Restless Legs Syndrome (RLS) Discussion Board

I was really struck by the difference in my mood and perceptions between a night of good sleep and a night of restless, poor quality sleep. Unfortunately for me right now, the nights of poor quality sleep are starting to outnumber the good.

The context of me comparing sleep on my ability to function...I am a US citizen trying to get my qualifications assessed so I can eventually apply for jobs in Canada. One day when I slept relatively well, I felt very positive, like it was actually a possibility, like I was making progress and taking steps. I felt like a capable person and had hope for the future. I was able to see the progress I had already made.

In stark contrast, today, I woke up in physical pain from a restless night. My back hurt. Everything seemed overwhelming and hopeless. Had all kinds of negative thoughts about how it was impossible, nobody would want to hire me, trying would just be a lot of work for nothing, I'll never make it, something bad will happen at the last minute even if I do get a job, etc etc etc.

That is the difference between restful sleep and poor quality sleep...one I can actively work towards a positive future and some goals, and the other I am left just trying to "survive" the actual day with minimal trauma and emotional upset. Huge difference and quality of life impact; the difference between slogging through and only surviving vs thriving.

Having a condition like PMLS is like carrying around a ton of weights every day while I try to complete my daily activities. It is heavy and exhausting.

Oh how familiar! How very true.

Well said, Leggo...I experience the same thing. I've also noticed that good, restful sleep causes me some anxiety! I'll be bouncing through my day, a little high on the knowledge that restful sleep is possible, and then it hits me that I can't count on it the following night, or ever. The inconsistency and lack of control really unnerve me. So that's something I'm working on. The multiple layers of this illness continually surprises me.

Did you ever get your Buspar prescription squared away? Just this morning I was going to write you about another supplement for anxiety but noticed you are taking Buspar.

My heart goes out to anyone with PLMS. RLS is bad enough but at least there is a degree of understanding and an interest in getting to grips with it. Having said that I have struggled recently with sustained exhaustion and the devastating impact on daily life. My RLS symptoms are reasonably well controlled (it seems so churlish to complain when this holy grail has been achieved) but I could stay in bed for 24 hours a day - sleeping on and off. Performing even relatively simple tasks like the household laundry are an uphill struggle. More significant projects are completely impossible at the moment.

Having had PLMS since I was a toddler, I cannot imagine what it would be like to feel rested. I still manage to be upbeat a small percentage of the time, force it another percentage of the time...but the rest? leggo - I read your post and wanted to cry. I get it. And I have no answer for you. That makes me even more sad.

I totally agree. The same thing happens to me.

Yawny, yes I got the buspar. What else were you going to suggest? Makes sense re the anxiety at successful sleep...

O no, legsbstill I think RLS is worse. I just pretend I have it then I don't feel left out. Seems very similar. I have mild RLS symptoms on occasion and I hate it.

Ann, had it since childhood too.

Legsbestill, breaks my heart...I've been there...am there. My ability to do household chores is my scale of how well I'm doing. I have a lot of ego tied up in it. In fact, our dining room table is often covered in laundry but I won't let my husband touch it. He wants to help, but it's my scale, and the piles keep me hopeful like "here's a fresh pile of laundry and I'll be getting to it any minute." OMG, I sound crazy. But we do what we have to, to get by, yes?

Ann, I often think how you and a few others here have had RLS/PLMS since childhood and it reminds me to cowboy up. I've only had mine for a few years.

Leggo, my neurologist put me on two supplement combos before the Buspar. They are a naturopathic/supplement alternative, so you wouldn't take them while on Buspar. The first, Stress Factors (Biogenesis), taken in the morning, was very helpful and I immediately felt calmer on just one pill. The second, Cortisol Manager (Integrative Therapeutics), is taken before bed and was very helpful as well. Unfortunately, I couldn't increase the dosage of either because both supplements caused me painful reflux symptoms. I've retested the Cortisol Manager several times and reflux each time. So my neurologist moved me to Buspar. Recently, he also had me try straight Phosphatidylserine (AyuPhos or Seriphos) which is an ingredient in the Cortisol Manager, and it works well and causes me no reflux problems. I'm not on it currently because I'm experimenting with something new, but will return to it. I did a hormone test (Dutch Test) which showed an uptick in Cortisol right before bed, and the Phosphatidylserine helps with that. Can you be resentful of a hormone? According to the hormone test, my Cortisol is literally in the gutter allllllllllllllll day, as soon as I wake up, but then decides to make a grand appearance right as I'm collapsing into bed. Talk about late to the party.

