Amber's story: Fighting chronic pain and insomnia with a personally tailored treatment plan

Tell us a bit about yourself, your conditions, and what treatments you’ve tried in the past.

I was born in Canada and raised there. I moved to the UK with my son when I was about 26, so I've been here for 14 years. I work for the government, and I’m a mum with three kids. 

Since I was a child, I've always had problems with a sensitive stomach and chronic fatigue, as well as issues with chronic pain in my shoulders and joints. I also have irregular hormones which impact my sleep, so I don't sleep very much. I would say that three pregnancies have probably made my hormone issues worse. 

When I was in Canada, I would complain to my doctor about these issues. They tested my iron, my thyroid—all the regular tests Everything looked fine. There was no explanation for it. The clicking in my shoulders became quite painful, and my doctor just told me to take some ibuprofen. 

It wasn’t until after I moved to the UK that I was diagnosed with tendonitis and bursitis in both shoulders. I went to physiotherapy to help strengthen them, and at physio they gave me some pamphlets about connective tissue disorders like Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD). This was a revelation to me. I had rheumatology consultations and MRIs, as well as guided steroid injections, but the doctor told me it was all only a temporary solution and I would just need to manage my symptoms.

Connective tissue disorders are very hard to diagnose, with a lot of different comorbidities associated with it, which usually get worse over time.

It was great coming to the realisation of my problems. I finally understood that what I thought were isolated symptoms were actually connected. That was the moment when I started focusing on management rather than healing, because my condition is probably something I'll have to just deal with going forward. 

And how does your health affect day-to-day life?

The chronic pain really impacts my ability to interact with my kids, particularly pain in my knee, because the kids always want me to sit on the floor, and that hurts. Even when I have to bend down to zip their coats up can really aggravate my knee. 

After having my second child, I wanted to become more active, so I looked into activities that were good for people with connective tissue disorders. I started rowing, because the movements very controlled. With rowing, and it's been up and down—sometimes I'm just too tired, especially while working full-time and having kids, the fatigue gets me sometimes, so I don't feel like motivated to go out and be active.

After I had my last baby about three years ago, I tried going to the gym and using weights with very slow and calculated movements. There was a lot of pain involved. It’s kind of a vicious circle: I need to stay active to keep my flare-ups at bay, but if I’m not very careful, I can easily injure my joints. 

So,  how did your journey with medical cannabis begin?

When cannabis became legal in Canada in 2017, my sister started working at a few different dispensaries there. She’s not a medical doctor, but she received quite a lot of training about how medical cannabis worked to help people with chronic conditions - about the effects of certain cannabinoids and that sort of thing. 

My father has epilepsy, so my sister gave him some treatment options that seemed to really help him, and when I went back to Canada for Christmas last year, she was able to guide me to help manage my symptoms— especially my insomnia. I was always waking up at 12 o'clock, two o'clock, four o'clock, and then for the rest of the night I’d get no sleep at all. I’ve never tried prescription sleeping medications—I didn’t want to go down that path—but I’ve tried a lot of other methods to improve my sleep, and the only thing that ever helped me were the cannabis cookies I started making for myself. They were a lifesaver, and I found that I could sleep right through until about four a.m. without waking up.

When I came back to the UK, I first learned about Releaf through their marketing on social media.. I said, “Oh my gosh.” I didn’t even realise that medical cannabis was legal here. 

So, I started reading up on it, and I signed up with Releaf a long time before their official launch. In fact, I was one of the very first people to sign up. After the launch, my first consultation was eye-opening. Just talking to a doctor about cannabis and having them ask me, “What do you want your medical cannabis to do for you?” was different from anything I’d experienced before. 

Can you tell us more about your first experiences with Releaf?

At first, I think there was definitely a bit of apprehension, because there's so much stigma surrounding it. Just the idea of speaking to a doctor about medical cannabis felt strange to me, like I still felt a need to hide from it. I thought, “How is the doctor going to react?” but, in my first consultation, Dr Tang made it clear that I didn’t have to hide or be ashamed of the treatment.  

