It should come as no surprise to the majority of you that for the past seven years, I have been suffering with a musculoskeletal disorder called Fibromyalgia which, if I have to sum it all up, means that I experience constant discomfort and pain all over my body.
I figured that because this disease is growing rapidly (especially over here in South Africa) I would share a brief background of how I got diagnosed alongside some of my tips that I picked up over the years which can hopefully improve your way of living or at the very least, make things even 2% easier for you. I have spoken about my condition countless times and have uploaded three videos about my journey with Fibromyalgia and yet, feel as if I have so much more to say. Many of you might not be aware of this, but I got introduced to blogging because of this disorder. After typing all of my experiences and feelings with the sickness, some friends urged me to share it online which lead to a very successful Fibromyalgia blog that I ran for about 3 years before deciding that it was all getting a bit too much. But, I’m getting way ahead of myself here, let me start at the beginning…
In the middle of 2010 I woke up one morning ready for school when I discovered that my left arm was in excruciating pain and I was unable to bend or move it from the shoulder down. I figured that it was probably because I slept on it and went on with my day only to find myself a couple of days later with my arm now all bandaged up and still, unable to move. A teacher of mine asked me what was going on and, after explaining that it was “really sore”, he urged me to go to the doctor “just to be sure that it was nothing major”. And so, I went, and when he couldn’t figure out the problem, I went to Groote Schuur Hospital. After about 3 months of countless tests and waiting around in the Arthritis Clinic, we finally discovered that I had something unheard of called ‘Fibromyalgia’.
There were two moments in this entire hospital experience that made me realize that things would never really be the same again, the first, was sitting in the waiting room with my mom and having her being approached by a group of about 4 students my age who were interviewing some patients of the clinic to find out how the sickness changed their lives. They looked at her expectantly and she pointed at me and said that I was the one who was sick. I suppose we both never really expected the look of shock, amusement and then embarrassment cross all their faces as we got locked in a 3 second moment of awkwardness.
The second was moments before I got diagnosed. There I was sitting on the examination bed when a really rude doctor walked in with about 8 med students behind her. She pricked and prodded me while their eyes were glued to me and filled with pity. After digging her fingernails into my hand, neck, shoulder and legs, she finally gave up, said something in medical terms and sashayed out the room with the entourage close behind. Since then, there have been many moments such as these equal in amusement although perhaps not quite as potent.
After getting diagnosed by the doctor who stayed put in the room, I searched the disorder on my phone and remember it saying that Fibromyalgia is a musculoskeletal disorder where one experiences widespread pain over the entire body- but as I would soon come to learn, that was only the beginning as Fibromyalgia has as many as about 65 more symptoms which would all take it’s turn to wreak havoc on my system.
Saying that my life changed in a moment does not even in the slightest, do justice to the actual changes that happened around me. Everything from school and studying to my personal life made a complete 180 degree turn and most of them were devastating. In just a few short months, I went from arm pain to not being able to walk or lay down for long, being unable to eat or wash my hair by myself, physically being unable to get out of bed in the morning and holding up my toothbrush to brush my teeth for at least 10 seconds. Amongst all this hardship that I was silently suffering, people at school started to say that I was faking it and that I wasn’t really sick and worst of all, was looking for an excuse to bring a laptop to school so that I could ‘brag’ and not need to write. However, that was the least of my worries as the doubt started to settle into the minds of my family members who, like those students in my class, believed that because I looked fine and had no visible marks on my body, I surely must be living one big lie. A family member actually once told me that I probably just sit around and google random sicknesses before deciding which of them to adopt them as my own. Amazing right? Therefore, I know for a fact that the main thing which fibromyalgia sufferers deal with is disbelief from family and friends which at times, hurts even more than the physical waves of pain rushing through your body. If like me, you are struggling to get people to take you seriously, then I suggest you sit with them and watch my 3 videos below which hopefully should shed some light on everything that has been going on in your life.
After about 2 years of taking hard-core medication every single day, I made the conscious decision to stop it all and try the holistic route which, as one can imagine, got me some very rude snickers from 3 GP’s and a pharmacist who were adamant that not only was this impossible, but I was making a huge mistake. I will admit that taking Tremadol helped me to sleep as the insomnia crept up but, after seeing a friend have kidney failure because of this tablet, I welcomed the insomnia with open arms. If you are on any strong pain killers then you can understand the difficult task I was attempting to embark on and, with no support from medical professionals, and no one in my social circle who understood what was going on, it was even harder. I finally went to my childhood GP who gave me the answer I was running after and, after strict instruction to start slowly, I finally weaned myself off the horrid capsule and morphed back into nights that wouldn’t seem to end.
