Have RLS, chronic depression and a child with likely RLS

[sdbrown]

I'm 42 years old and have likely had RLS most of my life. Started with they typical "growing pains" bad as a kid. Don't remember much in my teens. My twenty's I just remember never being able to sit still in a chair, movie, etc. without always shifting positions and moving my legs (but never associated it with RLS).

In my 30's and after having 2 kids, my RLS was growing worse, becoming more frequent, often uncomfortable in the evenings (thought it might be sore feet from bad shoes, overweight, out of shape, etc.). Eventually I saw the dr saying I thought it might be RLS, and she said the same thing. That was about 2 years ago I think.

She started me on Mirapex in the evenings, but I also have chronic depression that had been very well managed with Zoloft for the 10+ years that my RLS had been getting worse. I tried to switch to Wellbutrin then and had a horrible reaction, so had to go back to Zoloft...balancing act between lower dose of Zoloft (barely managed my depression) and higher dose of Mirapex (1.0) -- which I've been on for a year now.

After I was formally diagnosed, my mom informed me that my grandmother had had horrible RLS too (never mentioned it before!). And since my 8 year old was very young he has constantly had trouble with pain in his lower legs/feet, mostly at night and often waking at night either clutching his legs or with night terrors. He's also been a very restless sleeper, often kicking covers off and even rolling out of bed. I'd like to take him in to be checked out, except that he's been scared of having a sleep study (my husband had one for sleep apnea) and I don't think meds are encouraged for kids. His is intermittent right now too.

I've had augmentation symptoms, (more frequent, morning and all day RLS, earlier in the evenings....you name it. We've had some family stress and my depression has gotten worse too. Saw my Dr. Friday who is trying me now on Cymbalta and in a week trying to switch to Requip (didn't want to change both at the same time). I'm so frustrated by this horrible syndrome....depressed that it gets worse with age, and it pains me to see my son facing a lifetime of this too!

Really needed a place to vent!!
Thanks,
Sherilyn

[Scarlett46]

Hey Sherilyn -
Your story sounds a lot like mine. I'd bet that I've had RLS since I was a child. It got much worse after having my daughter. And she has (off and on) shown possible signs of RLS too - what she describes as "itchy legs" at nighttime.

I also suffer from depression. Throughout the years, I've tried a few different meds - and it's been off and on... But I'm currently taking Wellbutrin (which seems to barely keep up) for the depression and FINALLY, Requip seems to be managing the RLS and daytime sleepiness. I also augmented almost immediately on Mirapex, and it seemed to be a permanent change - until I found the right dose of Requip...

Although over the past several months (dang, almost a year now!) both have gotten harder to manage... I'm a runner. Not a fast runner. Not a long distance runner. Just a runner. It's my sanity. And it keeps the blood pumping through my already moving legs. But I've been injured since last November, and have been unable to run. So I'm still just a step behind.

Well! Sorry... I didn't mean for this to be a post all about me!
What I meant to say is WELCOME!
Vent away... This is the place to do it, because we've all been there. There is lots of great information here, and very helpful people too.

[sdbrown]

No, I'm very glad to hear about you. (It's an odd feeling, because I don't wish this all on anyone, but I need to know there are others out there that I can talk to and can understand the frustrations.

How old is your daughter? Oh, I love Gone With the Wind, and your quote at the bottom is great!

I wish the Wellbutrin had helped....I had worse depression and horrid anxiety and jumpiness on it too. My dr even wrote in her notes "Wellbutrin was a disaster." The Cymbalta is an SNRI instead of a SSRI, and does have RLS listed (way down in a comprehensive list) as a possible side effect. I've been on half-dose of it with half-dose of the Zoloft and then this weekend I go to increased Cymbalta only. I do feel the acute depression symptoms eased a bit, but am waiting until next week to see how I do.

Do you also find for you that diet impacts the RLS. I know I hear about the suger correlation, and I'm also dealing with an insane sweet tooth and sugar cravings...especially when stressed. I'm not exercising as much as I should (genetic weight issues and diet also a problem with that), but have a plan to start a more regular exercise regimen next week.

