I thought I was going through side effects

[nat2bad]

First I want to say thank you to this sight! It's nice to know I'm not crazy!

In Dec 04 I went to the emergency room with severe neck and arm pain with loss of function in my left arm. Turns out I had a slipped C5/6 disk that was pushing 25% into my spinal cord. They admitted me that night to do surgery the next day and it's been one problem after another since! I just read SusanM and I can relate! After the surgery I was still having pain so the Dr gave me Neurotin. When my hair started falling out I asked to get off - STAT! I thought they took me off a little too fast because I started having these weird sensations and I couldn't sleep. I like to describe it like I'm hooked up to an electric current that I can't turn off and every so often a surge goes through me causing me to jerk!

Well, I've been off the Neurotin for a few weeks now and I'm still having the sensation... sleep is overrated! (Especially knowing I have to be to work in 5 hours) I caught a glimpse of a commercial a few days ago talking about RLS and it made me wonder if that's really what I'm going through. The more I've read, the more I think I miss diagnosed myself!

Before the surgery I was ALWAYS active, rock climbing, running, weight lifting... you name it! Since the surgery I've had set back after set back and I haven't been able to get back in the shape I'm used to. I still don't drink, I eat pretty good and I take vitamins... so I'm really hoping that once I get back into my groove it will reduce the symptoms - because I can't stand the thought of taking any more medications!! Knowing this site is here really helps, at least I know there are people out there that I can lean on. Thanks again for putting this together!!

[Sara]

Hi, Nat and welcome--

Your description of an electrical current sounds familiar to me. So sorry you're having such discomfort. Everyone here can relate.

Not sure about the neurontin connection specifically, but there are others here who have had onset/worsening of RLS following surgery or illness or medication. That might certainly be a contributing factor for you, too.

Do keep in mind that although RLS (for people with "primary" RLS anyway... family inheritance, as it were) is a condition which is notoriously progressive with age, many of us here have experienced bad "progression" in symptoms, followed by times of less intensity. When I first came to this site, a couple of years after I heard about RLS the first time, it was because I started having RLS 24/7. I thought.... oh, no, my life is over, it's going to be like this forever, now what?....

But THANKFULLY, after a month or two of that, I returned to not much more than my previous level of symptoms for several months. At present I seem to have SOME sort of RLS daily, but it varies in length of time and severity, so I'm still able to manage my life without meds for the time being.

So hang in there, and we'll definitely all hope that you'll also experience some reprieve down the line from the intensity you're currently feeling. Ohters here with more med experience and scientific knowledge than me will probably have comments related to the neurontin after effects, surgical recovery issues. Sure hope that you can get some of your fitness and sense of adventure back soon. I know it's frustrating to "lose" parts of a lifestyle you loved.

Sara

[nat2bad]

Hi Sara! Thank you for your kind and encouraging words. It's funny, I do remember having these sensations in my legs when I was younger, but not to the extent that I have since the surgery. I also remember having this very strange dream... hopefully no one will think I'm crazy but... in my dream something came into my room while I was sleeping and pushed some pole like object into my legs. Maybe it was my subconscious trying to justify what was going on! haha

I'm soo glad to see that you're able to continue without meds. If I have to start later on, then that's something I'll deal with... for now I just want to get past all that I've been through the past 7/8 months! Hopefully I can be help for someone in the future just as many here - just by posting their stories - have helped me. With all that I see others going through, I don't feel I have the right to complain... but I do want to wish the best for everyone out there and thank you for your willingness to help others like me!