Connect with us

Pain

A ‘Fibro Warriors’ journey to accessing medical cannabis

Andie Willis has been battling with the UK’s healthcare system since the age of 16.

Published

on

fibromyalgia patient Andie Willis
Andie Willis recently appeared on Channel 5’s, How to Live with Chronic Pain

Andrea Willis, also known as Andie, has been battling with the UK’s healthcare system since the age of 16. Now in her 40’s she has found a treatment that works for controlling her pain and gives her a better quality of life.

Andie Willis, 49, lives with constant pain due to the debilitating condition fibromyalgia, resulting in symptoms including muscle spasms, a dry mouth and constant fatigue.

But fibromyalgia isn’t the only health condition Andie has struggled with from an early age. She has undergone several operations for her pelvic problems and a hysterectomy as a result of gynaecological issues.

Recently appearing on Channel 5’s, How to Live with Chronic Pain Andie shared her story and her battle with her health hoping to help and empower others.

Although she was initially told she had Rheumatoid arthritis, a chronic inflammatory disease that primarily affects the joints, Andie was sure she had been misdiagnosed.

The condition can affect people of all ages, but older adults are more at risk and swelling is common in this disease, something Andie never experienced.

After going back and forth to the doctors for almost five years, in 2011, she bit the bullet and took herself to a fibromyalgia specialist who eventually confirmed that Andie had the condition.

“For three months, all the medication that I took for rheumatoid arthritis was stopped, and in all honesty, I felt no difference,” Andie explains.

“After trialling lots of medications and experiencing so many adverse reactions, I finally settled with gabapentin.”

Andie started her blog, “Life as a Fibro Warrior”, in 2014, to share her own health experiences, in the hope of reaching out to help others.

Fibromyalgia patient, Andie Willis

Andie Willis lives with fibromyalgia and other health conditions

After a TV researcher came across her blog on Twitter, they approached her about taking part in a documentary about living with chronic pain, leading to her sharing her journey to accessing a medical cannabis prescription.

“It was only by chance that somebody read my blog on Twitter,” says Andie.

“She was a researcher who asked me about my journey living with chronic pain and how I felt about medicinal cannabis. I was keen to learn more and that’s how I ended up doing the documentary.”

The show documented Andie’s journey getting a prescription.

“I’d heard so much about medical cannabis and how much it helps with pain so I knew I wanted to try that route,” she says.

“I went through many consultations to determine that I have tried everything under the radar, in order to be prescribed medical cannabis.”

She adds: “At the clinic, everybody has been really supportive and I feel like I could never stop taking cannabis now. I’m still on my other medications but at this stage of my life I’m about to start reducing my gabapentin.

“I know that I’m only able to say that because I’ve had such a positive result with cannabis.”

Andie now medicates three times a day, saying it has helped her sleep better, controls her pain, as well as seeing considerable improvement in her IBS symptoms.

“Starting on medical cannabis has significantly helped me to sleep better and therefore, I feel less fatigue,” she says.

“I’m not claiming that all my conditions are under control, but it has certainly helped with many.

“At the moment, I take cannabis three times a day. My husband insisted on creating a spreadsheet, through which we monitor my dosage and keep a general record of everything in case I need to increase or decrease my medication.”

Since the documentary Andie has had dozens of people reach out to her about the possibilities of accessing the treatment themselves.

“Since the documentary, people have commented on my blog praising me for my courage. Many have plucked up the courage to call the cannabis clinic themselves and book their first appointment,” she says.

“Some feel apprehensive talking about it, but say they would feel comfortable speaking to me.”

“I know there are so many people out there who want to learn more about the benefits cannabis can bring, however, due to the stigma attached, it’s still a taboo subject.”

Due to a lack of access on the NHS, Andie funds her own prescriptions, costing £195 that covers her for just under two months, but she understands that the financial burden means it is out of reach for many people.

“It is financially and emotionally draining,” she admits.

Her son, who also suffers from Fibromyalgia, faces an additional hurdle. He can’t access a prescription because in the UK you have to show you have tried every available treatment before cannabis is considered an option.

“I can’t seem to figure out why the UK is so far behind,” she says.

“Despite laws that were enforced in 2018, only three people receive it on the NHS.”

Andie is now planning to celebrate her 50th birthday in Thailand next year, which she strongly feels she has only been able to plan as a result of medical cannabis improving her health so much.

Even though still struggles with her own mental and physical symptoms daily, Andie is dedicating her time to spreading the word about the potential health benefits of medical cannabis.

She adds: “If I can help just one person [in accessing cannabis medicines], I would feel so great knowing that I’ve done something right.”

READ MORE  “CBD allows me to function" - biker ‘died’ three times after freak road accident

Pain

71% of CBD users self-determine dosage without professional help

A large percentage of of those who use CBD for pain determined the dosage through trial and error

Published

on

A new survey has revealed that 31 per cent of respondents use CBD to treat pain – but found that 71 per cent of those do not check the dosage with professionals first.

