful to temper my excitement, and be patient about the improvements so far because there’s no guarantee that they’ll continue, nor is there any guarantee that I won’t reach a peak dose above which I develop unbearable side effects. So as chuffed as I am that for the first time since developing this disease, I have had an uplift rather than deterioration in function and health, this is just the first small step of a long and tentative journey. Watch this space.