Fibromyalgia Headaches

Many people with fibro know all too well the intense pain from fibromyalgia headaches and/or migraines.

The more one gets to know fibromyalgia, the more one understands the various and multiple parts of the body that are affected.

This is not your average head “ache” because of the unique qualities within fibromyalgia and the TRP’s (trigger points) that are commonly associated with head pain.

If you have fibromyalgia headaches or migraines, you know pain.

Having vascular type headaches since a young age, now almost 56 , I know the feeling of blood vessel swelling and throbbing ,that can easily lead to debilitating symptoms. 

In this article, I am going to detail the things I have done over four decades of living with chronic migraine, so please read until the end if you or anyone you know suffers with chronic migraine, inside or outside of fibromyalgia. 

Although there are multiple causes for head pain, we know that many common factors must be addressed in order to lessen the severity and frequency of fibromyalgia headaches.

Are the TRP’s (trigger points) around the head, neck and scapula area actually the cause of the head pain OR is it a stressor, perpetuating factor or environmental exposure that initiates the pain?

Seasonal allergies can exacerbate headaches and increase pain within the entire fibro body. I also experience more head pain when it rains, and I will tell you that it can be very intense, triggering both trigger points, and the olfactory nerve, around CN1.

This has the potential to not only increase pain around the face and head, but in my case, I can smell and react to everything more intensely !! 

When TRP’s (trigger points) are involved with head pain, it often “feels” more structural and some people may have a difficult time associating their environment as an instigator of pain.

Yet due to the fibro body’s sensitivity to toxins and stimulants, this can easily start a cascade of symptoms and resulting pain.

(Severe fibromyalgia headaches interfere with quality of life even more so because of the effect on the brain, eyes, nerves and ability to think clearly)

When headache pain increases, you might also feel an increase in your pulse rate and even heart palpitations. This is not uncommon due to the direct effect on the nervous system. I've had this since a young age, I certainly get it. 

In the U.S. alone, 78% of women (68% of men) suffer from debilitating headaches, and migraines affect about 15% of the population, according to Dr. Ty Thomas, (National Centers for Pain Management & Research).

Not to mention that brain fog (otherwise known as fibro fog in relation to fibromyalgia headaches) is exacerbated when headaches occur on a regular basis. Click on this link to learn more about fibro-fog.

Occipital Neuralgia and Chronic Migraines 

If you are like me, you might also experience Occipital Pain. The Occipital Points are in the lower back of the head, and you can read more here or bookmark this article for later. Occipital Pain in Chronic Migraines. 

Seasonal headaches

There are seasons of the year that tend to bring on more headaches due to allergies, ragweed, and temperature changes.

Spring and Fall are two seasons where symptoms can tend to escalate. Allergies can activate symptoms of fibromyalgia, just like toxins in any form exacerbate fibro symptoms. 

Sometimes it may be necessary to limit outdoor activities during high allergy seasons, or wear a face mask. I often recommend the company "I Can Breathe" for a protective face mask from toxins and allergens. 

Another product that I often find helpful is  the "Hot/Cold Migraine/Sinus/Tension Headache Head Wrap" shown below.

The wrap contains beads which can be heated or cooled and applied to the head. And, guess what? It is so multi-functional that I also use this wrap around my knees.

I actually wear this compression a different way. I wear the ice or heat part on the back of my head which covers the fibromyalgia tender points on the lower back part of the head and then the slight compression is around the forehead which helps to increase blood flow

I prefer to use the beads in a cold state, but, alternating heat and cold is effective as well. 

 Factors in Fibromyalgia Headaches

Any type of chronic headache pain can be debilitating as this is where we think, express, and interact with the world around us.

If you have fibromyalgia and recurring headaches, there's no doubt that you know this kind of pain.

Suffering with chronic migraine myself since the age of 9, now 55, I sure do understand this pain and the additional symptoms that can be brought on by a migraine, including severe nausea, issues with eyes, coordination and cognition and even vomiting when the pain escalates to a most debilitating point.

The trigeminal nerve which travels from the brain to the face can cause inflammation while any disruption within the hypothalamus (in the brain) can affect the blood vessels. Some people find relief using caffeine during a headache, but this can backfire in others due to the constriction of blood vessels. 

What if your headaches are instigated by CFS/ME otherwise known as Myalgic Encephalomyelitis? This kind of headache displays itself with pain around the entire head, face, eyes and can increase swelling around the jaw and parotid glands just under the jaw.

Here, the immune system is involved and these type of headaches can come on quickly and intensely by exposure to environmental toxins such as petro fumes, fragrances, and/or chemicals of any kind.  

Because people with chronic illness tend to be shallow breathers, we must pay attention to our breathing tendencies, as a lack of proper oxygen can bring on and intensify headaches of all kinds.

And again, for those of us with long standing environmental illness or Multiple Chemical Sensitivity, headaches are often brought on by exposures to toxins in the environment, affecting our ability to breathe and relax normally. 

What do we do when we are exposed?

Often times, we find ourselves holding our breath. We are trying to avoid breathing in toxins, but this can easily exacerbate headache pain and tension throughout the body. We need to avoid chemicals or fragrances in our home or work environment. Read more here about migraines and Chemical Sensitivity. 

