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Fibromyalgia

Fibromyalgia care: “Nothing has helped me more than medical cannabis”

Andie Willis shares why she believes medical cannabis is the way forward for fibromyalgia patients.

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Fibromyalgia: A portrait photo of the writer Andie Willis

I will never give up advocating for medicinal cannabis to be available on the NHS writes, Andie Willis, a fibromyalgia patient whose son also lives with the condition.

For over 10 years I’ve tried all approved meds for fibromyalgia. I’ve tried multiple alternative therapies, and nothing has helped me more than medical cannabis. It’s not a quick fix or a cure, but for me, it’s the best thing available.

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I started a juice fast in 2014 for 60 days and that experience was very close to the improvement I’ve felt with medical cannabis. But I couldn’t keep that up. I have tried hydrotherapy, physiotherapy, acupuncture, osteopathy, and some I can’t even remember.

The thing is with alternative therapies is that the results, if any, were always temporary. Fibro was not going away and all I had/have was gabapentin, nortriptyline, morphine and co-codamol. I have other things going on with my body, but I sometimes think to myself, if I had been able to treat my endometriosis back in the ’80s or ’90s with medical cannabis, then maybe I wouldn’t have had nine pelvic surgeries. I eventually had all my reproductive organs removed.

Fibromyalgia: A portrait of Andie Willis and her son

Andie Willis and her son, Chris.

Fibromyalgia and medical cannabis

It’s been 14 months since I started my medicinal cannabis journey, and having my pain levels dampened down has allowed me to focus more clearly on what I need to do to be at peace with my body.

I still have fibro flares, I still have terrible ME crashes and I still tense up, but I will never give up advocating for medicinal cannabis to be available on the NHS. I’m waiting for it as I feel this is the way forward for fibromyalgia patients. My son has fibromyalgia; he is my driving force.

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If you’re even thinking about exploring this option, you’re on the right track.

I know the cost is a huge barrier for many but don’t let that stop you on your journey if you are in a position to do so.

Cannabis patients like myself have a tailored regime and what I pay may not be what you’ll pay.

We all deserve a fighting chance.

Andie Willis writes an in-depth blog about living with fibro and endometriosis, as well as her experiences with the healthcare system and medical cannabis. Visit her blog here

Thank you to Andie for sharing her experiences, if you would like to share your story with us, please email caroline@handwmedia.co.uk

Fibromyalgia

Fibromyalgia and medical cannabis: “I find my pain is completely gone”

Natalie began experiencing fibromyalgia pain when she was a teenager but wasn’t diagnosed until her 20s.

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Fibromyalgia: An illustration of a woman in pain holding an umbrella

Natalie talks to Cannabis Health about living with fibromyalgia and how cannabis has helped her with pain relief.

Fibromyalgia can be a debilitating condition leaving patients with chronic pain, fatigue and increased sensitivity. Other side effects can include poor sleep, cognitive issues and headaches. It is thought to affect around 1.5-2 million people in the UK.

Natalie was diagnosed with fibromyalgia when she was in her first year of teaching. She had been experiencing some of the symptoms since she was in her early teens but doctors told her it was growing pains.

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“Since I was about 12, I had a lot of pain that came and went with a lot of fatigue,” she explains.

“The doctor’s put it down to growing pains. When I was I was in my first year of teaching, one day I woke up and couldn’t do anything. I was incredibly tired and in so much pain.

“I felt that way for months and I was really struggling. I got my formal diagnosis from a rheumatologist. I had a lot of blood and strength tests to make sure I didn’t have arthritis or lupus because of the similar symptoms.”

Life with fibromyalgia

Once Natalie had her diagnosis, her life began to change. She quit her teaching job as it became too much to cope with when her symptoms were bad. She took on jobs where she could choose her own hours or work part-time.

“I ended up working as a children’s entertainer because it was good money,” she says.

“I could do it over a few days a week and make an acceptable amount of money to cover my bills. I did retail work alongside it.”

READ MORE  New study to explore effects of CBD on fibromyalgia

When it came to socialising, to stop herself from feeling isolated, Natalie turned to online communities to meet people and make friends.

“I’m not amazing at socialising, so I’ve always found it a struggle. I didn’t stay in touch with a lot of people from university or school because I also have mental health problems that held me back. This isolated me a lot so I did turn to online communities where I met a few people who I’m still friends with now,” says Natalie.

It wasn’t until she joined online fibromyalgia communities that someone suggested that cannabis may have benefits.

“I never really knew about its benefits, although I knew it would relax you,” she admits.

“People in my fibromyalgia groups said they used medical cannabis and found it helpful. It’s only really been the last few years where I’ve used it properly as a medicine.”

Fibromyalgia: An illustration of a woman using a laptop

Fibromyalgia pain

Cannabis may help with the pain experienced by fibromyalgia patients. A recent study on patients diagnosed with fibromyalgia and other inflammatory rheumatic diseases reported a reduction in pain levels following medical cannabis use. The study surveyed 319 patients about their use of medical cannabis products. Those with fibromyalgia reported a mean pain level reduction of 77 per cent while 78 per cent also reported sleep quality improvement.

Although Natalie has family members who use medical cannabis in legal states in the US, she hadn’t considered using it herself. Despite being open to the idea of a prescription, she says there was very little mentioned to her about pursuing it by her doctors.

“It’s weird because it’s almost like a whisper network. I would never have known about the private medical thing because it’s not really mentioned and the health sector doesn’t talk about it. They don’t actively tell you about prescriptions,” she says.

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Natalie has found that cannabis helps her most with the pain.

