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Vacation and RLS

Posted: Thu Oct 12, 2017 5:36 pm
by Oozz

New to the forums here. I’ve had primary RLS for about 2-3 years now. I’ve noticed that when I go on vacation my RLS clears up entirely! From the night I land to a few days after I get home. I’m not really sure how to interpret this. This isn’t just a one time thing, it’s been this way for every vacation over the past 1.5 years.

Could this mean my RLS is strictly stressed based? Is that even possible? Or, do you think it is some other factor that I am not accounting for?

I spoke with my doctor, who leads research at Johns Hopkins, and he attributed it to sleeping more when on vacation, thus alleviating the RLS cycle. However, that doesn’t make full sense because I am able to sleep the first night we land despite being sleep deprived.

Overall, I eat very healthy - less so I’m vacation. I’ve done several food restrictions and supplement regiments, but none worked. Neupro was working, but it was dopamine overkill and made me very socially anxious.

Isn’t RLS has been very bad lately, and I’m struggling at work, so any insight would appreciated.

Re: Vacation and RLS

Posted: Thu Oct 12, 2017 5:46 pm
by Rustsmith
Welcome to the board.

It is hard to say why your RLS would clear up while you are on vacation. Part of it depends upon your vacations. Years ago I noticed that my allergies cleared up while I was on vacation. My allergist figured it out, as a scuba diver, my vacations tended to be on liveaboard boats at sea. The amount of pollen in the air 50+ miles at sea was much less.

In your case, it could be the stress. It could be that if you traveled far enough to experience a time change that your internal clock that drives the RLS may have still been adjusting. Before I retired, I traveled extensively. So much so that I think that was aways jet lagged. It took about 2 months after I retired to sort of catch up and that is when my RLS went from being a minor annoyance to a major problem.

Re: Vacation and RLS

Posted: Thu Oct 12, 2017 6:00 pm
by Polar Bear
I have heard of RLS sufferers having a change in symptoms according to altitude, be it where they live or where they visit/holiday. High altitude having a negative effect on the RLS symptoms.

Re: Vacation and RLS

Posted: Thu Oct 12, 2017 8:17 pm
by ViewsAskew
Activity also can affect symptoms. People who are more sedentary because of work, say, may be more active on vacation. A moderate level of aerobic activity is associated with fewer RLS symptoms for many.

Re: Vacation and RLS

Posted: Fri Oct 13, 2017 4:35 am
by badnights
I can't think of any other reasons, except perhaps food or medicine - not in terms of healthier vs less healthy diet that you've already mentioned, but are there specific substances that you abstain from while on vacation that could be triggers for RLS/WED?

It's disconcerting to think that stress might have that much impact, but I suspect it can. My symptoms are much better now that my circadian cycle has synch'ed with the daylight cycle. Being out of sync was a huge physiological and psychological stressor.

Re: Vacation and RLS

Posted: Sat Oct 14, 2017 1:39 am
by debbluebird
I believe stress plays a big part.

Re: Vacation and RLS

Posted: Wed Oct 18, 2017 6:16 pm
by Oozz
Thanks for the responses everyone.

@Rustsmith - The locations have been so varied in terms of altitude, weather, and season, I have to say its an internal factor. The one instance we changed time zones dramatically (EST > Alaska) didn't really have an effect on me.

@polarbear - similar to above.

@badnights - I agree. I've eliminated nuts and lactose from diet as I rarely eat either on vacation. So far it has been a week and there has been no change in my RLS. I think stress is the underlying cause.

@debbluebird - thanks. This is what my intuition has been telling me.

I'm going to see my neurologist Friday to hopefully get an RX for relaxis. Since my RLS is only at night, I'm hoping this will help. Aside from that i'm going back to mediation regularly and potentially picking up a hobby for stress. I'll be sure to keep a log of what works and doesn't work. The worst thing about RLS is how isolating it can be when you try to describe it to people.

