Restless Legs Syndrome (RLS) Discussion Board

Beth, I went to the same place in Indonesia. One time to the east and the other time to the west. When it is 12 hrs difference, the direction does not matter. And yes, I agree that going west is easier than east. I think I even saw something MANY years ago that said that we are genetically programmed to adjust to longer days but adjusting to short ones is not in our genes.

Thanks Beth, I'll keep my eye out for the results.

And thank you Ann for sharing your story. I can stop kicking myself so much now, although I expect there are others who will continue to say I'm "lazy" or something similar. The fact that you were teaching at the Graduate level tells me you are have a high standard for yourself as well. It's is so difficult to relate how much this condition has affected my life, but it's getting easier.

Thanks again. God bless,

Jayson

We so much want to be part of our human herd, don't we?

I've been working on acceptance for ten years. I'm still not quite there yet. I seem to keep going through the 5 stages of grief over and over, like Groundhog Day. I deny, get mad, bargain, am sad and think I accept. But, it's like that onion - I get to another layer or part of it and then I am back in the circle again. Or, maybe I never really stop bargaining, thinking there just must be another way to make it better.

A more positive way to look at it may be that I keep brainstorming, do find ways to improve, then have to readjust to that new normal. Since I always think that the improvement will be better than it is, I have to go through the acceptance all over.

In a strange way your story gives me comfort. It has been ten years since I was grounded from flying for the Army, and when I realize how long it has been and how I continue to grieve it bothers me. It's grieving for the past and the present, and some days it can become overwhelming.
You have a way of explaining your experience that I can relate to, and maybe it gives me permission to grieve, to stop and take a deep breath. Thanks again.

Jayson

That must have been difficult, Jayson. What we do is often so much a part of who we are. When we lose it in any way, there is an void we have to fill and we have to move on. I've still not quite accepted that I am not who I used to be - that is the one thing I seem to keep bargaining over!

Glad you are here - it is nice to hear others who feel as you do. We can all feel so alone with this dratted disease.

Jayson - that is so sad - grief covers so many aspects of life.

I have no idea who I used to be ....

It's hard to know you can't go home because it's no longer there (parapharasing something I read somewhere).

Above all be be gentle with yourself.


Wishing all who visit here some peace this night

Hi Beth, I was wondering if you have discovered that stopping the hydromorphone helped with your circadian problem or how your attempt at changing meds has gone.
I take methadone and oxymorphone and expect I may benefit from a drug vacation also. Your comments are very succinct to me, especially in ref. to not knowing how to deal with the ineviteable tortuous symptoms and sleep deprivation, how to cope when it will take upwards of a whole month to recover.
I am also starting to sleep much later in the morning (0300-0500 etc). I have minimized the meds as much as I can without serious breakthrough pain and sx (having to get out of bed and pace etc).
I emailed Dr. Earley about attempting a vacation and making plans. Robin contacted me and said he was out till wnd of June. Maybe I'll be able to make some headway - further minimize opioid side effects (memory loss etc) and get better sleep during normal hours. I believe I will need to go at least a couple weeks without opioids or minimal dose to begin to see RLS pain/sx lessen (not nightly or not as intense). Although the only time I succeeded at this was prior to seeihg Dr. earley; RLS sx did improve but the circadian sx were far worse (!). I have to at least try, but I know it will be brutal.
Yesterday I went without my oxymorphone, only methadone, and for the first time in a very long time I was up and pacing the floor throughout the morning. I took an oxymorphone tab around 0330 because I could hardly stand the pain. - I think I'll need a better game plan next time. God help us.

Beth is away for a few week - don't want you to feel she isn't concerned about answering.

I have a perspective, but can't do it justice at the moment...soon.

ViewsAskew wrote:Most of us have it. The docs at Johns Hopkins are even studying it - when we get rid of symptoms, we're still awake. It's 1 AM as I type this and I while I'd love to get to sleep soon, I know it's unlikely. The best time in my post-severe-RLS-onset life was about 10 months when I went to bed whenever I was ready and awoke whenever I was ready - if my legs were a problem, I just stayed up and didn't worry. If I slept at 7 AM and got up at 4 PM, so be it.

I lost weight, was happier than I had been, and got more done. But, I couldn't work doing it.

I stopped when I got a 10 month contract to teach in a Master's program. I only had to be there twice a week and thought it would be easy. But, it was still hard. Didn't matter if I was rested or not, I had to show up at 11 AM on Wednesday, for example. If I could have come whenever I wanted, it would have been fine. But, sticking to a schedule was very hard.

Those of us with constant symptoms often find it very, very hard to work and have a life of any kind.

YES! This is my life. It's frustrating beyond words.

