Another Newbie Here

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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Guest

Another Newbie Here

Post by Guest »

Hi everyone. So glad I found this site!

I've been suffering from what I assume is RLS for many years. I fit the criteria completely. I never knew what it was, until I dated a man several years ago who suffered greatly from it, and finally gave it a name for me.

Even as a young child, I remember my mom always saying to me "stop moving your feet" because I would constantly move them against each other when at rest. In retrospect, I can now see that I was moving them because I HAD to, not because I wanted to. Also, my grandmother has complained ever since I can remember, of not sleeping well at night because of her jumpy legs. So, there does appear to be a family connection.

As a young adult, I don't remember having the problem, most likely because I used to be a heavy pot smoker until my mid-30's (I'm now 46) and I now believe that smoking before bed most likely masked the symptoms from me. Also, I was not involved with anyone for a long time period, so I had nobody to tell me whether or not I was moving a lot while I slept.

When I met my husband, I discontinued my smoking as it didn't fit into our life together (easier than I thought it would be I might add :lol: However, I almost immediately began noticing an almost nightly routine of me awakening around 1am (ish) with unbearable creepy-crawlie feelings, a tugging and gripping feeling most of the time in my left calf area. My poor husband (then boyfriend) would of course be awakened by my leg movements, as I'd jerk them around to try and get that feeling out of them. I'm sure you all can understand :D He'd massage the leg for me, which would help enough to get me back to sleep. Or, I'd have to get up and walk around a bit before I could get back to sleep.

I also noticed that whenever I had taken a narcotic like codeine or the like (such as when recovering from knee or dental surgery), that I slept quite soundly. I began to make a correlation. Also, I had rather recently been on Neurontin for a bit over a year as an adjunct to other meds to help with severe nerve related back pain. The whole time I was on the Neurontin, I did NOT have the problem!

I recently started taking a small dose of Elavil (10mg) at night to help me sleep for other problems related to my arms/hands (diagnosed with a pinched nerve in my neck and Cubital Tunnel Syndrome which causes parts of my hands to fall asleep while sleeping). But, it seems the Elavil is not good for the RLS problem, as I am finding my legs quite jumpy while watching tv on the couch in the evening, which is much earlier than I usually get the symptoms. I have an appointment with my orthopedist in a couple of weeks to assess how I'm doing on this medication and will have to mention this to him. Although it does seem to be helping me sleep better - but so did the Neurontin.

So, I started to wonder, maybe it is time to see a neurologist or sleep specialist. I'm not quite sure why my G.P. has never suggested this, I certainly have complained to him about this problem on several occassions.

So, which do I start with? I figured all of you experts out there would be better suited to giving me advice, than anyone else.

Thanks!
Laurie

ViewsAskew
Moderator
Posts: 16585
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Wow, Laurie, you've figured out a lot by yourself. You're right about smoking pot, opioids and anticonvulsants (like Neurontin); they all help RLS. And, you're right about Elavil - it makes it worse for most people. It's an older antidepressant and most ADs make RLS worse (most, but not always).

Does it affect your quality of life? If so, then maybe you are ready. If you can manage it and get by with lifestyle changes, then maybe you can wait. Each of us had a different point when we decide to get meds. Even if you do get meds, it's important to do the lifestyle stuff, too. It can help us need less. Your diet may trigger it as may your sleep schedule, alcohol consumption, iron ferritin levels (need to be above 50 for an RLSer), caffeine consumption, exercise level, etc. Might want to read our replies to Katie http://www.restlesslegs.org/phpBB2/viewtopic.php?t=994, and this one too http://www.restlesslegs.org/phpBB2/viewtopic.php?t=585.

Both of those links list other stellar advice given by some of our regulars. Happy reading and hope the legs get quiet.

Ann

LadyFox
Posts: 29
Joined: Wed Jul 06, 2005 1:29 pm

Post by LadyFox »

Thanks! My diet, is actually very good. I lost a lot of weight this past year and finally know how to eat properly, so I'm pretty sure that isn't part of the picture. Also, I do not drink alcohol, very rarely (maybe once a month, if that). My caffeine consumption is pretty low as well - I only have 1 cup of coffee in the morning and do not drink soda at all. Very rarely, I might have an iced tea during the daytime - but there is so much ice in it, that I doubt the tiny bit of actual tea I'm consuming could cause such a nighttime commotion, but maybe I'm wrong? As for exercise - what is that? I'm kind of a slug - I walk a lot, but that's about the extent of my working out.

Thanks again for your help. I printed out one of those symptom checklists and I'm going to start with a neurologist and let that person guide me forward. It does affect my quality of life at times. Sure does my husband's :lol: I find it very frustrating, a big annoyance.

BTW, Sorry if this still says "guest" tho, I'm logged in but for some reason it wasn't picking up my name. I think I have to find out about that :)

Laurie

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