Headaches are one of the hallmark symptoms of living with Fibromyalgia. Headaches can be debilitating and make everyday life seem almost impossible. But what is a Fibromyalgia headache and is the mystery surrounding them accurate?
In this blog we’ll take a look at the following:
- What is a Fibro headache (and what it is not)
- Why Fibro headaches occur
- Fibromyalgia headaches from medication
- How to get rid of a Fibro headache
- Life after headaches: Recovery stories
It’s no secret that many of our new Fibromyalgia clients, both online and in studio, suffer headaches that disrupt their daily life. By the end of a programme their headaches are either completely gone or reduced so much they’re almost unnoticeable. There is one key part of a programme that all of our Fibromyalgia clients must go through; Understanding what Fibro is, but more importantly, what Fibro is not!
Take a look at the Fibromyalgia recovery stories we regularly post to our page and many will say the same thing: the programme is hard! But not in the way you might think. Let’s take an inside look at how our clients get rid of their headaches and how they get their Fibromyalgia success stories.
What is a Fibro Headache (And What it is Not)
One important thing to realise when it comes to fibromyalgia headaches is that Fibromylagia does not cause headaches, for one simple reason: Fibromyalgia is not a clear-cut pathology.
Fibromylagia is a culturally adopted label that we use to describe a common set of symptoms that appear together. Hence the name Fibromylagia “Syndrome”. A syndrome is a group of symptoms. In my opinion, as a Fibromyalgia specialist, the hardest part of any recovery is objectively looking at our own understanding of Fibro and our circumstances. It is incredibly difficult to change our understanding when there is so much information available that states the contrary. This bad info usually comes from Doctors, Physiotherapists and other reputable healthcare professionals. Throw Google in the mix and the outlook on Fibromyalgia can be a gloomy one.
It is incredibly easy to believe information that is freely available but is not actually correct. For example, have you heard of the following?
- Gold fish have a 3-5 second memory? (Not true!)
- Bulls are angered by the colour Red (Bulls don’t have the colour receptors to see Red)
- The evil queen from Snow White…what does she say to the mirror on the wall? (Go ahead Google it, it ain’t “mirror mirror on the wall”)
Keep in mind that until very recently (1967) women were not allowed to enter Marathons as it was thought their wombs would fall out! It is no different with Fibromyalgia. There is an abundance of really bad info which simply is not correct. The first step of a programme involves breaking down the Fibro label. When you understand what Fibro is, the whole process becomes so much easier. So let’s take a look and prepare for some against the grain advice and support…
Fibromyalgia is a culturally adopted label for a set of symptoms with no known cause. It is usually diagnosed via a process of elimination. Once all of the “red flag” nasties have been ruled out, a diagnosis of Fibromyalgia is given and we’re put in a box and forgotten about. Been there, done it, got the T-shirt! We are then left to fumble in the dark without any understanding of what’s happening or hope of getting better.
Many of our previous and current clients experience the same thing. So bearing in mind Fibromyalgia has no pathological cause (no blood markers, no imaging findings, no sample findings, no diet findings.) Can there be headaches caused by Fibro?
Can There Be Such a Thing as a Fibromyalgia Headache?
The National Institute of Clinical Excellence (NICE) and the International Classification of Headache Disorders (ICHD) do not recognise Fibro as a cause of headaches.
And this is where most people struggle. The headaches and pain are very real. I’ve personally had pain dismissed as “all in your head” with the age-old advice of “try some meditation or Yoga.” If it was that easy none of us would need help. If we can change our understanding of Fibromyalgia from a disease to a syndrome we stand a much better chance of recovery.
So what is a syndrome? Well, it’s a common set of symptoms that group together with no known cause. Some common Fibromyalgia symptoms are:
- Bowel & Bladder changes
- Sleep disturbance
- Cognitive dysfunction (brain fog)
If you can change your outlook on Fibro, then recovery is possible. If not, people enter a never ending cycle of trying all kinds of different treatments then accepting life as it is. At this point, things only get worse. Please don’t be one of those people!
A few paragraphs back I mentioned NICE & ICHD do not recognise Fibromyalgia as a cause of headaches. Having worked with the Fibromyalgia community for several years now, I’ve noticed there are several types of headaches that are prevalent and also recognised by the ICHD. These are:
- Tension-Type Headaches (TTH)
- Medication Headache (Including Withdrawal)
- Migraine With or Without Aura
- Dehydration Headache
A very common scenario we see in studio or online is people suffering from one of the above headaches which have been passed off as a “Fibro headache.” This can pose a lot of problems, the main one being you will not receive the proper care for your headaches if they are simply passed off as being caused by Fibromyalgia.
So Why Are We So Prone to Headaches When We Have Fibromyalgia?
It comes as no surprise that if you are in pain, stressed out, and unable to partake in the life you want to live, headaches are most likely going to occur. Let’s look at the cold hard facts of the common headaches we see frequently.
