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Fibromyalgia Patient Stories

Ann-Marie Bard, Gillian Flood and Steven Spencer are the three patients, who have kindly chosen to share their stories with us and shed light on the frequently misunderstood condition of fibromyalgia and give hope to fellow sufferers.

Ann-Marie’s story:

Ann-Marie was a respected and accomplished full-time dental surgeon, having practised for over 25 years before she developed fibromyalgia.

In October 2018, she started to experience unexplained pain all over her body, but as is very common, she did not get a final diagnosis until March 2021. She eventually saw a rheumatologist, who was able to classify what she was experiencing as fibromyalgia. This only happened as a result of an emergency dash to hospital as she was in such crippling pain.

“I had a major flare-up at work and had to go to hospital, it was just terrible. I was in severe pain and couldn’t walk, this was by far the worst attack I had ever had. That’s when things became clear and having seen a rheumatologist, I found out it was fibromyalgia, causing my pain.

I was put on various medication such as steroids and pain killers. At first, these helped the pain slightly, but the side effects made me feel like a zombie, I had ‘brain fog’, exhaustion and I wasn’t able to drive while I was on them.” – Ann-Marie

Her fibromyalgia led to her losing the full use of her hands and she was left unable to grip, which meant that she could no longer perform surgery. This had a devastating effect upon her mental and psychical health.

It reached the point, that the side effects of these conventional medicines were becoming unbearable. She had first read about Dr Anthony Ordman, a well-known pain consultant and medical lead at Integro Clinics in a UK Fibromyalgia Magazine. Ann Marie decided that medicinal cannabis might be worth trying as a solution to her pain. After first seeing Dr Ordman, she immediately felt that she had come to the right place to help her deal with her condition.

“Dr Ordman made me so calm and at ease. I found the whole process so easy because I was speaking to someone who truly listened, understood everything there is to know about fibromyalgia and cared. He really went the extra mile, keeping my GP in the loop and letting them know exactly what he was going to prescribe. Speaking to him made me feel secure and that I was going to get the help that I needed.” – Ann-Marie

Ann-Marie was prescribed a mix of THC and CBD cannabis oil, which she found had a hugely positive and beneficial effect.

“The cannabis oil has helped me so much, taking it means I can actually get on with things like yoga, gardening and driving as there is no ‘brain fog’ effect. I can be present mentally, rather than being spaced out and spend more quality time with my family. For me, there are no side effects from the oil, it doesn’t feel like it did, when I was all of the traditional medications. The oil has given me my life back. Cannabis medicines really should be more accessible for everyone, they have changed my life and I believe they can help people in a similar situation to me.” – Ann-Marie

Ann-Marie believes that more needs to be done to raise awareness when it comes to medical cannabis. She thinks that the NHS should understand that it really is a substantial alternative to conventional medicines.

“I’m taking part in the webinar because I believe, ultimately, that this medicine should be more accessible. Fibromyalgia sufferers should have access to information about medical cannabis and I hope to raise more awareness of it, letting people know that there are other options than just traditional opioids.” – Ann-Marie

Gillian’s story:

Gillian was first struck down with unbearable pain when she was 32 years of age. Looking back, she believes the trigger was her emergency caesarean section, when she went into labour a day early with her twins. As a result, Gillian had a problematic open wound, which took three months to heal and it was during this time she first developed back, neck and shoulder pain.

In 2016, Gillian was rushed to hospital for an MRI scan after the right side of her body went numb and she developed facial paralysis. Her doctor suspected multiple sclerosis, but it was finally correctly diagnosed as fibromyalgia.

Gillian was offered traditional medicines to manage her pain, but the side effects were to so unpleasant that she preferred to live with her symptoms rather than take them.

“The drugs that I was being given to help with my chronic pain turned me into a zombie. Honestly, it was embarrassing. I would turn up to collect the kids from school and I was so out of it, that I’m sure people must have thought I had been drinking.” – Gillian

It was at this point that one of Gillian’s friends had told her about an article she had read on a fibromyalgia support page on how helpful medical cannabis can be in treating fibromyalgia pain. Gillian went to her GP to ask about CBMP’s only to find her GP completely dismissive and ignorant of their benefits. She made it her mission to seek out an approved prescribing doctor and get a legal prescription. Initially she started taking just oil before moving on to vaping flower, which she now uses throughout the day to manage her pain.

