This is my raw story I wrote about my own true experience from pain to happiness. I hope it gives people like me out there reassurance that there is a real, drug-free solution to relieve their serious muscular pain. Mine was caused by an autoimmune disorder and this has been my journey.
Around 10 years ago I tested positive to the human leukocyte antigen B27 (HLA-B27 gene). HLAs are proteins that help the body's immune system identify the difference between its own healthy cells and foreign, harmful substances. The discovery came after my Dad was diagnosed by his Doctor. My Dad kept experiencing iritis for no apparent reason along with a lifetime of suffering from psoriasis, which led his Doctor to identify the gene. Because it is a genetic disorder seen in many autoimmune conditions, my Dad told my sister and I to also get tested.
What does it mean to have HLA-B27?
HLA-B27 is found in around 7% of the population and is strongly associated with many inflammatory diseases. There is a 50% chance that the child of one HLA-B27 positive parent will inherit the gene. Although most HLAs protect the body from harm, HLA-B27 is a specific type of protein that contributes to immune system dysfunction. The presence of HLA-B27 on your white blood cells can cause your immune system to attack those otherwise healthy cells. When this occurs, it can result in an autoimmune disease. Spondyloarthropathy (also known as Spondyloarthritis) is the name used to describe a group of rheumatic inflammatory diseases which have been linked to the HLA-B27 gene. This type of arthritis has common characteristics which can include inflammation of the:
Spine
Eye
Skin
Gastrointestinal tract
Joints
Ligaments
Tendons
There are a variety of specific diseases linked to the HLA-B27 gene which include;
Ankylosing Spondylitis (AS) – This is the most common where 90% of people with AS are HLA-B27 positive. This was also the 1st disease linked to a HLA gene back in 1973.
Reactive Arthritis - Formerly known as Reiter's Syndrome, this causes inflammation of the joints, urethra, and eyes, and sometimes lesions on the skin.
Psoriasis - Typically cause red, itchy or scaly skin.
Uveitis & Iritis - Causes swelling and irritation in the middle layer of the eye.
Urinary Tract Infection (UTI).
Diarrhea & Constipation.
Inflammatory Bowel Disorder - Crohn's & Ulcerative Colitis.
Psoriatic Arthritis - Causes pain, swelling or stiffness in one or more joints.
Some diseases such as Reactive Arthritis can be caused by a trigger event such as a bacterial infection from food poisoning like salmonella, shigella, Yersinia, or Campylobacter or from catching the STD chlamydia.
My Joyful List of Fun Symptoms
Recurring skin inflammation anywhere on my body causing me to itch like a crazy lady.
Stiff and tight muscles, especially in my hips and legs.
Recurring inflammation to some of my reproductive system which Doctors say could be the reason I haven’t been able to fall pregnant. Doctors haven’t got the science to say this for definite but they also haven’t found any other reason.
Psoriasis in my ears
Urinary Tract Infections (UTI’s). A couple of years ago I had it 5 times in 18 months. In the end I needed a 2nd course of antibiotics to stop it. Again Doctor’s couldn’t work out why the antibiotics weren’t working & the last one started to put it back on me by questioning my hygiene! I thought about throat punching him but instead told him to give me a 2nd course of antibiotics and see how I go. Job done, never had it since.
Sarcasm. What!? It’s a symptom of my symptoms, and gets me through the irritating days so don’t judge me, because all of the above can get incredibly irritating (literally) & frustrating.
My List of Environmental Triggers
Stress - I cannot tell you how important it is to stay on top of your stress. I’ve just been through around 3 years of serious inflammation which led to surgery, and the ongoing trigger for this was stress. I had to make serious changes to my life to stop this trigger.
Upset Gut - Gluten, dairy and the nightshade family tend to be triggers for inflammation along with too many processed foods, especially sugar. I have had tests done which have come back negative, but changing my diet has helped me manage my flare ups. Food poisoning is obviously another serious issue.
Being Run Down - Sleep is so necessary when you suffer from any illness. Even more so when you have a body that is keen to attack itself. I need to make sure I get enough sleep. Ideally 8 to 9 hours every night to help keep the beast at bay, otherwise I get run down pretty quickly.
Fragrance & some Chemicals - These can trigger inflammation of my skin.
Lack of Exercise - Exercise is another element that is great for your mental and physical health. I only started doing regular exercise recently and couldn’t believe the benefits! More about that later.
Not Stretching - This is brilliant for relaxing and preparing for a good night sleep. Keeping your muscles loose and relaxed helps to alleviate pain from stiff and tight muscles of the hips, lower back, knees and legs.
