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What I’d Start with upon Diagnosis with Fibromyalgia (If I got a Do-Over)

Getting diagnosed with Fibromyalgia and living with the effects of chronic pain, fatigue and insomnia is difficult. This is why I decided to write my journey and everything I do to cope with the symptoms of Fibromyalgia and myofascial pain syndrome in my book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Fatigue and Insomnia.

Author’s Note: This article appeared first on The Mighty.

What I'd start with upon diagnosis

Here’s an excerpt from my book about what I’d do upon diagnosis, if I had a do-over.

When you are first diagnosed with a chronic illness such as Fibromyalgia or Chronic Fatigue Syndrome, your brain has rather a lot to process. If you’re buried too deep in pain and fatigue, the enormity of the challenge may not hit you immediately.

You, like me, may have been diagnosed after a long battle in which you have learnt to push through and assimilate the challenges into your life. Potentially making yourself even worse. Or you may have been struck down, as if by a lightning bolt of pain and fatigue.

Here are a few key things that we need to do when we’re diagnosed, or ready to process:

Research

You are your advocate, medical coordinator, cheerleader and guru. You need to guide your doctor. You need to track your progress. Get a book, or open a digital file and write it up. Keep articles that you come across. Because when you’re ready you need to experiment. Your doctor can only take you so far, if they want to come on this journey with you at all.

My course You vs Fibromyalgia: Arm Yourself with Knowledge is a good start. This is a FREE five lesson eCourse to help you fight Fibromyalgia. Sign up here. This is what I wish had existed when I was diagnosed.

Experiment

There are many types of treatments: medicines, supplements, alternative options, physical therapies and diets. We all have different chemical make ups, different genetics, and different triggers. This means we need to find our lifestyle that gets us as pain free and awake as possible. The complexity of this is huge, especially when you take in the fact that synergies, mixtures of multiple things, may be the solution. Your body may need a mixture of medicines, supplements, physical work and mental work.

Hit Your Lifestyle

You can’t keep going in the same way. That way didn’t work. Try to journal it out or talk it out, or whatever you do to think things through. You need to rebuild your lifestyle. Find what works for you, what your passions are (the non-negotiables of your life) and go from there. I spent a long time dreaming of working slightly less hours so that I could rest more and try to recover – and reducing my work hours was only the beginning of my journey to better wellness.

Find Your People

If there’s no one in real life, find a virtual community. You need to be exposed to new ideas and you need to be able to ask questions. There are many people struggling along with chronic illnesses sharing their journey. Just try to keep it positive. Most people would have brushes with depression/sadness when they’re in daily pain and exhaustion. Having a search through the articles written by other people with chronic illness on places like The Mighty is a good start.


For more information:

This post is available as a PDF printable in my free Resources page.

Free eCourse sign up you vs fibromyalgia

 

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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.

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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?

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Experiment and Hope

I’m trying something new.

I’ve finally visited a naturopath. She’s taken a hair sample and given me some tonics (magnesium, iron and calcium in easily digestible forms) to take while we await the test results.

With the combination of the tonics and avoiding any foods that are concluded as allergens for me in the tests, I should be pain-free. At least, that’s the naturopath’s aim.

I am torn. My hope levels have skyrocketed. I have already imagined not having a stiff, aching neck every day, all day. Not having such an elevated pain response to exercise. Not having such bad period pain. Maybe, not even such a hard time if I were to have another baby.

A reduction in the soul-aching fatigue would be phenomenonal. The eradication of it would be a miracle.

But, hold on! I have to remind myself not to get carried away.

My little heart’s already involved.

So I’m doing my best to help myself along. I’m increasing the good foods, decreasing the bad foods, researching anything else I can do to be well and basically trying to be a health-freak.

I want this.

To be better. Even if I have to accept just an improvement.

The list of things I would do is already composed. I need to get there.

We’ll see how it goes.