Ankylosing spondylitis: a painful and poorly perceived disease

Ankylosing spondylitis, Laurie, 24, has taken years to get a diagnosis and put words on his troubles. She testifies to her daily life as a young woman hindered by intense joint pain and often poorly understood.

SPA, three letters that changed my life. My name is Laurie, I have SPA, Ankylosing spondylitis, a poorly known and poorly understood disease that I want to do a little light today.

I was diagnosed in January 2014, I was 20 years old. However, I have been suffering from back pain for many years, but no one has seen anything. Physicians, physiotherapists, osteopaths told me that I had sciatica, that I was sitting badly, that I was not feeling well … In short, it was my fault. I was given an anti-inflammatory then it ended up going and coming back a few times later.

Initially, unbearable back pain

At the end of my BTS, I settle down with my boyfriend. The pains are still there and get worse, to the point of no longer being able to vacuum in our 30sqm. I talk to my mother-in-law, who advises me to consult her own rheumatologist, terrified by the story of my suffering. I explain all my problems for about 5 years.

She takes me out, gives me radios that seem normal, then gives me her first diagnosis: “It is possible that you have a rheumatic disease, nothing serious, there are treatments to relieve you, but we will check in taking a blood test “.

Rheumatic disease? But I’m not old! I look at her prescription for the blood test, in which she prescribes a genetic research of the HLA B27 for “suspicion of SPA”. SPA? HLA B27? I search information on the Internet … The search engine displays several pages entitled “Ankylosing Spondylitis” which detail this disease of which less than 1% of the French population is a victim.

A defective immune system, a disease that can not be cured

Spondy, as I call it – it is intimate now – is an autoimmune, inflammatory and chronic disease that affects the joints of the pelvis, spine and thorax mainly, but also the knees, the heels … All what are called big joints.

It is manifested by very painful and disabling inflammatory attacks. To sum up: Spondy is caused by the immune system that does not matter what! The body produces antibodies that attack the healthy tissues of the joints, resulting in inflammation and severe pain. Then, the tissues self-repair by ossifying little by little causing a loss of flexibility and mobility of the joints.

That’s why spondy is also called “bamboo column disease”

This refers to a vertebral column where all the bones have been welded together.

Worried, I hasten to take my blood test. Ten days later, I receive the results of genetic research: “HLA B27 negative”, so I do not have this famous gene. BUT, there is a but: all my symptoms coincide and I read everywhere that HLA B27 is not present in all cases of spondyloarthritis. The rheumatologist does not stop there and asks me to have an MRI sacro-iliac and spine-lumbar.

The assessment of the MRI falls: “Aspect of left sacro-illitis in inflammatory flare evoking a spondyloarthropathy”. The doctor tells us that it would seem that I have a SPA, that basic treatments exist but that this disease can not be cured and that I must see the rest with my rheumatologist.

Kine and anti inflammatories in high doses

I leave a little sound of the diagnosis and at the same time relieved to finally be able to put a word on my ills. My father who accompanies me explains to me that it should go, after all, I do not “risk to die”. I am silent, vexed, and understand that what is going to be complicated now is to receive the uninformed judgment of others.

Indeed, it is a disease that is not visible when you are not in a wheelchair.

But this happens in some cases.

I go back to see my rheumatologist with the results of the MRI. For the first time, she tells me about ankylosing spondylitis, explains what I already know a little and tries to reassure me. She chooses to be tested for other nonsteroidal anti-inflammatory drugs and prescribes physiotherapy sessions.

As for me, I try to tame this newcomer in my life, with every day a lot of novelties.

I am afraid of the evolution of the disease. Will I be able to do the job I want?

Will I be able to continue my studies? I’m so tired, and I’m in pain.

One morning, I wake up with a huge pain in my chest that goes down to the belly and extends to my back. I can not move, I have terrible pain and I can not breathe, I panic. I think stupidly that I have a heart attack! No, actually the spondy has reached my ribcage. I will have to get used to it. It will also be necessary for me to get used to asking for help to get up and move the days when I can not walk alone because the crisis is too strong. It does not happen often, but it’s frustrating when it happens. My companion is understanding and we even get to enjoy these situations.

In times of relapses, painkillers and opium derivatives

At the time, I tested a total of 3 anti inflammatories, but the effect is not optimal. The rheumatologist decides to make me switch to a heavier treatment: immunosuppressants or Anti-Tnf alpha, which should “calm” the madness of my immune system. I inject a first Anti-Tnf every month, then a second every week.

I have to be careful not to catch cold, to control the slightest infection because anti-TNFs reduce my defenses. I am more fragile and even more tired. However, it seems that my pain is subsiding, even if there are ups and downs.

At the same time, I continue my physio sessions regularly, to work my flexibility and massage the painful areas.

I try to improve my daily comfort.

For example, I bought a heating pad that I do not leave when I lie on the chaise longue of my sofa. I have a dry hot water bottle that I install under my back every night while sleeping, winter and summer … and too bad if it’s hot! Finally, I massage myself with a mixture of oily macerate of St. John’s Wort and wintergreen essential oil. But when it’s too painful and I’m stuck, I have to rely on powerful painkillers, the opium derivative.

On a daily basis, “I calculate everything I do to tire myself as little as possible”

Also, and it is certainly the most complicated, I dose and calculate everything I do to get tired as little as possible: my exits, my efforts … I must preserve myself because I know that my body will make me pay even if I must face the misunderstanding of my close entourage or farther away, at the risk of passing for a homebody or a hypochondriac. My companion supports me and little by little my family begins to understand what I live. I finally reach the end of my studies and validate my Master in Management of Tourism Industries. I am proud to have arrived.

Then I start looking for work. I know I can not do everything.

I can not stay long standing, I can not walk long distances.

I can not drive beyond one hour without my knee getting stuck or waking up my neuralgia … I then decide to ask for the RQTH (Recognition in Quality of Worker Handicapped), that I get, to cover me because I do not know what spondy reserves me.

The hope of research

Today, I have a job that I like a lot, in consulting to tourism companies. I had a few months better and I thought I was in remission. The rheumatologist decided to take a break with the anti-TNF to see how my body reacted. The pain returned, more or less strong and disabling depending on the day.

Three years after the diagnosis, I begin to accept this evil that eats me up and I sometimes manage to forget it! I also try to remain optimistic about developments in research. Maybe one day scientists will find the cause (s) of this disease and treatment to cure it? In short, the SPA is now part of my life, it is a ball that I try to make a strength because after all, it’s true, “we do not die.”

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