My journey to eventually discovering Myotherapy was a long and arduous one, filled with lots of pain, disappointment, frustration, nights of crying myself to sleep and days of pushing through the pain. It involved boxes and boxes of over the counter pain killers and anti-inflammatories. I knew it was not a sustainable lifestyle so tried anything and everything.
It took me 18 years before I found myself walking into my 1st Myotherapy appointment. I was skeptical as hell after all the let downs and desperate for relief. I still had hope that this would be as good as I’d been told and even possibly the answer I’d been searching for.
Previous to this moment I had been searching during those 18 long years for the right type of therapy that would suit me. My biggest issue at the beginning were my tight hips which at their worst, would leave me only being able to shuffle around due to pain. This tightness also caused continued interrupted sleep for many years. At times it was so irritable it caused pain from rolling over in the night. Some days I’d also need help getting out of bed in the morning or up out of seats due to the stiffness and immobility.
The Therapies I Tried
Although I learnt a lot about my body with different therapies I was left feeling I needed more relief from my symptoms. I had two Chiropractors with the second doing a full body scan to see if there was any underlying issues, but it all came back clean. This was actually helpful because it showed me my issue was muscular and not skeletal bringing me one step closer to an answer. Then I tired a Bowen Therapist through my Naturopath at the time. Then saw a Musculoskeletal Therapist, an Osteopath and did Pilates where the instructor taught me a really important stretch for the hips which still sees me through now. I also tried relaxation massage. None of them gave me the long term relief I was looking for so I gave up. I decided to save my money and not see anyone for around 8 years relying only on that one hip stretch to give me relief.
However in those 8 years I began suffering from painful knees which also started to inflame when I did any sort of vigorous activities. On top of that I started getting recurring headaches that became more and more frequent, stronger and longer lasting. Sometimes my headaches would last up to a week. In the end I was basically getting a headache weekly to some degree.
Eventually I had enough of being in constant pain. I was again heavily relying on painkillers and anti-inflammatories to get me through which I hated. I wanted to enjoy a holiday I had coming up in Hawaii, so I reluctantly booked my 1st Myotherapy session. Myotherapy had been recommended to me 18 months earlier but honestly, that’s how I found all the other therapies I had tried, so I expected to be disappointed again.
How Myotherapy Changed My Life Forever!
After 4 weekly appointments my neck and shoulders were released and I had stopped taking painkillers for 3 weeks! Muscular tightness of my shoulders and neck were the cause of the headaches. I couldn’t believe how simple it was. It was ridiculous how long I’d put it off! I still get the occasional headache now due to my work as I’m in front of a computer all day, and my posture still isn’t always the best but I can mange and control them now. There were also a lot of environmental factors at play which were causing the tightness in my shoulder. Stress being one of the causes. Serious life changes had to take place to stop this trigger which took around a year but since that shift I haven’t looked back.
After such an incredible response to the Myotherapy sessions I decided to bring my sore knees into the mix since my upper body was doing quite well at the time. I had nothing to lose right? Again I had no real hope due to being burnt in the past by Doctors who said there’s nothing wrong with them except they’re tight and then giving me two sheets of paper with four exercises on it which did nothing! I assumed some complication from my HLA-B27 was the reason and I had accepted my fate.The treatment for my knees was equally simple. Release my tight hamstrings, quads and hips. Boom! The profound effect it had on my life has been nothing short of miraculous!
The 1st session I had was so excruciating that it felt like the last 18 years of deep pain was being released in 1 hour. It was a seriously emotional experience for me and I’m not an emotional person. There I was lying with my face in the hole on the table crying from the pain and grieving the lost years of my life which I could’ve avoided if I’d just known about this treatment in the beginning! The what if’s can really hit you hard. The crying continued heavily in the car all the way home, but as I continued with the weekly sessions, I was also experiencing real happiness which I hadn’t felt for such a long time. The following month or so I experienced deep release of both physical and emotional pain. I let the past go and moved into my new future and new self. The hope I felt of being able to control my symptoms and pain, was finally tangible which lifted my spirts. I was the happiest I’d been in years and people started to notice.
I also experienced insane amounts of energy. I was out of control. I was at home downloading YouTube videos of workouts to burn the excess energy just so I could tire myself before sleep. Prior to this I never did workouts at home ever! In fact I was not a person who deliberately exercised at all. As far as I was concerned, it was boring and just caused more pain. Of course I was also worried exercise would trigger an inflammatory response which I couldn’t switch off.