 Fibro and the Migraineur

What is a migraineur?
Many people with fibro can relate.
A migraineur is a person with a sensitive nervous system, often light sleepers, affected by weather, toxins, odors and bright lights. They are hardworking and attentive to their environment and feelings of others.

They often have tight muscles and disregulated blood vessels. Serotonin levels are also reduced during a migraine yet return to normal when the headache is resolved. This explains how migraines correlate so well with fibromyalgia and symptoms.

The Five Phases Of Migraine

1.The first phase of migraine is called the prodrome. During this phase, lights may begin to appear brighter, change in mental process, fluid retention, irritability, or craving certain foods. These symptoms and more can signal the beginning stage of migraine.

2. The second phase is called the aura. This is where a change in the brain chemistry occurs. This nervous system disruption can last from minutes up to about an hour.

Vision changes can occur or seeing spots in front of the eyes, and weakness in extremities. It has now been found that this is not a constriction in blood vessels as once thought, but a disruption in brain chemistry.

3. The third phase is called the headache phase. This is where the pain and intensity take place. The pain may be pounding or on one side of the head. The nervous system becomes even more sensitive to light and sound.

The muscles in the back of the neck, and upper back become tense and painful and more sensitive to touch. Mobility within the neck and jaw can become limited as well. The severity of this phase can last from 4-72 hours. 

4. The fourth phase is the resolution phase. Often times, migraines will be resolved with sleep, but can also linger for 1-3 days.

Vomiting is common in children who suffer with migraine, and this can sometimes stop or at least lessen the pain. I will say, that in my case, the vomiting did not always lessen the pain. 

5. The last phase of migraine is called the postdrome. This phase usually accompanies headaches that last a longer period of time, and not everyone will experience this phase. Similar to a hangover or the flu, the symptoms here include fatigue, lack of concentration, nausea and muscle tenderness.

Nurtec for Migraines 
(My Nurtec Story)

As I previously mentioned, I have lived with chronic migraines since the age of 9, now 55.

I have never used medications for them because I don't generally tolerate pain meds, and I treat holistically whenever possible. 

My headaches would get so bad, nothing would help, except avoidance of whatever was causing it or using my own methods when possible. 

One day back in 2021, I saw an ad for Nurtec migraine medicine, and I decided that it was worth trying. I contacted my doctor, and he prescribed it for me. 

Little did I know it would be hard to get, at least initially. I had to jump through some hoops to get approval from my insurance company. I was grateful when they approved it so I could try it. 

Many people have not been able to try or obtain Nurtec because of the high price, but I want to bring some encouragement today. You might have to fight for it, but I believe as time goes on it will get easier to obtain. 

First, let me say, Nurtec is not to be used daily. I knew going into it, I was going to reserve this medication for those times when I couldn't control my environmental or triggers, and I needed to function, like while traveling for instance. 

Wait, let me back up here.

The above scenario was assuming that is would actually work! But for some reason, I had high hopes. Was it Khloe Kardashian and her sweet daughter in the commercial? Was it intuition? Faith? I just went with it. 

I picked up the prescription. Never in my life, and I mean never, would I imagine waiting on the next migraine to come so I could try out this medicine! 

It came, I tried it, and it worked! What? It really worked Lisa? Nothing ever worked for your migraines.
I know, and here is how it went down >>>

I took the small dissolve pill. It is so small, I wonder will this really do anything for ME?

It was not instant, but my experience the first time and since then, about one to two hours after taking it, I start to feel the headache lifting.

And this is also important, even though I may not feel it lifting in the first 1-2 hours, it wasn't getting worse in that time, meaning it wasn't elevating to the point of vomiting, vision problems, etc. 

My insurance did pay for about 60% of the first prescription. It was still a high cost of about 45.00 per dose. (and each prescription is just 8 dissolve pills) 

I used up my first 8 pills in about 4 and 1/2 months. You can see, I really spread it out using it only when I could feel a headache wasn't lessening and getting worse. 

When I refilled the prescription, I was elated to find that the price had gone down significantly. It was $26.00 for the same 8 pills that I paid $360.00 for the first time. 

Again, I went with it. No questions asked. I drove out of that pharmacy line like a bat !!

I actually said to my husband a day before going to pick up the second prescription that I had hope in the future that the price would go down, I just didn't expect it that quickly. 

However, the price in the last two years, has gone up, and back down a few times. 

A migraineur will do just about anything to reduce head pain. 

The other silver lining is that I had no side effects. But, I also used sparingly as it is intended.

I hope that brings some encouragement. If you are a person living with chronic migraine, I empathize and sympathize with you.

Pain anywhere is bad, and yet when we have debilitating pain in the area where we think, express ourselves and interact with the world around us, well, that makes it even more challenging. 

Understanding our individual triggers and the phases of migraines can support us in better managing this often debilitating pain. There is always a ‘root’ cause and as a migraine sufferer since a very young age, I certainly know that environment has always been my biggest perpetuating factor.

Toxins in various forms (chemicals, synthetic fragrances, petroleum fumes, etc.) often trigger the fibromyalgia headache or migraine and must be controlled.  

Get family members on board. Keep believing in your greater magnificence. 

I wish you good health and much love !! Thank you for reading....
Lisa.  CT, PT 

Also refer to the pages on Fibromyalgia- Flare and Endocrine Disruptors for additional information and help.

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