Interesting about the cortisol, yawny. I have never had a test because my sleep is so messed up and they won't do them if you do not sleep normal-ish hours or so I was told. But, it reminded me of the dopamine. Similar thing with RLS. We have none when we need it, then about 1-3 AM our bodies go, OH NO, we have no dopamine, let's flood it! That is one of the reasons we sleep then. But, around 10 AM or so, our bodies go, OH NO, we have way too much dopamine, let's turn it completely off. So, it isn't there when we need it for the RLS. Which made me wonder if other hormones or chemicals in our bodies are off kilter...

If ever there was a hormone to be resentful of, cortisol would be the one. I realise it has its place but I would love it to learn where (and, importantly, when) its place is. Actually I think I might feel a bit resentful (or at least respectfully wary) of dopamine also. Why can't my dopamine just learn to deal with where it is now and behave normally as Ann points out?

I have a bottle of phosphatydil serine which I never got round to trying - as a result of reading various suggestions, I purchased a whole load of supplements a few months ago including Taurine, L Theanine, L Tyrosine, Vit D and Vit B complex, magnesium and passion flower drops. I have a suspicion that one or more of them has a bad effect on the legs so I don't take any of them in the evenings now and go through phases of taking them or not depending on how pathetically hopeful I am feeling about snake oil. The only one I never tried was the phosphatydil so maybe now I will give it a go. My sleep couldn't get very much worse.

I totally relate to your laundry-accomplishing-test, Yawny. The problem is on the rare occasions when I feel really well enough to get to grips with household tasks, they seem like a poor way to spend that precious time.

My husband is a neat freak, so my house remains clean...through little effort of my own. To get through the dark nights I grew, took care of, and hybridized plants. I didn't need to be awake or functional to repot them, groom them, or even take stamen to pistil. Though I do admit to about 100 that are not named any longer because I forgot to put the varietal name on the pot after repotting.... These days my plants are what remind me of my dysfunction. 800-1000 of them, all overgrown, all needing to be repotted, some dying.

Wow Ann, that's alotta plants and amazing...maybe you have a side business of a botanical garden on your hands, The Nightwalker Nursery. I love plants but am hopeless with them. I have however been able to keep a few cats alive and thriving, so I stick with what I know.

As far as husbands go, a neat freak is at the top of my ideal list, but I don't have one of those. I do have a techie so I never have to fret about my computer, or how to get the remote control to work.

Legsbestill, I can commiserate on the accumulation of supplements. My bedside drawer frequently has to be sorted and emptied from my experiments. Then I'll read something on the Discussion Board and the same supplements end up back in the drawer to have another go. I often can't remember why.

The Nightwalker Nursery! I love it. I could contribute some cannabis plants. I did some internet research today and am trying out a form of pruning that is supposed to maximise yield which involved cutting the tip off the plant and tying down the side shoots. I experimented with cloning the plant using the pruned tip and some rooting powder.
1000 plants is too much for anyone to look after surely, even someone in the absolute full of health and completely rested? I would not beat myself up about some of them dying. They can be composted and ultimately benefit the others - the cycle of life. I wouldn't apply the same logic to cats. I hope you don't have that many, Yawny. We recently acquired a completely insane kitten which is driving us all mad.

Legsbestill, always making me laugh...By some people's standards, I do have too many cats, three of them. And I suspect there's something a little twisted about me because I really want more. I just love them so much. I have a really special bond with one of them, and one day my husband walked into the room as I told this cat that he, the cat, was the love of my life. Can't really back your way out of that one.

Your insane kitten...does he/she have another kitten/cat as a buddy? It really helps them calm down. That's how we ended up with three! The first one needed a buddy, and so on.

Good luck on your cannabis plants, and please keep us all updated on your efforts. I'd love to learn more.

As I'm getting older, I often look in the mirror and see my mother looking back at me. Today I felt like her. I went to see my neurologist and I was really struggling from lack of sleep. I felt sick to my stomach, every ache in my body felt exaggerated, and every thought was inside a foggy bubble that I peered at for the longest time as I tried to understand it, and mostly not forget that I was trying to. I found myself in front of my neurologist and he's asking me how are things, and I can't answer. So I look to my husband for help. And so my husband answered the questions while I nodded my head and spoke a word or two. I marveled at his ability to answer the questions and interact with the doctor so easily. I was trying so hard to keep up, but I just couldn't process everything in real time, and some of it I completely missed. It all felt so familiar, deja vu-like, and I realized the same scenario has been playing out with my aging mother the past several years as I shlep her from one doctor to the next. She sits mostly quiet while I answer all the doctor's questions. And then afterward I explain to her everything that happened. And usually, I have to repeat this several times. I was my mother today.