Please Allow me to Introduce Myself...
Posted: Tue Nov 05, 2019 10:54 pm
Hello,
I'm a 56 year old married male, and have suffered through RLS for the past 30 years or so. It is a hereditary condition for me; my father and at least one of my aunts that I know of had it, and my two sons by my first wife (29 and 27) are beginning to have episodes.
Here are the things I currently know about my condition.
I know that, for me:
The Bad
My symptoms generally start around 10pm or as soon as I went to bed, whichever came later, although if I'm really overtired (not just my normal overtired) they can start anytime of the day
They are confined to violent, uncontrolled, movement in both legs (although my right leg is worse), and sometimes my arms
They are magnified by cold, which is an issue living in Michigan. Wearing sweat pants to bed helps
My current meds are Mirapex - 1mg x2, Gabapentin 600mg x1
My current meds don't work very well
I tried covering with an additional 1mg of Mirapex. I might as well have taken a Tylenol for the relief I received.
I'm in augmentation.
I didn't even know that was a thing until about six months ago
That Mirapex has a list of side effects that, had I realized how lengthy and bad they were, I may not have decided to start using drug.
I've been continually exhausted since 1989
My symptoms are worse, the more tired I am
Walking around my home helps (I don't trust myself to go out when I'm symptomatic)
Until very recently, I kept the extent of my symptoms to myself. Which means:
I never went to bed with my wife
I actually avoided going to bed because I knew the inevitability of what was to come
Once in bed, I'd sneak out as quietly as I could so I wouldn't wake her once symptoms started
I would downplay what my nights were truly like
I finally admitted to myself that suicide as a concept was not out of the question
I realized I was over my head and in a lot of trouble
The Good
First and foremost, I have an incredibly amazing wife, but more on her in a bit.
Through this all, I have been able to hold a job
Through this all I have not hurt myself or anyone else because I fell asleep at the wheel on the way to work, although I did bump fenders with someone in July 2018 (I didn't sleep most of the month)
Hot baths, almost to the point of scalding, seemed to calm my nerves. Sometimes.
At this point in time I've actually found something that alleviates all of my symptoms, but more on that in a bit as well.
The turning point came over a series of days/weeks. I reached a point in September where I couldn't take it anymore, so I broke my self imposed silence, and told my wife what I was truly experiencing. Not a condensed, stoic, all will be well version, but the truth. How the sunset brought a bone deep dread, and how the empty house turned into my own private hell of sleep deprivation and my body fighting against what it craved so badly. I told her about how I would whine, beg, and bargain with anything that would listen. How I had somehow convinced myself that eating would give me relief. She then starting staying awake with me, as best she could. But her alarm goes off at 4:40am. But still, from that point on, now that I allowed her in, she's there whenever I need.
She's offered to rub my back, and over the years I've taken her up on her offer, but when I'm symptomatic, a backrub is agony. It's like every nerve is on fire. And it causes all of my nerves to fire harder, if that makes sense. But one night, I asked her to just squeeze my right leg just above the knee. At first it, like the backrub, caused my leg to jerk uncontrollably. But after some positioning, the jerking in my right leg slowed, then stopped and the jerking in my left leg started. So she went to work on my left leg and got that to calm down, only to have my arms start up, one after the other. For 45 minutes she applied pressure to whatever limb moved and eventually, the stopped moving. It was a miracle!
She kept this up every night for two weeks. Some nights took longer, none less, and it didn't always worked enough for me to know there was something good here. And to know that, if I needed it, she'd keep this up for the rest of our lives, but I couldn't ask that of her. I had to find something else that would give me relief and her a break.
My first choice was our automatic blood pressure machine. I have an extra large cuff which I managed to get around my calf just below the knee. The first time I tried it, I hit the button and let it inflate until it errored out three times, my leg jerking violently each time. I took the cuff off after the third time and my leg was quiet! And it stayed quiet for the rest of the night. I used this method nightly with mixed results but, again, progress was being made, I just needed something better than a blood pressure cuff.
I looked at the PCD'S available on Amazon, but they didn't seem right - I didn't want a full leg and foot unit, just something to apply pressure where it hurt the most. I mentioned the situation to my boss. I had kept her informed all along because I felt that she needed to know about this condition that was impacting the life of one of her employees so severely. You know, so if she came to my desk and found me asleep (which has happened on more than one occasion) she knew why. Anyway, she had undergone an outpatient knee replacement in August, and had been sent home with a PCD designed to just cover her calf. She loaned it to me and, with the exception of two self induced situations where I was messing with my Mirapex dosage, it completely controls my symptoms. I know it's only been two weeks, and I have that black cloud mindset that's telling me that it's going to stop working at some point, but for me, for now, this device is truly a lifechanging miracle. It's given me something I haven't had in a long time; hope.
I realize that I've rambled on for quite a bit now, and if you're still reading this; thank you. I don't know if my story is helpful to anyone, but I hope it is. I marvel a the depth of pain that I've encountered in the short time I've been visiting this board, just as I marvel at the care, compassion, and love that I find here as well. Thank you for allowing me to be a part of this community.
