CRPS and Restless Leg Syndrome – the double whammy

As if living with Complex Regional Pain Syndrome (CRPS) is not bad enough, many CRPS sufferers also suffer Restless Leg Syndrome (RLS).

What is Restless Leg Syndrome?

RLS is a disease of the nervous system that causes sufferers an uncontrollable and overwhelming urge to move or stretch their legs, although sometimes it can also affect their arms. This urge is often accompanied by highly unpleasant sensations in their legs and feet, often described as crawling, tugging, pricking, biting, gnawing, numbness or itching.

In an earlier article we considered the terrible effect that CRPS in isolation has on sleep. The ‘double whammy’ for those who additionally develop RLS is that RLS is usually at its worst at night. In addition to the unpleasant sensations, during sleep it causes involuntary jerking of the legs, further affecting a sufferer’s ability to remain asleep for any reasonable length of time. This swiftly leads to fatigue and exhaustion.

What causes Restless Leg Syndrome?

It is not absolutely certain what causes RLS. However, it is generally thought that an imbalance in the brain of a neurotransmitter called Dopamine is involved. There is also evidence that low levels of iron in the brain may be a factor.

RLS can run in families so some people may be genetically predisposed to develop the condition. One study also found that during pregnancy, 16% of women suffer RLS. However, people suffering certain medical conditions, including autoimmune disorders such as CRPS, seem particularly prone to develop RLS.

A personal experience

I asked a client who suffers both CRPS and RLS if she would mind sharing her experience. She says:

“I’ve suffered with CRPS for nearly 3 years and it wasn’t long after that the restless legs started. It only used to happen occasionally but now it happens every single night without fail.

“It starts earlier in the evening when I’m sitting with my husband. I have these really uncomfortable sensations and I have to try to find a more comfortable position but no matter what I do I just can’t get comfortable. As the evening goes on the sensations get worse and worse. It usually starts with a prickly feeling and then develops into a searing, burning pain. Eventually I have to stand up and walk around the room for some relief, but this aggravates the pain from the CRPS.

“Along with everything else I take Pramipexole. I usually try to wait until about 9 pm to take it as it has to be taken at least a couple of hours before I go to bed. This does help but my doctor has recently had to increase the dose as it was starting to have less of an effect.

“Things get really bad when I’m in bed trying to sleep. I just can’t lay still at all and the movement sends the pain from the CRPS through the roof. When I do eventually manage to get to sleep the twitching wakes me up again and getting back to sleep is usually impossible.

“I really can’t remember the last time I had a decent night’s sleep and I’m constantly shattered. I look in the mirror and I see a zombie. My husband has to sleep in the spare bedroom or else I keep him awake all night and there’s no point having two of us constantly exhausted.”