My journey to diagnosis – Ankylosing Spondylitis

Anyone who knows me, or follows me on Instagram will know that I was recently diagnosed with Ankylosing Spondylitis. It took me days to pronounce it, weeks later, I am still only just getting to grips with what it means.

My journey started over 9 years ago, but as a teenager, I had all sorts of stomach issues.  I was initially diagnosed with IBS after several elimination diets and various medical investigations. In my early 20s, I left art college in Farnham and went straight into a Graphic Design role and just told myself that a bad back was a symptom of sitting at a computer for hours without enough breaks. Gradually the pain got worse and saw my GP at the time and was told it was most likely ‘mechanical back’. I was young, under a lot of stress and working long hours, I just needed to take things a bit easier.

A few years later, the pain became so bad that I was signed off work for a week. Something I have never done before, but because I could barely move I finally accepted that I needed to rest. After days of my employer and a colleague refusing to accept that I had been signed off and sending me work to do from bed, I dragged myself back to the office and with no breaks, I just sucked up the pain. This is what I just continued to do throughout my working career.

It wasn’t just my back, some nights, I would go to bed and explain to my boyfriend (my now husband) that I was in so much pain across my chest, I felt ‘locked in’. Both my boyfriend and my doctor thought it was a pulled muscle and it would get better in time.

During pregnancy, my back was ok for the most part, however it began to flare up towards the end. It once took me 40 minutes to walk, aided with a stick to my husband’s workshop from our house with a cup of tea for him… this usually takes all of 2 minutes! I spoke to my midwife and asked to be referred to a physio, and was told that back pain was “common in latter stages of pregnancy” and I should “just grin and bear it!”.

My earlier doctor visits left me with more questions than answers. I was a healthy young woman when I started getting back pain and stiffness. Years went by in my role as a graphic designer, so I continued to blame it on that. Doctors did not seem to be too concerned about it and I was told over and over it was just ‘mechanical back’ and that the stomach and other aches and pains were simply down to anxiety and stress.

Some days I would get extreme fatigue. I used to get a lot of comments asking whether I had had a late night, but really I had had a good nights sleep and was just waking up feeling completely drained. I only really started pushing for answers once life began to settle down after my daughter was born.

When I stopped breastfeeding I would get awful aching across my back, ribs, and chest. I’d ask my antenatal group if they experienced anything similar and the answer was always no. I would often be in too much pain and too exhausted to go to the endless meet ups being arranged. After a while, I didn’t feel that I could talk about me and what was really going on.

By mid 2015, I was getting so tired that when I sat down to rest for two minutes during an afternoon, I would fall asleep and suddenly wake to my daughter talking to me. This simply wasn’t normal for a 32 year old with a well behaved child who slept reasonably well.

I went to see my doctor who did blood tests and discovered that my vitamin D levels were alarmingly low. This would obviously explain it all; fatigue, aches and pains as well as low moods. Vitamin D supplements worked for a while, but I still felt exhausted and kept having episodes of falling to sleep in the middle of the day. I was also getting stiffer, I’d put my feet up in the evening and it would take me about 5 minutes to bend my legs to get up, my knees would just lock… morning pain was excruciating. I was waking throughout the night and taking 20-30 minutes to get out of bed every morning.

I finally thought that it had all gone on long enough and visited my doctor again. I am fortunate enough to have a fabulous GP, she tested my blood for Rheumatoid Arthritis and Lupus, all bloods came back clear. In the meantime, she put me on the waiting list to see a Rheumatologist. I waited for a while for my appointment and when the day came, I had basic joint tests, was asked lots of questions and had more bloods taken. I was told I would receive an appointment for an MRI in a few weeks.

The day after my birthday, I went for my MRI. I had had one years ago of my spine that my father had kindly sent me for, having grown increasingly frustrated at the lack of answers for my back problems with a previous doctor. This time however, my MRI was targeted at very specific areas. A few weeks went by and I was soon back with my Rheumatologist, within moments of looking at the MRI report, she had pinpointed the problem.

After years and years of symptoms, I was diagnosed with Ankylosing Spondylitis with bilateral acute-on-chronic sacroiliitis. Blood work had revealed that I was also HLA-B27 positive. Not everyone with AS is HLA-B27+ and not everyone who is HLA-B27+ has AS. There is a connection, though and seems to be more likely to happen if there is an autoimmune disease in the family.

The cause is not known. However, there is a strong genetic tendency. For example, there is a strong association with a gene called HLA-B27. About 9 in 10 people with AS have this gene compared with less than 1 in 10 in the general population.

I had fully expected to go to that appointment and to be told that nothing had been seen on the MRI and that I just had a bad back. I usually take someone with me to appointments like this to take in information, but I was so sure this would be another ‘dead end’ in my chronic back journey. I left with a leaflet which would apparently have “all the answers I should need” and drove home in a daze. There was so much information, I offloaded on my OH as soon as I got home and called my parents and told them the diagnosis.

