This is what I’ve been scared, or worried, about since July 13 around 9:30am when I walked out of my doctor’s office. Ten days, or more importantly nights, of no medication. I haven’t had a drug-free night since I was diagnosed with Periodic Limb Movement Disorder (and later Restless Legs Syndrome) six-plus years ago. Now, my newest doctor wants me off everything I’m taking. He wants me to get down to a baseline. He then wants to take it from there.
To say I’m scared and defeated by this would be an understatement.
To understand exactly what I am going to go through, please read this post: “Ten Nights RLS Drug-Free: What to Expect.” about what my doctor has warned me about. I have already tapered down my medication and essentially weaned myself off most of them (according to science). You can read about how that went with what had been my live blog from the first 16 days/nights of this overall process here: “Weaning Off Medication … and the Withdrawals.” I am also instructed to not drink any alcohol (even socially), not to drive at least for the first four or so days (72 hours or more), and if I had a full-time job I wouldn’t be at work in the same time frame.
All of this is to get me back to a baseline – back to the drawing board – so my new doctor can then decide which direction to head with medication. It’s a tough process to go through after six-plus years of thinking I was on the right path to relief. However, while that relief was there the pain and discomfort were also getting worse. It’s all because I had become addicted to one or more of the medications. This process is necessary to wean myself off the medication and start fresh.
Just a head’s up… updates will be added at the bottom of the blog.
DAY/NIGHT 1 – OVERALL 17:
5:25 PM ET: And so it begins. Tonight I do not take any medication. Nothing unless I need Advil, Tylenol, or Aleve which will do nothing for the pain and discomfort I am promised I will experience (unless it’s psychological). Not a single pill.
I have been dreading this night since I walked out of my doctor’s office in early July. It’s been mocking me for weeks. When my wife and kids headed out of town earlier this week, my thinking was I was about to start this process… while it mocked me from two nights away.
But now it’s here and I don’t know what to expect. The last few nights – or most of this week – have been absolutely lousy. The last decent night sleep I got was a week ago – and that was probably five hours in total. I have walked past my bed a few times today figuring I won’t lie down in it for a few days. But who knows, maybe all the pain and discomfort from the last week is exactly what I will experience tonight because the medication was at such a low dosage (in my world and for my body) that it wasn’t making any difference. Maybe, just maybe, I can get a little bit of sleep each night despite the rather specific warnings from my doctor on what I can expect (“Ten Nights RLS Drug-Free: What to Expect”).
Who knows. The only thing I really know… is tonight for the first time in six-plus years there is no medication to help me deal with the RLS and PLMD. To help me with the pain and discomfort. And on top of that, the medication I had been taking has made the RLS and PLMD and the pain and discomfort worse.
Quick note on the rest of the day – I tried to stay busy. Today was like most of the last 17: tiring, hard to focus and motivate myself, but one I took advantage of and did things. I have started a Twitter hashtag as I think of, start, and complete projects for the next ten days. You can follow along with #RLSprojects. I have already started to raise my desk higher so I can do work while standing – since sitting at my desk to work may not be a realistic opportunity for ten days. I also got a few items on my to-do list accomplished while also browsing social media to keep myself distracted.
I am sure I will bring another update during the night. I will update when I can or need to.
12:45 AM ET: Not sure what to expect at this point. I’m semi tired which seems normal, but I am not in any gross amount of pain and discomfort. No, I can’t sit or lie down for very long and my back is bothering me. However, I can’t figure out if my back is bothering me because I’ve been on my feet a lot today and even did some light lifting with some projects… or that part about the RLS/withdrawal pain and discomfort making its way into the “trunk” of my body is what I am experiencing.
Not sure what to do at this point, either. I may try to lie down and close my eyes and see what happens. This has usually been the time each night where my body says go to sleep while my RLS kicks in big time and keeps that rom happening. And again, no medication at all to stimy the RLS at all…
We’ll see what happens… though, I watched a movie and a now catching up (binge watching) and old show I never saw the last two seasons of…
1:10 AM ET: Yeah… never mind… lying down isn’t an option. Within minutes I couldn’t stay comfortable.
