I am a patient advocate who has lived with pain, fatigue and sleep symptoms since I was very young. Around 14 years old. Around 12 years ago I realised I was getting worse and worse and my doctor had nothing for me. So I set out on a journey to get as well as possible.
This post is a compilation of what I wish medical professionals knew about how to treat patients with fibromyalgia.
If you are a medical professional reading this, thank you. Thank you for your curiosity and your wish to learn.
Your attitude makes a huge difference
Your attitude makes the difference. For the patient taking their quality of life seriously, they need to know that they can impact their quality of life and there are many treatments options. They also need to know that their condition is real and debilitating, it’s not all in their heads. Ideally they will learn they are not alone. Research shows that physician empathy results in better outcomes for chronic pain patients (source).
It took more than a decade for me to be diagnosed. Longer than that to receive any validation, compassion or understanding. And longer still, to receive treatments that made any difference.
Also if a patient brings a family member – your attitude could be make or break the support and understanding they get at home.
Asking the right questions
An initial question when presented with a patient with fibromyalgia: Are you sure it’s fibromyalgia? Are all symptoms attributable to fibromyalgia or are there other conditions that need treatment too? At it’s heart fibromyalgia includes the nervous system, other conditions are going to impact the nervous system and make it harder to treat.
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The only “manual” to treat patients with fibromyalgia
Consider reading Dr Ginevra Liptan’s book The FibroManual. It’s a book written by a doctor with fibromyalgia herself. It lays it all out, everything she’s learnt from research and personal experience.
First sleep
Sleep is vital – for metabolic health, brain health, pain, everything. Fibromyalgia is a deep sleep disorder. We can’t get better until we sleep properly.
Listen, explore sleep hygiene. Add pain management to the normal sleep hygiene list. But medication will likely be needed – quetiapine (25mg) helps me enormously (The FibroManual book recommended above) has a great chapter on this).
Pain
Intramuscular pressure in fibromyalgia is three times higher than controls. The muscles don’t know how to relax. This makes them prone to injury, hurt and exhausted.
Treat other causes of pain (structural, hypermobility etc.). Treat pain to support nervous system and improve sleep.
Consider
- Low dose Naltrexone
- Physical therapies such as chiropractic
- Nutrient deficiencies
- Nutritional intolerances
Encourage them to look at
- MBSR or other relaxation training
- Natural sunlight
- Gentle movement (starting low and slow, working around problem areas)
- Reduce processed food
- Increase hydration
If we could work on sleep and pain management as early as possible, we would make such an impact on a patient’s quality of life. We must consider quality of life over everything else. The historical focus on functionality over symptom levels has to be challenged. I was functional, working full time, but miserable and getting worse and worse. I was constantly sick, slept terribly, cognition was getting worse. You can only fight your body for so long.
Fibromyalgia is a message that things are not right and we need to listen.
It’s not an easy journey to treat patients with fibromyalgia. But research shows that earlier diagnosis and treatment helps. See this study.
Thank you. For reading this article. For caring. You will change your patients’ lives.
