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New member seeking advice

Posted: Wed Jan 13, 2021 4:44 am
by domestictraveller
Hi everyone! I'm a new member to the discussion board. I have suffered from RLS for maybe 15 years. I should say, I think it is RLS, and my Dr at a nearby sleep clinic recently diagnosed me as having it, but sometimes I'm a bit unsure? My symptoms are basically leg aches/soreness at night (sometimes in my calves, thighs or both), and maybe 10 years ago these symptoms spread to my arms. I would not describe these sensations as unusual or weird but simply as pain- not severe pain, but maybe a 3 or 4 on the 1-10 scale and achy enough that it is hard to sleep through them. These feelings become worse as the night goes on, and by the wee hours it can be quite hard to sleep through them. Unfortunately, these sensations have gotten worse recently, and my sleep quality has also suffered. I have recently started taking meds prescribed to me (see below); before taking these meds, the only other thing I'd found that helps my symptoms is putting ice packs on my legs for 20-30 minutes, which gives me maybe 3 hours of good relief for my legs before the aching returns (but this remedy is inconvenient, as after I wake up to apply the ice packs in the middle of the night when I need the relief most it can be hard to get back to sleep).

Regarding whether I actually have RLS- I check all the boxes (discomfort in legs and also arms, only experience the discomfort after I'm lying down at night, I get relief when I get up and walk around), except one I'm unsure about- the urge to move my legs (and arms). I'd say I in fact have this urge and during the night I'll shift positions several times to help with the unpleasant sensations; but is my urge "irresistible"? I'm not someone (says my spouse) who is constantly moving his limbs around during the night. I would describe it more as a desire to help with the unpleasant sensations, and so, on several occasions during the night, I shift my arms and legs to different positions.

In any event, what I'm seeking (like everyone else) is relief for the symptoms that I have. After doing a blood test and finding no iron deficiency, my Dr prescribed gabapentin (ramping up to 300 mg/night), but I found no real benefit. Then he switched me to Horizant, and after a week and a half I felt no improvement. Then he put me on pregabalin (Lyrica), starting at 75 mg and later going up to 225 mg/night (I take some of this dose in the middle of the night because it's the second half of the night when I feel the most discomfort). I've been taking Lyrica for a few months now, and I'd say it provides some help, but not enough, plus I can feel the side effect of morning grogginess.

My Dr has recently offered to put me on Mirapex as an alternative to the pregabalin I've been taking, but I'm reluctant- not just from concern about augmentation, but also because (as mentioned above) I don't experience the strong urge to move my legs at night but rather experience RLS more as straightforward leg and arm aches/pain. I'm wondering if Mirapex would help me? Or should I ask for a low-level opoid med next (like methadone)? Any ideas are welcome, thanks so much, and I'm glad to have joined this discussion board!

Re: New member seeking advice

Posted: Wed Jan 13, 2021 1:46 pm
by stjohnh
Welcome domestictraveler, Sorry you are having troubles, and I hope we can help.

Firstly, RLS is orinarily at its worst about the time you get into bed. It does not cause you to wake up after going to sleep (mostly). It ordinarily does not cause pain. It oridinarily gets better, not worse as the night progresses. The "urge-to-move" symptom is primary for diagnosing RLS, and anyone without "urge to move" probably does not have RLS. Doesn't mean you don't have it, just not likely.

Do you know why the doc switched you from gabapentin to Horizant? The reason I ask is that the doc stopped at 300mg gabapentin. This is a low dose, and while some people with RLS get relief with this dose, quite a few need higher doses.

Mirapex works nearly 100% of the time for treating RLS, and is sometimes used as a "test" to help determine if a person with uncertain symptoms actually has RLS.

Since your doc has already suggested Mirapex, I think that is the way to go. If you get good relief from the Mirapex, then you have RLS. If no relief, it may be time to see a neurologist to help determine what is really causing your pain.

I would not ask the doc for an opioid prescription. Doctors are VERY nervous about opioid seeking patients, and you may get yourself unnecessariy on the doc's blacklist. Additionally, you haven't really given much of a chance for non-opioid therapy (like higher doses of gabapentin, or Mirapex, or combination therapy) to work.

Re: New member seeking advice

Posted: Wed Jan 13, 2021 10:56 pm
by Polar Bear
With regard to the urge to move being one of the diagnostic criteria for rls....... if you have the urge to move you absolutely know it.....
Certainly I can try not to move and to just tolerate my symptoms by moving my legs/feet a little but within a short time, a very short time, I'll have to jump up from my chair or from bed like a jack in the box!! The need to move for relief outweighs anything else in my life at that moment.

Re: New member seeking advice

Posted: Thu Jan 14, 2021 1:44 am
by Yankiwi
I don't know if my RLS makes me wake up or if I wake up anyway and have symptome—a chicken and egg thing but every night, two, three or four times a night I wake up with painful RLS and the longer I try to fight it and stay in bed the worse it gets until I get up and take another 60mg codeine (only one at bedtime and once in the night). Then I have to walk around and stretch for an hour or so.