Again, it helps to hear about others struggling with the same issues, so thank you very, very much!

[Scarlett46]

It is nice to know there are other people out there that we have this in common with...

My daughter will be 13 tomorrow. She's becoming more active in sports these days, and I haven't heard her complain about her "itchy legs" at night in a few years. But it was always in the back of my mind when she was younger. Actually, the first response was that of a typical parent - that she was making up excuses not to go to bed! But when I thought about it more, I could relate to her complaints and would always wonder...

I'm not sure if/how my diet affects RLS... except that I feel much better and healthier overall since I started the South Beach Diet. I lost about 35lbs and started exercising regularly. All of these definitely affect the depression. Since I've been unable to run, the depression has gotten worse, and I've gained back most of the weight because I just didn't "care" about what I ate. I'm back on track now though... I do best when I think of it as a guide to eating healthier for the ret of my life, rather than a "diet". Now I've just got to get this hip problem fixed, so I can get back to running!

[ViewsAskew]

Hi Sherilyn,

These disorders that involve brain chemistry are just wicked, aren't they?

Do keep in mind that while this SNRI you're trying may not work, chances are high that you'll find one that will and that won't make the RLS worse. A study a year or so ago showed that the risk wasn't as high as previously thought. From people who report on this site, it also seems that most people can find one that isn't a problem, even if another one was.

Hope that happens soon for you. Also hope that you find more connections here - it is amazing how helpful it is to hear of other people's RLS misery, lol - we don't feel nearly as alone.

[Polar Bear]

Hi Sherilyn

I'm sorry things are so tough at the moment, its bad enough dealing with RLS without having to deal with other conditions and their medications.

Just want to say that around about last March I started on Cymbalta, only at 10mg. Doc had suggested an anti depressant on several occasions and I always resisted because of the risk of it making the RLS even worse. Doc cannot prescribe Wellbrutin here in the UK for depression/anxiety.

Anyway.... doc prescribed dose of Cymbalta 10 mg so we could go carefully bearing in mind the RLS. After about 3 weeks I started to feel a bit better and there was no sign of any increased RLS. So although this dose is below the 'average' I continued and did not increase it.

I have now been on it 6 months and as far as I can tell there have been no side effects from it with regard to RLS.

(Hard to tell if there are any other side effects from it cos I am on so many meds for other conditions, its hard to tell what causes what!!!)

I hope your son's intermittent symptoms become a thing of the past.

[sdbrown]

what's that old saying.....misery loves company. there's something very therapeutic about just venting. People, even loved ones, who don't have RLS cannot begin to understand, and this place has the feeling of "FINALLY...a place where I belong!"

Scarlett....that's interesting about what you said about thinking your daughter was avoiding going to bed. My son frequently complained about his legs right around bedtime...wouldn't even say a thing until "Time to go upstairs...." and then he was rubbing his leg and complaining. I do think some of it was exaggerated, but he does seem to have the RLS. My husband never seemed to take him seriously at all, but I too, after a while started to make a connection.

Polar Bear.....My dr. started me on 30mg of Cymbalta while I taper down the Zoloft and then up to 60, so we'll see how it goes.

[SquirmingSusan]

Hi Sherilyn, welcome to the discussion board. Sorry to hear you're having a rough time of it right now. It can take a lot of trial and error to find the right medications, especially when you have a couple of conditions that don't play well together as far as the meds. I also have depression as well as RLS, and fortunately the antidepressants don't bother me in the RLS department, except for the first week or two if I switch to a different one.

My son shows signs of having RLS as well, but not often enough to want to do something for it. One day he started running in place and said that he just had to move his legs. My kids are always telling me how generous I am to share my RLS and narcolepsy with them.

Feel free to vent away here. We all know what you're going through. And most of us have eventually found medications or combinations of medications that work for us. So hang in there. It will get better.