«
»

Top

Using cannabis for ankylosing spondylitis

Published 29 Oct 2018 • By Louise Bollecker

Since the age of 15, one of our French members, has been fighting chronic pain that has impacted her daily life for many years. At 33 years old, mother of two young children, our member confides in us her journey and the solutions that allow her to no longer suffer today.
Using cannabis for ankylosing spondylitis

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.

avatar Louise Bollecker

Author: Louise Bollecker, Community Manager France

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... >> Learn more

11 comments


JosephineO • Community manager
on 05/11/2018

@richard0804 Thank you for this reply Richard, it definitely is food for thought if taking CBD medication could lessen some of the medication you are taking. It seems to have a lot of positive effects for people who are suffering from chronic pain so it is always worth a try. I will pass on oyur lovely thoughts and words to our French member :)

@lesmal‍ Oh I am sorry about your rib pain, it is such an awkward place to have pain because then it hurts with laughter and all general movement. I hope that it passes soon :(


JosephineO • Community manager
on 05/11/2018

@EstelleM Hello Estelle,

I think you will find our latest article interesting, it has lots of information about CBD oil. Just click on this link.


JosephineO • Community manager
on 06/11/2018

@richard0804‍ I sent your lovely message to our French friend and she replied!

"Louise-B a big thank you for allowing me to be "visible" on Carenity in the world!

Our friend's comment is very, very moving. It moved me in turn.... By bringing a tear to my eye.

I am really happy to be able to bring him some hope...

I sincerely wish him all the best in reducing "his drug cocktail" and even to eliminate methotrexate, which is a rather heavy treatment.

I send him my best regards and lots of positive vibes for the coming decades.

I am very touched by all the people who recognise themselves through my words. We are all bound by our pains. We all suffer in the same way.

One thing is certain, we must remain optimistic and positive as much as possible.

Thank you to Carenity, today I no longer feel alone but fully surrounded, whether in my life, or here, with you.

You all contribute to my well-being!"


JosephineO • Community manager
on 14/01/2019

I am tagging some members who I think would be interested in reading this member's experiences with AS:

@StephenP198‍ @Peter1982‍ @Benjam23‍ @Kevin24‍ @JackieA‍ @tazzab‍ @Daisyduker‍ @grandmax3‍ @lynnsangel‍ @PaulSteve‍ @Mulholland48‍ @sandynige‍ @LondonF1979‍ @cmtspt‍ @painful247‍ @Dinky50‍ @cooperman‍ @BoneShaker‍ @madpete‍ @ladysadie‍ @diane_knox‍ @GloriaG‍ @Nattynoo89‍ @Wisewords1603‍ @Jacksie‍ @lucia.c‍ @LucieH‍ @MadAllie‍ @Terrypepper‍ @Nenenoo‍ @Omcneill13‍ @Ankyloo‍ 


GloriaG
on 05/05/2019

Thank you so much for posting these amazing stories of your struggles and how to cope. I wish with all my heart that CBD was available and allowable in my country. It is life in jail if found with this product here. I am going overseas soon to get my dose of CBD but only for a week. I wish I had a carer who understood my pain and inability to cook and clean for her. My daughter is in University but comes home when she can. Today ( Sunday ) the first thing she said when she arrived home was "how is the kitten" she rescued it after it was thrown from a car on the main road. But why not ask, "How are you Mum" I was so hurt. Yes Mum has to care for the kitten too..!! So I am looking forward to my week of sanity when I leave here to go overseas. This pain is unbearable and I cannot go anywhere for the right treatment.  OK Mum take another Tramadol and go to bed again. BP is 170/100 pulse is 120...whats next...a stroke or the release of it all, ending. I'm sorry to send this message but I am alone and need help, this forum gives me hope and I love you all and care about your suffering with all my heart...I wish you well....hugs...G

You will also like

Living life to the fullest despite ankylosing spondylitis

Ankylosing spondylitis

Living life to the fullest despite ankylosing spondylitis

See the testimonial
See the testimonial
Managing rheumatoid arthritis and ankylosing spondylitis

Ankylosing spondylitis

Managing rheumatoid arthritis and ankylosing spondylitis

See the testimonial
Relieve pain with hot or cold

Sciatica

Relieve pain with hot or cold

Read the article

Most commented discussions

Fact sheet