Hi again jayson, I've been away without internet all summer (my job in a remote place). I am just getting caught up here on the board. It may take a while!

I haven't done the big medication holiday yet. My GP wants me to consult my sleep specialist and I can't see him til Oct, then since I am asking for iron infusions, I will need to find someone who is comfortable managing that, and get an appt with them... more months will be gone. Then I have to actually get the infusions, I'd like at least 2 or 3 before I go off the meds.

I don't know what to expect. I want my symptoms to be better, but I have no good reason for thinking they might be. I want to get off this merry-go-round of taking a medication to deal with the effects of a medication. I am prepared for nothing to be better and everything getting unbearable (I hope - but how can you prepare for something like that?), but even if that's the case, I will have at least given my body a break from the daily meds.

I am expecting to need four weeks, maybe longer, but I don't know how I will know, and if it's a nightmare I might not remember why I wanted to hold out that long.

I have been able to drop my hydromorphone dose, however (partly by adjusting my diet, partly by taking up the slack with other meds - pregabalin/Lyrica, levo-carbidopa if things are bad, and sometimes pramipexole), and I've noticed some things. Like you, my circadian offset did not improve at all, if anything it's worse. I know the HM is alerting to me, and to many of us, but there is clearly something else going on that causes a hyper-alertness even when we are not having sensory symptoms. Until recently it was barely even mentioned and certainly not investigated by researchers, but now Allen and Earley are testing their theory that excess glutamate in our brains causes this hyper-arousal. I wish more groups were focused on that problem, because it's the biggest issue for most people who have reasonable control of the sensory symptoms.

Another effect of dropping my HM dose is that I have regained the ability to have an orgasm (sorry if I'm embarassing anyone). A dose of HM 12 mg or more seems to prevent me from having orgasms, so who knows what else it's doing to our hormones. (opioid-induced androgen deficiency is a known thing, and it's relevant to women as well as men; and I've seen some mentions of opioid-induced changes in other hormones too).

Since my actual WED symptoms are bearable most of the time, my biggest complaint is sleep loss, and my second biggest is the circadian offset (which causes at least some of the sleep loss; heck, maybe all of it). It's funny, you wouldn't think that would be such a big deal. But I can't share in normal social activities or even buy food or other essentials, because I'm either still at work or the stores are closed. I'm out of sync with everybody else. It sucks. I think you know exactly how I feel.

Have you heard back from Earley yet? Do you know when you will start your "holiday"? I am interested in whatever advice Earley gives you about it (eg. how long). I wish you the best with everything.

Regarding comments of May 8, 2016 by Badnights, "It kind of blows my mind that researchers aren't all over this, but a look at the literature will tell you why - the existence of this phenomenon is not covered in any general description of WED/RLS that I can recall" I think you hit the nail on the head. I would love to see the foundation include what I call hyper activity at night and the inability to relax and sleep until early morning as a symptom of RLS. If it's not a symptom and instead is a result of the medication, please let us know because I've been searching for an answer for several year and I'm still unsure of what the cause is.

I was a night owl LONG before I had daily symptoms. In college I can remember going out to a bar with friends, dancing/drinking until closing, going out to eat, coming home and then sitting there reading a book at about 5 AM. I had NO reason to be awake. But I was. As I am tonight, grrrrr....

There was a time pre RLS when I was a good sleeper.
Then RLS arrived with symptoms causing disruption.
By the time I started to use medication my sleep pattern was all over the place and now I have no idea the cause of my insomnia. Certainly I am awake when symptom free. So, whether it is hyperalertness, habit, or a symptom of RLS - who knows !!
No sleep aid medication has been found to be of any great benefit.

Regarding comments of May 8, 2016 by Badnights, "It kind of blows my mind that researchers aren't all over this, but a look at the literature will tell you why - the existence of this phenomenon is not covered in any general description of WED/RLS that I can recall" I think you hit the nail on the head. I would love to see the foundation include what I call hyper activity at night and the inability to relax and sleep until early morning as a symptom of RLS. If it's not a symptom and instead is a result of the medication, please let us know because I've been searching for an answer for several year and I'm still unsure of what the cause is.

I agree, it's a symptom. It's no harder to identify than the others, so I think it should be a supporting symptom - not necessary to the diagnosis, but if you have the symptom, it supports the diagnosis. I think medication might exacerbate it, but it's part of the disease.

I actually went to the doctor in 2007 for my inability to stay asleep at night, not for the physical sensations (I got those too, and sometimes they delayed my sleep, but they didn't seem to be the major problem). The physical sensations became a mind-blowing problem within a week or two of starting ropinirole (when I augmented) and have never gone back to their pre-meds level.