Seasons Greetings to All!

I hope others on this board will be kind enough to answer some questions I have had for a while.

I would appreciate your help so I can understand my situation better.

This is a long post--mine usually are--and I thank you for reading it.

My RLS took 10 years to diagnose because it seems my symptoms are atypical. RSL creates pain for me, not twitching.

An aching pain that (most often) escalates and builds and increases within minutes of onset. For me, that is a cardinal feature--the pain continues to increase and increase in severity--unless I can get it to stop.

Would any of you describe your RLS symptoms as pain?

Even if your symptoms aren't pain, do your symptoms increase in severity during the course of a RLS episode?

Recently, I spoke with my sleep neurologist and he said there are currently RLS doctors specifically researching painful RLS (which is known to be less common--although not so much known by me--why I am asking you all questions). (Also, he said that maybe the underlying cause of painful RLS is different than the typical RLS associated with low iron in some area of the brain. This makes sense, because I never responded to the iron IV treatment.).

My RLS pain is in the back and sides of my thighs (worst on the left leg) and sometimes extends up my left buttock to my waist.

Anyone else have RLS symptoms not in their calves? My calves are very tight--like Charlie-horses--when I have RLS pain--but the pain isn't centered there--I don't consider my calves actually involved in RLS-- or only very peripherally involved.

And, I very, very rarely have any actual twitching. Do your legs twitch? A lot? Your calves? Or your whole leg? Both legs at once? One more than the other? Move involuntarily? Descriptions I've read on the internet aren't specific enough for me to understand what it is really like for most people. Please tell me.

I also wonder if any of you have looked into getting a Nidra device (now available in almost all states)? I've had mine since April and it works so well EXCEPT when the pain is very extreme. I'm curious if it works better for folks with twitchy RSL (instead of the painful variety). (I'm not knocking these bands--I now have frequent nights with no symptoms--and I credit the Nidra bands--using them over time--these nights with no symptoms rarely happened until I started using them).

My final questions are about how sensitive to over-exercising or over-stretching any of you are. This is my downfall. And, it takes very little "over" for me to create a bad symptom night. What I call a "bad night" is when I can't get the pain to stop for hours--it can go continuously for hours and hours with only short periods of sleep in between RLS episodes and I basically end up with very, very little sleep.

I'm recognizing my "bad" nights now are directly caused by over-stretching/over-exercising. And after one day of "over-something" I can have 5 bad nights in a row.

The medication and Nidra work perfectly, unless I have over-done some physical activity.

I wonder if this is something all people with RLS struggle with or if those of us with painful RLS are more prone to have---or those of us who have gotten out-of-shape (because sleepless nights have made us too tired to be physically active). ???

I'm struggling now because my RLS is mostly well-controlled, so I'm trying very gently to increase physical activity, stretching and some exercise (mild exercise) but this activity has led to severe symptoms recently--which then caused me to be inactive until the symptoms improved but when I tried to exercise, again, I aggravated my RLS once more with some kind of "over" (doing too much).

Do any of you have this same kind cycle? Any luck breaking it?

I don't have any day-time muscle soreness. But, boy does it affect my RLS at night.

(I'm working with a physical therapist and, really, I'm not doing anything that would appear to be "too much"---but darn it--it is!)

Again, I would very much appreciate hearing from as many of you as have time and energy to respond. If my RLS is "different" it would be helpful for me to understand how it is different.

I want to fight this every way I can. I have already lost too many years to sleep deprivation. The quality of life (and longevity) I strive for includes having more physical strength and fitness.

Please, I would appreciate knowing if anyone else has had this struggle. Months ago, I was much more "fit" (for an old person). Now, trying to increase fitness creates this cycle of more RLS struggles and then less fitness. Do any of you identify with this description? Is there a good way any of you have dealt with it?

I look forward to your replies. And, thank you for reading my long post.