Re: Vacation and RLS

Posted: Wed Oct 18, 2017 7:05 pm
by Polar Bear
Oozz ---- Ahh.... and there we come to another difficulty.
Trying to describe RLS to a non sufferer. Beyond understanding.
If I am suffering and need to get up and move about I do so, often just saying ""you must excuse me as I have a movement disorder and walking/stretching may give me temporary relief"".
That might take care of my behaviour but does not really explain the need.

Very occasionally I have come across a very good description of RLS Symptoms. Not only trying to explain the actual symptoms but how they pull a person down, how they affect all aspects of life, how one thing leads to another, the lack of sleep etc.
I've often felt that it would be great to have such a description and just reach it to a non sufferer " for your information. "

Re: Vacation and RLS

Posted: Wed Oct 18, 2017 7:17 pm
by Polar Bear
I feel this poem expresses very vividly how mean RLS can be.....

Hi my name is restless legs. I am invisible to others.
They can’t see me or hear me but YOUR body feels me.
I can keep you awake until you're exhausted.
Remember when you had energy? In its place I have given you exhaustion.
If you have something planned I can spoil it
If you are looking forward to something I can take that away from you.
You didn’t ask for me but I choose you anyway.
Maybe you have a family history of me or maybe kidney disease or Parkinsons?
Whatever the case I am here to stay.
I can make an outing to the cinema or theatre pure hell.
You want a long car ride –don’t make me laugh!
Holidays ha ha I can spoil those before you even get there. I don’t like travelling.
Work? I can mess up that
You can pretend to others you have to get up during a meeting or a meal because you keep needing the toilet or have to make a phone call but you can never fool me.
You see it makes me laugh when you try to describe me to a non sufferer I make it impossible
You can buy whatever creams lotions and potions you like as I am unbeatable
Your friends and family will listen until they get tired of hearing how I make you feel
Some will say things like oh it’s cramp, you're having a bad day or well you're not getting any younger but not hearing you have had me for 30 years They will say things like just stretch your legs and it will go or just don’t think about it. Some will start talking about you behind your back while slowly you feel you're losing your dignity trying to make them understand
You will be told oh I know someone who had that and she had a paracetamol and she was fine
You might decide to up your game and see a doctor and I will grin as you try desperately to describe the impact I have on your life.
The doctors will have no idea and will put you on all sorts of medications.
They may try you on sleeping tablets or antidepressants but they’re no match for me.
Sometimes they will give you meds which actually make me worse because I am sneaky.
Are you too tired to exercise –that’s me.
Aching back and knees -yes that’s me.
Headache my gift to you.
Red dry eyes- I take the credit.
Irritable - probably me.
Sometimes I will lull you into a false sense of security and you will find a med that helps – you’re getting clever but not as clever as me.
I will up my game.
I will make you need to keep taking more and more.
I will visit you earlier in the day, I will strike other parts of your body your arms neck anywhere I please.

When you try to come off these meds you will realise just how evil I can be and you will need more and more medication. Do not try to explain me or expect any understanding, or people to realise how I impact on your life.
The ONLY place where you will get support and help and understanding is from others who live with me they are the ONLY ones who will understand

Re: Vacation and RLS

Posted: Wed Oct 18, 2017 10:21 pm
by Stainless
First, everyone with RLS seems to be different. That said distraction works wonders with me and I am a 50 year victim with serious symptoms. Just a night out on the town will give me a reprieve at least until I get home. A vacation works even better. I'm retired so I should have no stress, in fact vacations are typically more stressful. And my wife says my leg movement while I sleep can still be as bad as ever and recently woke me on vacation in a B&B and said I was kicking the bedframe and was surprised I was not injured.

About two months ago I seriously hurt my leg doing landscaping (lift with your knees). It was like a sports injury with stressed muscles & tendons deep in my thigh. My leg hurt especially while in bed but the RLS was not a problem. Now that my leg is better the symptoms are coming back.

