It’s been a year since my giant experiment with low dose naltrexone (LDN). What a year it has been.
See my post LDN, Fibromyalgia and Me for my last update. Also see Low Dose Naltrexone: An Experiment my first post introducing the experiment.
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How Low Dose Naltrexone works in a nutshell
It works in the endocannabinoid system – it temporarily blocks the receptors encouraging the body to make more endorphins. There’s research and explanations in my introductory post here and in the chapter about LDN in my book Melissa vs Fibromyalgia. I also created a printable of the LDN chapter from my book with research list so that you can do some research and take it to your doctor in my Etsy shop here.
What I love most about this medicine is that it is not a typical medicine and does not have any of the nasty side effects that most medicines prescribed for Fibromyalgia have. The worst I experienced was vivid dreams when I was titrating up to find my ideal dose. It essentially tricks the body into producing more endorphins, there is research theorizing that people with Fibromyalgia suffer from endocannabinoid deficiency. I believe it took nine months for me to see effect because my body was slowly healing from a deep sleep deprivation behind the scenes. This leads me to believe that LDN may be the only way to address an insufficiency that currently has no other satisfactory treatment option. I certainly prefer it to pain killers that have many negative effects and few positive ones.
There is also plenty of research and patient evidence available – groups on Facebook about LDN and the LDN research trust have a wealth of knowledge.
So here are the five benefits I have noted from LDN:
Benefit One Sleep
What it’s helped me with – first and foremost is sleep. For the ten years or so prior to LDN I had not slept in more than one hour blocks, that’s rarely completing a whole sleep cycle, therefore my body was in chronic deep sleep deprivation. Since LDN, I can sleep in two, three, four or even five hour blocks! I am so grateful for this, I can’t even tell you. I believe this is what has created the other benefits.
Please do note that I still have to take amitriptyline to get to sleep and enact my sleep hygiene list daily.
Benefit Two Pain
Since about nine months into treatment I have noticed a reduction in neck pain. Neck pain has been a 24/7 issue for over 10 years. In 2017, while starting LDN, I learnt that my neck issue is actually myofascial pain syndrome. After throwing the severe, recurring “muscle knots” (trigger points) into the fibro basket, I finally had an answer. The physiotherapist has been helping me to work on these trigger points through intramuscular needling (gently inserting a tiny needle into the trigger point and letting it relax a little) and neck mobilisations. This and the sleep (potentially reducing the fibromyalgia worsening the issue) has helped. My pain levels were 6-8/10 with severe headaches (with dizziness and nausea) daily back in 2010 before I started this journey. Just prior to LDN they were approximately 4-6/10 with occasional severe headaches. In early 2018, after one year on LDN, the average is 3-4/10 with the occasional spike to 5/6 with a bad headache and it’s usually when I’ve overdone it.
Benefit Three Emotional
If you haven’t lived with pain that interrupts sleep, interferes with daily life all day, every day for over a decade or been unable to sleep for more than an hour at a time for about the same length of time – it’ll be hard to convey the depth of impact on my emotional well-being.
Not fighting to sleep at 3am, not swapping pillows, getting my heat pack, applying pain cream and basically not sleeping due to unrelenting pain is huge for me.
My quality if life is so much better. I never let myself lose hope, but it was dwindling. This was a necessary win.
Benefit Four Stamina
Slowly my stamina increased. Activities that used to wipe me out can be tolerated for longer. I can exercise slightly more. I can do slightly more.
Having had a baby with reflux, I feel I coped exceptionally well and that is down to LDN. The demands on a mama of two is much higher than a mama with one! It’s been a busy year.
Benefit Five Fatigue
Fatigue is the second of my two worst symptoms (neck pain being the first). Yes, that’s “is” not “was”. It’s improved but I still have a limited energy envelope. I can get through the day on a 15 minute meditation and a brief sit down with the heat pack. I still can’t physically stay up past 9pm and that’s a fair trade off to me.
A Note on Pregnancy
I did some research around the use of LDN in pregnancy for my book and found a fertility doctor who has been using it for years and it’s had benefits for mama and baby.
There isn’t a lot of literature around medicine use in pregnancy, but I took what I had and presented my choice to stay on it to my doctor. We decided for my context it was worth continuing. But that is individual and you need to take the research to your doctor if you are considering taking it during pregnancy – know your stuff in case your doctor doesn’t, they’ll hopefully appreciate the information.
LDN is not a miracle medicine nor standalone treatment option for me, but it is changing my life and I’m so thankful.