I could finally ask questions. I could say, “Well, I would like something for sleep, that's my main priority. Or, I want a treatment where I can function during the day, but not have throbbing pain in my knee. Or, I need something that's going to help me relax, but not put me to sleep.” At Releaf, I got advice tailored about what I needed for my specific conditions, which is much different from just hoping for the best with unregulated cannabis. Receiving lots of information about different strains and the strengths was so valuable because I didn't know about cannabinoids; I didn't know about strains. I needed someone to explain it to me, so I could understand.

Also, having the consultations regularly, and being able to say, “I didn't like this one. Is there something else?” is very helpful. There seems to be a lot of variety of what strains I can try, and there has been so much support from the Releaf team while I’ve been on my medical cannabis journey.

Has there been a noticeable difference in your symptoms since starting your treatment?

It's been life changing, actually, and in so many ways that I didn't expect. 

I use the medical cannabis oil for sleep, which has worked well. I also have the vape, which is great because I'm not a smoker. For my joint pain, I take a mixture of some stronger and weaker strains depending on what I need at that time. 

A common comorbidity to chronic conditions like mine is depression, something I've struggled with my whole life. If I start spiralling, my vape just relaxes me. I have more patience for my kids, and I'm not having such extreme mood swings. I also get IBS symptoms because of all my food intolerances, and it calms those symptoms right away. 

Having a prescription and being able to actually carry medical cannabis with me on holiday is also an unexpected benefit. I love to travel, but I get a lot of anxiety due to my general health. I have one flower that is mostly CBD, and it just curbs that anxiety immediately, which in turn calms my body. Often, when I travel, I get really sick, and then I'm unable to eat and can't leave the hotel room. Now, I know I can just have a quick vape to get me through those moments. 

I also like that the fact that I'm not dealing with opioids—my treatment is natural, and it's regulated, and I know it's not off the street. There's nothing that feels unhealthy about it.

Can you tell us more about travelling abroad with medical cannabis?

I've travelled with  my medical cannabis three times now: to Spain, Canada and France. I always kept it in my bag in the original packaging with my prescription and medical cannabis card. I never tried to hide it. It's always at the top of my bag, and security or customs have never, ever looked twice. I’ve had more problems taking children’s Calpol across the border - that they tested!

Of course, I do worry when I’m walking into an airport, and I want to be careful, because every country has different laws, but it has never been an issue for me. I've never even been questioned about it. 

I think travelling with medical cannabis is probably more common now than people think—it’s a legally prescribed medicine. 

The Releaf support team has always been fantastic about providing the travel documents I needed, even when I accidentally waited till the last minute. However, even if I didn’t get the documents on time, I don’t think it would have been an issue. I can access my account online and I have my medical card. I have all the evidence and it's all very transparent. That has given me peace of mind.  

Have you faced any stigma or concerns from others about your treatment?

It’s definitely still a taboo subject in this country, but we need to stop thinking about it as an illegal drug. It's a medication, like any other medication that you can get at a pharmacy, except with this one, you can tailor the way that you consume it. If you don't want to feel any sort of effects of the THC, you don't have to, and you can still get benefits from it. 

For me, knowing that my prescription is perfectly legal has given me a lot of confidence about the treatment. For example, at first, I didn’t feel comfortable using medical cannabis out in public. People walked past me and I felt their judgment, but it got to a point where I didn't care what people thought any more. I need this medicine, and people on the street don't know my life, or about how this treatment makes my life so much better. 

What are you hoping your treatment will help you achieve in the future?

My son turned 21 in December, and he's always wanted to go to New York, and so I surprised him with a trip at the end of January. I'm really looking forward to that. I am worried about my knee, because we're going to be walking around a lot, and my anxiety, but I'm going to take my cannabis with me to manage my flare-ups. I want to go out and eat lots of good food with him and not be anxious. 

Also, I’ve always wanted to compete in a rowing race, and the next time one comes around, I think I will do it. That’s something I've always been really reluctant to do, because of my health and because I can't train like some of the other rowers. But, I think I’ll just take the plunge. I want to get over that hurdle and conquer my apprehension about it.

Finally, what advice would you give to someone considering medical cannabis?

People might think it's hard to get approved for medical cannabis, but it's not if you’ve got a genuine need, and, it can’t hurt to have a consultation. Just be confident about your needs, and try not to worry about reactions from other people. You have to do what's going to help you the most. That’s how you will find a better life. 

For more information about medical cannabis treatments for this condition, please see medical cannabis for chronic pain.