“A lot of the time, I get shoulder or lower back pain. If other people knew my pain level, they would have a different idea of what pain is, but I guess I’m used to it,” she says.

““Due to the way I work, I don’t use it until the evening. At the end of the day, I’ll use cannabis and I find my pain is completely gone. Sometimes, if I’m struggling then I’ll have a nice bath, have my cannabis and that’s the perfect combination.”

Cannabis Stigma

Natalie is guarded about her cannabis use because of the stigma but also due to her job. She is open with some of her friends but not her family. She chose to use only her first name to avoid being identified.

“My parents are from a different generation and they are quite conservative too. It’s very different for them so they don’t understand how it would help. My clients obviously don’t know, as some wouldn’t like it. [But] I have clients in the Netherlands who don’t drink but will go for a joint but it’s different for me,” she says.

“People still struggle to admit to taking medication because of the attitude. I’ve tried Tramadol, Xanax and all sorts of things that have more impact on how you feel, physically and mentally compared to cannabis. But that’s  acceptable because it’s prescribed by a big pharmaceutical company.”

Natalie feels that there is a lot to be changed in terms of education, so that people know the benefit of cannabis when it comes to conditions like fibromyalgia. She also highlighted that there should be more awareness of the options out there when it comes to accessing a prescription.

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“More people should be aware of the benefits of what it can do, rather than it being a niche internet topic or having a weird stigma around it,” she adds.

“Medical professionals need to be more aware of how it can help and the different avenues that people can go down to get prescriptions.”

 

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Fibromyalgia

Why better sleep may help medical cannabis patients with fibromyalgia pain

Patients using medical cannabis for fibromyalgia pain may benefit even more from a good night’s sleep

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Fibromyalgia: A tub of cream with a cannabis leaf on top. There is a leaf next to the tub on a marble tabletop

A new study has reported that patients using medical cannabis to ease fibromyalgia-related pain may benefit even more with a good night’s sleep

Fibromyalgia is a condition that causes widespread chronic pain and extreme tiredness. Some of the symptoms include widespread pain, extreme sensitivity, stiffness, fatigue and problems with sleep. It may also cause issues with cognitive function (‘fibro-fog’) and headaches.

The Canadian study stated that issues such as anxiety, sleep problems or depression can increase pain intensity and poor well-being. Medical cannabis may help with these issues helping to decrease the overall pain.

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The study involved patients who had started medical cannabis under the supervision of a physician between 2015 to 2018. A total of 2,068 patients had chronic non-cancer pain of which 308 (14.9 per cent) had fibromyalgia. The researchers examined the products, routes, doses and symptom variables of the patients at baseline then every three months for a year.

Fibromyalgia results

When it came to pain relief, most patients using THC and CBD reported ‘significant improvements in pain intensity and well-being following initiation of medical cannabis.’

The researchers also reported that reduced pain intensity was mediated by less negative affect and sleep issues. They discovered that the patient’s well-being was improved by a reduction in negativity and pain intensity.

They suggested that the findings show medical cannabis could be a good recommendation for fibromyalgia.

It was also reported that patients with higher levels of pain and negative affect tended to discontinue taking medical cannabis.

The study found that fibromyalgia patients were turning to the option after finding they were generally ‘poorly responsive to current treatments.’

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Cannabis for fibromyalgia

This study echoes similar findings from other fibromyalgia studies.

Earlier this year, another study discovered that female patients with fibromyalgia and chronic pelvic pain patients are switching to CBD to help with their symptoms.

Pelvic pain is a common symptom in fibromyalgia patients, although it is not understood how the two conditions are linked.

The 1,382 female participants in the study were given a survey distributed by the National Fibromyalgia Association in April and May 2020.

76 per cent of users said they were able to substitute CBD for other medications including opioids, NSAIDS, gabapentinoids and benzodiazapams.

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“Fibromyalgia destroys lives, yet it’s mostly invisible” – how medical cannabis can help

A new webinar will discuss fibromyalgia, arthritis and cannabis medicines.

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fibromyalgia
A new webinar will discuss fibromyalgia, arthritis and cannabis medicines.

UK Fibromyalgia, Integro Clinics, Primary Care Cannabis Network, CPASS and PLEA present a collaborative, two-part webinar, discussing fibromyalgia, arthritis and cannabis medicines.

An estimated 1.5-2 million people are living with fibromyalgia and 10 million with arthritis in the UK. The management of the symptoms of these conditions can take a long time to diagnose correctly and can take even longer before they are effectively brought under control.

This two-part series aims to educate attendees on the experiences and lives of those living with fibromyalgia and arthritis, as well as show the benefits that cannabis medicines and CBD can have in alleviate some of the symptoms of these conditions.

Steven is one of three patients, who will be speaking at the second episode of the webinar. 

He is a medical cannabis patient with fibromyalgia. He shares his story from first being diagnosed to gaining his medical cannabis prescription, and how his life has improved since then. 

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 Naproxen, Amitriptyline, Pregabalin, Tramadol and Baclofen. All 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,” said Steven.

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“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.”

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,” he said.

“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.”

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Steven will be part of the roundtable 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.

He added: “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. 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.”

Register for this free event here

If you would like further information or to speak to Dr Anthony Ordman please contact  Integro Clinics:  

Website: www.integroclinics.com

Email: Contact@integroclinics.com

Twitter: @clinicsintegro

Integro Medical Clinics Ltd always recommends remaining under the care and treatment of your GP and specialist for your condition, while using cannabis-based medicines, and the Integro clinical team would always prefer to work in collaboration with them. 

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