Low dose naltrexone for fibromyalgia project

Low Dose Naltrexone (LDN) for Fibromyalgia Survey

Since I have written up my one year experiment conclusion about low dose naltrexone (LDN) and Fibromyalgia, I have developed a bit of an itch to share my knowledge. I want others with chronic pain, chronic fatigue, Fibromyalgia to hear about this potential treatment option.

To this end, I am creating an eBook about LDN for Fibromyalgia.

I believe that patient-evidence (this term, which I love, was coined by Julia Schopick in her book Honest Medicine) is very important – that’s your voice, not the researcher’s voice (though, I will include research too).

Low dose naltrexone for fibromyalgia project

If you are on LDN could you please take some time to fill in this survey for me? Please do send it on to anyone you know taking LDN for Fibromyalgia. It is my hope that we receive a wide number of audience responses to really show the breadth of experience with this medicine.

For my previous posts on Low Dose Naltrexone see:

Low Dose Naltrexone: An Experiment

Low Dose Naltrexone: Update 16 Weeks

Low Dose Naltrexone (LDN), Fibromyalgia & Me

My Low Dose Naltrexone (LDN) for Fibromyalgia One Year Experiment

I also reference LDN in both of my books, more so in the Melissa vs Fibromyalgia: My Melissa vs Fibromyalgia book coverJourney Fighting Chronic Pain, Chronic Fatigue and Insomnia book – because it is a big part of why I was able to write this book.

Affiliate note: Please note that the link to my book is an affiliate link, if you make a purchase I will make a small commission at no extra cost to you.

If you have any questions, please do use the contact page and send me an email. Or come along and join the Melissa (you) vs Fibromyalgia Facebook page and ask me there.

Here is the survey link.

 


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My Top Three Treatments to Fight Fibromyalgia

If you’ve been fighting fibromyalgia for any amount of time, you likely know there’s a multitude of therapies to try and that there’s rarely one magic bullet.

Fibromyalgia is an illness of unknown origin or cure and there are debates as to whether it will eventually be classed as autoimmune and/or progressive.

3-6% of the world’s population is has a vested interest in finding a cure. Until then we can only try to wade through the treatment options to try.
My Top Three Treatments to Fight Fibromyalgia.png
My posts about other treatment options
Today I’m sharing my top three treatments to fight Fibromyalgia- as a person who’s been fighting it for more than a decade, who’s been researching for several years and who wrote a book about all I do to thrive despite this illness.

1. Low Dose Naltrexone (LDN)

This was something I found back in 2015 and followed the research for some time before I asked my doctor to try it. As I documented in the posts linked below, I began in April 2017. It took nine months for effect and now I can’t be without it.

My One Year Low Dose Naltrexone for Fibromyalgia Experiment

It is not a magic fix for me but the results are astounding. You see, for more than 10 years I hadn’t slept well (read: in one hour blocks with great difficulty, every night was a fight) and the LDN actually helped me to sleep in two, three or four hour blocks. This is miraculous for me and I believe the sleep is what helped the rest. Read the above posts for the full experiment and outcome.

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.

2. Heat

If I had to choose one heat treatment, it’d be my heat pack. I use it first thing in the morning to get going, a couple of times during the day, in the evening and when I get into bed. It’s my go-to treatment. I use it mostly for my neck, but I also use it for the symphysis pubis disorder I experience in pregnancy.
I also use:
  • An electric blanket in my bed for my entire back.
  • Hot baths
  • Hot showers
  • Deep heat rub

3. Yoga/Meditation

Meditation is part of yoga, so it may be cheating to name both, if you really want one it’d be a hard call, but yoga would win and only because LDN helps me to sleep at night.
Yoga is a multi-use tool. I adore the ability to mold it to what I need: one pertinent stretch or pose (cat and cow all the time), a few poses to hit one issue (cat and cow, forward bend and eagle for the back) or a full flowing sequence (sun salutations).
It’s stretching, strengthening and calming for the central nervous system.
Meditation has been a lifesaver since I realised I could experience deep rest to help counteract the lack of sleep. The effects have been profound and I share that in my post about meditation. There’s an entire module for both yoga and meditation in You vs Fibromyalgia eCourse in addition to heat and LDN as part of the pain relief module so come and join this special course to work through the material together.

So here are my top three plus ways to fight Fibromyalgia

  1. Low Dose Naltrexone
  2. Heat
    1. Heatpack
    2. Electric blanket
    3. Hot bath
    4. Hot shower
    5. Deep Heat rub
  3. Yoga/Meditation
What are yours?

 

 

My Low Dose Naltrexone (LDN) for Fibromyalgia One Year Experiment

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.
How Low Dose Naltrexone (LDN) Changed My Life

Affiliate notice: Please note that some of my links may be affiliate links. If you make a purchase, I may make a small commission at no extra cost to you.

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:

Five ways LDN is changing my life

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.
I wrote the LDN mini eBook with the melissa vs fibromyalgia LDN angled shadowresearch summary, my experience, notes on pregnancy with a handy list of research you can take to your doctor if you’re considering trying low dose naltrexone. 

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.

Conclusion

LDN is not a miracle medicine nor standalone treatment option for me, but it is changing my life and I’m so thankful.

For more information

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Melissa vs Fibromyalgia book cover

My book is everything I have researched and do to fight Fibromyalgia