The dosage survey conducted by industry watchdog, Leaf Report, reported that 22 per cent of 1360 respondents did not check their dose before taking CBD.

Almost three-quarters of those surveyed said they do not seek professional advice while 29 per cent did. A further 44 per cent decided the dosage themselves based on trial and error.

Dosage: A banner advert for Medical Cannabis Clinic

CBD-infused gummies, edibles, and beverages were the most popular method of taking CBD with a further 26 per cent preferring oils or tinctures. Vapes were the least favourite method of consumption at 10 per cent.

The survey asked a series of eleven questions about dosage and use. Among the findings, it revealed that 48 per cent of participants took the same dosage every time while 26 per cent do not check the concentration of their CBD products.

Just over half the respondents used CBD for pain with 31 per cent using it every day.

Lital Shafir, head of product at Leafreport said: “After our team reviewed the findings from the dosage survey, we realized that most users are not seeking out the opinions of professionals when trying CBD, which can lead them to negative experiences.”

“Our mission at Leafreport has always been to educate consumers on the many aspects of the CBD industry, and we want to offer educational tools like extensive reports for those who want to get away from ‘trial and error’ tactics when taking CBD.”

READ MORE  First clinical trial to study cannabis as treatment for migraine

Correct dosage and misinformation

This survey findings are similar to another conducted on cancer patients earlier this year.

The earlier survey of 100 cancer patients at an oncology care clinic revealed they are interested in trying CBD to allievate symptoms but lack information about how to take it. Both set of findings highlight the need for more education around CBD. The main symptoms listed were uncontrollable pain, depression and anxiety.

The survey of 100 patients at an oncology care clinic showed participants were interested in CBD as a way to alleviate symptoms. They listed their main symptoms as uncontrolled pain, depression and anxiety.

When asked about their understanding of CBD, 45 percent said they were unsure if there were any risks. A further 17 percent believe there was no or low risks but 25 percent “reported uncertainty of the alleged benefits of using CBD.”

Continue Reading

Pain

New UK trials to study medical cannabis and chronic pain

A trial at the University of Manchester will study cannabinoids in patients with fibromyalgia and chronic pain

Published

on

medical cannabis and chronic pain
A human pilot study will be launched in the UK, in coordination with the University of Manchester

A new UK trial will explore the effects of medical cannabis in patients with fibromyalgia and chronic pain.

US cannabis producer Flora Growth is set to begin clinical trials to explore the use of cannabinoids in patients suffering from fibromyalgia or chronic pain.

Primary research sites will be located in the US and the UK, with the hopes of fast-tracking traditional FDA and NHS timelines by running phase trials in parallel.

A human pilot study will be launched in coordination with an internationally recognised clinical research group based at the University of Manchester.

In addition, parallel molecular and pharmacokinetic studies will be conducted in the US with key scientists and colleagues of Dr Annabelle Manalo-Morgan, Flora’s lead scientific advisor. 

pain

“A paradigm shift is upon us where healthcare practitioners, researchers, patients, and adult-use consumers are starting to understand, accept, and embrace the therapeutic potential offered by phytocannabinoid-based medicine,” said Dr Manalo-Morgan.

“As such, there is an urgent need for more research to better understand the molecular and biochemical effects of cannabis at the cellular level, to begin to apply its implications as a pharmaceutical drug.”

According to an announcement earlier this month, Flora intends to work with government regulators, as well as academic institutions to initiate academic studies in order to reduce costs and develop new cannabis-based drugs.

​​It plans to “honour the traditional FDA and NHS route in scientific processes” to deliver cannabinoids for specific disease conditions, backed by data, with an initial focus on fibromyalgia, brain health, pain, and related research.

The firm’s immediate next steps are to submit data for ethics committee review, with further details expected upon approval.

Dr Manalo-Morgan added: “I’m extremely pleased that our team recognises the importance and necessity of this research, not only to create and bring to market novel pharmaceutical cannabis products for patients around the world that are more efficacious and have a superior safety profile compared to traditional and incumbent pharmaceutical treatment options, but to also enhance long-term shareholder value.”

READ MORE  Can CBD help ease symptoms of IBS?
Continue Reading

Pain

Pain and cannabis medicines – experts present at the Royal Society of Medicine

Experts in the field of medical cannabis present at the Royal Society of Medicine

Published

on

pain and cananbis medicines

Earlier this month, experts in the field of pain and cannabis medicines presented at the Royal Society of Medicine. Alex Fraser, patient access lead for Grow Pharma, reviews the event.

Real-life in-person events are few and far between in these days of Covid. This is just one of many reasons why we at Grow Pharma were so excited to be a part of last week’s educational event at the Royal Society of Medicine hosted by Integro Medical Clinics.

