Living with fibromyalgia can be a very isolating experience. It’s a complex condition characterised by wide spread chronic pain, fibromyalgia brain fog, fatigue, heightened sensitivities and a host of other symptoms that fluctuate on a daily basis, not to mention the disruptions to life caused by a fibromyalgia flare up.
Typically, if you’ve received a fibromyalgia diagnosis you’ll know that it’s pretty much down to self-management. There is no one thing that’s a cure all, what works for one may not for another, making fibromyalgia syndrome a difficult condition to treat. It can be a primary or a secondary condition that co-exists with another illness, then it’s more about knowing what is causing what!
Some days the fibromyalgia pain will be worse than others and for many the day often starts with feeling stiff and full of aches and pains upon rising. As the day goes on the fibromyalgia symptoms either recede, fluctuate or get worse.
One thing we will all have in common is the dread of a fibromyalgia flare up. Even the thought alone is enough to trigger one off and for many this can be a debilitating fear that lurks in the back of the mind. Unsurprisingly chronic stress, anxiety and depression often go hand in hand when you live with an invisible illness which is still poorly misunderstood by many people.
You may appear to look the same as your old self to others who won’t be able to see your physical and emotional fibromyalgia pain. I was diagnosed about five years ago and there’s still people in my life who have no idea about my illness. But that doesn’t make it any easier when you’re having to live through a flare up, so for many of us it’s like wearing a mask and let’s face it ….. we wear it well!
A fibromyalgia flare up can be short lived or it can be so severe it can knock you off your feet for days, or even weeks. Sometimes a day of rest, when possible, will do the trick. However, despite the urge to stay in your pj’s and retreat to bed, this isn’t necessarily the best fibromyalgia treatment option you can give to yourself long term.
A lack of fibromyalgia exercise, such as a daily walk, can worsen the symptoms in the long run compromising the immune system, let alone the effects on mental health.
The cause, symptoms and duration of a flare up will differ from person to person and unfortunately there is no single fibrmyalgia checklist, however it’s typical that a flare up is likely to follow a period of stress or trauma, another illness, medication changes, injury or over exertion.
We all know those days when we feel that we can be like our old self again and conquer all the jobs and tasks that have been building up all in one go! Our fibromyalgia awareness has gone out the window! Then we pay the price.
A day or two later the pain kicks in, known as Delayed -onset-muscle-soreness (DOMS) and when you consider that there are over 600 muscles in the human body it’s no wonder a flare up can be so debilitating!
Symptoms of DOMS include :
- muscle fatigue and short term muscle strength
- muscle pain
- muscles that feel tender to touch
- swelling in affected muscles
- stiffness and reduced motion due to pain when moving
The cause of DOMS for fibromyalgia sufferers is likely to be due to a period of over exertion, lifting etc. where the muscles are stretched and worked causing them to tense while at the same time you lengthen the muscle. The result is sore and painful muscles which maybe exasperated by a condition known as hyperaglesia, an abnormal heightened sensitivity to pain.
We all know that to avoid a fibromyalgia flare up we have to pace ourselves but in reality sometimes it’s easier said than done, because after all who doesn’t want a piece of their old self back!
It takes some effort but it can be done. Fibromyalgia pacing involves practice and like any habit it builds up over time. Taking time to relax and manage stress is essential to any self-care plan and even more so if you have fibromyalgia. Here’s a top tip: Relax and Breathe, I call this my R&B time.
Giving yourself regular breaks during the day to relax and breathe acts as a reminder to pace and in doing so helps to bring a sense of balance back into life. When you have to manage a chronic condition, this has to be up there on the top of your fibromyalgia self-care list.
Only you know what’s important to you and it’s about prioritizing exactly that. Throughout the day try taking a few moments for “time for self”, just to check in with yourself and ask “What is it that matters most for me today and is there anything I can let go?” Set yourself an intention and stick with it.
Of course life is going to throw stuff at you that will stress and tip the balance, so it’s about being flexible as well. By being prepared, learning to take time to R & B, helps as a fibromyalgia treatment you can practice anywhere to help build resilience for those difficult times.
Taking the time throughout the day to check in with yourself to relax your body and mind and practice a deep breathing exercise will pay massive dividends in the long term. It’s a re-training of the body, the mind and the central nervous system that, for now, all is calm. The alternative is being in a constant state of auto-pilot with little or no awareness that your stress response is running riot with your pain receptors and signalling your body to go bonkers!
When you’re stressed, in a flare up and experiencing pain you are likely to be holding tension in the body and practicing the habit of shallow breathing from the upper chest. Notice if at times you are even holding your breath, keeping you stuck in the fibromyalgia stress loop. This sends a signal to the brain with the instructions for you to become hypervigilant resulting in additional tension and increasing the pain in the muscles.
A little R & B daily soon builds up and returns a balance to a chaotic system of coping with fibromyalgia and reducing the onset of a flare up. The benefits of deep breathing help to reverse fibromyalgia hypervigilance by stimulating the parasympathetic nervous system, responsible for inducing the rest and digest mode whilst reducing the activity in the HPA Axis (stress response).
Top Tip: Give yourself five minute breaks throughout the day to sit in a quiet place, even if this is in your mind, you can use a very powerful tool …… your imagination! I call this my Island in the Stream, my escape, a place I can get out of all the muddy gushing water. Here it’s safe to stop, check in to pace myself with some mind-body awareness and focus on my breath.
It’s a time for you to stop and remind yourself of your intention for yourself, bring yourself to the here and now and re-focus with some deep breathing. Begin by taking a deep breath in through your nose. Inhale for a count of four and slowly exhale through your mouth for a count of seven or eight. Observe the sensation of your breath rise and fall from your diaphragm and then visualize your breath flowing in and out from just below your naval. It’s as simple as that and even a few minutes practice throughout the day yields many benefits. Practice makes perfect!
For further information about fibromyalgia breathing practices, top tips, workshops and support you can keep in touch on our online group and page.
Thank you for checking in with us and don’t forget to check in with yourself. author Jok Saunders fellow fibro fighter Founder of The Fibro Clinic South West