“Cannabis medicines have been a complete life saver for me. It is only recently that I have felt brave enough and empowered enough to talk about using them publicly. There is still a huge stigma and shame around them. There is such misunderstanding, even my GP was so ignorant and dismissive – she just shut down the conversation. This is so sad because she might have had other patients, who it could really help if only, she would be open to learning more about them.” – Gillian

Since using medical cannabis, Gillian’s life has changed and she is able to spend her time with her six children, five of whom have attention deficit disorder and need a lot of support. This has help take off Gillian’s husband, who previously was in charge of the family’s day to day life.

“Medical cannabis, which I now vape a small amount of around every hour and a half, allows me to function with a clear head in a totally normal fashion. It’s such a relief to have found an answer to my pain that doesn’t have side effects.” – Gillian

Gillian is an avid patient advocate and a member of PLEA (patient-led engagement for access) patient working group. She wants cannabis medicines to be available through the NHS for anyone who requires them and wants to see an end to the stigma surrounding patients and especially patients who are parents, using them.

“I’m really looking forward to the event and hearing doctors and other expert’s perspectives on the benefits of using medical cannabis for fibromyalgia symptoms.
Raising public awareness of fibromyalgia is important to me as I don’t think there is a lot of understanding about this condition , I’ve even been told by a physiotherapist that there was no such thing as fibromyalgia.

My advice to other fibromyalgia sufferers would be to never give up! I thought I was going to be left in horrendous pain forever after trying various medications that didn’t help and just gave me more to cope with through their horrible side effects. Now that I am prescribed cannabis, my pain is now far more controlled and that gives me hope for my future.” – Gillian

Steven’s Story

Steven first developed FSH Muscular Dystrophy in 2014 and was diagnosed in 2016 after an initial incorrect diagnosis of Brachial Neuritis. Then in 2015, he developed fibromyalgia, which restricted him to a wheelchair, when outside his home.

His FSH Muscular Dystrophy had caused him severe nerve damage leading to his arm dropping forwards at the shoulder and giving him huge pain. He was prescribed pain medication but had limited effects on his pain and had horrible side effects. So much so that he was taken off them leaving him with very little to treat the symptoms of his fibromyalgia.

“Fibromyalgia arrived during a very stressful period in my life, triggered by a car crash. Four months after the accident, I was admitted to hospital having difficulties with walking and pain in my back, hips and legs. I had already exhausted all other common pain killers because of the treatment I had already received for FSH muscular dystrophy, which had started a year before.” – Steven

Having come off these medicines, Steven then had six weeks of physiotherapy, which didn’t help and caused him great pain. After this, he was not referred to any doctors or for psychological help, which he should have been as per NICE guidelines. It was at this point that he turned to medical cannabis, and in June 2019, he received his first prescription.
Steven discovered that using medical cannabis allowed him to gain back his mental and physical strength. It allowed him to sleep better and recoup.

“I got my first medical cannabis prescription in June 2019 and it was the best decision I’ve ever made to treat my illness. Over time the brain fog that I was perpetually in receded. I can compare my fibromyalgia with a volcano, that was bubbling and active – the cannabis soothed and quietened it. It allowed my stiffness and fatigue to reduce, and my body began to recover and flourish. Whole aspects of my personality that had switched off returned. Mentally and physically, I was healing, and I had the space to be me.

The consistent quality and regular supply of medical cannabis as opposed to black-market cannabis, was vital. It allowed me to get a constant level of relief that allowed me to rebalance my vulnerable body and mind. With each month of use, symptoms would reduce or completely go and my kids all commented on the massive change in my energy levels.” – Steven
Steven will be part of the round table panel in the second episode of the webinar and will discuss why he believes medical cannabis should be more widely accessible for patients when conventional medicines no longer help.

“I want to help raise the profile of medical cannabis as an effective form of treatment for Fibromyalgia at the same time as helping to raise awareness of the condition. Because it destroys people’s lives, it destroys families, careers, takes parents, partners, friends & loved ones away from us and locks them in a constant cycle of pain, anxiety and fatigue. It is a very destructive illness yet mostly invisible because these people are isolated at home suffering & unable to talk about it. This webinar is an opportunity to shed light on the topic of fibromyalgia and bring more attention to this illness and exactly how it affects people.” – Steven

When conventional treatments reach their limit, our work begins.

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