Restless Legs Syndrome (RLS) Discussion Board

How would you guys describe your symptoms of RLS? At my last doctor's visit he asked me to describe my symptoms but I was at a loss for words. Best I had was I wanted to crawl out of my skin. Accurate but kind of bare bones.

That is one of the greatest challenges that we face when discussing RLS with our family, friends and doctors. Because there are no similar experiences, there simply are no words that convey what RLS feels like. If they have RLS, they know what it feels like and don't need to be told. If they don't, words cannot describe it.

In my case and partly because I am an engineer, I tell people that it like there is pressure building in my nervous system that makes me need to move. If I try to resist, the pressure keeps building until either I move or my legs will violently move on their own (which I haven't allowed to happen in many years). Although they can appreciate the insomnia side of RLS, they really cannot understand how I can go with very little sleep and then be fully awake and functioning during the day. Again, words simply fail us.

Several years ago, the RLS Foundation collected words about RLS that they used to form a word cloud. Words in the cloud included: Indescribable, Annoying, Excruciating, Relentless, Jittery, Annoying, Exhausting and Tortuous. That last word is sort of interesting because in Dr Willis's description of RLS in the 17th century, he described it as "torture".

I describe it similarly to Steve. It starts simply as an awareness of the body part - we normally do not think of our body parts unless there is something odd going on. Then there is an uncomfortable anxiety-like feeling. It actually makes me feel anxious in my body and brain. If I do not move (and I often move unconsciously as I am doing now as I sit here), it builds until there is an electrical feeling akin to putting a tongue on a 9 volt battery and either I am forced to finally move or my body parts move on their own.

So difficult for me to describe the symptoms, no words seem to be accurate enough to adequately describe the torture.

I can be sitting calmly reading and .... then there it is.... i don't know what 'it' is..... but it's a warning, a feeling but not a feeling, perhaps an intuition or an emotion, yes, a pre-sensation awareness and within seconds I'll have to start with a twisting of my lower leg/ankle but that won't last long. Before you know it my leg is up in the air - in and out, bending at the knee.

This is when at home of course. Give it 5 minutes and I'm up walking. Generally going to do a chore and make use of the time that I have to be up and moving. During the night, walking slowly isn't good enough which makes walking around the house not quite sufficient. So while I walk I'll be bending a knee and bringing it up towards my chest, or giving a few stretches forward/ stretches backwards.

Sorry, I side tracked there.
As for the actual feeling... So first there is the warning which when I read the post of Ann and Steve, yes I could describe the warning as an anxiety or a subtle pressure. This warning lasts a very short time. The actual rls feeling.... years ago I used to describe it as ants under the skin but that isn't accurate enought. I think Ann's description is what I can now relate to. Starts like a very low electric current, barely noticeable, and builds up. But not evenly all over. It is usually completely from thigh to ankle but not of an even tension. It can be front of the thigh, calf, both or one or the other, and can move around the limb. Rarely on the back of the thigh.

At this very moment while at my desk there is a very low key electric current feeling through my right thigh and also my right upper arm. I can manage at this level. It will however speedily build up, getting stronger, and then if I try to sit and work through it I will eventually have no choice and will jump up like an explosion, 'like a jack in the box' and stamp and stretch trying to find some control.

Generally, people will understand more easily the inaccurate description of 'ants under the skin'.

Like Betty, in the evening mine starts as a warning which tells me to get up, start walking or it will get worse and not go away with walking. But unlike most rls sufferers, mine is pain, not electrical (which I think would be worse). It starts as just a low sensation but can ramp up to about 8 on a pain scale of 1 to 10. It is an ache, not throbbing, just almost pure pain. If it gets really bad before it's time for my ropinerole I will take a 60mg codeine and even then it can take an hour to settle down.
A few weeks ago I saw a new doctor, a one year locum which rural areas of New Zealand are famous for. I gave him a synopsis of my medical history (no spleen, thyroid or parathyroids and bronchiectisis) but told him I was very fit and healthy and that my only concern was rls (He laughed and said I had bad luck, which I have had). I gave him a printout of January's sleep diary which showed most nights with about 4 hours of very broken sleep. We discussed drugs and I said codeine worked for me. He said something like "then what's the problem" and I said I only got 30 for 3 months so most nights were still bad. He said, that was easily fixed and gave me a new script for 1 per night. So, for the past two weeks, I've been getting about 7 hours a night which is wonderful. I've been having to retrain myself to go back to sleep when I wake up. Long may it last. I still get the pain in the car or evening if I dare to sit for too long.

Wow, thanks so much for the input/info. This is very helpful. Seems I'm not alone in my difficulty describing the symptoms of RLS. The gabapentin I'm taking works pretty well but occasionally I wake up in the middle of the night with full on symptoms. I'm not really a drinker (4oz of wine with Italian meals on occasion) but I just dash to the fridge after I've swallowed a cap or 2 of gabbies and down about 8oz of wine. The feeling is torture like my nervous system is attacking me with creepy crawly nano bots. I hate it. All I want is to stop it. The wine doesn't subdue the symptoms but it numbs me a bit til the drug kicks in. Thankfully this rarely happens so I guess I'm pretty fortunate.

Yankiwi wrote:Like Betty, in the evening mine starts as a warning which tells me to get up, start walking or it will get worse and not go away with walking. But unlike most rls sufferers, mine is pain, not electrical (which I think would be worse). It starts as just a low sensation but can ramp up to about 8 on a pain scale of 1 to 10. It is an ache, not throbbing, just almost pure pain. If it gets really bad before it's time for my ropinerole I will take a 60mg codeine and even then it can take an hour to settle down.
A few weeks ago I saw a new doctor, a one year locum which rural areas of New Zealand are famous for. I gave him a synopsis of my medical history (no spleen, thyroid or parathyroids and bronchiectisis) but told him I was very fit and healthy and that my only concern was rls (He laughed and said I had bad luck, which I have had). I gave him a printout of January's sleep diary which showed most nights with about 4 hours of very broken sleep. We discussed drugs and I said codeine worked for me. He said something like "then what's the problem" and I said I only got 30 for 3 months so most nights were still bad. He said, that was easily fixed and gave me a new script for 1 per night. So, for the past two weeks, I've been getting about 7 hours a night which is wonderful. I've been having to retrain myself to go back to sleep when I wake up. Long may it last. I still get the pain in the car or evening if I dare to sit for too long.

Such GREAT news!

Brynmr wrote: I hate it. All I want is to stop it. .

Yup. That is what I describe as the anxiety component. It takes over just about ALL other feelings and I am overwhelmed with a need to MAKE. IT. STOP.