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Fibromyalgia

“CBD is a constant warm hug of relief” says fibromyalgia patient fighting for recognition

Ferdia Mooney is currently campaigning in Ireland for a clearer definition of fibromyalgia and improved support

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Fibromyalgia: A black and white portrait of Irish activist Ferdia Mooney

Irish fibromyalgia patient, Ferdia Mooney, opens up about his fight for the condition to be recognised and how he finds relief in cannabinoids.

When it comes to diagnosing fibromyalgia, patients can find that it is a long and often frustrating process. Particularly as some of the symptoms can mirror other conditions leading to misdiagnosis.

These may include chronic pain, fatigue and sleep disturbance, as well as a spectrum of different symptoms including cognitive dysfunction and decreased physical function.

In a dáil debate, TD Gino Kenny from the People Before Profit party outlined that there is an estimated 90,000 to 180,000 people suffering from fibromyalgia in Ireland. Despite this, there are no nationwide or specialist treatments available. It is currently not included in the Medical Cannabis Access Programme as chronic pain is also not a consideration.

Fibromyalgia pain

Ferdia Mooney discovered he had fibromyalgia when he was 21. He had originally thought he may have rheumatoid arthritis after suffering pain in his hands.

“It started for me when I was about 14. It was my hands in particular and I found it very difficult to write. I play musical instruments and it became very difficult. I went through several GPs before I went to a rheumatologist who eventually ruled out everything else. I thought I had arthritis for years,” he explained. “It took me that long to get a diagnosis from the age of 14 to 21.”

Fibromyalgia: A small bottle of oil on a surface surrounded by cannabis leaves

Many fibromyalgia patients find that their symptoms such as chronic pain, tiredness or brain fog can be debilitating. In particular, the lack of sleep can seriously impact their condition heightening the unpleasant feelings of exhaustion and anxiety.

Ferdia said: “I haven’t slept in ages. At the minute, I think I’m on three weeks of just awful sleep. It affects every part of my day. It affects what I eat, how many times I go up and downstairs, my appetite, and my jaw. I’m a musician but I can’t keep up anymore. Even my hobbies are pretty much gone.”

Ferdia was prescribed different drugs for fibromyalgia but found he can’t take them. He has had a reaction to a lot of the different options including drowsiness and not feeling like himself. Despite this, he would welcome being able to take prescription medication if he could.

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“I’m very sensitive to pharmaceutical drugs as it appears everything makes me sick or drowsy. The one person in every 100 who has side effects, that’s me. One year when I started a new antidepressant, it caused me to have excessive sweating in the middle of one of the first heatwaves in Ireland.”

Cannabis and Fibromyalgia

Like a lot of patients, Ferdia turned to cannabis after trying it recreationally. He discovered, over time, that it helped him to feel better and more energetic.

He explained: “On the evenings where I had cannabis, I found that I had more energy and I was more pain-free. That stayed in the back of my mind. I used it very scarcely but I noticed the effect. I went heavy on CBD for mostly legal reasons. I hit a point where my pain was so bad for the first time where my fiancé’s mother, who is Brazilian, was so heartbroken by my pain that she went out and found me a cannabis doctor in Brazil.”

Ferdia has now been on a proper treatment plan for just over a year where he understands which strains help with different symptoms. He finds that CBD helps with the pain that he experiences, while THC allows him to get to sleep and feel a distraction from the pain.

“When it comes to THC, it definitely helps with energy. I have no doubt about that. CBD is a great pain reliever. CBD is the constant baseline, that constant warm hug of relief. I need it to get some sleep and kill my pain but it isn’t strong enough to kill my pain because it doesn’t distract me enough. THC kills my pain but it messes up my REM cycle which means it doesn’t put me to sleep. I’m stuck in this constant battle.”

Fibromyalgia: A black and white portrait of Irish activist Ferdia Mooney

When it comes to cannabinoids, different combinations work for different conditions or people. Someone may discover that THC potentially works better for them in comparison to just CBD. The most important part of starting medical cannabis or CBD is to discover the correct balance.

READ MORE  Cannabis consumption by pregnant women increased during pandemic according to new study

Ferdia is involved in not just cannabis activism but also, advocates for fibromyalgia patients. He is currently lobbying different ministers to get fibromyalgia recognised as a disability or long term illness in Ireland. This could mean more support for patients.

The current minister for Health in Ireland is Stephen Donnelly of Fianna Fáil, who Ferdia has been emailing asking for the law around fibromyalgia to be changed.

“Fibromyalgia has no legal standing in Ireland and is not considered a disability or long term illness. This has a knock-on effect that if I run through all the treatments then I have no more options available and all that is left is opioids. I have a history of alcohol and substance abuse because of my chronic pain which means I will never get those pills.”

“My whole thing is getting this on the list where it’s considered a long term illness. Then we can start pushing for more treatments or options. They are doing incredible things for people with fibromyalgia with ketamine infusions in America but I’ll never be able to get that here. But, if the condition has legal backing then it’s one step closer to getting in on the medical cannabis programme.”

So far, Ferdia has yet to receive a response from the minister that addresses his concerns or relates to his case. He says that Stephen Donnelly has so far just replied the basic definition of what fibromyalgia is and how the long term illness scheme works.

“The email from Stephen Donnelly opened with the definition of fibromyalgia as if I didn’t know what that was. He also explained the long term illness scheme, as if I didn’t know what that was. He listed the different ways that people with fibromyalgia can be reimbursed for their medication which I didn’t ask him. I also got a copy and paste reply about the MCAP programme.”

Fibromyalgia: A cbd oil bottle containing yellow oil has a dropper being placed into it

The Medical Cannabis Access Programme in Ireland (MCAP) was introduced in 2019. It can only be accessed for three conditions: cancer nausea, multiple sclerosis and epilepsy. There has been widespread concern about the programme as it fails to provide for chronic pain patients. There is also the ministerial license that would require a GP to prescribe medical cannabis but this can prove difficult. The cost of medication on the ministerial license may not be covered by any of the illness schemes leaving patients struggling to find ways to cover the expense.

READ MORE  UK Fibromyalgia hosts first webinar on medical cannabis and CBD

It was announced last month that CannEpil would be the first medication to be available on the MCAP programme from mid-October. However, there have been no updates since then and no public reports of families receiving the medication.

Ferdia, who works for Irish CBD store Little Collins, outlined where the changes need to be made.

“This government needs to change and it’s not just the ministers. It’s the whole system including advisors. Cannabis is coming to Ireland and it’s going to be strictly controlled by pharmaceutical companies. We need to keep the pressure on the government and we need to keep it going. It’s obvious that the government is trying to stamp out the CBD and hemp industry. That’s obvious by the number of products that are being seized.”

He added: “We need to stop giving up and hold on as we are so close. All of the CBD stores like Little Collins and Nurture by Nature or any company out there, need to stay in. We also need our customers to stick with us. A lot of customers give out about the prices but that’s because of how difficult it is to get it shipped in here.”

He also highlighted the need for education.

“What else needs to change is that we need to talk and learn. People have to realise that there is more to this plant than getting high. We need to come together because there is too much division out there with the different movements. We should be a beehive but we are hyenas fighting for scraps at the minute.”

 

Image credit:  Ana Duca 

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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.”

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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.

READ MORE  Fibromyalgia care: "Nothing has helped me more than medical cannabis"

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

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.

Fibromyalgia: A banner advert for the medical cannabis clinic

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

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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.’

READ MORE  UK Fibromyalgia hosts first webinar on medical cannabis and CBD

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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