Fibromyalgia and spinal pain: “Not having to use morphine is amazing”

Mary O Loughlin treats her arthritis, fibromyalgia and chronic pain with medical cannabis. She talks to Cannabis Health about living with these conditions, and the access issues facing her in Northern Ireland.

Mary O Loughlin has been diagnosed with many different conditions which contribute to her daily pain levels and ongoing fatigue such as fibromyalgia. Her first diagnosis with spina bifida occulta marked the start of her healthcare journey.

“I was born with a condition called spina bifida occulta which causes my spine to curve,” Mary said.

“Ever since I was a teenager I always remember having a sore back. I was then diagnosed with osteoarthritis.”

Spina bifida occulta happens when a person’s spine doesn’t form correctly in pregnancy. While it doesn’t usually cause any serious health issues, it can have side effects such as back pain, leg weakness and loss of sensation in both legs. It’s one of the more common forms of spinal bifida occurring in one in 10 people.

Mary was also diagnosed with arthritis prompting ongoing treatment which became part of her life. She was forced to find different solutions to avoid further complications or pain.

She explained: “It just became part of our lives and I lived with that for a very long time. I had three caesarian sections because they wouldn’t allow me to go into labour and give birth because of the pressure on my spine. It was just something we always dealt with.”

When Mary reached her 40s, she was diagnosed with fibromyalgia which left her exhausted. The combination of her spinal condition, fibromyalgia and arthritis was further complicated by surgery. She had two cysts removed from the left-hand side of her lower spine and collapsed discs repaired.

“Fibromyalgia causes muscle tiredness which leads to brain fog. If it gets to a certain time –  maybe 6pm – then I can’t even speak because my body is so fatigued.”

She added: “Three years ago, I had two discs between my hip and my leg collapsed and I ended up in a wheelchair for a few months with a leg extension. I needed a spinal infusion. The two bones were fused together using metal rods and screws. It was completely successful.”

Fibromyalgia and spinal fusion

Spinal fusion is a surgery to permanently connect two or more vertebrae in your spine to eliminate motion between them. Initially, the operation appeared successful and Mary was able to celebrate being back on her feet. However, she began to lose a lot of weight prompting testing.

“Over the last two years, I started losing weight. They did brain scans, colonoscopies, endoscopies and they even checked my mental health,” she said.

“They sent me for cognitive behaviour therapy (CBT) which I gladly went to as I don’t care if it’s mental or physical health as long as I am alive. My counsellor said I didn’t need CBT, I needed pain relief and support instead.”

Mary began researching alternative therapies desperate to find something that could provide relief from her pain levels. In a Facebook group for fibromyalgia patients, she came across Alan Richardson from Northern Ireland Cannabis Compassion Club who provides medical cannabis oil for patients.

She started taking the CBD he provided for her and describes it as “life-changing”.

“I had been asking my GP for five years to refer me for a prescription. I knew I had no chance of getting an NHS prescription but I kept on saying it because I believed that the cannabis worked,” she said.

“I knew if I took the oil an hour before my grandchildren arrived then it gave me background pain relief, relaxation and a little bit of energy.”

Mary faced a lot of stigma when it came to her cannabis consumption. Her husband didn’t agree with it. Also, no one in her social circle used cannabis. It caused a lot of hurt and pain when her friends initially blamed her weight loss on cannabis addiction.

“I started to really question everything during the summer because I was eating healthily,” said Mary.

“I knew my best friends were looking at me and blaming cannabis. That made me so angry. They Googled it and saw that weight loss is a side effect so they decided I was addicted and cannabis was doing this to me. They walked away and left me.”

Fibromyalgia and weight loss

Although the cannabis appeared to be working, it was unable to stop the weight loss. Mary’s doctors, becoming alarmed, ramped up her testing to determine what was wrong. They began to test her stomach, blood and bowels looking for different forms of cancer.

Eventually, she was diagnosed with a metal allergy from her implant. But this was not news to Mary, as she had always been aware of her allergy to different metals, something that was already recorded on her medical notes.

“I have been careful all my life but there was no test at the time. I don’t even own a bottle of perfume or body lotion, yet I let them put a lump of metal into my body and didn’t think what it was made of.”

Mary is now facing further surgery in the next few weeks to replace the metal implant with a carbon one that she is not allergic to. There is no option to just remove the implant as the bones would be unable to support the weight.

Going without cannabis is not an option for Mary. Her pain is highly aggravated by everyday events such as taking a bath and her weight loss contributes to the nerve pain she feels.

“I’m only six stone so my nerves are now raw. My whole body is agitated, it feels like it is being slowly poisoned.”

Access issues

Thanks to a legal prescription Mary has been able to come off her prescription painkillers, but she is still facing issues when it comes to accessing her medication.

Her prescription can get delayed reaching Northern Ireland and the product she has been using is often out of stock. This means that even when she finds something that works, she is often forced to try something new and it may not reach her in time, leaving her without medication.

“It’s a minefield. I don’t think I have had three months in a row where I have the same prescription without a stock issue,” she said.

“You may get a call three days after your consultant writes your prescription to say it’s booked but the product is out of stock or there might be a five to seven day lead time. You are left to go back to your consultant and get another prescription. The easiest thing to do is to pay another £45 to see them.”

Mary highlighted that this is a reason a lot of patients are leaving clinics, but she feels “trapped” as she does not have an alternative and does not want to return to the black market.

“Not having to use morphine is amazing. I’ve come off 50omg a day, along with 12 different medications over two and a half years. If I had to go back out to look for street cannabis again, I wouldn’t know where to go,” she said.

Despite feeling nervous about the upcoming surgery, Mary feels she finally has some clarity thanks to her medication being plant-based and not an opioid prescription.

“My anaesthetist who did the surgery inspired me to stop taking [prescription] tablets,” she said.

“Doctors can tend to disagree with cannabis medicines but he was very open-minded about it. When someone like that gives me good strength to start the journey then I just thought I’m going to keep going. My head is clear even though I’m really sick. My head is clearer now than it has been in 30 years.”