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.
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.”
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.
“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.”
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.
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.”
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.
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