How did you learn that you had ankylosing spondylitis? What were your symptoms?
My diagnosis of SPA was made at the end of 2017 by a rheumatologist, whom I went to see, following the recommendations of a friend, who also had SPA and whose pains were similar to hers.
Can you tell us about these pains and their appearance?
My back has always hurt. I had a scoliosis as a child so that was causing me daily pain. However, the pain really started around the age of 15 around my hips. According to the school doctor, it was hip tendonitis. I also had a pelvic tilt. In middle school, in high school, I also had a lot of difficulty concentrating and remembering things. I had to make a big effort to concentrate.
Then in early adulthood, I started having sciatica. But nothing could calm these sciatic attacks. Neither drug prescriptions nor rest. Apparently, it was caused by my work which was physical but also from the fact that I was a stressed person.
I was always very tired, I always told myself that it came from my work. I was starting work at 5:00 in the morning. So I spent my afternoons sleeping. The sciatica has never stopped. I could have pain all of a sudden, without warning, following an effort or not. I had pain on the right, then on the left, then on both sides at the same time.
Have you looked for cures for these pains?
I had MRIs, nothing... I lost 15 kilos, nothing has changed. I have done postural physiotherapy, massage physiotherapy, mesotherapy, I have worn orthopedic insoles to correct one leg slightly shorter than the other. I saw an osteopath several times. I took a lot of anti-inflammatory drugs. None of this has improved anything.
These sciatic attacks always come back to settle for weeks, months... non-stop.
Can you describe these pains for us?
These pains were like permanent burns. Like I'm being pinched by my sciatic nerve. I also had many electric shocks that made me lose my balance and fall because I was in pain. The pain starts at the sacroiliacs and goes down into the buttock and through the thigh and finally into the calf. Sometimes, up to the foot with a permanent tingling. My leg felt like a heavy weight, like a huge piece of dead wood.
Then I became pregnant and the pain stopped...
Around the age of 30, I became pregnant with my first child, and there, no pain. Pure happiness. Then a second pregnancy followed, and the same thing happened. No pain at all. I had never felt better in my body before.
Unfortunately, for these two pregnancies, 4 days after the birth of my children, the sciatic attacks came back. Except in 2016, they happened during the night. These famous sciatic attacks but also an oppression of my rib cage and it became impossible to breathe normally. Burns all over my back, shoulder blades, shoulders and neck.
Waking up every night at 4:00 a. m. because of the pain. Insomnia and crying from the pain as no position relieves me. So I spend my nights sitting down. In the end, I spent almost three years half-sitting with a pregnancy pillow. In the morning, it was impossible for me to move my head. Neither raise it, nor lower it, nor turn it.
Following these disastrous nights (going to bed had become my fear), I ended up sleeping far from my spouse, lacking sleep, being ill, having pain all the time, becoming dark... someone I am not. A small depression followed because everything in my life was falling apart.
So chronic pain was an important part of your daily life as a patient?
Pain was an integral part of my life. For everyone, I was the one who always had back pain. My life was made and lived according to my pains and this fatigue.
I resigned myself to my 30 years of having a life of pain, having back pain all the time. Because according to the doctors, I was mainly responsible and it was mostly in my head.
How does pain impact your daily life?
Today, pain no longer impacts my daily life.
However, this disease has cost me a part of my life. My work already. It's difficult for a boss to have an employee who constantly has back pain, who is sometimes on sick leave or who comes to work with tears in their eyes, limping and clenching their teeth. It is difficult to be taken seriously when no one can explain their illness.
It is very difficult for my spouse to live with, for any spouse to put up with this. There is added pressure on my husband as he is expected to be tolerant, empathetic, to support me and help me in my daily life because I am no longer even able to get out of the shower alone.
The pain has deprived me of being a fulfilled and available mother. I was very angry at myself for not being able to fulfill my role perfectly at one time.
It also deprived me of a certain social life. You isolate yourself when it hurts. We have trouble making our friends and family understand that we are in pain when that very morning we could walk, run...
How long have you been using therapeutic cannabis?
I have been consuming CBD oil for almost a year now. Following research on the internet, and what I read there as testimonies on the benefits of it.
What has this treatment changed for you?
This treatment has changed everything. Before that, I was taking Tramadol and cortisone, waiting to start biotherapy (I was waiting to have the necessary tests).
My nights improved significantly after two to three weeks. Fewer nocturnal awakenings, easier falling asleep, less violent pain.
I also felt calmer, less angry, less at war with myself.
I would like to point out that CBD oil has not allowed me to do without treatment. I had to start biotherapy in February 2018 and keep CBD oil as a supplement, rather than Tramadol as indicated by my rheumatologist in case of pain.
Have you noticed any undesirable side effects?
I have no dependency. Sometimes I don't take it for several days, even two weeks, because I forget. I notice this especially when I start to feel pain in my shoulder blades. And then I get back to it and take my drops daily. Severe pain turns into manageable, less severe and more dull pain. Three-quarters of the time, they disappear.
An anti-TNF combined with CBD oil is in my case, very effective.
What would you recommend to a patient suffering from chronic pain?
What may work for one may not work for the other.
I would advise them to take the time to listen to themselves. To surround yourself with the right people. To find the specialist with whom they will feel understood, taken seriously. But above all, to accept your pain, not to be angry, not to think too much about it either and not to focus on the slightest symptom that appears. Not to think that life is over.
I would tell them to adopt a positive lifestyle. To see the glass half full rather than half empty. To be tolerant too, not to forget that it is difficult to take into account an invisible disability when you do not have it yourself. We have all been this person who doubts when faced with a pain that we don't see.
To open your eyes and enjoy the simple pleasures of life. Avoid any stress and people who could interfere with this state of mind. We still have a long life ahead of us... it is up to us to give ourselves the means to make it as pleasant as possible.