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Ankylosing Spondylitis: More Than Fifteen Years of Pain to Finally Live a Better Life

Since 15, @Skartapuce, a member from Carenity France, has fought chronic pain, which has impacted her daily life. At 33, she is the mother of two young children. In this testimonial, she offers an insight into her life and how CBD has helped her manage her chronic pain. She also gives recommendations to those who are dealing with chronic pain daily.

How did you know you had ankylosing spondylitis? What were your symptoms?

My diagnosis of ankylosing spondylitis was made at the end of 2017 by a rheumatologist, whom I went to see, following the recommendations of a friend who is also affected by the same disease since my pain pain was similar to hers.

Can you tell us about these pains? How did they begin?

I always had back pain. I had scoliosis when I was little, so it was the cause of the pains.

But the pains really started around age 15 , with my hips. According to the doctor, it was hip tendinitis. I also had a pelvic tilt. In high school, I also had trouble concentrating and remembering things. It took a great effort for me to concentrate.

Later, toward the beginning of adulthood, I started having sciatica, but not medication nor rest helped ease the pain. Apparently, this was one of the consequences from my work, which was physically demanding at the time, but also the fact that I was very stressed did not help, I am sure.

I have always been very tired. I always told myself that this came from my work. I started my day at 5 in the morning and I spent my evenings sleeping. The sciatica never stopped. I could have an intense bout of pain without any warning... after doing something strenous or nothing at all. I hurt to the right, then to the left, then both sides at the same time.

Did you look for treatments to help ease this pain?

The doctors did MRIs, but they said it showed nothing ... I lost 33 pounds... nothing changed. I did physical therapy to improve my posture, massage, and mesotherapy. I also had orthopedic insoles made to correct a leg length discrepancy. I visited an osteopath several times.I took many anti-inflammatories, but after all of this, nothing improved.

Sciatic always returned... for weeks, months ... without stopping.

How would you describe the sciatica pain?

The pain was like permanent burns . As if they pinched my sciatic nerve raw. I also felt a lot of electric shocks that made me lose my balance and fall very often because of the pain. The pain began in the sacrum-iliac area and went down the back of my thighs (as if it were twitching inside, a constant cramp) to the calf. Sometimes, at the foot with permanent tingling. My leg gave me the feeling that of weighing a lot, like a huge piece of dead wood.

Then, I got pregnant and the pains stopped ...
Around the age of 30, I became pregnant with my first child, and during this time, there was no pain. I was so content . Then followed my second pregnancy, and more of the same... Painless... I have never felt so good in my body.

Unfortunately, with the two pregnancies, 4 days after the birth of my children, the pain from sciatica returned. I also began to suffer from an inability to breathe normal. Electrical nerve pain all over my back, shoulder blades, shoulders, and neck.

I would wake up at 4 am every morning because of the pain. Insomnia then set in. I wanted to cry all the time because no position would relieve the pain. I would end up sitting up the rest of the night. In the end, I spent almost three years sleeping half-sitting with a cushion. In the morning it was impossible to move my head . Neither lift it, lower it, or rotate it.

After these disastrous nights (bedtime became my biggest phobia), I ended up sleeping apart from my husband. I had a lack of sleep, I was bad. I had pain all the time, I was beginning to become a somber person ... someone I'm not A small state of depression followed because everything collapsed in my life.

Has chronic pain played a large part in your daily life?

Pains were an integral part of my life. I always had back pain. My life was built around, and I lived according to, my pain and fatigue.

According to the doctors, I was responsible for my pain... it was in my head.

How does pain affect your daily life?

Nowadays, pain does not affect my daily life.

Instead, the illness made me lose part of my life. To start, my work. It is difficult for a boss to have an employee who has constant back pain, who is sometimes sick or who comes to work with tears in hereyes , limping and gritting her teeth. It is difficult to be taken seriously when nobody can explain their problems. No doctor

It is very difficult to live with chroic pain and we only ask that you be tolerant, empathetic, that you support us, and help us in our daily life.

The pain deprived me of being a full and available mother . I reproached myself a lot for not having been able to fulfill my role perfectly for a time.

It also deprived me of a certain social life . We isolate ourselves when we have pain . It is difficult to make friends. It is difficult for friends and family to understand our pain or that we have pain when the same morning we could walk, run ...

How long have you been using cannabis for therapeutic reason?

I've been consuming CBD oil for almost a year . After doing some research on the Internet, and reading testimonials.

How has CBD oil helped you?

This treatment has changed everything. Before, I took Tramadol and cortisone ,and was waiting to start biotherapy (I was waiting to pass the necessary tests).

My nights improved significantly after two or three weeks of using CBD. Less nights waking up during sleep, easier to fall asleep, and less violent pains.

It makes me feel calm, less angry, and less at war with myself.

I want to also let you know that although CBD oil has helped me, it has not allowed me to do without the other treatments. I had to start the biological therapy in February of 2018, but I am using CBD oil, instead of Tramadol, in cases of pain.

Have you noticed any unwanted side effects?

I do not have any dependency. Sometimes I do not take it for several days, even for two weeks, because I forget about it. I am especially aware of this when I start to feel pain in my shoulder blades. When this happens, I begin to take it again... my daily drops and the violent pains become manageable , less important and more muffled pain. Three quarters of the time, the pain does disappear.

An anti TNF combined with CBD oil, in my case, is very effective.

What would you recommend to someone dealing with chronic pain?

What may work for one may not work for another.

I would advise them to take the time to listen to their body, surround themself with good people, find a specialist who cares and takes them seriously, but above all, to accept their pain... to not to be angry, not to think of it too much, and to not focus on the small symptoms that appear. Do not say that life is over.

I would tell them to adopt a positive lifestyle. To see the glass half full instead of half empty. Be tolerant too; do not forget that it is difficult for others to know what you are feeling when to the outside you look normal and your pain to them is invisible. We have all been this person who doubts a pain we do not see.

Open your eyes and rejoice in the simple joys of life and avoid stress, as well as people that could damage this state of mind. We still have a long life ahead and it is up to us to find the means to make it as pleasant as possible.

Rejoice in the simple joys of life; avoid stress and those that could damage this state of mind. We have a long life ahead and it is up to us to find the means to make it as please as possible.

Members, please feel free to comment, ask questions, and thank this member for their testimonial.

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

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on 11/5/18

Very informative!  I'm happy for you to have found a way to tolerate what you live with, and improve your quality of life.  I understand what you're living with re: people not understanding what you're going through.  It can be difficult, but gets easier when you have a better understanding of it yourself.  Drs. only take seriously what they are trained to understand.  It's a special doc that can rise above and use insight to look beyond the facts they do understand into the experiences of things they do not yet have a handle on.

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on 12/24/18

So glad you habe found relief! What a nightmare for you. More doctors need to consider cbd oil.

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on 2/11/19

Reading your testimony is relatable to my own. It's become difficult for me to work, now I have MS on top of everything else. I'd like to try CBD oil if I can find it but since I can't work I don't know if I can afford it. I can sure use a lot of prayer. 

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on 5/5/19

Its relieving to know I'm not alone when it comes to the location of pain. Mine started in my shoulders, like between my shoulder blades. Then moved on to my hands and feet. It's great to hear CBD oil worked for you. Before I was diagnosed, I used CBD oil to help with the pain, just so I could walk. At the time I didn't think it helped much, but I was in excursiating pain. Now looking back if I had not had it, then there was no way I could have kept working. Thank You for sharing your story.

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on 8/12/19

I would love to try the CBD oil but I have been told that some places where you get the oil are good and some are not so good. Could you point me in the right direction or website where you get your CBD oil?