Real Patient Voices: Medical cannabis, fibromyalgia, and me

Despite fibromyalgia affecting an estimated one in 20 here in the UK, countless patients report misdiagnosis, and feeling dismissed by their traditional healthcare providers when they explain the severity of their symptoms, and the impact they have on day-to-day life. 

“It’s all in your head” or “there’s nothing more we can do” are phrases many with fibromyalgia hear. The invisible yet debilitating nature of this chronic condition means the emotional toll can be just as exhausting as it’s physical symptoms. And this is something Rhona, Chaos and Helen know all too well. 

After battling the side effects of conventional fibromyalgia medications, all three turned to Releaf, desperate to find another option: medical cannabis. Since starting their treatment plans, all three have noted remarkable differences not only with their pain and fatigue, but in their energy, confidence, and quality of life.

While medical cannabis won’t work for everyone, for these three individuals, it has. 

Here we share more about their individual journeys: 

Rhona

Back in 2001, Rhona was in a serious accident: she was hit at 60 miles an hour while sitting stationary in her car. Her spine was completely compressed.

For the next eight years, Rhona continued working full-time in a physically demanding role, dealing with the pain and stiffness the best she could. But the pain felt never-ending, and her doctor initially diagnosed her with carpal tunnel syndrome. 

With her mood taking a dive, feeling constantly exhausted, and depression creeping in, it took another 7 years before Rhona found out what was in fact happening: she has fibromyalgia - a condition she knew nothing about before her diagnosis. 

She followed doctors orders and took the medications prescribed, from medications that alter the brains' perception of pain, to direct acting painkillers, to sleeping tablets - that was until the combination of these tablets led to serious complications that almost ended up in Rhona almost loosing her life. 

This is when she knew she wanted to try something different. 

During our interview, Rhona told us: 

“To be completely honest with you, I was sceptical at best about medical cannabis before I started taking it. I had tried cannabis in the past recreationally, and hadn't associated it with any level of pain relief whatsoever.

But, wow!

As soon as I started with my prescribed medical cannabis flower through the Omura vaporiser, there was pain relief. I'm not saying that the pain was totally gone, but I was able to straight away able stop using the morphine patches that were my main form of pain relief.

I was also able to cut out the sleeping tablets, which was massive for me. I hated the groggy, out-of-it, almost hung-over feeling that I had each morning after taking a sleeping tablet. I would wake up with a headache most days….

The very next day, I was able to get back out into the garden. I have always loved gardening, but for the few years leading up to starting with medical cannabis, I couldn't do it. The pain was too much, and my grip strength was almost non-existent. Same thing with cooking. I hadn't cooked in a good few years, my husband and I would just eat out. The fun of cooking was gone, replaced by pain and frustration. Not able to hold a potato to peel it, not able to stand for more than a couple of minutes, you know?

Now I'm back in the kitchen and the garden and loving it! I even mowed the whole lawn a few days ago, and felt great. I haven't been able to do that for years. It would quite literally take me four days to mow the entire lawn myself, and my body would hate me afterwards. The difference has truly been life-changing.

It will be two weeks this Sunday that I haven't had to take any of the pharmaceuticals, and I feel so much better... All I wanted to do was sit in the corner and let the day pass me by, but that's all gone now!”

If this snippet has resonated with you, and you’d like to find out more about how Rhona has been using medical cannabis for fibromyalgia relief - check out her full story on Releaf’s patient stories page. 

Chaos

Much like Rhona, Chaos’ fibromyalgia was missed at first. Initially diagnosed with tendonitis in her hips, Chaos said it took a while before her doctors were even willing to consider that something else might in fact be the cause. 

She’d start to get other pains throughout her body, one day it’d be her hip, the next it'd be her feet, then it'd be her hands. Her eyesight was impacted, she was constantly fatigued, and would often get an odd sensation as if water was running down her legs. 

She was given heavy painkillers like tramadol, which only seemed to help when the pain was mild, but still came with a myriad of side effects that did affect her - and at a full force. She was told nothing could be done to help with these side effects, and like her doctor just didn’t understand - or believe -  the intensity of her pain. So, she referred herself to a pain clinic. 

This was where Chaos finally received her fibromyalgia diagnosis, but the pregabalin she was prescribed caused the same severe side effects, and with the lack of physiotherapy services in her remote village in Scotland, plantar fasciitis developed and Chaos could barely walk. 

