Living With RLS and Battling Bureaucracy

During my tussle with restless legs syndrome (RLS), the only general practitioner (GP) who has been of any use was the doctor who diagnosed me with the condition. Over the last 20 years, I have dealt with 6 different GPs' surgeries with varying levels of success!

Like many of you, I imagine, I have been prescribed many medications for various medical conditions. Each one controls symptoms in more than one condition. Oxycodone controls pain for my fibromyalgia and hypermobile type Ehlers-Danlos syndrome (hEDS), alongside my RLS, which is also treated with pramipexole.

When these medical professionals are told to reduce the number of patients using opioids because of the rising number of deaths attributed to them, we are the ones who get caught in the fallout.

The impact of the opioid epidemic

When opioid deaths started to rise and illegal drug distributors were found to be selling them to people on street corners, they knew they had a problem. Pharmacies were broken into and their stocks were stolen. Genuine patients were selling them on the black market to raise funds for food rather than taking them to control their insurmountable pain.

All of a sudden, it was all over the news. Various countries were trying to control an epidemic of overdoses. Unfortunately, when these things happen, governments, in their infinite wisdom, call for medical professionals to cull the number of prescriptions given for these medications.

Difficult conversations with our healthcare providers

When we attend an appointment with our specialist, we receive the question, “Is this medication helping you?” I try not to sound too sarcastic whilst thinking, "Well, I’m not taking it for the fun of it, am I?!” The reply that comes out of my mouth is the far better, “Yes, it’s helping me a huge amount.” You watch as the cogs start to whir...

“I would feel much better if we reduced the amount of gabapentin and oxycodone you are taking.”

Alarm bells go off in my head, alongside the klaxon noise, having a conversation in my head whilst there is an overdue pregnant pause in the room. "I knew it was coming!" I think.

Spend a day or two in our shoes

The problem with the government and self-important medical bigwigs is that they often do not suffer from the conditions that these medications control. RLS is no joke! The pain you feel within your entire body needs to be controlled, not tickled by a feather and hoped away. It needs to be actually physically and mentally controlled – that is why so many are taking varied and multiple medications.

I think these judgmental people need to spend some days having our conditions! They have these machines that can effectively make a man feel a contraction – as many women say, if men had to go through with childbirth, we would all only have 1 child.

We need more compassion and understanding

If the Secretary of State for Health and Social Care (in the UK) could suffer each illness, individually, for just a day or 2, the decisions they make might take the people into the equation as well as the figures.

RLS, when uncontrolled, can lead to depression, and when everything gets too much for a sufferer, suicide has been known to be a possibility. Compassion and understanding should be the answer. Maybe more professionals need to hear this.