I was telling my Myotherapist about how much energy I was experiencing so he suggested I should take up a sport or exercise. I looked at him blankly. Really? Me? The last person at school to be chosen to be on the team? The one that always sat on the bench to keep it warm? He didn’t know me or my sporting history which was a good thing, meaning he didn’t assume my limitations or lack of physical ability. So the suggestion sat with me for a few days. Then one day that week, I decided to run. It was something I’d tried to do a few years earlier but my knees put a stop to that!
I downloaded an app called 5K Runner which promised to take me from the couch to a 5km run in 8 weeks if I ran 3 times a week. I raided my wardrobe and found I had nothing to wear but old holey leggings and 9 year old sneakers. I even had to borrow a hoody on the cold days but even that didn't stop me. With my kit together I hit the pavement. The app uses interval training so you slowly progress to your goal. My first session was run for 1 minute then walk for 1.5 minutes on and off for half an hour. I barely could run that minute the first week. It was ridiculous how unfit I was! But it burnt my energy and more importantly I had…. NO PAIN!
My happiness went through the roof. I was unbearably contagious with my friends and family who were riding this journey with me. Who was I anymore? I actually didn’t know and neither did anyone else. I, the girl who bagged the fitness freaks was now one. Amateur as hell granted, but none the less seriously enthusiastic, I didn't let anything stop me. The freedom I felt when I ran was like no drug I had ever taken, legal or not. And I discovered the runner’s high. The feel good chemicals that exercise releases are the best happy pills and de-stressors I’d ever felt. My brain felt as clear as ever.
Now I was going to my Myotherapy sessions for sports massage to keep me running which made me laugh. I brought my sessions back to monthly as the pain was all released and he’d taught me how to stretch and even started giving me tips on the best exercises to do to strengthen my muscles so I could have better runs. I kept up with regular maintenance appointments with my Myotherapist over the next the two years. A great personal achievement was when I hit the 5k goal while in Maui, Hawaii. I ran along the beach trail at sunset on the 8th week just like the app had promised me. There will be a few wedding photos I accidentally photobombed along the way too. Sorry, not sorry!
My New Self and Future
It was the first personal achievement I’d had in my life that I truly had to fight for mentally and physically. It was the end of an almost 20 year journey. That goal was more than running 5K’s, it was the run that made me believe I actually could achieve anything I set my mind to. The freedom and hope I felt that day still brings a stupid grin to my face with tears in my eyes. It was my turning point. It still lights me up on the inside.
My next goal is actually with my Myotherapist! We’ve come a long way together over the past 2 years and he’s seen and helped me fight all the way. He asked if I’d be interested in running 15kms in a running event with him. I must admit I instantly wanted to say yes! Then self doubt crept straight in and I hesitated but only for a second! I remembered my Maui run and boom! I believed I could do it and agreed to run with him. My only hesitation was that I’d hold him back if he was going to run with me because he’s 25 and I’m 40! We agreed to just focus on personal best goals and not put pressure on myself. I instantly started running longer and longer until one Friday night in May I ran 15kms. It lightly rained the whole 1 hour and 20 minutes and by the end all I could smell was everyones dinner they were cooking. I was so hungry when I got home I immediately ignored my food triggers and ordered a pizza, garlic bread and chocolate mousse (I’m not perfect!) and when the delivery guy rang the door bell, I almost hugged him to death.
Unfortunately my Myotherapist injured his knee shortly afterwards so the run was placed on hold. Then I suffered a sever bout of food poisoning for 3 weeks in September which has seen me unable to run for almost 4 months now. I lost all my fitness and strength I had gained. I lost 4kgs in 10 days and struggled to put the weight back on. The severity of the symptoms left me with low blood pressure which one day in October, caused me to be rushed to hospital.
All I thought about was our goal to run 15ks. It kept me focused on getting better by eating a ridiculous amount of healthy foods and litres of water every day. I can happily tell you all my running gear is back on! I've started back using my App to keep me at a pace that won’t kill me to reach my next goal. So now the run is booked and the date is set. I’m running. I can't wait to cross that finishing line.
On a side note I also want to say, the healing power of touch through massage is incredibly powerful both physically and emotionally. It has helped me through my journey equally, if not, more importantly, than just releasing muscles. Massage releases both emotional and physical pain because it releases the feel good chemicals you need to bring a deep healing to your mind and body. Massage has the same effect as a good hug. It counteracts the negative chemicals you experience from pain & stress. It’s real and it’s powerful. Massage is like booking yourself in for an awesome hug.
Step out of the history that is holding you
back. Step into the new story you are
willing to create.
- Oprah Winfrey