My Fibromyalgia Story

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 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):

  • Dizziness
  • Migraines
  • Loss of balance
  • Neck aches
  • Back aches
  • Inflammation
  • RLS
  • Skin irritation
  • Joint aches with up to 18 tender points on the body
  • Allergies
  • Night sweats
  • Cold hands and feet
  • IBS
  • Numbness of limbs
  • Swelling of hands and fingers
  • Anxiety
  • Sensitivity to bright light and sound
  • Insomnia
  • Memory problems
  • Fatigue

But those are just the tip of the iceberg and the symptoms which 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 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 approaching and have the knowledge needed to try and calm it down as much as possible. 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 and be still. 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 for a bit, 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. If you find yoga too boring, then I would highly recommend swimming as it is low impact, gentle and releases tension in your shoulders, arms, back 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 Fibromyalgia 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

X

Fatima

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6 Comments

  1. Thank you for writing about your fibro update Do you think you have improved any over the years? I have most of my pain in my legs and I find it very difficult to walk I have a wheelchair and crutches to use if I need them to stop the pain building up I really hope and prey that one day SOON there will be a cure for this life robbing condition X kath

    1. Dear Kath. You were one of the reasons that I wrote this post, I hoped it helped in some way. I thought it was getting better but recently it seems to have been getting a bit worse. My legs too, are my main problem area. That and my back and neck. 4 days ago I woke up and was unable to move my left shoulder which was horrible but thankfully that disappeared out of its own.

      I also went for cupping yesterday which I hope will start helping soon. The main thing I am struggling with now is the insomnia and anxiety but I am taking it day by day.

      Warm regards and thank you for always reading x

      1. Hi Fatima for the fatigue I take iron tablets 200mg every day That has made a big difference Also I put hot water bottles on my legs usually just so I can walk I really hope you feel better soon Are you working still ? Apparently fibro waxes and wanes so you may pick up again soon I always look forward to your posts Hope your still following your dreams Kath x

  2. My wife was diagnosed at the beginning of the year. This is not a funny story at all. Symptoms started last year and worsened after our wedding in September. It has caused a lot of friction in our relationship. I’m not a person prone to sitting on the couch and taking it easy. I need to be out there doing stuff. Energetic athletic stuff. We have small child which complicates things even more. This disease is causing chaos and disorder in our lives and I really don’t know how to deal with it. She never wants to go anywhere or do anything. She doesn’t have the energy to deal with household chores anymore. I on the other hand need to keep fit and healthy and sports are where I get my good feeling back. I have no time to do these things anymore and feel constantly under pressure, unable to relax or have some free time to myself. As a result I am depressed and anxious all the time. It is so hard not to feel resentful towards her. It seems like she’s just letting this thing beat her. But then I read up on it and I realise how debilitating this is and that it’s not her fault. I need to support her and treat her the right way but I also need to live. All I do is work and work to pay the bills and try to get by. I can’t see a solution at all. I’m not sure how other spouses deal with this but the negativity and hopelessness of the current situation is breaking me down and I don’t think I can handle it long term. Any advice would be greatly appreciated.

    1. Hello,

      I am so sorry to hear that your wife was diagnosed with Fibromylagia. It certainly is not an easy thing to handle. I do understand your frustration, have you tried speaking to your wife about this? I can guarantee you that she probably feels a lot worse than you do since she might feel responsible for your feelings. Have you thought about coming to a compromise with regards to working out together? Perhaps talking a walk outside (not sure where you live but if it is warm, then I wouls suggest attempting to walk with her – even if it is for 5 minutes). It is VERY important for her to keep active and while I know that it hurts to move or walk or run or even lift up your arms, starting slowly will really help her in the long run. If you have access to a warm pool, then why not try swimming together? Another great thing to do is watch some Yoga with Adrienne videos on YouTube and attempt to do the more gentler one’s together. In this way, you get to be active while she helps her body. I would also highly recommend speaking to a therapist about this since you are newly married and harbouring these feelings cannot be good for either of you.

      You mentioned that you need to support her but you also need to live and this is concerning. Again, does she know your feelings about this? Have you considered applying for a disability grant for your wife? Again, I don’t know where you are based but a few countries have recently started giving grants for this disease. I don’t really know what else I can tell you but the only thing I can stress about is that you should please try as hard as you can to not let her feel guilty for having this or pressuring her into doing sports or activities. Yes, it really will help her and sitting inactive everyday could possibly do more harm than good but she will come to realise this in her own time. Making her feel bad will increase her pain as she will be even more stressed than she already is.

      If she is interested in chatting to me or wants some advice on how I handle this, then feel free to email me at fatima@fatimasaib.co.za

      I hope this helps even a little bit.

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