Chronic Migraine and Chronic Fatigue
How both disease and syndrome are connected.
Part 2 of a 3 part series that I’m sharing with you, following last month’s Migraine World Summit event.
I’m in my 7th year of watching the Migraine World Summit. A platform of the world’s top neurologists and headache specialists. I cannot tell you how thankful I am for a resource of this magnitude. Deepening my knowledge and understanding of migraine disease has not only played its part in the wellness I experience today, it has better enabled me to communicate the extent of what I have been living with for the past 2 and a half decades in a way that others can at least grasp and to some extent, comprehend.
It has also meant that I no longer seek the validation of another, be that a medical professional, colleague or friend. I have learnt to be the validation that I seek and am able to validate the horror of my own lived experience, pain and suffering. Much of which I endured in agonising silence. A prolonged level of pain and suffering, because I couldn’t get anyone to validate what I already knew to be true.
For years, I’ve been taking notes, absorbing all that I’ve learnt. Putting together the pieces of the dismantled jigsaw. Using the information, insight and understanding to navigate my way to wellness. Making informed decisions on what changes to make and what support to bring in next.
In many ways, it has blown my mind that I have been able to take what is deemed the world’s most complex neurological disorder and make sense of what is misunderstood by so many. I am no medical professional, I do not give out medical advice (nor do I want to or ever have any interest in). I do, however, want to make a difference to the way we see and view health and show others what’s possible in a world where so many limitations are placed upon us.
I have long since wanted to share with you all the juicy details of topics I’ve devoured on the Migraine World Summit to date. Gifting insight and education alongside aspects of my own journey and experience for you to muse over. In a way that I hope inspires and leaves you better learn to advocate for yourself.
Because I’ve mostly been somewhere in the midst of attack when this annual event has aired, I have had to instil boundaries. Generally, I have only ever been able to watch 1-2 of the 4 topics each day around the parameter of the 24-hour access that is available. From the off, I discounted all topics that centred around treatment and medication. I appreciate this is a radical approach, but it is one that has served me nonetheless.
This time round I have not been anywhere near attack, however, my body and the energy I have is guiding me to “take it slow. Go gently”. Additionally, I’ve come to find myself being triggered by some topics in recent years and so this year I’ve consciously stayed away from a few I might have previously watched to avoid being triggered. Factors that have resulted in me watching the least amount of topics I have to date.
The two I wanted to watch the most were The Nervous System, Trauma and Migraine along with How Chronic Migraine and Chronic Fatigue Syndrome are Connected.
Though I no longer consider myself to be living with Chronic Fatigue, I am deeply interested in the role this plays because it was a big part of my chronic illness - even long after I was signed off by the NHS and left without any medical help or support.
My experience of sharing with my neurologist about how I’d broken the chronic pain cycle and was now left living with chronic fatigue was “I’m not surprised with the amount of medication you’re taking”.
There was little to no interest in how I’d broken the chronic pain cycle - which shocks me because surely we can share this with other chronically ill patients? Learn so much from this type of breakthrough? Nor was there any interest in how I was left chronically fatigued. I was signed off there and then.
I look back now and see it as a blessing in disguise because it meant I had to find my own way and my path to wellness wasn’t clouded with controlling, managing, fixing, medicating, treating or curing my way out of anything. Instead, I learnt to let my body lead the way and as lonely as it was, I am grateful for this privilege.
Anyway, back to the chronic fatigue. What is CFS?
All information that follows is taken from James Baraniuk, MD, Professor of George Town University on his interview aired on the Migraine World Summit on Tuesday 12th March 20024.
CFS is a severe and disabling disorder of which fatigue is a predominant feature. Brain fog, cognitive issues, extreme exhaustion, poor sleep/sleep disturbances and orthostatic problems - such as dizziness, light-headedness and fast heart rate- accompany it.
Diagnosis can be complicated. There is no FDA approved medication or therapy.
It is underdiagnosed. Only 1/3 are thought to be diagnosed with the remainder having symptoms and no diagnosis.
What causes ME/CFS?
Unlike with migraine disease, there is poor evidence for genetics playing a part.
Virus infections and other stressors have been linked. There are ongoing studies that hope to provide better answers in the next couple of years.
The ratio from women to men living with ME/CFS is 4:1.
Because it happens to people in their 30’s and 40’s, which covers menopausal years in women, it could be linked to the changes within their hormones.
Women tend to be more tender to pressure than men. Brainstem sensitisation plays a role. The brainstem (is part of your central nervous system) and regulates pain messages and other body messages.
Where triggers are reduced – for example severe headaches – it will help with the overall situation of ME/CFS.
2/3 of patients meet the criteria for having both chronic migraine and chronic fatigue. Mostly migraine without aura. Females more predisposed to it than males.
There is a new criteria for fibromyalgia consisting chronic widespread pain AND fatigue plus sleep disturbances. If you meet this criteria it is recommended to speak with a rheumatologist or your primary physician.
