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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Top Posts of 2017: What You Were Looking For

I haven’t done this before, but it’s excessively interesting! Here are the seven most popular posts from 2017.

What Works-

The most popular post of 2017 was What Works: A Round Up. I shared my seven top tips for living well with Fibromyalgia and seven fibro bloggers shared some tips of what works for them.

They talk symptom relief, diet, rest and daily rituals to manage Fibromyalgia.


Pregnancy and Fibro

The second most popular post was the one where I announced my book Fibro Mama Pregnancy and Fibromyalgia. It was such a dream come true to write and publish a book and to share this hard earned knowledge.

 


Low Dose Naltrexone (LDN)The third was where I shared my research and experience with low dose naltrexone (LDN). It has been such a ride since starting LDN last April. I could never have published my Fibro Mama book or written my Melissa vs Fibromyalgia book (out January 29th). LDN isn’t a stand alone treatment, but it has helped me so much.

 

 


fibro friendly links

I’m a big fan of yoga. I use it in all its forms to manage the symptoms of Fibromyalgia. In this post I shared My Pain/Fatigue Friendly Yoga Links from bed yoga for spoonies, to yoga for neck pain and full sun salutations.

You can also sign up for access to my free resources page where there is a PDF report Yoga for Fibromyalgia.

 

 

 


A Tricky Parenting SecretI shared A Tricky Parenting Secret after I’d been despairing about how to help my kids have a nice time despite pain and fatigue. It really doesn’t take as much as you’d think.

 

 

 

 


A Confession on Pacing and Boundaries was also popular, it’s a really tricky balance when you have children. It sometimes feels like the biggest battle isn’t to define your boundaries, but to protect them.


I wrote my Pregnancy Diaries when I was pregnant in 2016, last year I edited and posted fibro mama weeks 31-33them. Fibro Mama Pregnancy Diaries: Weeks 31-33 was rather popular. Looking back, this was the calm before the storm.


So these were my seven most popular posts of 2017. I’d love to hear the topics you have enjoyed the most and would like me to write more about in 2018.

If you like my posts then please feel free to sign up to my newsletter. You’ll also receive my free Microcourse – Arm Yourself with Knowledge (about pregnancy, nursing and parenting with Fibromyalgia)

 

2017 – Melissa vs Fibromyalgia in Review

What a year! My second baby has been in this first year, learning to roll, crawl and, now, trying to walk. My first has been in this third year, learning and growing so fast.

I’m in a period of healing, that phase where you feel like things could get better. The low dose naltrexone (LDN) seems to be helping with stamina, pain and fatigue. I’m not sure how far it will go, but I am grateful for a renewed sense of hope.

Despite extended sleep deprivation due to the baby with reflux, I have coped excessively well. I’ve also had a separate health issue that drained on me for more than two months and I managed to cope and keep going forward despite it.

New Medicine

I began low dose naltrexone in April. After nine months and many dose varieties, I am holding at 4mg with improved stamina, slightly reduced fatigue and a slight difference in pain levels. I look forward to further improvements.

Supplements

MSM supplement has been a useful addition to my arsenal. It is supposed to help with muscle, tendon and ligament pain in addition to healing the gut.

Magnesium oil right before bed around my neck and shoulders. I’ve taken magnesium for a long time, and it’s nice to not have to take it in tablet form.

Moringa powder provides 18/20 amino acids in addition to being a good source of iron and other nutrients. I am not very good at remembering to take it as it’s best taken with juice or in a smoothie – I dislike juice and I usually share smoothies within my three year old.

Exercise

After dealing with symphisis pubis disorder for several months after having Wyatt last December, I am pleased to be walking 20-30 minutes a few times a week (it’s a time thing with two small children, I’d love to do it more). I’m also back to my sun salutation sequence whenever I can.

Work

I’m looking at going back to work and am trying to find something that won’t demand too many hours, too much energy. I am looking forward to it.

A life goal
I accomplished a life goal when I published my book Fibro Mama: Pregnancy and Fibromyalgia. Since I was a young teenager, I have loved writing. When I wrote my life goal list up in my early twenties (doesn’t everyone do this, write it up physically?), publishing a book was on there. As I researched and shared my journey with pregnancy for the past four years, my mission became to help even one person not feel so alone in this vulnerable time. Now that I’ve felt some concrete results of the past several of real work on my health – I’ve compiled a large list of things I do to manage my illness, and I will be writing about this in a book due out early next year, Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue & Insomnia 

 

It’s very exciting, I’m so glad to be able to share this journey with you.

I hope you have a restful and lovely Christmas holiday period and a happy New Year.

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Low Dose Naltrexone (LDN), Fibromyalgia & Me

Low Dose Naltrexone (LDN)Low dose naltrexone came on my radar last year and after consuming all of the research and anecdotal evidence about its impact on Fibromyalgia, I earmarked it for my major experiment post-baby (I had baby W last December).

Donna Gregory Birch, a well-known Fibromyalgia writer who explains how LDN works: “in low doses (typically 1-4.5 mg), naltrexone enhances the body’s immune system by boosting the production of endorphins, which in turn promotes healing and lessens inflammation.

Research has been showing promising results. Dr Jared Younger started with a tiny study and found positive results, approximately 65% of patients experienced clinically significant results. He’s doing a bigger study this year.

As a member of an active group about what works for Fibromyalgia and two groups about low dose naltrexone on Facebook, I have seen many testimonies from people with Fibromyalgia experiencing changes due to LDN ranging from mildly beneficial to miraculous. There are also those for whom it does not work or they do not try it for long enough – this is not a quick fix for most.