The medication I have been given takes the ‘edge off’ however, I am still in a lot of pain and have regular episodes of fatigue. There are no obvious external symptoms that can be seen in someone with this condition, so often I have to explain my difficulties to friends and loved ones. It is an invisible condition, so unless you know that I have it, you probably wouldn’t be able to tell, but thankfully, I have amazing people around me now.

It has been a few weeks since I saw the Rheumatologist and during those weeks, because I was alone at the appointment, I had started to convince myself that I had misunderstood what she had said and it would be something I would get better from, however yesterday morning, I received a letter that had also been sent to my doctor confirming the diagnosis and that is when it really hit home. I went and holed myself up at my friend’s house and she was incredible; not only is she training to be a doctor so has a professional insight, but she is also someone who is the same age with a lifelong, ‘invisible’ illness, so she knows about the emotions that come with a diagnosis.

So, here it is; I have a chronic, degenerative, inflammatory, rheumatic disease called Ankylosing Spondylitis (AS) and it has been a long, long, long journey getting to the point of being able to say that this is what I have and that it hasn’t been in my head all this time.

Ankylosing Spondylitis, (pronounced “an-kill-lo-sing spon- dee-lie-tiss”) is a chronic, degenerative, inflammatory, rheumatic disease.

What now? Now the journey really begins. As me and my friend discussed yesterday, a diagnosis answers all the questions about mystery symptoms, however, it is a complete mind field. I now have to decide how I move forward with ‘treatment’.

Exercise, good diet and general well being is key, there are also drugs available. Pilates which I already do is great, my diet is well balanced but as a mother, I know I don’t take as much care of myself as I should so that is something I need to address. I have already been through one pregnancy with AS, however, I have to ask myself if that is something I want to go through again. This condition can progress, it can stay as it is or it may even improve, but a question I have asked myself a lot over the last few weeks is if I want to go through sleep deprivation and lugging heavy baby gear around should things get worse. It’s also about the quality of time I can give the precious little girl I already have.

This is just the start of my journey and yesterday really was the day it fully hit home so there is a lot of research, decisions, chats and consultations to be had… I very much hope if you’re reading this or you follow me on IG and my blog that you don’t mind if I use this space to occasionally write about my condition. I have found very few personal stories online about living with AS, so I hope an area on my blog may become a place for others going through the same thing can gather information and support.

You can find more information below, as well as National Ankylosing Spondylitis Society (NASS)

What is Ankylosing Spondylitis?

(Pronounced an-kill-lo-sing spon- dee-lie-tiss)

Ankylosing spondylitis (AS) is a long-term, persistent (chronic) condition in which the spine and the sacroiliac joints as well as other joints and parts of the body become inflamed.

The symptoms of AS can vary but usually involve:

• Back pain and stiffness that improves with exercise and isn’t relieved by rest
• Pain and stiffness which will more often than not, awaken them in the early morning hours
• The spinal disease starts in the sacroiliac joints and may be felt as nonspecific buttock pain
• Pain and swelling in other parts of the body, such as the hips, knees and ribs
• Extreme tiredness
• IBS symptoms

These symptoms tend to develop gradually, usually over several months or years, and may come and go over time. In some people, the condition gets better with time, but for others it can get slowly worse.

Who gets Ankylosing Spondylitis (AS)?

AS most commonly begins between 20 and 30 years of age, but sometimes first develops in children and older adults. There may be a family history with two or more members of a family being affected. About 1 in 1,000 people in the UK develop AS at some point in their life.

What causes Ankylosing Spondylitis (AS)?

The cause is not known. However, there is a strong genetic tendency. For example, there is a strong association with a gene called HLA-B27. About 9 in 10 people with AS have this gene compared with less than 1 in 10 in the general population. However, having this gene does not mean that you will automatically get AS. Many people with this gene do not develop AS. Also, some people develop AS who do not have this gene.

How is Ankylosing Spondylitis (AS) diagnosed?

This condition is diagnosed from the person’s symptoms and X-ray or MRI pictures. Blood tests can be helpful.

How does Ankylosing Spondylitis (AS) progress?

Symptoms can vary in severity and usually come and go. Flare-ups of inflammation which cause periods of worse pain and stiffness tend to occur from time to time. The number of flare-ups that occur, how severe they are, and how long they last, can vary greatly from person to person.

In time, the mobility and flexibility of the spine may be reduced. This occurs as the inflammation and bony growths that occur cause gradual joining together of some of your bones.

What are the treatments for Ankylosing Spondylitis (AS)?

The aims of treatment are, to ease pain and stiffness, to keep your spine as mobile and flexible as possible and to limit the extent of any deformity.

Treatments include:

• Physiotherapy and exercise
• Medication
• Anti-inflammatory medicines
• Ordinary painkillers
• Immunosuppressant medicines

For more information, visit National Ankylosing Spondylitis Society (NASS)