Tips to Manage Debilitating Headaches

Many of us experience the undelightful headaches that come with chronic widespread pain.

My migraines can last up to 3 days. They are caused either by tension in my shoulder/neck muscles, causing them to become as hard as rock, or by my hormonal cycle (PMS). 

I’ve tried taking Maxalt wafers but they din’d do a thing, so I take strong painkillers (Mersyndol) instead. Mersyndol makes the pain bearable, although I do become dizzy and lethargic from the pills. 

A heated pillow around my shoulders eases some of the muscle tension, and I find that rubbing lavender essential oil on the temples and at the base of my neck is very soothing.

How to Ensure that Fibromyalgia is Not Under Treated

First, the successful management of FMS requires a multidisciplinary approach; in my case this involves healthcare practitioners such as GP, Rheumatologist, Physio, Psychologist, Massage therapist, Exercise physiologist, Naturopath... 

For this reason, it's essential to me, that I successfully establish a good relationship with each specialist.

This means that the rapport needs to be based on trust and clear, two-way communication. 

Secondly, if feel someone isn't on the same page as me, or that I'm not getting the best treatment available, I have no qualms seeking out a new specialist. 

After all: it is my body, my time and my hard-earned cash that are being invested here!!!

A Word About Hugging

At first, in the early years before I knew I had Fibromyalgia, whenever my husband gave me a passionate hug, I'd retreat in agony and anger. 

How could he be such a rogue - didn't he know I was as delicate as a flower? 

Only later did I realise it was not him but me; I was over sentivie! 

The man has the patience of a saint...

How Come I Don't Have It?

Someone at work once asked me what causes Fibromyalgia. I said the exact cause remained unknown; however there were a number of factors that could trigger the syndrome such as viral infections or trauma.

On hearing this, my colleague scoffed and said: “Well if Fibromyalgia is caused by trauma, how come I don’t have it?”

With all due respect for my colleague, who narrowly escaped the 2009 Victorian bushfires only to watch his newly constructed house burn to the ground, I was shocked by this lack of empathy.
This person knows nothing about me, yet I felt I was being judged; what he was really saying was that he had suffered beyond measure and that my suffering would never come close to his. For this reason, I had no excuse for feeling unwell.

When things go wrong in life one can easily become a victim of self-pity; nonetheless, measuring one’s suffering against that of another is in bad taste.

This is not a competition; there are no prises for being the one who has endured the most. And how does one measure trauma anyway?

We must all carry our own burdens. So let’s just get on with it.

Advice on Getting Your Family to Accept You Have Fibromyalgia

Fortunately, my husband is very empathetic and supportive in practical ways. He knows I do the best I can on a daily basis. Having said that, we've been dealing with FMS for many years and at first, it was not obvious to either of us what was really going on and how our lives were changing.
To begin with, I was the one who needed to understand mthe condition and learn how to clearly communicate my needs and feelings.
Instead of pushing my husband away, I had to learn to include him in the FMS management process, and now, we're both on board.
My extended family don't understand, and frankly I don't care. I'm not going to waste any energy trying to convert anyone.
I deal with it by simply asserting my needs and boundaries as required (e.g. no I will not have another glass of wine because it'll give me heartburn - or - I need to go home now because I'm quite fatigued).
I just leave it at that.

What is needed is a personalized approach to treating Fibromyalgia

The challenge with FMS is not only that each individual patient is different but also the suite of symptoms themselves continuously change, with pain, fatigue, IBS, fogginess, hypersensitivity etc... being more prominent at one time of another. 

As well FMS causes unpredictable reactions to medication that can obfuscate an accurate diagnosis. The same is true when a medication that had been reliable for some time, suddenly stops working and new side effects appear, which can be mistaken for a flare up. 

This means that each individual case is not only unique, but also extremely complex; something that a physician must always keep in mind when treating a patient affected by FMS.

MEDICATION

One of the drugs that the rheumatologist prescribed to me is Mandopar, which I take it against RLS. It acts on the nervous system and is usually prescribed to patients with Parkinson’s.

Another prescription I take at present is Cymbalta, which is commonly prescribed for FMS patients. It’s an antidepressant that has been found to help manage symptoms in FMS patients if taken in high doses (90mg). After a 9-month period of trial and error, monitored by my rheumatologist, I am now alternating 30/60 mg daily. This dosage seems satisfactory for now, given that I develop severe side-effects from any medication prescribed in high dosages, and taking only 30 mg proved ineffective.