2:30 AM ET: Ok. Feeling it now. Took a walk around the neighborhood to see if it would help. It helped while I was walking.
Now the problem is I am tired. I want to sleep. But there is no comfortable position to be in besides standing. I constantly need to move or the pain and discomfort are too much. That being said, the pain and discomfort are annoying even when I am standing. I also can’t give my back a break.
Of course I’m going through withdrawals. I sweat on and off and my body itches. Just annoying. This is clearly what the doctor warned about. The real challenge is finding a way to get breaks and even the ability to rest when I can. I’ve only been up for 18 hours… been warned this could take 96-plus.
4:45 AM ET: Brutal. Simply brutal. As advertised.
I tried to go up to bed, maybe get lucky, and fall asleep. Not a chance. I’ve tried sitting, kneeling, anything in many positions looking for a break. Nothing.
I ended up taking a shower for a good long time. It felt good, but it was a temporary break.
The pain and discomfort just keep ramping up. I can barely stand still to write this. Of course my feet hurt as well thanks to standing on them non-stop. And then comes the part where I want to walk around with my eyes closed, except that will not end well.
This isn’t like pulling an all-nighter in college or working a long shift at work (I’ve worked 24-plus and an entire weekend with no sleep). Those are driven by coffee, Red Bull, whatever it takes. You can rest beforehand to prepare. You know there is a time when you can crash afterward. I don’t have a choice, I can’t change my mind (technically), I couldn’t rest to prepare, and I don’t know when I will be able to crash at the end.
I don’t wish this experience on my worse enemy. I think I am going to take another walk.
9:15 AM ET: Not sure how to describe the night and morning to this point. I was able to catch a couple of quick power naps – maybe thirty minutes with one – but they were all punctuated with excruciating pain and discomfort. I am thankful for at least a little shut-eye… I am just disheartened knowing I have to go through this all again on even less sleep and on nerves that are more frayed. Here’s hoping for a little less discomfort the rest of the day to give me a break and maybe even a chance to sleep – I will sleep whenever I can get it right now.
DAY/NIGHT 2 – OVERALL 18:
6:15 PM ET: I tried to remain busy today, though I started the morning by laying low. I have found in the last two weeks that I am most comfortable between about 8am and 11am or so. While I can’t sleep, but I can relax a bit more.
After awhile, I can no longer sit or lie down before my body starts to revolt, so I then tried to tackle a few things around the house to keep me busy.
I did have to go out and do some errands, so despite doctor’s orders not to, I did drive. When I got back, I tackled pressure washing the deck while also checking out what other items needed to be taken care of outside the house. I also installed and setup a WiFi extender in the house and finished raising my desk I I my studio so I can work while standing up. More things to do tomorrow.
You can keep track of what I am doing by following the hashtag #RLSprojects on Twitter and Instragram which is also streaming to the right of this article.
Now to get some dinner and figure out what else to do tonight. I really don’t know what to expect tonight, though I fear and am betting on a repeat of last night. Will post an update later.
11:45 PM ET: Well… I am doing my best to avoid any pain and discomfort. I just finished a bath, yes a bath, so I could get my legs to relax (works in a pool, afterall). Now I prepped a cup of chamomile tea – call it a double – and hoping things go semi-smoothly tonight.
I feel okay right now. My feet hurt from being on them all day and night and I can’t sit or lie down without the RLS acting up big time… but I am not in extreme pain or discomfort standing… right now. Last night things amped up after midnight. It’s almost midnight.
9:35 AM ET (long update): I couldn’t do much updating during the night for so many reasons… mainly because I was so tired I couldn’t even keep my eyes open. It also ended up being a more challenging night than the previous and lack of sleep may have been the biggest factor in that.
I really don’t know where to go from there… it was a tough night. I did a couple of walks around the neighborhood going further with both walks than previously (it was a gorgeous night). I also ended up drinking three doubled-up chamomile teas just hoping for some homeopathic relief – didn’t seem to work.
