Spinal Cord Injury and WED/RLS

[davisri57]

Since suffering a spinal cord injury while shoveling (electric shock sensation mid back), I have been suffering from severe WED/RLS. The symptoms involve one leg (sensation behind the right knee region) and on occasion the upper right torso area. I am taking 4-6mg of Requip which generally controls symptoms although I have developed some impulse control disorders from the DA.

I am curious to know if anyone has also developed WED/RLS resulting from a spinal cord injury and the level of its severity and types of treatments experienced.

Thank you.

[ViewsAskew]

So sorry about your injury. Are they pretty sure it's WED and not something else? I only ask because my brother, who had WED in his leg, started developing WED in his arm and torso. He just found out he has a genetic spine disorder and needs surgery and the sensations in his upper body he thought was also WED is not.

That said, many people over the years have said that they developed WED from spinal surgery or spinal injury. Injury in general - bone, particularly - seems to cause in increase in WED. No one has a clue why.

Recently, doctors figured out that some of the WED patients are not WED patients, rather they have small fiber neuropathy. I am not saying you have that - just illustrating how HARD it can be to differentiate these. They all have weird sensations, they keep us awake, we move to get rid of it. If your doctor is sure and you trust your doc, excellent. If you have ANY doubts that this is WED/RLS, ask for more tests.

For what it's worth, you're on a high dose of ropinerole given today's standards (did we talk about this in another thread? I apologize if I'm repeating myself). And, because you're having impulse control issues, it's definitely time to find another solution if you can. Some people's lives have been ruined by these drugs.

Because people tend to come when they need help, then go when things are going well, I can't recall anyone here that is active right now that has WED due to a spinal cord injury or surgery. If you search on it, you may find people who've posted in the past, though, and can read their stories.

[davisri57]

Thank you for your insightful reply. It is appreciated. The WED symptoms began the day I had the spinal cord injury. It was intense for several weeks and then leveled off but is still severe. While rare in occurrence, such injuries do cause WED/RLS. When I bend alot or engage in activity that stresses the cord, my symptoms worsen. My neurologist feels it is related to the injury which can not be repaired surgically. When severe, I need 6mg but can of get by with 4mg. Since I have impulse control disorders, I don't know what alternative drugs exist that can suppress the symptoms to allow for sleep. Do you have any suggestions? Thanks again.

[Frunobulax]

The WED foundation is a good place to start looking for alternate treatment options:
http://www.rls.org/about-rls-wed/treatment-options
Impulse control disorders can occur at any dose of a dopamine agonist, but some patients experiencing ICDs with dopamine agonists can tolerate dopamine agonists at lower doses.
Still, I would try to stay away from all dopamine agonists, at least for some time.

[badnights]

How long have you been taking ropinirole,what dose did you start at, and how fast did you ramp up to the 4-6 you're currently taking?

The risk of augmentation increases with higher doses of ropinirole, and even more if your blood ferritin levels are under 100 ng/ml. Has your WED gotten worse over the course of your ropinirole treatments? have you had your ferritin checked before or since beginning treatment? Comments by Hening, Early, Chokroverty and Allen (book) about DA augmentation:

"There is a concern that augmentation represents a significant disruption of the dopaminergic system that may become a major problem for the patients later in life. The delayed onset of augmentation suggests some slow but persistenly developing proces disrupting dopaminergic function. We assume that at some critical point this process stabilizes and does not continue causing dopaminergic disruption. But the delay in expression of the problem may reflect a slow, persistent process continuing indefinately. In such a situation the effects of this slow, persistent process could be masked for years by slow increases in doses of the DA's. It will take several years of extensive clinical experience treating RLS with these meds before we will know the long-term sinificance, if any of RLS augmentation"

There are three main classes of drugs used to treat WED, and although the dopamine agonists like ropinirole, pramipexole, and rotigotine (Neupro) are considered front line, some specialists think they should not be (eg. Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790 ) (you can get the paper by following the link at the bottom of this link viewtopic.php?f=5&t=4749&p=66971#p66971)

The other two classes of drugs are anti-convulsants, of which gabapentin encarbil (Horizant) is FDA-approved for WED, and opioids. There are numerous varieties of each, and off-label use is often the only way to get relief. Your doctor SHOULD know all this. There are lots of options, and you should definitely get off the ropinirole. And it will definitely be grievously hard, because WED gets worse for a few days or weeks after stopping a DA. This means you will need a doctor who will prescribe medication that can deal with the increased severity of WED that is caused by the withdrawal. Tapering just prolongs the agony but you're on such a high dose, you might need to.

I bet your doctor treats way more Parkinson's than WED.