Is taking an anti-inflammatory approach, such as following an anti-inflammatory diet encouraged?
It is a reasonable thing to say but difficult to do.
What lifestyle changes do you recommend?
Pace yourself.
You have to know when too much is too much.
Plan your day by asking yourself “what are the important things I have to do today?”
Can you rest, recuperate, hydrate, be at your best and then go out and do?
Prepare yourself before the stressor. Then come back, come home and plan to relax.
When you have a good day and you feel like you can do anything and you try to do everything. What happens is you rebound. You have the PEM (post exertional malaise) and then boom! You are worse than you were before. You have to pace yourself. Don’t try to do too much. Pacing yourself is very very important.
Pacing manoeuvres can be difficult to institute by yourself so it is often helpful to get the help of a team such as an Occupational Therapist, psychotherapy and CBT/brain retraining.
Many live with a lot of guilt associated with rest
Anger, irritability and anxiety over their situation as well as worry over rebound.
Be vocal.
Tell people you have a real disease and to cut you some slack.
This is a painful disease.
Prioritise your problems and work on one problem at a time. It might take a long time, have manageable expectations.
Links/Research
Help to educate your doctor.
Medical schools are not teaching about these diseases. The continuing medical education may have to come from the patient.
Back to my story
As well as living with chronic fatigue and migraine disease, I also believe I was living with fibromyalgia which was briefly touched upon in this interview.
I took an anti-inflammatory approach to the disabled state I found myself in back in 2018. Reducing inflammation in my body became my first port of call.
Ways in which I did this included:
Listening to what my body was trying to tell me.
Paying attention to what I knew to be true all along. (Stress was killing me. I needed to make changes. It was going to take a long time)
Pledging to reduce as much stress and pressure from myself as I could.
Reminding myself that “I matter. My Health Matters”. For the avoidance of doubt, you matter too. Your health matters.
Identifying needs. (Support + to keep a roof over my head)
Prioritising my health. Above EVERYthing.
Adopting an anti-inflammatory way of eating.
Retraining to offer a mobile beauty service so that I could work around illness (to generate an income and keep a roof over my head - thereby meeting one of my needs and enabling me to keep prioritising my health).
Asking for help and support. When I was told by my neurologist “there is none” it was brutal. But I knew where I stood and it meant I could use my limited energy and resource exploring other avenues (like researching, reading books such as The Migraine Miracle and shortly after stumbling upon the Migraine World Summit).
Starting where I was and working with what I had/knew about the disease.
These are just a few things off the top of my head that led to me breaking the chronic pain cycle (I often say within a year but it took me about 6 months).
I went on to rebalance my hormones (self-taught). I read the recommended book “Balance Your Hormones Balance Your Life” which, although a big read, I found to compliment the path I was already on. It took 3 years to start to feel any level or sense of balance in my life. Shortly after, I went on to feel a sense of regulation in my nervous system, as well as make it 14 weeks pain free.
Calling in the Support
It took me the best part of a year to find the support I needed, which for me was in the form of yoga and a couple of months in, deeply healing bodywork. I kept receiving the message “yoga for migraine, yoga for tension, yoga for stress, yoga, yoga, yoga”. I worked solely with one person for a long time David Venus (Yoga Teacher/Bodywork Therapist and writer here on Substack) for a long time and we still meet online every Wednesday (5 years in).
Alongside this, I went on to build a community of space holders around me (people who can hold space for all of me without judgement, time limitations or advice giving/telling me what to do).
Bodywork as a monthly treatment/therapy went on to open doors to healing that I never knew existed, releasing trauma and emotions stored in my body and reducing the extreme tension and stress (in head, neck, shoulders, jaw and all the way down my body).
Share your story. What is your experience of chronic fatigue? How do you advocate for and communicate your needs?
Part 1 of this series: The Nervous System, Trauma and Migraine
If you’d like to read my theory around why I feel chronic illness is so prevalent in women you can read it here.
At the time of this post being scheduled to go out, I’ll be away overseas. I may not respond until my return. However, I am eager to see how this one lands, what you make of this research and how useful you find this kind of information and insight. Would you like to see more?
Thanks for the repost, Amber, I missed this one last year. For me there’s definitely a link between migraine and me/cfs. For the first six months of being flattened (and after the fever left me), I barely had any migraine at all! Unfortunately I now had whole body pain. But thankfully not both.
As I do more, I have more migraines yet the evidence is pretty good that people who walk a reasonable amount have fewer headaches, so I had to prioritise going for walks above ‘ADLs’ (cooking, cleaning, personal hygiene). Those walks were 250m at the start, because any activity caused PEM, but 3 years later I reliably average 5-6k steps per day. Believing my body is an ongoing project, but the more I believe myself and act accordingly, the better I do.
I think we should chat sometime, if you’re up for it. I’ve been in a fog of medical confusion this past year