The pain and discomfort went up another level as well. I actually struggled to just stand still… I had to walk around. As my doctor described, the urge to move would become overwhelming. The moment I stopped moving, the urge along with the pain and discomfort would come roaring back (if it ever went away while moving).
Then on top of that, I was exhausted. Except for maybe thirty minutes, I had been up for 44+ hours when my body started having an internal fight: sleep versus withdrawals. It got to the point where I was standing or walking around with my eyes closed. Twice on my last walk I stopped (not a conscious decision) and suddenly with my eyes closed I started to tip/fall. Luckily I was able to stop myself, but the last time my hands were in my pockets and I thought I was going down.
So I decided to go for broke. I figured I had nothing to lose and wanted to see if I could get any sleep no matter how small. I forced myself to lie down on either the couch or bed and find a way to close out the pain and get some sleep. It kind of worked. I found that I could get a couple of minutes here and there, though certainly not deep sleep… it was sleep.
I also found that when I woke up, getting back to sleep on that piece of furniture wasn’t going to happen. So I got into the routine of getting up, going to the bathroom (yes, each time), going up or down the stairs, and trying again on the bed or couch (whichever I wasn’t on previously). I parked myself in front of a fan and forced the issue. It all resultsd in a couple of quick naps an hour, some longer than others, until I had to give up around 9am.
A couple of other items I’ve noticed:
- I was sweating a lot when asleep. I sweat through several tshirts even though I was directly in front of a fan.
- The pain and discomfort in my legs has definitely moved up to my arms and hands as well. It isn’t as consistent, but having those feelings in my arms and hands makes it even tougher to deal with.
- My morning “break” of a few hours of less pain and discomfort to allow me recuperate (as I’ve experienced the last two or so weeks) is gone. That’s going to make today even longer.
I’m not sure what to expect now for today. I have some projects in mind to get me through the day, but worried that I am so tired and in discomfort there isn’t much that will help pace me through today.
DAY/NIGHT 3 – OVERALL 19
9:30 PM ET: This seems as good a time for an update as any. It’s been a mixed bag today, the morning continued to more painful and discomforting than usual, but my legs settled down a little so I could have a bit of time off my feet (no sleep). I then tackled some projects to keep myself busy and moving … in an effort to forget the RLS withdrawals and normal, but heightened, symptoms. But when I got done… I was very surprised to find the discomfort come roaring back very shortly after I got done – so I went for a walk.
I was pleasantly surprised to find after dinner another reprieve and enjoyed sitting in the couch during that time. However, I am back on my feet – which hurt – and needing to move, not just stand still.
This is the beginning of the second 48 hour period my doctor indicated would be just as challenging as the first 48 hours of this 10-night period. I need to get through this time frame and into Night 5 to feel really good about this plan. I’m just curious how much sleep I might get. I’ve had no more than three total hours in the last 61+ hours.
Last night, like the previous nights, was painful and discomforting. And it all seems to ramp up around midnight or 1am – about the time I really wish I could be sleeping. I ended up going for two walks around the neighborhood, but the real challenge has become keeping my eyes open.
I am so tired I’ve nearly gotten to the point of walking around with my eyes mostly closed. I have no choice but to walk around because even standing still is too discomforting. And I can’t go to sleep because of the pain and discomfort, so I walk around practically with my eyes closed. My walking around the house is probably a bit comical. My second walk around the neighborhood was a bit disturbing as I struggled to stay on the sidewalk. It all adds up to understanding completely why my doctor warned to have anywhere I am walking clear of hazards along with the warning I will trip and fall.
But back to the sleep. Around 5am I was so tired I couldn’t stand anymore. So, I went up to my bed and hoped for the best. What I got was roughly two hours at the most of sleep. It wasn’t terrific sleep. But it was sleep! The insult to the injury, though, was when I woke I was in such pain and discomfort I couldn’t go back to sleep and I still am walking around the house like a zombie. However, sleep is sleep… and now I’ve slept roughly five hours in the last 73 hours.
