My diagnosis of an autoimmune condition called Ankylosing Spondylitis

My diagnosis of an autoimmune condition called Ankylosing Spondylitis – How it began

In February 2019, I had what I then thought was an injury to my pelvis/sacroiliac joints that rendered me pretty much unable to walk without horrendous pain. Prior to this I was a very active person typically walking 1 hour per day minimum and rebounding on my mini- trampoline. On two occasions over the months that followed I had to move into my parent’s bungalow to be looked after as I couldn’t walk. Safe to say I was terrified, anticipating my future possibly needing a wheelchair.

I should also add that I’m a therapist practicing the Bowen Technique and Health Kinesiology so I know all about misaligned pelvis’ and backs, along with a myriad of other health issues but boy have I learned a lot over the past 15 months! I tell the story in brief of my diagnosis of an autoimmune condition called ankylosing spondylitis.

My diagnosis of an autoimmune condition called Ankylosing Spondylitis – Attempts to fix the problem

Most of my attempts to fix my “injury” didn’t work so I began looking at what was going on in my body more holistically. With advice from a couple of practitioners, I also looked at specific blood tests and an MRI to see if those could shed any light. I visited a myriad of different therapists over the course of the injury none of those resolved anything for me, in fact, some of them made things far worse. I want to add the only therapy that made my body feel comfortable for a while was the Bowen Technique administered by my steadfast friend and colleague.

How things progressed

With the help of the blood tests, MRI, and the advice from a couple of therapists I made the connection that I had massive amounts of inflammation in my body and particularly in my sacroiliac joints and spine. It stared in my SI joints and then progressed up my body into my thoracic which was so painful it landed me in A&E as I couldn’t breathe and later found its way into my Jaw and neck again so painful it landed me in A&E again. One evening I felt so ill I wrote goodbye letters to my partner and parents as I didn’t think I’d wake up! I’m not a dramatic person so this must have been incredibly scary to warrant such an act as writing goodbye letters! The final blow was when the inflammation went into my right eye another trip to A&E and a course of steroid eye drops to calm the inflammation which was diagnosed as Uveitis, the pain in my face and eye was intense.

The diagnosis

Several weeks later I received the devastating news that I was being diagnosed with a condition called Ankolysing Spondylitis a chronic autoimmune disease that attacks the spine. It is a form of axial arthritis.

That was that no explanation, no offer of any wise counsel simply that’s the diagnosis. As a therapist, I had already been exposed to this disease with a few of my clients. I was busy doing my research however and had a myriad of questions some of which were answered but most of them were not. My main question is why has this suddenly happened to me?

What caused this?

As a therapist myself I treat holistically so I look at the body as a whole rather than focusing on single parts. My condition was baffling initially as I was seeing it as an injury when in fact it was inflammation caused by the AS, caused by (?) I am still not sure and the medics can’t give me answers as to what triggers the disease. I am baffled as I am 44 years young with no prior symptoms. I have been super healthy and active up till now and fully intend to get back to that! The only thing that I feel was a major contributing factor to this being triggered is stress. I had a massively stressful and traumatic year prior to this one and I believe this triggered the latent condition, basically, it triggered my immune system to go on the rampage! I want to also add that virus and bacteria have a huge part to play in disease and symptoms like these and as yet this has not been explored by the medics in my case. I am however treating myself holistically for infection along with the inflammation.

How I am treating this disease

Over the past 14 months, I have tried various approaches to treating myself and with the help of colleagues in the holistic field. There are so many different symptoms with this disease that change literally daily. Some days I would wake up with inflammation in my toes and feet, other days with inflammation in my hip joints or knees.

My overall approach has been holistic. I am treating the inflammation as a whole using a very specific diet protocol called the no starch AS diet. This is impacting on my gut microbiome. There is a lot of research stating that people with AS have an overgrowth of a bacteria in the gut called Klebsiella. The premise here, therefore, is to starve this bad bacteria by reducing or cutting out its food source which is starch. Along with the diet, I am also using very specific supplements consisting of vitamins, minerals, and herbal remedies. I also use homeopathy both constitutionally and specifically for symptoms as they arise.

I have regular Bowen work which my body responds well to, I think because the Bowen I work with is so gentle and has such a big impact on balancing the nervous system.

Early on I also used something called Shockwave therapy administered by a wonderful physiotherapist, this helped speed up healing in my sacroiliac joints and hips. The same physio also taught me some amazing strengthening exercises called Foundation Training. These exercises got me walking again properly and after months of struggling, that was an amazing achievement! I still do these exercises daily and probably always will! I also stretch a lot probably several times a day and over the course of the day. It’s essential if you have this disease.

The other thing that I use daily is energy exercises, essentially these are based on my Kinesiology work and Traditional Chinese Medicine and the aim is to balance the energies of the body so that everything is working together in a cohesive way. The exercises I use are similar to Tai Chi.

My new website/resource

The desire to help people with health issues has always been a major motivation in my life. I trained as a therapist over 20 years ago and I will never tire of assisting people in their journey back to health. With this in mind, I felt a strong motivation to create something that could help people who are struggling with this disease or indeed other autoimmune diseases. I spent hours researching the disease and other autoimmune diseases, what foods to eat and experimenting in my kitchen with recipes etc. With all this research, self-experimenting and creating under my belt was born!