Severe RLS solved for me

Have you had a 'great' and formal assessment for peripheral vascular disease? I think this must be a problem of blood supply. Something gets pinched, or closed off, maybe inflamed...not sure...but pain can come from tissue going short on blood supply. I sometimes awaken to a very sore ear on one side if I have slept on it for more than an hour or more. Very miserable for ten minutes or more, but it does go away eventually.

@gloaming Thank you so much for your reply. I really appreciate it. Yes, I have had a formal assessment for peripheral vascular disease--within the last year. No abnormalities found and therefore no treatment suggested. My sleep neurologist and I have also discussed the possibility of my RLS having a vascular component at length (brought up by me)--because (as you stated) it makes sense. He isn't a fan of this theory (while still acknowledging such a theory exists). The reason I was finally diagnosed with RLS is because my symptoms have been associated only with sleep, drowsiness, sleepiness etc AND never happen when I am fully awake and alert. The symptoms stop if I get up and move around. They also used to stop when I use a massager on my legs, but this is less reliable than, say, 5 years ago. If I don't use the massager, or walk, when my symptoms are extremely severe, with unrelenting pain, it can go on for hours and hours (last week after "over-exercising" one episode lasted 4 hours straight). So, not like a temporary response to a cut-off blood supply. I do appreciate your thoughts and agree that PVD has some similarities to when happens to me. My neurologist swears symptoms come from my brain. It helps me to think of it as like seizures--something over which I have little control. Only recently have I really focused on the exercise piece--doing any kind of hamstring stretch. Other than that, nothing behavioral can be tied to my RLS pain. It also helped me to learn that my RLS isn't like the "norm" but there are others like me--presenting with pain. ....Can you tell me what your RLS is like?

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.

@missjb I don't have RLS...just obstructive sleep apnea which, discovered far too late, led to an irritable heart and ultimately atrial fibrillation (AF). It's a long story, but I am in a temporary hold now with no AF due to a procedure known as 'catheter ablation'. If it is done well (day surgery), and if the recovery goes well (about five-seven days typically until you begin to feel well and resume normal activities, but up to three months for the heart to settle down), the patient can be free of AF for many months or even years. It does tend to be progressive, though, so I'm enjoying being AF-free for the time being. I look into sleep disorders now and then because, like all the men in my family, and like so many aged people, we don't sleep worth a darn.

I have had RLS for MANY years. The only thing that has ever eased
the misery is pramipexole dihydrochloride tablets 0.5 mg (prescription).
It's no cure, but it does let me get some sleep.

Without pramipexole, I would probably be dead from
lack of sleep (no exaggeration).
I have an achy feeling in my legs and the legs often feel heavy.
At times I feel unsteady and have to be careful that I don't fall.
Thanks a lot for your letter and concern.

Since posting my original entry some things have changed. I was forced to take a “holiday” from my Methadone. What I found when I stopped Methadone was:
1. Gabapentine does nothing to relieve my RLS. I’m going to discontinue taking it.
2. The Neupro (Rotigitine) did not completely quell my RLS. I increased the dosage to 4 mg/24 hr patch but still had significant symptoms.
3. I had significant body pain from my lower back down into my legs amplifying my RLS. I am sure this is why the Neupro did not stop the RLS on its own.

I was off the methadone for four nights. On night three and four I got three hours then 35 minutes of sleep respectively. I was dead tired and in agony on night five so I relented and took 10 mg of Methadone. Within a half of an hour my RLS stopped, I was free of pain, and I fell asleep.

Methadone has undesirable side effects for me. Lesson learned I will now take it on an “as needed” basis only since it acts so quickly once ingested.

@rjjb I understand. I've been there, too. Severe lack of sleep can be lethal. There is also a medical study someone did showing that the suicide rate is higher for people with RLS. Not a surprise to those of us who suffer from it. And, pramipexole works--using it needs no justification. Just FYI, if it stops working there are other medications. Don't ever lose hope and stop reaching out for the care you need. That is another side effect of RLS for me. After 5 bad nights in a row I worry I will never sleep again. The more I understand the more I am able to deal with any up's and down's--the discouragements. Thank you for telling me what your symptoms are like. For both of us--all of us--I wish there was a cure. Without one, we just do the best we can. It sounds like your symptoms are not unlike mine. I'm achy to the point of painfulness. Your heaviness is similar to my feeling of extremely tight leg muscles. Again, thank you for corresponding with me. I appreciate!