Today the family comes home, I need to stay busy, and push through. If I get to tomorrow in good shape, it apparently starts to get a bit easier.
DAY/NIGHT 4 – OVERALL 20:
6:30 PM ET: I basically have tried to remain busy today while adjusting to changes around the house – in particular the family is home which adds a few dynamics to everything.
With the family home, I have to think a little further than I had been doing. I told the wife I was taking things hour-by-hour, but I need to think a little further down the road. Also, there are a few more items like toys that are getting left out for obvious reasons. However, with the fact my balance is off and I have tendencies to walk around with my eyes closed… toys out on the floor is a bit of a danger.
So far my legs haven’t bothered me a ton, but I have been on my feet almost the entire day working on my projects. I can still feel the discomfort, but since I haven’t sat I haven’t given the symptoms to really rear up.
I am now four days removed from my last dose of medicine… so I should start coming out of the haze a bit. However, I suspect tonight will be another one like the last few and be a bit rough. Of course, getting some more sleep would be nice. I have had about five total hours of sleep in the last 82 hours. To be honest, I am not sure how I am not in a complete haze right now.
12:30 AM ET: Here we go again, though with an interesting twist. Considering I’ve only gotten a total of five hours of sleep in the last 88 hours, I was surprisingly wide awake at 11:30 at night. An hour later: the pain and discomfort in my legs have come roaring back. I didn’t have much discomfort today, though as noted I was on my feet most of the day. Now I can barely stand still just to type this. I have to keep moving. And forget sitting or lying down right now! I have about 16 hours left in what I am tabulating as the second 48-hour period to start this ten days/nights of being drug-free. That’s great, but I could really use some sleep and the inability to even stand still tells me a decent night’s sleep is a long way off.
3:15 AM ET: I got sleep-teased by my body. I somehow dozed off on the couch for about a half an hour or so. When I woke, I instinctually grabbed my stuff and headed up to bed. I was somewhat thrilled. Lie down and go back to sleep… and finally get some real sleep. Within moments of lying back down in my bed… and my RLS kicked back into gear. It’s once again bad enough I can’t still to write this. So, I am back on my feet hoping to just get through the night. If you are counting at home: not even six hours of sleep in the last 91 hours.
10:00 AM ET: Sleep. Yep sleep.
My last post indicate my body faked me out when I dozed off on the couch. It turns out that was going to be my night… once I figured out some tricks. I ended up getting four or five sleep segments the rest of the night. Each one of them was 45 to 60 minutes in length and I was woken by extreme pain and discomfort from my legs. I was unable to go back to sleep. However, I figured out that if I walked around for a period of time, I could then go back to sleep. So I walked and the climbed back in bed… but man, I was kicking up a storm. My wife left for the couch the first time I was up there and each time the sheets and covers went from being on me to being clear off the bed – all from my kicking.
Now I figure out what to do with today. I am still exhausted, my feet still hurt from being in them so much, and my RLS pain is still present. However, I am at the turn where things are supposed to improve, so I am looking forward to see how things change.
DAY/NIGHT 5 – OVERALL 21
11:15 PM ET: Not much to blog about today. I once again tried to stay busy despite how tired I am. I know I am not going to get more than a little bit of sleep, so I find things to do. I will say my feet, especially my heels, are killing me. I have spent a lot of time on my feet and clearly it’s been too much. I should have invested in a new pair of sneakers or some other comfortable shoes. I knew it would be on my feet a lot, but I underestimated how much I would be on them. Lead less to say, when it’s uncomfortable to sit and lie down and then also hurts to stand… I’m basically cursed.
As for my symptoms, things are improving it appears. Again, sitting and lying down are still things that get my RLS pain and discomfort going quickly. Though, I will say it appears to be a bit less intense then 24-48 hours ago (now I need to go knock on some wood). I am also still having my moments where I am sweating especially when I wake up from any amount of time of sleep. That tells me I am still dealing with many of the withdrawals.
