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What it’s Really Like to Live With Fibromyalgia

I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue). Usually my writing is very positive and I try to look at the bright side – what I can do, not what I can’t. Today I am going to share what it’s really like to live with Fibromyalgia, as someone who has lived with it for more than ten years.

what it's really like to live with fibromyalgia

The definition of Fibromyalgia, chronic widespread musculoskeletal pain, chronic fatigue and sleep disturbances, doesn’t convey the depth of the impact of this illness. In addition, the body is a whole – therefore one system acting up has effects on others, for example my tummy tends to get upset when I’m very sore.

Could a person imagine that they had one or two hours less sleep than their body needs, never sleep in a block of longer than one or two hours (that’s rarely completing a whole sleep cycle), spend some time awake (alone, in the middle of the night) in too much pain to sleep, need a medicine to help them get to sleep but still struggle to do so, and never wake feeling well or refreshed (whether they’d had four or nine hours sleep) EVERY DAY for ten years, they may understand my illness.

People who are just tired don’t get this level of exhaustion. This level of fatigue causes brain fog – loosing words, swapping words, memory problems and clumsiness.

I do everything possible to maximise sleep. It just doesn’t seem possible for me to sleep well.

In addition to the sleep problems and soul crushing fatigue that accompanies this, there is the pain. Chronic pain seems so tidy a term. What it means is that I have pain levels of 4-6/10 every day.

My neck takes the centre stage, interrupting sleep, being extremely stiff in the morning and generally tight and sore. When it gets worse it causes secondary symptoms – severe headaches, dizziness, nausea and vomiting. I have to see a physiotherapist every three weeks for neck tractions and acupuncture to keep it away from the worst end of the spectrum. Working at a computer, sitting still, and moving too much aggravate it.

My back is a close second, it often feels two moments away from spasm – like the back of the ribs are electrocuting it. When my lower back gets sore it radiates down into my glutes and upper legs. All down the spine are tight, angry muscles. I have to put a pillow under my legs in order to lie down.

There are more transient pains that come and go, such as my wrists and lower arms when I’m at work. My upper arms always feel bruisy, if I bang into a door frame (brain fog steals spacial awareness) it can hurt for ages, people grabbing my arm hurts far more than it should (hyperalgesia). Severe period pain for a week every month (dysmenorrhea). My knees have recently decided to join the party and have caused some problems – on some days the pain gets so bad that I can’t walk and walking is one of my daily pain management techniques.

Fibromyalgia also causes flare ups – a temporary exacerbation of one or more symptoms lasting from a day to several months. My entire pregnancy and my son’s first year were a giant flare up, all of my symptoms were wildly worse (pregnancy symptoms are like mild to moderate Fibromyalgia symptoms – so I had a double dose).

Sleep deprivation doesn’t help pain. There’s been studies on this – healthy subjects subjected to minor sleep deprivation develop Fibromyalgia symptoms. Luckily for them they could have a few good night’s sleep and recover. Severe sleep issues has been widely researched and is extremely detrimental to health .

Every day requires multiple pain management techniques. Including stretching, meditation, resting, pacing, walking, trade offs and judicious use of pain medicines. My pain specialist has recently made me see that by not controlling the pain as well as I can I am causing physiological damage – chronic pain changes the body – and I am leaving myself susceptible to more pain and fatigue. The neverending cycle of Fibromyalgia.

You might also like:

Free Printables from Melissa vs Fibromyalgia Book

My Low Dose Naltrexone (LDN) for Fibromyalgia One Year Experiment

Essential Oils for Pain Relief and a Pain Cream I am Loving

What I’d Start with upon Diagnosis with Fibromyalgia (If I got a Do-Over)

Here’s the thing – I manage this illness well.

I, mostly, kick fibro’s butt. I work 20 hours per week, have a toddler, a hunky hubby and hobbies. I do a lot while in a lot of pain. There are people far worse off than me. There are people with milder symptoms than me. But for my level of symptoms I cope remarkably well. The pain specialist, my doctor and the rheumatologist are impressed with my progress. The pain clinic has nothing but medicines to offer me because I do everything else they suggest.

I wish, with all my heart, that I didn’t have these limitations. I fervently pray for healing. I feel more guilty than anyone could know about the effects of these limitations on my family.

So when I make a call to miss out on something, to go to bed or ask for help – I’m far past the point I can push through.

I have exhausted every avenue I have and know I can’t afford the consequences coming to me if I don’t rest. I’ve been doing this for ten years. I have lived it, researched it and constantly push myself. So all I ask of the people around me is to respect it when I say I can’t do something or that I need help. Trust that I am just trying to live well. It’s incredibly hard and I survive only by my faith in God and incredible willpower.


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My book is everything I do and have researched to fight Fibromyalgia

 

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Simple Things That Help Me Exercise

When your muscles are clenched, with some muscles screaming louder than others and you’re so tired that bedtime is all you can think about, exercise isn’t your top priority. But, ironically, light exercise can help with fatigue. It also helps to strengthen the muscles that so desperately ache.
Here are the simple things that help me exercise:

  • My dog – he needs a walk most days, knowing that’s his favourite time of day encourages me to go.
  • Knowledge of my body – if I don’t keep it up I slip backward in my progress. In a surprisingly short amount of time, how far I can walk without too much pain in my legs afterward, can decrease.
  • Willpower – anything I achieve with fibro/CFS takes a lot of willpower. It’d be easier to let myself lie on the couch more often than not, but if I (gently) push myself, while respecting my limits, it’s worth it. 
  • Enjoyment – I enjoy the type of exercise I do, mostly walking and Pilates or yoga, so I want to do it.
  • My baby – my little buddy likes walking as much as I do. He enjoys watching the new sights and then being lulled to sleep by the motion. Sometimes it is the longest break I get from having to hold him – which helps my back!

