I first mentioned my restless legs about 5 years ago. Since then, I have commented or started multiple threads on this sight in search of help. Honestly, the only medicine that truly helped my RLS was the occasional hydrocodone that I took whenever I happened upon a sports injury. Here is the text from a thread I started last November when I was just about on the verge of going crazy.
I was wondering about something. So I started on RLS prescrips about 5 years ago due to, what I thought to be, pretty severe symptoms of RLS. What I didn't anticipate was that my definition for severe was severely underestimated. What I mean is that the symptoms I've been dealing with over the past year, using different meds, are FAR, FAR worse than the symptoms I had when I first began taking meds. Quick history:
Started Mirapex around 2013.
Switched to Requip around 2015.
Switched to Neupro several months ago.
Each switch coincided with the previous med losing effect. Now with Neupro, I'm having about a 60% success rate meaning 40% of the time I'm in excrutiating pain and terrible, sleepless nights not to mention side effects of overeating and leg pain. I've added Trazadone for the past 2 months with varying levels of success.
I'm set to see two different doctors in November. The first is a neurologist; the second is a sleep doctor.
So my question is thus: If I were to completely wean myself off of all drugs, would my symptoms go back to what they were before I took any meds or have I created a cycle in which my body will always "need" the drugs for normalcy? I'd really like to go back to where I was before I started the prescrips. I had occasional bad nights but they were nothing compared to what I'm dealing with now.
Here's what happened next.
After some pretty severe symptoms from the Neupro patch (blisters at the application point, eating disorders, sporadic success sleeping), I went to a neurologist that specialized in sleep disorders in November. I was switched to something (I can't recall the name) that was for anxiety. I knew this was going to be a disaster. Over the next 6 weeks, I went from this prescrip to another then another. Each time I called the neuro (getting an appt took over 3 months), I was just prescribed a new drug. At one point, my legs were so bad that I ended up punching them late one night, missing a punch, and accidentally hitting my bike trainer, sending me to the ER with, what I thought to be, a broken wrist.
On another occasion, I ended up at school (I'm a teacher) in such a zombiefied state that, luckily enough, another teacher saw me and sent me home before the principal saw me. It was a combination of having no sleep for 3+ nights plus whatever side effects that particular drug were giving me at the time. I think I went through 3-4 different drugs that were sent to my pharmacy without any explanation as to how I was to take them. I just went by the label which, for at least 2 of them, were instructions for another type of issue (anxiety). Needless to say, the absolute hell over last summer that led me to finally seeing a neuro was nothing compared to what I was going through during this 6 weeks.
Needless to say, I was at a total loss. I was tired of these drugs and the side effects. I didn't want to take the route of trying to find a doctor that prescribes narcotics. It just so happened that I had a problem refilling my prescrip right around Christmas so I said, "F it" and decided to just stop everything cold turkey. I figured it couldn't be worse than what I was already dealing with.
Now to the point of this extremely long post. It is now April 27th and I have not had ONE ISSUE WHATSOEVER WITH RLS. I waited several months to put this info on here in case I was just going through some sort of honeymoon phase whereas the symptoms would return. Not only do I sleep - 8 hours every night, but I also do not have any symptoms during the day. My wife has occasionally seen me just laying on the couch, wide awake, doing nothing. I've told her it just feels so good to be able to sit still. (My symptoms got so bad at times that having something like the flu or a severe cold were even worse than normal due to the fact that I didn't have the ability to just relax and recover.) I am also not having any other tertiary symptoms. I no longer wake up 4-5 times a night feeling the odd need to eat. I don't have times during the day where I'm so tired I almost fall asleep standing up. I no longer actually hope that I get hurt enough to have to get a hydro prescription.
To the point. The reason I write this is to offer hope to some out there. Yes, I realize that we're all different and that, what worked for me, may not work for others. Perhaps I never truly had RLS and the meds had the opposite effect and just drastically enhanced my inability to sit still. (I've always been pretty hyper.) Nevertheless, I just wanted to include my own story in case it helped others. If it worked for me then perhaps some of y'all might also see improvement at some point in the future. I know what some of y'all are going through and pray that everyone on this board obtain some sense of normalcy at some point. In the meantime, thanks to everyone on here that offered assistance, advice, hope, and courage to me through the years. Take care.