Living with Fibro (Fibromyalgia)

I’m often asked to describe some aspect of fibro (fibromyalgia), my chronic pain, chronic illness, etc. It’s not easy. There are so many pieces that all interconnect. As soon as I mention one thing, something else comes up… because one always affects the other, and another and another…

I recently went through my worst flareup. I’m beginning to feel like I’m coming out ahead of it now, but there’s never any total relief. My normal state is always in pain, just a lesser degree. I actually do not recall a day without pain anymore. It’s been more than thirteen years of dealing with this, day in and day out. I try not to get into it much, but you can rest assured that if I’m talking about it, it’s worse than “normal”.

What is fibro?

Fibromyalgia is a condition that affects the soft tissue, most specifically the fascia (connective tissue that attaches/covers muscles). The latest theory is something to do with nerves over-firing and not shutting off. The sensitivity to pain being much more active than pre-fibromyalgia. There may be a neurological root to this syndrome, however it is not psychological.

Fibro is so much more than that though. There are 18 tender points throughout the body that seem to be overactive at different times. During this last flareup, that lasted a few months, every single tender point was in excruciating pain. My “normal” usual involves about 6-8.

Fibro (fibromyalgia) & Chronic Pain Center

Symptoms of fibromyalgia

Living with fibromyalgia

Additionally, my muscles are always on high alert. My neck and shoulders are so tight at all times that knots form up and down my neck. It feels like that terrible neck and shoulder tension that comes during extensive highly stressful periods… only it’s 24/7. I find myself tensing muscles constantly, even in the most relaxed state. If I bring awareness to my body, I’ll notice it. And the most active pain areas are knotted up so that every visit to the massage therapist involves painful deep tissue massage in order to feel just a little relief from all the knots.

I see my massage therapist once/month. However, the benefit I feel from massage only last several days. If I could afford to, I’d have a standing weekly appointment. I also see each of a chiropractor, physiotherapist, my family physician and a pain specialist approximately monthly.

In the past I have been treated by acupuncturists, osteopaths, psychologists, social workers, natural medicine…

I have tried so many medications I have lost count. Meds for pain, meds to help my sleep cycle, meds for nerve endings…

Amitriptyline, nortriptyline, lyrica, Cymbalta, naproxen, advil, Tylenol, tramadol, Voltaren, cesamet… the list goes on.

I recently asked my pharmacy (which has only been my pharmacy for a little over three years) to give me a print out of my history. It’s several pages long. Imagine what the other ten years looks like!

I have always been one to try to avoid meds and I hate feeling like a guinea pig. Some treatments work but I have found no matter what the initial response, there is always a plateau at some point and the benefit no longer is seen.

At one point for over a year I had avoided eating all wheat, to no avail. I use a heating pad ritualistically at bedtime. I ice my flareups when they are inflamed. I have tried dry needling, “cupping”, many recommendations of supplements…

I have started logging everything, from symptoms to meds intake, foods eaten, water consumption, heart rate, stress levels, weather, my menstrual cycle, physical activity/exercise and sleep.

I live with a brain fog, and frequent vertigo. Sometimes I attribute it to lack of sleep, sometimes to the meds, and sometimes to my pain levels. In any event, my memory is nothing like it once was, and I have inconsistencies in efficiency of thought processing.

living with fibromyalgia

Photo by Paul Wesson Photography

I spent the better part of time I off recently (to rest and recover over a period of a few weeks) researching apps to log and sync most of that data. They don’t all interact, but I hope one day something will work together with them all.

Sleep is a chicken and egg kind of conundrum. I never ever get a restful sleep. My body can’t seem to get into a deep restorative sleep, ever. And yet, my pain cannot improve without some opportunity for my body to heal itself while I sleep. The pain keeps me awake, and the lack of sleep keeps the pain turned on. Chicken, egg, chicken. Egg. Chicken.