In recent years, I have tried a number of different prescriptions such as Amytriptline and Luvox; all of which have caused more harm than benefits (once I was in such a daze, I stepped off the sidewalk and onto the road, in front of moving traffic).

In addition to the prescribed medication, I supplement my diet with daily doses of Vitamin B complex, Vitamin D, Magnesium and Iron. Through observation I have established that these supplements assist by boosting the immune system, improving sleep, reducing muscle spasms, managing fatigue and counteracting the negative stress. Although they are by no means a silver bullet against Fibromyalgia, these supplements constitute the foundation blocks of my FMS management plan and keep my condition from getting worse.

UPON WAKING

I wake up any time between 4.00 am and 7.00 am, depending on what kind of night I’ve had. The one thing that remains consistent on a daily basis, is that night after night, since my late thirties I’ve woken up feeling unrefreshed. Instead of jumping out of bed ready to seize each new day, I wake up feeling defeated – my head is sore, my lower back hurts, I feel groggy and lethargic.

It is not uncommon that I have trouble walking in a straight line.

Most days I wake up feeling as if I’ve been hit by a truck. Or I feel like someone had pulled all my limbs apart and reassembled then the wrong-way round.

Mornings are the worst.

It takes me hours to get it together. The first thing I do is wash my face and pull my hair into a ponytail. Then I change into my tracksuit and shuffle into the kitchen to make coffee. It’s not until I’ve drank my second cup of coffee that I’m able to plan my day’s work and get ready to face the world.

SLEEPING

On average, I sleep 6.30-7 hours and have done so for as long as I can remember; however, the quality of my sleep is sub standard. There are many reasons why a good night’s sleep is elusive.

Fibromyalgia patients are often described as the princess in the tale of The Princess and the Pea and it so happens that I sleep on two mattresses. One stacked on top of the other, the bottom mattress is the King size latex mattress I share with my husband, on top of this, I have added a single memory foam mattress. The memory foam helps to pad my body from the painful pressure I experience against the tender trigger points in my muscles when I lie in bed. On nights when I’m particularly sore, the pain compromises any chances of a good night’s sleep.

Typically, I wake about 4-6 times throughout the night due to some kind of discomfort, usually in my neck, lower back or shoulders, and need to change position and rearrange the pillows around me so that they provide the right kind of support. I also get up 3-4 times each night to use the bathroom.

At least once every few weeks, I experience extreme cases of hyperhydrosis that can last several nights in a row. On those occasions, I need to get out of bed to change my bedclothes – sometimes this happens up to 2-3 times in one night and it’s not uncommon that I need to move into the guest room because my sheets and pillows are soaked in sweat.

Whenever I wake up during the night, I’m parched and my mouth and throat are extremely dry. I experience the urge to gulp down the glass of water on my nightstand but every sip I take will make me go to the bathroom as many times for the rest of the night.  

It is not uncommon that during a flare up I’m unable to get more than a few hours’ sleep. On those nights, the widespread pain in my muscles not only compromises my ability to sleep, but the stiffness in my muscles also causes uncontrollable twitches in my arms and legs. During such nights, I must resign myself to having to constantly move and re-adjust my sleeping position and get no rest at all. 

FALLING ASLEEP

Most of my life I’ve had no trouble falling asleep. By the end of the day, I just crash. More difficult for me, is the ability to sleep through the night and awake the following morning having had 7-8 hours of uninterrupted sleep. In my experience such wonderful, restorative sleep only occurs 1-2 a year!

I usually go to bed early, between 9.30 and 10.30 pm.

Often, by the end of the day, I am so exhausted that I fall asleep wile watching TV. My husband then ensures I transfer from the couch to the bed because he knows that sleeping on the couch will only exacerbate the pain in various parts of my body.  

Once I’m tucked into bed, with a glass of water on my nightstand and the window open for plenty of fresh air (I get terrible headaches without access to fresh air), if I’m very tired, I will turn off the light and immediately sink into a deep sleep. More commonly, though, I will read in bed for a while before drifting to sleep.

Before falling asleep I must take my medication against restless leg syndrome (RLS). If I forget to take the medication, or fall asleep before taking it, the twitching in my legs – which feels like a series of ongoing mild electrical jolts – will soon make it impossible for me to remain asleep; reminding me that this medication it is key to being able to get any sleep at all.