Re: New member seeking advice

Posted: Thu Jan 14, 2021 2:05 am
by stjohnh
Betty's comment about urge-to-move is important, and yes, if you have RLS, when the urge-to-move makes it's appearance, it is an IRRESISTABLE urge-to-move. It cannot be willed away, and the only relief comes from getting up and moving your feet, and relief comes QUICKLY, like a couple of seconds... Sounds simple, BUT stopping moving makes the urge-to-move return, frequently is just a minute or so... So, those of use with moderate to severe RLS, unless controlled, spend a lot of time pacing the floor at night. I generally made figure 8's...

It is such an odd sensation that people without RLS can't really understand it. It is not pain. The closest thing ordinary people experience that is vaguely similar is imagine the worst possible itch that you CAN'T scratch, now imagine an itch ten times worse. I honestly think that people without RLS can't really get how miserable it makes us. They may see us miserable and sympathize, but it is hard to empathize with someone whom you don't really understand what is making them so miserable.

Re: New member seeking advice

Posted: Thu Jan 14, 2021 3:41 am
by Rustsmith
Before I was diagnosed and therefore didn't know what was causing my urge-to-move, I tried an experiment one night to see what would happen if I didn't get up and move around. I was hoping that if I resisted, that it would go away. After a minute or so, it was taking all of my willpower NOT to move. I had to use all of my concentration to focus on not moving. Then, all of a sudden, my leg kicked out so violently that it almost knocked me off of the sofa. I don't know if I lost focus for a fraction of a second or if my subconscious decided that enough is enough and initiated the kick. After the kick, the urge was gone (for a short time). I have never tried that experiment again for fear of hurting myself by kicking something heavy or kicking someone else (or the dog). Frequently we will use the term "gets it" for someone who understands. If you don't have RLS, then you cannot possibly totally "get it".

Re: New member seeking advice

Posted: Thu Jan 14, 2021 7:48 am
by badnights
A criterion that you didn't mention that is key to the diganosis of RLS/WED is that it's circadian, worsening in the evening and early night, getting better toward morning and during the daytime. For instance, if you lie down during the day, are the symptoms just as bad as if you lay down at night? If they are, then you probably don't have RLS/WED.
during the night I'll shift positions several times to help with the unpleasant sensations; but is my urge "irresistible"? I'm not someone (says my spouse) who is constantly moving his limbs around during the night. I would describe it more as a desire to help with the unpleasant sensations, and so, on several occasions during the night, I shift my arms and legs to different positions.
This is a very clearly described observation that needs to be brought to your doctor in just such a clear fashion. Because, especially if you don't have the circadian response but even if you do, it really sounds like you don't have RLS/WED. The urge to move is essential to the diagnosis.

In discussions of differential diagnosis of RLS/WED, shifting positions to minimize discomfort is always mentioned as an example of something that is not RLS/WED.

Try Steve's trick of not moving. If you jump up, unable to bear it a second longer, after a minute or a few minutes, then you probably do have RLS/WED.

EDIT: I forgot to add some of the things it could be, for your peace of mind, but I find I am getting too sleepy - at any rate, your doctor will figure it out or refer you to someone who will, if you tell him that you feel you don't meet the urge-to-move or the circadian criterion

Re: New member seeking advice

Posted: Fri Jan 15, 2021 1:46 am
by domestictraveller
Thank you so much everyone for your prompt and thoughtful advice! Based on your responses I'm wondering now if my sleep Dr has misdiagnosed me as having RLS? (which would be good news and bad news- the good news being that I wouldn't have this difficult disease, the bad news being that I still suffer and my condition, and treatment, would be more mysterious.) If anyone has any speculation on what else it could possibly be I'd be curious to hear (although of course I'd find a Dr for a diagnosis).

I had thought that maybe the Dr's diagnosis was correct and that I was in the minority of RLS sufferers who have RLS without periodic limb movement disorder (PLMD). It also seemed that I fit the other RLS criteria (and the fact that the sensations had migrated to my arms could be another sign of RLS). But it sounds like the strong urge to move is so unmistakable that without it, one doesn't likely have RLS. By the way I did point out to my Dr (who works in a sleep clinic and so presumably has expertise) that I didn't feel the strong urge to move my legs but he said he thought the fact that I met the other symptoms meant an RLS diagnosis was correct.

A couple quick responses to the above-- I don't know why my Dr didn't prescribe a higher dose of gabapentin- I can ask him that; regarding circadian rhythm, I don't feel the sensations if I take a nap during the day, instead the pattern is that the feelings don't kick in until maybe 2-3 hours after I lie down at night (the the feelings do get worse as the night progresses); and I think I can resist the urge to move my legs or arms for more than a few minutes, I will try this test.

I think what I may do (as Holland suggests above) is try the Mirapex for a few weeks and if I get no benefit at all, I'll assume it's not RLS, and seek a neurologist who can try to figure out what it is. (And whatever it is, unfortunately it's getting worse and becoming more difficult to get decent sleep).

Thanks again to all.