In her own words, “Luckily, it wasn’t too long after that when I found Releaf”

When speaking with Chaos, she explained:

“The entire process with Relelaf happened online and was so easy to book, which was a real surprise and a huge relief. It was so easy, and it was so nice to just think, "Wow, I don't have to even leave the house. I don't have to worry about how my pain levels are today"...

The doctor really made me feel at ease. He asked me all the right questions. About my medical history, my previous cannabis use, my lifestyle and current pain management routine, and what I was hoping to get out of medical cannabis treatment. He took the time to listen to me with zero judgement….

With fibromyalgia, there's actually nothing physically causing the pain - it's the nerve endings which are sending signals to your brain telling you "You're in pain!" and it just goes on sending these signals for no reason. So, what cannabis does is that it really helps to quiet those nerves down. It feels like it creates a 'barrier', I guess is the best way to put it. It really dulls the pain, and it also makes it, so I am not focusing on the pain nearly as much.

I used to really struggle with that, focusing on the pain. It was always at the forefront of my mind, and it started to affect my mood quite a bit. I was getting cranky, irritable, and snappy with people because the pain was just so bad. That lead to my depression worsening, because the last thing I wanted to do was socialise when I was in that state.

But since starting with medical cannabis, I've been able to get out and enjoy my days again, and I'm finding enjoyment in life again. I'm laughing a lot more. I mean, I'm just having a lot more fun.

The level of care has been absolutely brilliant from day one. The fact that I now have access to medical cannabis that has been specifically selected for my condition and that I know it's regulated, legal, and safe—it makes all the difference.”

Chaos went into much more detail in her full interview, explaining how her cannabis-based treatment plan is helping her fibromyalgia. Head over to her patient stories page to read more. 

Helen

Lastly, we’d like to share Helen’s story. 

At first, Helen thought the aches and pains in her joints and loosing train of her thoughts was all part of getting older. Household tasks like cooking and hanging the washing out were becoming tricky, and supporting her son who has a mental health condition became difficult. 

So, Helen went to see a specialist doctor, where she was diagnosed with fibromyalgia. 

Morphine was initially prescribed, but it made her very unwell. This was followed by codeine phosphates and amitriptyline, but the side effects never seemed to cease. Lastly came pregabalin, which Helen says was helpful to an extent, but the achiness persisted. 

That’s when she found out medical cannabis could potentially be an option - and so, she started to do some research, and turned to Releaf.

When we spoke to Helen, she told us: 

“I started to read up on the different medical cannabis clinics in the UK, and I really liked what I saw on the Releaf website. When I called the number, the support staff were incredibly friendly and helpful…In fact, every person I've spoken with at Releaf has been great, and the doctors are experts and know exactly how to help me….

Since I started with medical cannabis, I’ve made incredible progress with my pain, and my agoraphobia is basically gone. I’ve started driving again and doing errands by myself. At first, I was just driving around and coming home, but I eventually found the courage to actually go into town, park my car and go into shops. I haven’t done that in two or three years! It really works. It works with PTSD, the pain, and all my other conditions. 

Physically, there have also been dramatic changes.

I've been able to go up and down the stairs again, something else I haven’t done in years. Instead of just getting up in the morning and going downstairs and staying there all day, I can now go up and down the stairs as much as I want. I'm literally going up and down the stairs all day long, which is helping with my muscles in my legs…

Life can be about enjoying yourself - you work hard, and you play hard - but for me, it’s mostly about family. I want to be able to engage with them and help as much as I can. That’s what’s most important to me.”

To read Helen’s full account of using medical cannabis to manage fibromyalgia symptoms, head over to her patient stories page. 

Find out if medical cannabis could be right for you

If these stories have inspired you, and you’re keen to find out if medical cannabis could help you manage your fibromyalgia symptoms, head over to our fast and free eligibility checker to get an indication of whether you meet the criteria for a medical cannabis prescription in under a minute. Nine out of ten of those who inquire receive a prescription for cannabis-based treatments.

Or if you’re living with a different chronic condition that causes pain, anxiety, inflammation, poor sleep or low mood, and you’d like to learn more about which conditions qualify for medical cannabis, head over to our blog and education section for further reading.

You can access more first-hand accounts of real life patient experiences with medical cannabis by heading over to our Patient Stories page.