Posted on Leave a comment

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

 

Posted on Leave a comment

Newly Diagnosed? What I’d Tell Myself

By the time I was diagnosed, I had already been on amitriptyline (a tricyclic antidepressant taken at a lower dose to help with sleep and pain) for a couple of years. A doctor prescribed it for my extreme struggle with sleep.

So I already had a base when I was diagnosed, which was lucky because I got no other information, advice or help when I got the word.

If I could go back in time and help myself out, here’s what I would say:

Research, research, research. Back then, there wasn’t much information around, but there was some. Our own research is what will help us the most. It will eventually lead to the best pain management options which are:

  • Heatpack
  • Hot bath
  • Stretching
  • Yoga
  • Acupuncture by a physiotherapist
  • Panadol and nurofen taken together for a few doses
  • Trigger point release, both for yourself and by a physiotherapist or massage therapist
  • Meditation – a guided meditation called Yoga Nidra will be one of the most amazing things you will find, much too late to benefit from it in the miserable “full time work” years or the early baby days.
  • Nutritional supplementation – high dose magnesium is super important. Along with iron supplementation – the doctor will say it’s “normal” but it’s at the end of a super long range – aim for ferritin levels of 60. Research and experiment. There’s D Ribose, Acetyl L Carnitine, COQ10, B complex, vitamin C and more.
  • Keep walking, one good thing you did was keep moving. Just go a little more easy, it’ll reduce the tightness in the muscles. Pilates and yoga are king.
Some other key things that help:
  • Learning to rest.
  • Prioritise yourself.
  • Believe in yourself, sometimes you’ll be the only one and that’s OK.
  • Don’t let yourself fall down the rabbit hole, allow yourself time for grief and then carry on.
  • Always hope for better, it’s attainable.
So this is what I would tell myself. Perhaps it is of some use to those who have been recently diagnosed.

 


sign up to newsletterI created an updated version of this as a free PDF printable in my resources page and it is a chapter in my book Melissa vs Fibromyalgia.