New member: some questions

[Ak4482]

Hi, I'm new to the board here, got diagnosed 4 years ago. I have a couple of questions about my RLS:

Is it common to have issues in the feet when having RLS outbreaks? Sometimes my feet feel like they are on fire when my legs get cranky.
Is it common to experience pressure points in the back of the knees as well during RLS outbreaks?

[ViewsAskew]

Hi, I'm new to the board here, got diagnosed 4 years ago. I have a couple of questions about my RLS:

Is it common to have issues in the feet when having RLS outbreaks? Sometimes my feet feel like they are on fire when my legs get cranky.
Is it common to experience pressure points in the back of the knees as well during RLS outbreaks?

Welcome - and let me ask you a few questions.

Now that WED/RLS is more common, it's also sometimes an incorrect diagnosis. These questions may help determine if your diagnosis was accurate.

1. Are your symptoms worse when at rest, when tired, when sleepy, when being lazy, or at night?
2. Are your symptoms removed by physical activity - yoga, stretching, walking, riding a bike - or by mental activity - crossword puzzle, solving a sticky problem of any kind, getting engrossed in anything?
3. Do you also - in addition to any physical sensation - have a STRONG URGE to move that may also feel like anxiety - that you MUST get up, move around, dance, walk, whatever?
4. What do you do that removes the symptoms?
5. How would you describe the sensations and symptoms?

Sorry for all the questions!

Now, to answer what I can.

Burning is typical of neuropathy - it often occurs in the feet. Neuropathy can be misdiagnosed at WED/RLS. BUT! RLS/WED can be secondary to neuropathy. That is - you have neuropathy and IT creates RLS/WED. So, it's really important to talk to your doctor about this.

Not sure what you mean by pressure points. I can say this - as a general rule, WED/RLS doesn't cause any other sensations or symptoms other than itself - it is usually an uncomfortable, icky, anxiety-laden feeling that is in the body (usually in legs, but can be anywhere) that makes the person NEED to move. The sensation can be considered painful, but pain alone isn't WED/RLS. It must be accompanied by this STRONG urge to move and the movement must resolve the symptoms (even if they come back as soon as you stop moving).

Hope this helps some. Looking forward to your response.

[Polar Bear]

Ak -- Some years ago before my WED/RLSL symptoms were under better control I often had a horrible burning feeling on the soles of my feet.
Although I could have WED at any time of the day the burning feet only happened when in bed.
This burning issue occurred with frequent randomness over a spell of several months - it no longer is a problem.
At the time I initially thought it was part of WED, then realised that it was likely another issue i.e. neuropathy.
It now happens very rarely.

[Ak4482]

ViewsAskew: thanks for the response, and let me answer your questions.

1. They are worst at night, though they can be bad during the day if I'm just standing in one spot as opposed to moving.
2. They are removed when I move, or if I'm fatigued, kicking and thrashing my legs to simulate moving. Funny you should mention mental activity, I'm not bad when I'm driving long distances but I'm a terrible passenger in part because I'm so focused on the road that I don't feel any symptoms.
3. I feel urges to move, as well as to flex my feet.
4. What really helps my symptoms is movement & rubbing my legs (though that's temporary).
5. Sensations are tightness in my legs, the sensation that my feet are swollen and/or on fire, as well as a creepy crawly sensation that feels often like my legs are itchy.

Hope this helps.

[ViewsAskew]

So, based on your responses, it's very likely you do have WED. The next question, then, is do you have WED alone or with something else - and which came first. It may not matter, but if you had neuropathy first, for example, getting it under control could remove much of the WED (the WED being secondary to the neuropathy).

The sensations are what's likely important. The creepy crawly? That's textbook WED. So is the itchiness. The swollen and on fire? That's very similar to neuropathy.

I wonder - can you separate them out? For example, are they always together or can they be independent or does one precede the other? Long ago, I took a drug that created neuropathy - initially I was very confused by it. I came to realize that anytime I had the neuropathy, it caused the WED to flare.

[Rustsmith]

I agree with Views that your responses to the questions sound a lot like you have WED/RLS.

Because you also have neuropathy, do not be surprised if you doctor prescribes alpha-2-delta drug, such as gabapentin or Lyrica(pregbalin). Both of these drugs were originally used to treat neuropathy, but have since been found to be effective treatments for some of the symptoms of WED.