Aptly titled; Pain and cannabis medicines: Everything you want to know (but were afraid to ask), the event, held on Monday 11 October, was a day-long agenda of presentations from some of the leading experts in their respected fields, primarily medical cannabis prescribing, regulation, pharmacology and research. 

Grow was honoured be asked to sponsor the event alongside Aurora Cannabis, LVL Clinics and The Centre for Medicinal Cannabis.

As well as sponsoring, I had the personal pleasure of kicking the day off with a presentation on the history of cannabis and route to legalisation on prescription in the UK (not a brief subject to fit into 20 minutes). I was also asked to host one of the sessions later in the day introducing Integro’s stellar team of cannabis-prescribing specialist doctors. I’m still in awe to have shared a stage with so many individuals that I respect so much.

pain and cannabis medicines event

Alex Fraser presents at the RSM

It was fantastic to hear from Professor Raphael Mechoulam calling in via Zoom. The world-renowned Israeli biochemist, now in his 90s, discovered THC and the endocannabinoid system (ECS) and as such is a true legend in the field. Also speaking were the ever-passionate Dr Arno Hazekamp, an independent consultant with extensive experience in the field including seven years as Dutch medical cannabis pioneer Bedrocan’s head of research and the insightful Paul Chrisp of NICE, an organisation it would be negligible not to include in a high-profile medical cannabis event.

Paul Chrisp of NICE

 

READ MORE  Placebo effect of CBD could boost pain-relieving benefits

However, it was the clinical team at Integro that were most fascinating. Integro clinical lead and pain specialist Dr Anthony Ordman played the charming host throughout and gave a hugely informative presentation on the uses of different formulations of cannabis medicines. Integro Clinic’s specialist nurse, Sophie Hayes, gets a special mention for organising the impressive line-up of speakers on top of delivering a comprehensive talk on the practicalities of caring for patients prescribed cannabis medicines.

pain and cannabis medicines

Sophie Hayes, Integro Clinics

Dr Basil Almahdi spoke passionately about the potential of cannabis medicines in the treatment of migraines. Pain specialist Dr Sally Ghazaleh and gynaecologist Srinivas Vindla gave insights on the use of cannabis medicines in the context of women’s health. Neuropsychiatrist Dr Mayur Bodani presented on mental health and cannabis medicines.

Oncologist Dr Andrew Gaya gave a powerful talk on the use of cannabis medicines for patients undergoing cancer treatment. He also gave an important review of the evidence to date for cannabinoids treating cancer and reducing tumour size (an area where prescriptions are not currently allowed, and research is still in its infancy).

Dr Gaya spoke about the positive impact seen in one of his patients who had undergone six years of progressive cancer and various treatments finishing by pointing out that the patient was doing well enough that they were present in the room for the talk on their own case study (for those interested the patient has an anonymised Instagram account covering their journey since being prescribed cannabis medicines).

Dr Andrew Gaya

Dr Ayesha Mian of the CMC gave a talk on education for clinicians. Pharmacologist John Brew from cannabis-prescribing clinic LVL Health spoke about their focus on research. Dr Matt Brown was unfortunately taken ill not long before the event but was replaced last-minute by former colleague Eleanor Owen-Jones to give a perspective on clinical research in cannabis medicines.

Each talk was important, illuminating and insightful and, in the coffee breaks, lunch and drinks that followed, attendees, including doctors interested in prescribing, industry professionals from some of the world biggest producers of cannabis medicines as well as regulators, nurses and other HCP’s weren’t shy about expressing how impressed they had been with the whole day.

Among the many cannabis-prescribing clinics we work with at Grow, it does feel Integro have taken it upon themselves to lead the pack. Not only with events like this, but in their day-to-day practice and patient care. They are the only clinic that provides a Monday-Friday 9-5 nurse phone line to support their patients and, from speaking with patients on a daily basis –  often in relation to the good and bad experiences with the various clinics – I can’t remember a patient having a bad word to say of Integro or their team.

Since the event I’ve updated a list of cannabis clinics I use to help inform patients and noted the number of these now in the UK and Channel Islands has trebled since the start of 2021.

Nearly three years since the law change, it’s certainly been a long time coming, but with events like this and clinics like Integro, patients can be assured that they are in safe hands as medical cannabis in the UK starts to grow more rapidly. 

For more information visit www.integroclinics.com or email: Contact@integroclinics.com

CBD and CBG: A black banner saying that the content has been created with sponsors

READ MORE  Emigration: I'm prescribed cannabis for ADHD but can't travel home to Ireland
Continue Reading

Trending

Cannabis Health is a journalist-led news site. Any views expressed by interviewees or commentators do not reflect our own. All content on this site is intended for educational purposes, please seek professional medical advice if you are concerned about any of the issues raised.

Copyright © 2021 H&W Media Ltd.