Pain ordeal for Fife man with rare Ehlers Danlos syndrome

Fatal overdoses - mostly caused by heroin and other opiate-based drugs - have soared in Scotland, from 527 in 2013 to 1,330 in 2021.

Mr Wilson suffers from Hypermobile Ehlers-Danlos syndrome (EDS), a disorder which causes abnormally loose joints and steadily increasing disability over time.

READ MORE: Amputation limbo for Fife man whose knees dislocate 40 times a day

He currently receives 280mg a day of Sevredol - a tablet form of morphine - but has been told by his GP that they will be unable to change or increase the dosage any further when that becomes ineffective within the next three months.

His only other option would be to become a full-time inpatient for the rest of his life, but as Ehlers-Danlos does not reduce life expectancy that could mean spending decades living in a hospital potentially hundreds of miles from his family and friends.

Drug deaths in Scotland have climbed dramatically (Image: National Records Scotland)

READ MORE: The rise of NHS-run GP practices - and why it matters 

Mr Wilson, a former law student who lives with his mother and her partner in St Monans, said the situation is so desperate that some medical professionals have suggested he might want to consider ending his own life instead "while I still can".

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He said: "The GPs themselves have said to me - separate GPs on more than one occasion - 'your treatment is being affected by this drug death situation'.

"There are regulations coming out from NHS Scotland - coming directly from Holyrood and coming into Fife - that are basically squeezing prescribing.

"The drug deaths issue is a scandal, but there needs to be an option C. 

"I've had accidents trying to get to the bathroom because I've fallen and dislocated both my kneecaps, an elbow, a shoulder, multiple fingers and toes, all at the same time, and my friend or my Mum or my stepdad have had to help me put myself back together like I'm some sort of human jigsaw puzzle. It's disgusting.

"And it's my own GP saying to me that they would do more if they could.

"I'm having to constantly resist the urge to drink or take illicit substances that would give me some kind of pain relief.

"Is it any wonder people in this situation turn to heroin?"

In July 2022, the Scottish Government issued a Framework for Pain Management, which aimed to provide "safe, effective support" for patients with chronic pain.

It makes no reference to drug misuse deaths, but said that prescribing for chronic pain had increased 66 per cent between 2006 and 2016 and that "many of the commonly prescribed medications included classes of medicines for which there is less evidence for their prolonged use for non-cancer chronic pain, such as opioids and gabapentinioids".

It added that "there are also other risks associated with their use, including dependence". 

A Scottish Government spokeswoman said medicines "are prescribed based on the clinical need of the patient".

Robert Wilson, from St Monans in Fife, said he is terrified that his pain will become intolerable in the months ahead (Image: Gordon Terris/Herald&Times)

READ MORE: Scotland's drug deaths in 2021, broken down by graphs and maps

Mr Wilson, who has been on prescription opioids since he was 15, is fundraising for a disability-suitable home which could reduce his risk of falls.

He had previously pushed for both his lower legs to be amputated to give him relief from the daily dislocations which saw him using crowbars and mallets to force his stuck kneecaps back into place.

This has now been ruled out by a formal diagnosis of EDS last year as patients with the condition are at high risk of complications from anaesthetic and their wounds do not heal normally.

However, his disability is increasingly affecting other joints, and he fears what will happen when it spreads to his jaw bones.

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He said: "Elbows are the worst because of the nerves - it's like having someone stick an electrode in your arm and turning it up to 11. 

"But from what I've read, the jaw is the most painful dislocation anyone can suffer.

"In the case of EDS patients, in places like America, what they do is they pull their teeth and wire their jaw shut - for the sake of the patient, because of the pain and because every time they're dislocating their jaw they're fracturing it.

"All it would take is for me to land awkwardly on my jaw, dislocate and then they'd be talking about pulling my teeth, wiring my jaw shut and feeding me through a straw with my voice taken away.

"There's an attitude among doctors that 'we've got to be mindful of the future' - that there's a difference between prescribing lots of opiate medication to someone on their deathbed in the last weeks of their life, and somebody like myself who isn't terminally ill.

"But it will get to the point where I can't even wipe my own backside because reaching round will dislocate my elbow, my shoulder, or both, or leaning over will dislocate my hip.

"I've already been stuck on the toilet for an hour, two hours, longer.

"Sometimes they need to realise that it's better to give someone a couple of years where their pain is manageable than it is to try to keep them alive for 40 years."