I have to remind myself regularly, even if the baby is fussy when we get home, to stretch. Stretching is very important as I think that my muscles are super prone to clenching and getting tight from use. 

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Five Ways I Cope With Fibromyalgia: AKA Lifestyle Choices to Live Well

We all know the recommended steps for being well- eat healthily, exercise moderately and get plenty of sleep. I believe that people with Fibromyalgia need to adhere to the healthy living guidelines, augmented to their ability level, of course. But what happens if no matter what you do, you are exhausted and sore? There’s no escaping it, you have to do the work.

Here’s the five lifestyle choices I make daily to cope with Fibromyalgia and chronic fatigue:

1.       Healthy eating

Food is fuel, right? Everyone should eat healthily with a diet full of fresh fruit and vegetables and rich in whole grains and protein. When you are battling extreme fatigue and travelling muscle aches, what you eat can be of great help.

In my worst flair ups, my food diary used to become a love song to carbohydrates. I subconsciously craved fuel that my body could turn into energy; unfortunately, all those carbohydrates created the opposite effect. My already exhausted system was battling its way through the simple and complex carbohydrates I was throwing at it every few hours – it had no time to create energy. It took a few days of concentrated effort, but once I replaced a few of these servings with other foods, I began to feel the effects.

For me, eating a moderate diet rich in fruit and vegetables is a good start. Some people swear by Paleo, or Keto or gluten free or some such diet – it’s all worth a try.

2.       Exercise

Unless your doctor forbids it due to a medical condition, you should be exercising. A person with Fibromyalgia will work at a lower intensity and for a shorter period, but they should still exercise.

The amount of energy I have fluctuates, depending on many things, but I always go for my walk with my dog. Sometimes it is only around a 15-minute block, other times I will go for a course with a decent hill or will walk for a little longer. I have found 25-30 minutes to be ideal for me. I am always treading the fine line between proper muscle exhaustion and pain. This can be hard to monitor with constantly changing goalposts like fatigue and pain levels, but after two years, I have worked up to my current level.

Pilates is my favourite form of resistance exercise. I have done it faithfully for about ten years. Sometimes I operate at a beginner level and other times I can advance the exercises. When I was starting again after a bout of extreme pain, my physiotherapist created a 20-minute programme for me to follow. With my experience, I was able to advance the exercises as my energy levels allowed.

I have found it very important to keep the strength in my muscles with gentle activation. There is a strong correlation between less exercise and more pain.

lifestyle choices I make daily to live well with fibromyalgia

3.       A compassionate, knowledgeable physical practitioner

My physiotherapist is a valuable component of my healthy life. Someone you trust, who knows about Fibromyalgia and can bring about lasting changes with their treatments is vital to coping with long-term pain and fatigue. Someone who can come alongside you and take the burden of your body, even if only for half an hour is great for physical and emotional health.

My physiotherapist is the only person I can speak candidly to about what I have been coping with for the last 7-14 days (depending on how long I can stretch out the periods between treatment). After trying many of the different types of therapies, I have found acupuncture to be (one of) the least invasive and longest-lasting treatment.

Other posts you might like
Why I’m Treating the Fibromyalgia as Naturally as Possible
My Daily Log, Why I Track Fibromyalgia Symptoms
Free Printables from Melissa vs Fibromyalgia Book

4.       Sleep and rest

Sleep is my hardest battle. A full night’s sleep is the best way to cope with life. I try to go to bed around the same time every night and have a set routine that involves getting ready and reading before I switch off the light. I also try to get up around the same time every day. This helps, but I will not always sleep through the night, I will not always fall asleep straight away and I will often wake up at 4am (or every hour or two) with an incredibly stiff and sore neck. Since I began Low Dose Naltrexone in 2017, I have finally managed to sleep in blocks of more than an hour! I don’t sleep through the night, but I do sleep much better and this has flow on effects.

In order to cope on days when the kids have had me up in the night or the fatigue is just worse, meditation is a go-to. I can’t nap, so meditation is a way to get decent rest when I need it.

5.       A plan for the “hard” days

These are inevitable. Everybody gets sick from time to time. A person with Fibromyalgia will have some harder days. I have found a written list with suggestions for what to do on one of these days to be useful for pulling me out of the downward spiral of panic that accompanies intense pain.

Things like:

  • Specific stretches for my neck (tightness in my neck often causes headaches, nausea, dizziness and extreme fatigue)
  • Things I can do in descending order of ability (a gentle walk, gentle stretches, watch a DVD, read, lie down with an audio book on, lie down and do nothing else)
  • A reminder of the pain relief options I have at my disposal (wheat pack, icepack, heat cream, Ibuprofen, prescribed pain killers) – you would be surprised at how often I forget these things exist in the grips of serious pain.

All of these ways for coping should be underpinned by hope. Hope that your “hard” days will occur less often. And hope that you will be able to compile a life that is heading towards wellness, rather than just away from sickness. This is what I have experienced over the past two years as I have found more to help, particularly the low dose naltrexone, and it is what I hope for you too.