cause of RLS

[tagalongbuddy]

Hello, I am a new member but unfortunately too familiar with restless leg syndrome--my case is severe. My experience came on after a femoral nerve block with a knee replacement and then another nerve block when surgeon had to manipulate my knee. It was a nightmare and I couldn't rehabilitate properly. This was a nerve injury and the ramifications are with me to this day (7 years later) the severe restless started shortly after the surgery. I don't want to bore you with tons of details. It is an odd thing to have and even harder to explain to people. If anyone has any questions, I will answer.
God help us all.

[badnights]

Hi tagalong and welcome. This thing we have is indeed horrid and hard to explain. Are you saying you didn't have it at all before the surgery? Was a nerve was injured during the surgery? I would like to hear more about how you've been managing the last seven years. Are you on any medications for it?

[tagalongbuddy]

That is correct--I did NOT have RLS before the surgery. At first nobody knew what was wrong with me, I had horrible pain after the replacement (at that time I called it a nerve spasm) Everyone has pain so nobody took me seriously---I could not rehabilitate--the physical therapist couldn't help me with screaming pain so they scheduled me for a manipulation weeks later since my leg was locked up. I was given a femoral nerve block again, I went into a nerve spasm for the second time. After this I knew the problem was the femoral nerve block. It clearly was a nerve injury, not necessarily the anesthesiologist hitting the wrong spot but my body had a major reaction. After I stopped the pain meds, the strange symptoms of RLS appeared. The doctor said the pain meds masked the symptoms of RLS. I was put on pramepexole, did okay with that for several years except much fatigue. I am now on ropinorole and gabapentin. (and still extreme fatigue) I try to avoid riding in a car too long or sitting. At times I have to stand up in a movie theatre on the side because I'm in a reaction. I don't know how to describe it but my legs and feet are extremely uncomfortable and I have to stand and move. I have learned that early in morning I feel the best. As the day or evening gets longer I am more likely to go into a reaction. I make sure I don't miss my medication because the timing of it is so important to help PREVENT the reaction.

[badnights]

Oh that is so definitely WED/RLS, I cringe just reading your description. I apologize for not replying sooner, I had stuff happen and I only have so much energy before I stall out.

I have something in common with you, my RLS/WED also started after surgery. Well, I had it since I was a kid, but it was mild and intermittent. I had knee surgery (an ACL reconstruction) in 2007, and experienced bad RLS/WED symptoms DURING the surgery (I had a spinal). Afterward, I was unable to sleep well though I wasn't sure why. I didn't always have those symptoms, but I always had trouble sleeping. Almost a year later I consulted my doctor about it, and she suggested I might have WED/RLS. It took another year of seeing various specialists before that tentative diagnosis was confirmed.

The first medication I took was ropinirole and I augmented inside of three days. I was switched to pramipexole and remained augmented. I learned about augmentation myself, and brought information for my doctor to learn from. Enough about me.

If you haven't learned about augmentation yet, now is the time. Augmentation is caused only by the dopamine-type medications (levo-carbidopa, ropinirole, pramipexole, rotigotine). It's a worsening of WED/RLS symptoms - they start earlier in the day, they're more intense, they spread to arms and other body parts, and they start sooner after you sit or lie down. The medication seems to still work, but you end up taking it earlier in the day, and taking higher doses, which just worsens the augmentation, which makes your dose go up again, and so on. There is no end to the agony except by putting yourself through one last round of agony by stopping the dopamine-type medication. There is a withdrawal phase that consists of even worse symptoms. But afterward, everything is so much better.

Most doctors don't know about augmentation. They still prescribe dopamine-type meds right off the bat. Did anyone get your iron status checked, particularly your ferritin concentration?

Low ferritin is linked to greater chance of augmentation.

The most viable theory we have for what causes WED/RLS is low iron in the tissues of the brain. WED/RLS specialists have been finding that most of us improve significantly when given intravenous iron, but it's hard to convince any other type of doctor to arrange that for you! Oral iron can help a lot too, and you should probably be on it, as long as you aren't in danger of iron overload from a genetic condition. I recommend you check with your doctor about whether it's safe to take iron, and get your iron checked - you want ferritin (which is not normally requested), iron, TIBC, and transferrin saturation. You want a ferritin number that is over 100, but your doctor might tell you that it's fine as long as it's over 20. That's true for the general population but not for us.

You're right that timing is so important in order to prevent the symptoms from starting up. Once they start, it takes more med to get them under control. Has your dose increased a lot since you started? What dose of each are you on now? Do you feel that you might be augmented, given my description of it?
You can also click the link in my signature block to see a page of links about augmentation and iron. One of the items tells you how to access the Foundation's publications. They have some good ones about augmentation (although none actually convey the horror of it).