Tension-Type Headaches and Fibromyalgia
A Tension-type headache is a diagnosis of exclusion, a catch-all term used to describe a headache that isn’t a migraine. It is a pretty vague term. If you are reading this then you likely know what comes with a tension-type headache (TTH):
- Dull, aching head pain
- The sensation of tightness or pressure across the forehead or on the sides and back of the head
- Tenderness in the scalp, neck and shoulder muscles
Whilst the etiology of TTH is thought to be multifactorial, involving genetic and environmental factors, the most common theory supports a heightened sensitivity to pain in people who have tension-type headaches. Increased muscle tenderness, a common symptom of tension-type headaches, may result from a sensitised pain system. Hmmm…. sounds a lot like the people diagnosed with Fibromyalgia, doesn’t it? When diagnosed with Fibro, moving can be an absolute nightmare. The threat of a flare-up can all but make us a hermit. This lack of movement and a sensitised system may be a large contributing factor in causing tension-type headaches. We know that stress and anxiety naturally cause us to tighten up which throws further fuel on the fire.
Fibromyalgia Headaches and Medication
Fibromyalgia headaches can also come with a cocktail of meds. GABA drugs, amitriptyline drugs and opioids like Tramadol amongst others like Codeine/Morphine. Starting a course of these drugs can cause horrific headaches and cognitive impairment (brain fog). Do you feel like a zombie after taking Tramadol or Pregabalin? I certainly did and I was still in pain! Getting off meds is just as bad.
Probably the most guilty of this are the GABA drugs; Pregabalin and Gabapentin. A little known fact about these drugs which shocks a lot of our clients (it may shock you too!) is they are primarily used an anti-epileptic drug. In other words, they dampen activity in the brain. Check out the NHS & BNF descriptions of Pregabalin and see for yourself its uses and side effects (Spoiler; It’s headaches amongst other nasty stuff) No wonder we feel like a zombie!
The secondary use is for nerve pain. So if you’re an epileptic with nerve pain, this is the drug for you. If you suffer from chronic pain, this drug is may contribute to the problems of brain fog and headaches. When our clients lay their Foundations and start to see results, we then start to have them dose down their meds with their doctor when they realise it’s doing them no favours.
Migraines and Fibromyalgia
Migraines are another common finding with Fibro. Some people have true migraines, others have a lacklustre diagnosis after seeing a GP several times with previous headaches. You may then be prescribed a drug like Amitriptyline or Sumotriptan and left to it. If these drugs help your headaches, then it is likely that you are suffering from a true migraine. However, if they don’t, they may be contributing further to your headaches. These drugs are also guilty of causing incredible jaw stiffness, which can further add to the tension-type headache described earlier. Diagnosing migraines is a difficult business.
Any good Doctor will give you a headache diary and compare it to the diagnostic criteria to come to the conclusion of a migraine. If you were given a migraine diagnosis after presenting with a headache, I’d consider reconsidering! It may be a simple fix and save you years of angst.
Another guilty party when deciphering the headache puzzle is the dehydration headache. It seems so simple and is often the first call to action when addressing headaches….How much water do you drink? Not orange juice, tea, coffee or pop, but clear tap or bottled water? For many, the answer will be incredibly low. Sometimes our brain needs to bathe in the liquid gold which is water. Ever had a hangover and a stinking headache? It takes time for it to go away and plenty of fluids.
Our NHS suggests we drink 6-8 glasses per day. That’s often a big ask for even the most active person. But I would trade off not having a headache for needing to pee any day of the week.
When we look at the paragraphs above one thing is clear: Fibromyalgia does not cause headaches: because it’s a word and a label.
People experience headaches for a variety of reasons. The reason headaches are so prevalent in those with Fibromyalgia is likely from the various biological, psychological and social stresses that come with being in pain. From a career of helping people with Fibromyalgia, I can tell you that headaches do not go until all of these stressors are either eliminated or mediated.
It can be hard to follow the advice that is against the grain. Our clients are always tedious when it comes to headaches as they can be one of the worst experiences of chronic pain. It’s not easy to read and accept that Fibro is a culturally adopted label. You may have spent years being told it is an incurable disease and this is life now.
If you trust me on anything it should be this; Fibromyalgia doesn’t need to be your life. We post recovery stories on a regular basis of people just like you. People with debilitating pain, headaches and mobility problems. The only difference between you and them is the context in which chronic pain is viewed. For those that realise recovery is possible, it’s just around the corner.
We’re on a personal mission to lift the veil on Fibromyalgia and Fibromyalgia treatment. What we do has been shrouded in mystery for years but now we’re finally being recognised as the cultural authority on Fibromyalgia treatment and we want to help as many people as possible.
We’ve all been there and taking the plunge is scary. But it’s worth it.
—The Fibro Guy Team—