Dave McHugh's Blogging Live

This is about my passions and pet peeves and opinions are expressly my own.


Living with RLS

I suffer from Restless Legs Syndrome and Periodic Limb Movement Disorder (Syndrome). These are my stories of dealing with RLS and PLMD, what I have gone through treatment wise, and where it all leads. I hope it helps those who suffer from it understand there are others who suffer as well. I also hope it will help those who know me understand what I deal with somewhat silently every day.

Vicious Circle of RLS and Sleep Problems

rls-diagnosisIt has been awhile since I posted (over a year) and I apologize about that. I have had a few posts ready to go, but for varying reasons didn’t post them. That got me out of the habit which I am now trying to get back into.

One of the reasons I am trying to return to blogging is having discovered an online support group for RLS. I won’t be sharing the name and location due to the privacy of the group, but already in short order I have discovered I am not alone. In a future blog, I’ll chat about how I sometimes feel by myself with this diagnosis and symptoms, but today I want to focus on something members of that group found interesting. How I have shifted my sleep in the last year.

Part of my diagnosis with RLS and PLMD includes Circadian rhythm sleep disorder (CRSD). It is a significant player in all of this. There are lots of reasons I probably developed CRSD. I could go through the list, but that would make for a very long read. What I am certainly not sure of is when it might have developed.

Continue reading “Vicious Circle of RLS and Sleep Problems”


A Decent Night’s Sleep?

Sleep RLS reliefMy family woke me up today. That isn’t that surprising. My wife, son, and/or daughter have woken me most mornings. It’s either by having the TV on, moving around on the bed, getting going for the day (shower, changing, etc.), or coming downstairs to have breakfast and leave (when I sleep on the hide-a-bed), or when most of all of them decide it’s time to get Daddy up and either call out, push, prod, or climb on top of me. Most mornings… the family wakes me.

But today it’s what I heard my wife say when I stirred that surprised me, “It’s nearly 12!”

WHAT?! It was nearly noon! There is no way it was that late! Did I really sleep until nearly noon?!

Continue reading “A Decent Night’s Sleep?”

Treating RLS: Back to Medication

Bottles of prescription medicine in a pile. This collection of pill bottles is symbolic of the many medications senior adults and chronically ill people take.
Bottles of prescription medicine in a pile.

It has been a little while since I last blogged. I have been trying to figure things out and much of the last two weeks has been pretty much the same day in and day out, night in and night out.

If you haven’t been following along, I recently went through a 26-day (night) tapering period, including a 10-day (night) medication-free period, where I was weaned off medication I had been taking for six to seven years (at higher and higher dosages) to treat my Restless Legs Syndrome, Periodic Limb Movement Disorder, and insomnia (with anxiety). You can read the reasons for this treatment plan here (“My Fight With Sleep Becomes Addicting“), but sufficient to say, my newest doctor believes I became dependent on at least one of the medications and thus it was driving the disease now. He needed me on a baseline of no medication before starting over with treatment plans.

Continue reading “Treating RLS: Back to Medication”

Things I’ve Learned in My Fight With Sleep

I can tell you one thing about my fight with sleep… I know a lot about how my body appears to work and what does or doesn’t affect it.

As I have mentioned in other posts, I have been dealing with sleeping problems for a very long time. They all appear to be related to RLS and PLMD, but certainly over the course of two-plus decades before that diagnosis(s) was known, I didn’t know what the cause was. As a result, I tried many things to help me get to sleep, I eliminated items from my diet, and I tried other tricks to see if my body would react accordingly.

Continue reading “Things I’ve Learned in My Fight With Sleep”

Ten Days to Baseline… or Back to the Drawing Board

leg-pain-symptomsThis 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.

Continue reading “Ten Days to Baseline… or Back to the Drawing Board”

Ten Nights RLS Drug-Free: What to Expect

Bottles of prescription medicine in a pile. This collection of pill bottles is symbolic of the many medications senior adults and chronically ill people take.
Bottles of prescription medicine in a pile. This collection of pill bottles is symbolic of the many medications senior adults and chronically ill people take.
The entire “Living With RLS” blog series was started after my visit with a new doctor to help treat my Restless Legs Syndrome and subsequently my Periodic Limb Movement Disorder (Syndrome). In that appointment, it was revealed that most likely the medication cocktail I was taking each day was most likely now driving the disease as much or more than it was helping me deal with the pain, discomfort, sleepless nights, etc. that the RLS and PLMD(S) had originally been causing. As a result, my doctor wanted me off the medication and back to a drug-free baseline before he was going to move forward with a plan.

The entire process will take 26-days and started two weeks ago. I have been blogging the progress and struggles each day. One of the parts of that “Drug-Tapering Period” that I didn’t mention in other blogs is the following from my doctor’s very specific notes:

Continue reading “Ten Nights RLS Drug-Free: What to Expect”

My Fight With Sleep… Has Been Weird

IMG_0414-0I can’t explain it better than to say… my sleep has always seemed to be weird.

I focus on my sleep because that is where my RLS and PLMD (obviously the latter) really cause the most problems. Yes, the pain and discomfort I experience is challenging enough, but I have been able to manage and deal with that more than the sleep problems.

For a very long time – probably back to mid-high school days – I have had trouble sleeping. I have tried numerous tricks without any really working. For whatever reasons, my body can’t get comfortable. Nowadays that appears to be because of RLS and PLMD, but before six or seven years ago I had no idea why. Depression, chronic pain, adolescences, stress, you name it… I and others have thought about it being a cause. It got to the point that I no longer talked about not sleeping unless I had a really, really bad night.

Continue reading “My Fight With Sleep… Has Been Weird”

Pain… Oh, the Pain!

restless legs syndromeNot that long ago, my wife made it clear to me she thought I was suffering from CPS. It made sense, though I didn’t want to deal with another problem. I seemed to always be in pain, I was fatigued, and I certainly was miserable. She knew I had RLS and PLMD, but she also felt that maybe my CPS was hiding underneath – kind of like I have discussed how I feel my RLS and PLMD was hiding under athletic pains and in other ways.

Continue reading “Pain… Oh, the Pain!”

My Fight With Sleep Becomes Addicting

Pain in KneesStrange to say… but my fight with sleep apparently became addicting at least for my body.

When I visited my new doctor at Johns Hopkins in early July I mentioned it was an eye-opening 90 minutes. While the doctor was certainly matter-of-fact about things, he also nailed down by symptoms, problems, challenges, and other things sometimes without hearing them from me first. He seemed to be describing my ailments, frustrations, and discomfort as if he had been my doctor and watching me for years.

One of the most eye-opening and frankly heartbreaking things he said was I had become addicted to my medication.

Continue reading “My Fight With Sleep Becomes Addicting”

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