I'm a 56 year old married male, and have suffered through RLS for the past 30 years or so. It is a hereditary condition for me; my father and at least one of my aunts that I know of had it, and my two sons by my first wife (29 and 27) are beginning to have episodes.
Here are the things I currently know about my condition.
I know that, for me:
The Bad
My symptoms generally start around 10pm or as soon as I went to bed, whichever came later, although if I'm really overtired (not just my normal overtired) they can start anytime of the day
They are confined to violent, uncontrolled, movement in both legs (although my right leg is worse), and sometimes my arms
They are magnified by cold, which is an issue living in Michigan. Wearing sweat pants to bed helps
My current meds are Mirapex - 1mg x2, Gabapentin 600mg x1
My current meds don't work very well
I tried covering with an additional 1mg of Mirapex. I might as well have taken a Tylenol for the relief I received.
I'm in augmentation.
I didn't even know that was a thing until about six months ago
That Mirapex has a list of side effects that, had I realized how lengthy and bad they were, I may not have decided to start using drug.
I've been continually exhausted since 1989
My symptoms are worse, the more tired I am
Walking around my home helps (I don't trust myself to go out when I'm symptomatic)
Until very recently, I kept the extent of my symptoms to myself. Which means:
I never went to bed with my wife
I actually avoided going to bed because I knew the inevitability of what was to come
Once in bed, I'd sneak out as quietly as I could so I wouldn't wake her once symptoms started
I would downplay what my nights were truly like
I finally admitted to myself that suicide as a concept was not out of the question
I realized I was over my head and in a lot of trouble
The Good
First and foremost, I have an incredibly amazing wife, but more on her in a bit.
Through this all, I have been able to hold a job
Through this all I have not hurt myself or anyone else because I fell asleep at the wheel on the way to work, although I did bump fenders with someone in July 2018 (I didn't sleep most of the month)
Hot baths, almost to the point of scalding, seemed to calm my nerves. Sometimes.
At this point in time I've actually found something that alleviates all of my symptoms, but more on that in a bit as well.
The turning point came over a series of days/weeks. I reached a point in September where I couldn't take it anymore, so I broke my self imposed silence, and told my wife what I was truly experiencing. Not a condensed, stoic, all will be well version, but the truth. How the sunset brought a bone deep dread, and how the empty house turned into my own private hell of sleep deprivation and my body fighting against what it craved so badly. I told her about how I would whine, beg, and bargain with anything that would listen. How I had somehow convinced myself that eating would give me relief. She then starting staying awake with me, as best she could. But her alarm goes off at 4:40am. But still, from that point on, now that I allowed her in, she's there whenever I need.
She's offered to rub my back, and over the years I've taken her up on her offer, but when I'm symptomatic, a backrub is agony. It's like every nerve is on fire. And it causes all of my nerves to fire harder, if that makes sense. But one night, I asked her to just squeeze my right leg just above the knee. At first it, like the backrub, caused my leg to jerk uncontrollably. But after some positioning, the jerking in my right leg slowed, then stopped and the jerking in my left leg started. So she went to work on my left leg and got that to calm down, only to have my arms start up, one after the other. For 45 minutes she applied pressure to whatever limb moved and eventually, the stopped moving. It was a miracle!
She kept this up every night for two weeks. Some nights took longer, none less, and it didn't always worked enough for me to know there was something good here. And to know that, if I needed it, she'd keep this up for the rest of our lives, but I couldn't ask that of her. I had to find something else that would give me relief and her a break.
My first choice was our automatic blood pressure machine. I have an extra large cuff which I managed to get around my calf just below the knee. The first time I tried it, I hit the button and let it inflate until it errored out three times, my leg jerking violently each time. I took the cuff off after the third time and my leg was quiet! And it stayed quiet for the rest of the night. I used this method nightly with mixed results but, again, progress was being made, I just needed something better than a blood pressure cuff.
I looked at the PCD'S available on Amazon, but they didn't seem right - I didn't want a full leg and foot unit, just something to apply pressure where it hurt the most. I mentioned the situation to my boss. I had kept her informed all along because I felt that she needed to know about this condition that was impacting the life of one of her employees so severely. You know, so if she came to my desk and found me asleep (which has happened on more than one occasion) she knew why. Anyway, she had undergone an outpatient knee replacement in August, and had been sent home with a PCD designed to just cover her calf. She loaned it to me and, with the exception of two self induced situations where I was messing with my Mirapex dosage, it completely controls my symptoms. I know it's only been two weeks, and I have that black cloud mindset that's telling me that it's going to stop working at some point, but for me, for now, this device is truly a lifechanging miracle. It's given me something I haven't had in a long time; hope.
I realize that I've rambled on for quite a bit now, and if you're still reading this; thank you. I don't know if my story is helpful to anyone, but I hope it is. I marvel a the depth of pain that I've encountered in the short time I've been visiting this board, just as I marvel at the care, compassion, and love that I find here as well. Thank you for allowing me to be a part of this community.