My doctor said things would start improving at about this time – getting to this morning was important. So that leaves me not really sure what to expect or do. The first four days of this ten-day period I knew I wasn’t going to sleep and planned accordingly. Now, I don’t know whether I will sleep or not and thus I don’t know how to plan. I did get a little too giddy last night after falling asleep on the couch and learned that lesson the hard way. Tonight, I’ll play it by ear and if I can get into my bed for sleep… great. If not, this process isn’t supposed to end for five more nights… I can’t rush this.
3:45 PM ET: It wasn’t that great a night, it was a rough morning, so I didn’t feel like posting much.
After posting last night I thought things were improving, I was once again reminded that this has been and will continue to be a long haul. Once again after midnight, my RLS pain and discomfort came roaring back. To be honest, it was there the entire time but as the night wore on it just kept getting worse. The sweating also returned and I struggled to be comfortable.
Around 3am, I headed up to the bedroom and decided to take a long shower. I was looking for something to calm me down. I then decided to climb in bed. I don’t know how long after that, but it wasn’t long, my wife had relocated to the couch downstairs and I had relocated the sheets and blanket completely off the bed.
Once again, I was “asleep” for 30-45 minutes before I wake up soaked from sweat. I then would have to get up and walk around, and then hope I could get back to sleep. I am kicking so violently that not only am I desheeting the bed with relative ease, but apparently you can hear my kicking downstairs. I can also feel my legs kicking with some power even when I am “asleep.”
Which gets me to my other thought, I am not really sleeping as much as I am resting. I am not getting any quality sleep here. I am not visiting REM world. I just know my eyes are closed and I have a little more energy in my body which I immediately use to walk around hoping to get the painful sensations out of my limbs and make me tired enough to go back to bed.
I am expecting much the same tonight.
DAY/NIGHT 6 – OVERALL 22
11:25 PM ET: Today was a somewhat lousy day. I once again had very little motivation based on pain and discomfort and not all from the RLS.
As I indicated earlier, I struggled with sleeping and even feeling rested. The big problem also is my feet. I have mentioned it earlier, but being on my feet for so much has really started to hurt. I have tried everything to find a soft way to stand, but nothing is working. My heels are always in pain and I honestly can’t feel anything when I touch the skin on the bottom part of my foot by the heel. I happen to be seeing my orthopedic doctor about my torn calf tomorrow and will ask him if he has any advice.
But that is the toughest part, I want to get off my feet, so I sit or lie down. But then the RLS and withdrawals and everything else make that an uncomfortable option almost immediately, so I am back on my feet. And to be honest… while it hurts a ton to be on my feet… that pain is less than the other pain.
I did get some relief today – at the pool. Once again, I was reminded how much the pain and discomfort goes away when I am fully in the water. I actually caught myself twice with my head falling as I nearly dozed off while sitting in the pool watching my son have fun. I spent about twenty or so minutes in the water twice which was thoroughly enjoyable. What wasn’t enjoyable was the ride to and from the pool. My wife drove, since I haven’t gotten that much sleep as of late, and the pain and discomfort from the RLS and/or withdrawals as I sat in the passenger seat was intense – especially on the drive home. I just wanted to get to our destination and get out of the car as fast as possible. It’s really too bad we don’t have a hot tub here at the house.
Not sure what to make of tonight. I actually asked for sheets and stuff for our hide-a-bed sofa in the living room. I might try lying there and falling asleep because a) it keeps me from going up and down the stairs disturbing who knows who upstairs and b) it keeps my wife from making her way back down to the couch when I start kicking up a storm in our bed. It may not work, but I am thinking about trying it tonight.
I have four more nights after tonight… I don’t think I am recovering like the doctor predicted, but that might be more of an indication of how much my body was relying on the medicine on top of how severe my RLS condition is.
1:30 PM ET: Sorry for the lack of any posts in the last 36 hours. I honestly felt I was getting too repetitive. My legs (and arms) are still bothering me all day with pain and discomfort, I can’t sit or lie down for more than a few minutes before I have to get up, I can’t go to bed comfortably until I am beyond exhausted and it’s well after 3am, etc. I just felt I was saying the same thing over and over again.