Further information on how LDN works is well explained in this article, which includes many links to research.

If I could experience a 30% (this is considered clinically significant and therefore as success) decrease in pain and fatigue, my life would change! I could be a mama, a wife, do my work and have some form of a life outside that and not pay with such significant levels of pain, fatigue and other side effects of the Fibromyalgia.

I can only share research and what works or doesn’t work for me. We are all unique and react differently. If you’re interested in LDN then read the research/information and then discuss it with your doctor.

My updates

Low Dose Naltrexone: An Experiment
Low Dose Naltrexone: Update 16 Weeks

Now

I have been reluctant to post this update, I was waiting for something solidly quantifiable but in lieu of that I’ll give you my anecdotal evidence that it is working.

Around 8 months ago I began taking low dose naltrexone and have slowly titrated up to a dose of 4 milligrams. It took me about six months to get to 4 milligrams as previously my body couldn’t cope with that level, I experienced vivid dreams and flare ups of ulcers and cold sores each time I tried to titrate up too fast. I may try 4.5 milligrams later on.

 

For now the effects that I have noticed are:

slightly more stamina
slightly better sleep
slightly less fatigue and
slightly less neck pain – from an average (which changes over a day as well as the week) of 4-7/10 down to about 3-5/10

Anyone who has been following my blog for a while would know that my neck is the area I struggle with the most. With that a little more in check, the fatigue is a close second.

I don’t think my functionality has increased however the quality of my life while performing all that I do has increased. When I do overdo it or have a bad night’s sleep the pain will increase. The heatpack is still my best friend, the computer is still my neck’s nemesis and I can’t hold it for too long in one position – but it’s better than before.

I still have hope that as we edge toward the one year anniversary that I’ll experience more miraculous effects. For now it is definitely worth the $30 a month I pay for the perscription.

This combined with meditation and gentle exercise, paying attention to what I eat and trying to limit stress have been the best things I could do. I hope that when I start working I will be able to maintain half-time hours and not return too much closer to the previous pain levels.

I’d love to hear your experiences with LDN. I’ll write an update when we get closer to a year.


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Graphic Printable Pain Relief with TemplatesLow Dose Naltrexone is one of many ways that I manage pain. This printable contains the chapter of the same name from my book along with some templates for making your own plans. I created this series for those of us who are not able to consume an entire book right now, or who want to work on one thing at a time.

Low Dose Naltrexone: Update 16 Weeks

My major experiment post- baby is Low Dose Naltrexone (LDN), you can read about the beginning of my experiment here.

Varying information will agree on anything between 8 weeks and one year to experience the full effects of LDN. And a dose of between 3 and 4.5mg depending on the illness.

At 15 weeks into the experiment, after six months of sleep deprivation from the baby on a grand scale (read: wake ups of between 2-10 times a night), I had a flare up. My neck was so sore I was extremely nauseas and had a severe headache for days. The doctor I saw told me it was my C3 and C4 vertebra that were causing me trouble. The pain was actually spasms. He suggested a muscle relaxant and slow release Brufen.

Feeling like I was taking a lot of pills, I skipped a dose of LDN for a night. A lot of people note needing to skip a night occasionally to clear the receptors as a way to increase effectiveness. There were no changes noted.

Two nights later I went on my first date with my husband since the baby. We had a glass of wine. I decided I’d better not take the LDN (full dose Naltrexone is for alcohol and drug withdrawal, it can cause vomiting when mixed).

The next day I felt like I’d been hit by a truck. The fatigue sky rocketed. I was at 6-7/10 levels, hardly functioning, needed two rests and craved sugar like mad.

Taking my 3mg dose as usual that night I went to sleep hoping to feel better when I woke.

I did feel a bit better! The fatigue was about 3/10 and the filmy fog on my brain had descended a level or two. My neck came down a point, that could be related or not.

This is proof to me that it’s making a difference. At 3-3.5mg LDN is helping my fatigue.

I patiently continue for my maximum benefit. One woman in an LDN group told me of feeling progressively better over a year to approximately 90% function at one year! It gives me such hope. So I shall continue on for my one year experiment.

Low Dose Naltrexone: An Experiment

There are three little letters that are causing a craze in the world of Fibromyalgia at the moment – LDN (low dose naltrexone). This is the last (for now) major experiment I can engage in.

Research has been showing promising results. Dr Jared Younger started with a tiny study and found positive results, approximately 65% of patients included experienced clinically significant results. He’s doing a bigger study this year.

How LDN works is well explained in this article, which includes many links to research.

It is meant to help with so many issues, including Fibromyalgia, chronic fatigue syndrome, gastrointestinal troubles and more.

If I could experience a 30% (this is considered clinically significant and therefore as success) decrease in pain and fatigue, my life would change! I could be a mama, a wife, do my work and have some form of a life outside that and not pay with such significant levels of pain, fatigue and other side effects of the Fibromyalgia.

I can only share research and what works or doesn’t work for me. We are all unique and react differently. If you’re interested in LDN then read the research/information and then discuss it with your doctor.

Key things I learnt:

  • It works best for me when taken at 9 (not earlier).
  • My main side effect was vivid, crazy dreams.
  • Titrating up 0.5mg at a time with four day gaps between increases, until 2.5mg when it was beneficial to wait a week or more.

I’ll update on this experiment when I’m closer to the four month mark – this is when most people I’ve read about in the LDN groups on Facebook find it shows the best effects.

Have you tried LDN? Any success?