Myalgia: Living with Chronic Pain

If you could see chronic pain (Myalgia/Fibromyalgia) - Facebook. Green dots represent pain triggering body points.

I’ve been living with chronic pain since being diagnosed with Chronic Myalgia in 2014, and if I must be quite honest, my life has never been the same again. Living with chronic pain makes day-to-day life really difficult. The pain has taken over every single part of my life, from tidying up, to cooking, to working, relationships, to walking, to sitting, to sleeping… I mean EVERYTHING! According to the International Association for the Study of Pain (IASP), the definition for chronic pain is, any pain that’s been present in any part of the body for a period of three months or longer. This ongoing pain is also known to be a “major cause of disability and distress”. The difference with my kind of pain and acute pain (non-chronic pain), is that it “doesn’t serve any purpose”, says Dr Alan Fayaz, a spokesperson for the British Pain Society (BPS).

“Normally when we feel pain, it’s the body’s way of warning us about something – you’ve put your hand on a hot stove, or you’ve had your appendix taken out and your body needs to rest so it can heal”, he adds. “Any pain that’s still present beyond a reasonable time of healing is not functional.”

Chronic pain comes in a number of different forms, and symptoms. A few of the symptoms that I experience is for one, my skin is very sensitive to touch, and if anything touched it on the days that the pain was severe, then it would feel like I was burning. I constantly also get shooting pain that feel like bolts of electricity in my knees, ankles and feet. But one of the biggest impact of chronic pain is the exhaustion and low mood swings. Determined to be free of the pain, I am trying everything I can to try and minimise the pain. Before the Corana virus pandemic, I went swimming at least twice a week, had my weekly body massage and acupuncture with the physiotherapist, and took long daily walks. As I’m self-isolating, I’ve replaced all that with a walk here and there (not enough), and as they are of high impact, I’ve also started doing a 1 hour mixed cardio workout every other day via YouTube. Under the current circumstances, every little bit helps, but would have preferred my normal keep fit routine.

Do you live with chronic pain? If you do then you’ll probably relate to the following.

  1. You’ll never know how you’ll feel in the morning: When you live with chronic pain, everyday is an adventure. That goes double for the start of the day. I never know how much pain I’ll wake up with or how it will change throughout the day.
  2. People don’t seem to understand what “chronic” means: Friends and loved ones often mean well when they say things like, “hope you feel better soon!” The reality is the pain doesn’t stop, so it’s hard to know what to say.
  3. Have you tried …?”: Again people mean well and want to help. That said, I see professionals in order to get help with my pain and condition, and more often I read and do a lot of research on the condition myself. Which means, I know my body best.
  4. Some days are easier that others: I’ve been dealing with varying levels of pain every single day for the past 6 years. Some days are a lot easier. Other days are an absolute struggle.
  5. The relief you feel when painkillers start working: Pain affects so much of my life, including how I interact with others. When relief starts to hit, it eliminates so many of those symptoms of pain. I even become productive, instead of someone struggling to survive the day.
  6. Still, medication doesn’t completely remove the pain: Pain is still a constant companion. It’s always with me, even when I’m on medication.
  7. Pain changes everything: I’m starting to forget the life I had before chronic pain. Chronic pain dulls your life and changes how one uses their time and energy, what jobs (if any) we are able to do, and every single relationship we have.
  8. Support is everything: Not everyone will understand what you are going through, so trying to find those who do is vital. I have my people that I go to when I want to vent about the pain, stigma (chronic myalgia is an invisible illness) or simply speak without being judged. These people are a Godsend and have completely changed how I’m able to process my feelings around my pain.

Having chronic pain means you are required to make a lot of lifestyle changes. Managing the pain, can feel like, or even be, a full time job. Fortunately I have a variety of medications, tools, techniques and a support network to help manage the pain. Living with chronic pain can be challenging too. I try hard to overcome the challenges by keeping busy – which is a form of distraction, and focusing on the positives in my life.