I am now in my 7th year of having this disorder and it still never fails to surprise me. For the first year, things were crazy and I was sick almost every day. I started to slowly try and figure out how to control my flare ups and, for the next 4 years, knew that winter was the worst time for me as any hint of cold would leave me with excruciating pain that made it impossible to sit, stand or lay down. However, for the past two summers, I have come to realize that any heat or intense sunshine would leave me with that same amount of pain as what the wind or rain did. Not only was my triggers shifting but, it was on a constant rollercoaster ride where one moment the sun would heal me and the next, would leave me unable to walk. That’s not the only side effect though. On any given day, I am either suffering with any of the following (the most I have had at one time was about 12 of them):
- Loss of balance
- Neck aches
- Back aches
- Skin irritation
- Joint aches with up to 18 tender points on the body
- Night sweats
- Cold hands and feet
- Numbness of limbs
- Swelling of hands and fingers
- Sensitivity to bright light and sound
- Memory problems
But those are just the tip of the ice berg and the one’s I suffer with the most. At the time of writing this post, I currently have fatigue, allergies, IBS, Inflammation, back and neck aches, tender points (at least 6 right now), RLS and a horrible, burning, skin irritation.
As mentioned above, it has been quite hard to try and pinpoint my triggers but, the one thing which gives me some sort of comfort is that I know exactly when a flare up is coming and have the knowledge of years of experience to try and calm it down as much as I possibly can. I usually do this by stopping whatever it is I am doing at that moment whether it be reading, typing, walking or even eating. I take a moment, try to pinpoint the pain and release any constraints I may have on the area (like loosen a sleeve, unbutton a button or taking off any jewelry. Then, depending on where the pain is coming from, I either lay down or sit somewhere quietly. This past week however, has been an absolute nightmare as I suddenly got a flare up which started in my jaw and moved throughout my body in waves of pain. For the first time in about 2 years did I have a flare up as bad and as sudden as this one and, not only was I unable to read, but driving, writing, sleeping and sitting seemed impossible. I am still kind of recovering from this nasty bout and, while I get about 10 minutes in the day where I have no pain at all, the rest of my day and night is spent trying to figure out how to get some sleep without having to turn to something strong.
Unfortunately, many people are forced to give up their jobs and studying due to getting fibromyalgia and sadly, I know of more people who had to take this route than those who are able to continue their lives normally. To say that it’s a horrible feeling is an understatement. Can you imagine waking up one morning and not being able to get out of bed? Or not being able to walk up a flight of stairs without any help? Never mind that, can you imagine what it must feel like to be ridiculed and gossiped about because you look perfectly fine and have an ‘invisible’ illness? I remember once I tried explaining what the pain felt like and the best explanation I could come up with was imagining that you were Giles Corey from the Crucible and had heavy rocks placed upon your body so that moving and even breathing at times, seemed impossible. Quite dramatic, I know, but it’s a spot on description.
What I usually do a week or so after my initial flare up is to go for a massage that helps to ease pressure off the inflamed area and relax my body. In conjunction with the massage however, I go for some cupping therapy which has been the only thing that actually helped. Even though this combination hurts like hell after, I immediately feel lighter, refreshed and as if a few of those rocks have been sucked up through the cups. I am a big advocate of the whole natural healing process so would highly recommend that you try going for cupping or even acupuncture if you are suffering with a chronic illness. I got some skepticism form my immediate family after the first few times I went for the treatment but now even they go regularly when they have back or neck aches.
As far as medication goes, I dislike having to take anything strong but, when my symptoms get extremely bad, I take a neurophen during the day and a myprodol at night to both ease the pain and allow me to sleep for a bit. Usually, the only thing I take at night is a capsule that has a combination of turmeric and cayenne pepper which is supposed to help with the inflammation (I buy the Flora Force one which you can get at Wellness Warehouse of Dischem) and in the morning, take a combination of Slow-Mag or MSM for some energy and an Omega 3 capsule.
As far as exercise goes (which many of you see as impossible), I recommend that if you are not doing anything because of the pain that comes along with it, then at least try to do yoga once a week. My favorite Yogi on YouTube is Adrienne and, along with my fibromyalgia videos which I mentioned above, you can find a link to her channel and one of my favorite sequences from her below. Swimming however, is my go-to work out for Fibromyalgia as it is low impact, gentle and releases tension in your shoulders and legs.
I know this post was quite long and overdue and I apologize to everyone who has been emailing and messaging me since last year to put my story into words – I just had no idea where to start. If you suffer with Fibro then I hope that my tips helped you even a tiny bit and, if you have a loved one who suffers with it, then I hope you have a clearer understanding on just how life-changing and emotionally draining this can be.
Gentle hugs and lots of love