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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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?