About Salha Kaitesi 43 Articles
Mother, Daughter of Rwanda| Founder of Beauty of Rwanda, Executive Editor of Teakisi| Gender Equality and Empowerment Champion| None Of Us Can Move Forward If Half Of Us Are Left Behind

22 Comments

  1. OMG…. that put shivers down my spines and just going through it, all I wanted to do was commit the crime “have you tried”. That shows that indeed humans are creatures of habits. It’s an instinct reaction to want to help.
    People really do mean well but if you don’t wear the shoe, you definitely don’t understand the pain.
    Thanks for showing me that sometimes it’s good to just listening ear.

    • It’s the first thing you think about but we have to learn to listen to others and not give advice – if we can help it. Thanks for reading.

    • I try .. but I do wish a lot of times that I don’t have to. I just want to be fine and back to “normal”. But the experience does weaken or toughen you up. I have responsibilities so the latter is a must. Thanks for reading

  2. Wow. And I know, as a chronic insomniac, the “have you tried….?”
    They mean well, but it is very very frustrating.

    I’ll be praying for you .

    • I know! Very. And worse part is when they dismiss you like they know what it’s been like for you.. like you ain’t trying at all.

  3. Thanks Salha for writing and sharing this. Sorry about your pain, glad you have found some remedies that provide some relief. Xx

  4. This brought tears to my eyes after reading this you really dont realise what people are going through everyday of their life ur an Inspiration for sharing this .I will pray for you ! Xxxx

    • I’m absolutely “fine” – you see me all the time, so we keep pushing and pray for a better tomorrow.. didn’t mean to make you cry Kelly xx

  5. I feel you have not even scratched the surface here! But all the same, it’s quite an eye-opening read about something I never knew about, and am probably still very much ignorant about. Yes, as creatures of habit, we as humans are so guilty of the ‘try this or that’ syndrome which, either betrays our outright ignorance or complete misunderstanding of circumstances which are beyond personal comprehension! I am indebted to your insights, for I am more learned, enlightened and a little less ignorant and insensitive today. May you keep touching and inspiring others to conquer their fallibilities!

    • I really haven’t scratched the surface on this but little write ups here and there help me and help raise awareness. Many people live with chronic pain caused by different illnesses but the stigma persists. Many people don’t seem to appreciate the effort sufferers make on small things like getting out of bed, or getting dressed. Maybe there is a book in there? ☺️

  6. Oh Salha. This is really sad to hear. Pain really changes everything about life and you begin to forget what it is like to live without pain. May God heal you, I pray.

    I shall keep you in my prayers.

    • I’m ok though .. considering I’m able to do a lot other things when the pain isn’t that bad. Thanks for your prayers.. btw are you still part of us? I don’t believe I’ve seen any of your posts lately ☺️

      • Happy to know that you’re okay and can do a number of things. Yes. I’ve been really rare. Quite busy at work, but I am also in a season where I’m reconsidering/ re-evaluating the content I write about. I am quite hesitant to write until I become clear on the direction I should take. But I still follow Teakisi very much. Always grateful for the opportunity to write.

        • That sounds good. I think it always comes to a point in life where we have to sit back and take stock of all the things we are doing. I wish you the best in all you decide to do. Thanks

  7. This is a wonderful piece and a timely reminder to modern medicine that not every condition can have a scientific cure. But without the science we are left with the most important bits: a person’s narrative; their feelings; an insight into the impact that a chronic condition has on their lives. You are an inspiration for being so open.

  8. This was a raw, real and powerful article. I know many people will be able to relate to this. Thank you for sharing your story.

    • I held so much back – maybe because I’ve shared a few posts about it on Facebook, or simply because I couldn’t find a start, middle and end – just because there is too much going on about the condition. Nevertheless, I hope I’ve still managed to paint a picture of someone who has and continues to live with chronic pain. Thanks for reading.

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