I feel like the puppet to the right – just bashing my head into a wall in frustration that I can’t get comfortable at any point during the day.
However, there were some changes in the last 12 hours and some things I have thought about recently.
First off, I got more sleep this morning than I had in the previous two or so weeks. Now, it wasn’t sleep starting at Time A and going until Time B. I was up the entire night getting up anywhere from 15 to 90 minutes after previously getting up, but it was more rest to be sure. It may be pure exhaustion, but it feels better knowing my body is trying to get me rest.
That being said, my nights are pretty brutal. I can’t fall asleep until at last 3am and that’s only because my eyes are closing while I am standing or walking around. I have to hope my body will collapse and get me to sleep before the pain and discomfort, which is present, doesn’t take over and I have to get back up again. And my movements have been intense.
Last night I went to bed – in my bed versus the hide-a-bed like the night before – at 3am. By 3:30 the covers and sheets were off the bed (even though I hadn’t started under them) and my wife had already abandoned our bed for the couch downstairs. The sheets never stayed on the bed last night. And my wife told me she could hear my legs kicking and thrashing about from downstairs. Those movements are more intense and more aggressive than even before I was diagnosed.
Which gets me to my other thought. My doctor mentioned at some point a few days ago I should feel the sensation of the medication no longer controlling me (though, that isn’t the right words). I don’t notice a thing. I am still sweating and have woken on several occasions very wet and with a wet pillow, tshirt, etc. I honestly don’t know what the medication is supposed to “feel” like expect that my pain, discomfort, and movements are abated by the medication – all three of those are clearly at higher levels than I have ever experienced them in the past especially for long lengths of time. So, I don’t know what I am supposed to feel like.
The doctor did mention in his description that I will “appreciate fewer problems of symptoms in the upper extremities and a reduction in symptoms in the earlier part of the day and afternoon.” I will say the pain and discomfort has reduced, but it is still there at all times of the day. I can sit or lie down longer, not because the symptoms are gone but rather they have dissipated just enough for me to ignore or fight through them longer.
Now I enter the final three days of the 10-day, drug-free phase the entire tapering down process. The doctor says I should experience a significant lifting of all of my symptoms and more sleep – especially less fragmented sleep. We’ll see. To be honest, I’m not buying this past part is going to change. My symptoms have lingered longer and more significantly than I expected.
But here is the deal. I have three more nights and then I call my doctor and hopefully there is some relief on the way.
DAY/NIGHT 10 – OVERALL 26:
I can’t believe I haven’t written in a few days, though it’s been similar to the last few: sleepless nights, pain and discomfort throughout the day, not many opportunities to relax. I did think things might have been s,ugh toy improving as predicted/described by my doctor, but the last 24 hours at least have proven otherwise.
After seemingly having longer and longer periods of time when I could lie in bed and try and sleep, last night was np the oooosite. I initially got to bed earlier than any night in the previous np two weeks, only to get up after a few minutes and return downstairs. I returned to bed around the usual time, 2:30 or so, and tried again only to find it a struggle all night. I had actually gotten out of bed and was standing there looking for relief when my wife got up and headed downstairs. The rest of the night and morning was filled with fits if sleep, restlessness, and pain… more than the last few nights.
So that lead into the day which was just a drag for the most part. I was tired and stuck in low gear much of the day. We did have dear friends and their kids come over dp for dinner which was a welcome distraction.
It all leads to tonight. The final night of this 10-night, drug-free and 26-day/night tapering process. I’ve been aiming for tonight in particular because it means I hopefully get answers starting in the morning. But first I have to get through tonight. I am exhausted, but can’t sit down. I am just hoping for nothing worse than what I have gotten used to in the last few weeks. Because tomorrow I wake up, call my doctor, and find out if there is at least some solution to my RLS miserly in the near future. One thing I can tell my doctor: things are worse now then when I was diagnosed nearly seven years ago.