I love to be active, indoors and outdoors and I find when I have a regular routine of exercise that my health is definitely the best. But when a flareup occurs (which can be triggered by any combination of things including stress, the weather, and injury, or even just over doing it a little) I get completely derailed. And what would take a “normal” person 12 weeks to get back on track, will take me at least twice that. I need to double up the rest time and cut in half the workout intensities, and hope that something else doesn’t derail me before I get back on track.

Days like today, I feel like a complainer. A whiny, miserable, complainer. And I know there are those who look at me and think “there’s nothing wrong with you, why don’t you just suck it up?” But the fact is, as much as it gets me down, the tears just don’t flow. Living with fibro is frustrating, and often doesn’t feel like much of a life. But it’s mine and I will do so unapologetically.


Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

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Lifestyle changes – taking charge

May 13 / Mother's Day - by Kate Inglis

I have done and tried a lot of different things in the hopes of feeling better, for the last two years I just sort of stopped making any real effort at all. Now I’m ready for a big change. Bigger lifestyle changes than I’ve ever made. One that will result in (hopefully) me feeling better, more rested, more energetic, less pain, better head space… I’m not talking about a diet or a new year’s resolution to get fit and lose a few pounds. I’m talking a complete haul-over. I am going to reboot, reset and hopefully establish a whole new baseline to operate from.

 I am sick and tired of feeling sick and tired… How many times have you heard that one before?

How about this one: the definition of insanity is doing the same thing, expecting different results… ?

So the new plan is:

Take all of the bad stuff out of the diet, put all of the good stuff in.

Make a daily routine that includes all of the activities that I know will support the kind of healthy lifestyle I am trying to achieve.


No more processed crap, no more sitting and hurting, less mindless head-spinning, more mindful head-clearing.


I want a day that includes a morning ritual, healthy work habits, and an evening routine that sets the stage… for a restful night’s sleep.


What do I hope to achieve? The simple answer… a life as close to pain-free as possible. The more elaborate… happiness, both in state of mind and physical being.


So much of what is recommended for a healthy lifestyle in general is priority for someone living with fibromyalgia to become better able to function. The details of the plan (daily moderate exercise, regular sleep, and omitting foods that are known to be bad for my condition: gluten; refined sugars; processed foods; dairy and soy) aren’t as important to me in making this happen as how I will make it stick.


What’s it going to take to keep on keepin’ on when it gets really tough? Some things come naturally to me – logging/journaling a lifestyle change is what started me on the blogging path eight years ago. Hold myself accountable by sharing my journey online. 


What else? I know I need goals and some sort of reward that I am working towards achieving. I am goal driven. This is the part I have deliberated over the most. I will track and evaluate my progress – there are great apps and other tools out there for this purpose. Once I’ve identified my goals and how I am going to reach them, I will create a focus board to refer to and remind me of what I am ultimately trying to do.


Here are a few of the things I’m working on:


Diet changes:

No gluten, refined sugars or processed foods, white breads/grains

Get back to eating a diet high in fruits, vegetables, whole grains, and lean protein – i.e. fish, walnuts

Prepare: breakfast foods ahead of time (i.e. steal cut oats, smoothie mixes); lunches ahead (i.e. quinoa/bean salads); and menu plan suppers (slowcooker and/or prep ahead meals) in advance


Let’s be clear here, I intend to enjoy life and there are a few things I have no intention of giving up in the foreseeable future: espresso coffee (but will switch mostly to decaf), dark chocolate, red wine…


Changes to my routine:

Rise early; exercise; practise mindfulness; eat breakfast; lunchtime break – walk? Swim?; evening walks & yoga; prepare the next day’s meals; reading/writing; bed early… sticking with a regular bed & wake time

Do you have any specific goals/plans? What do they look like?



Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

I invite you to subscribe to my blog using one of the options available on my page (email, rss, Google Connect, like my page on Facebook, etc.)

If you enjoyed this post, please do like/share it. You can do so using the easy share button below!