And Rustsmith, I worked as a diver and accumulated several years of a 30 year career at sea, along with Caribbean liveaboards and resorts. When I had to stand night watches my legs would go crazy. Same as when I worked second or God forbid 3rd shift on land. But if I was busy diving all day or doing something to distract me, I usually have no or minimal symptoms until I get in bed. I did not find stress to be the problem but relaxation in a recliner or bed that sets it off.

And finally when I went through benzodiazepine withdrawal spending six months getting off 20 years of clonazepam, my RLS was at a minimum. But as soon as I was over the withdrawal, RLS kicked back in and Gabapentin by itself was useless. Such a strange disease. Best of Luck Oozz.

Re: Vacation and RLS

Posted: Thu Nov 09, 2017 12:33 pm
by Oozz
This doesn't make sense to me! I went to Las Vegas last week with my girlfriend for 5 days. The moment I got off the plane I was able to sleep like a baby. I slept each night in Vegas for 8-10 hours and the first 3 nights back I didn't have RLS/WED. I was eating all kinds of foods, drinking alcohol and coffee, and sleeping on a sporadic schedule.

I'm not sure how to explain this, but my RLS has been really bad this week. Any insight from anyone would be so helpful.

Re: Vacation and RLS

Posted: Thu Nov 09, 2017 2:26 pm
by Polar Bear
Oozz - Could it be 'holiday mode' and no stress?

Re: Vacation and RLS

Posted: Thu Mar 15, 2018 6:20 pm
by Oozz
I never saw this response, but, yes, it has to be.

Stainless wrote “My leg hurt especially while in bed but the RLS was not a problem”

My RLS went into remission when I thre my back out, both times. It also goes into remission Whenever I go vacation, when I moved in with my girlfriend, and when I moved into my new house.

Call me young and naive, but I’m convinced there is a link here. Its likely my generation, but I can’t give up on the idea that I can’t fix this.

After reading some of the posts on here, it is clear that my technical understanding of RLS is way behind. However, I’d like to use my ignorance as a means to explore things others would Dismiss. Isn’t there a growing body of research supporting the idea that environmental factors can change gene expression? I would say I’m a highly ambitious/stressed person, despite what people around me perceive. Isn’t it possible that that continual psychological stresses have somehow “fried my circuits” (poor dopamine and glutamite responses), a symptom of this being RLS.

Or, per the inflammation hypothesis, there is some underlying chronic inflammation that your body/mind is experiencing and the RLS is a symptom of that. Several studies have showed that the body adapts to chronic inflammation, thus, it could be experiencing inflammation but not sending the right signals to resolve it. Then, when an acute inflammation occurs, throwing my back out, those signals are turned on, relieving my RLS.

Pseudo-science I know, but at 31 I’m not ready I give up on any idea of a cure.

Re: Vacation and RLS

Posted: Fri Mar 16, 2018 7:35 pm
by ViewsAskew
Oh, lordy, I've still not given up on the idea I cannot fix it! And, I am rapidly approaching 30 years of actively trying to solve it!

Re: Vacation and RLS

Posted: Fri Mar 16, 2018 8:53 pm
by stjohnh
Oozz wrote: ...Isn’t there a growing body of research supporting the idea that environmental factors can change gene expression?

...Or, per the inflammation hypothesis, there is some underlying chronic inflammation that your body/mind is experiencing and the RLS is a symptom of that. Several studies have showed that the body adapts to chronic inflammation, thus, it could be experiencing inflammation...

You are absolutely correct, there is very strong evidence that a number of genes are very important in RLS, including lots of evidence of a predominant inheritance pattern. Also clear is that a number of environmental influences can change the genetic expression (these are called epigenetic factors), low iron, pregnancy, surgery, Etc. Chronic inflammation causes lots of changes in the body, I am not sure how much this is been investigated for RLS, however it is certainly conceivable. Lots of folks on these boards have mentioned that stress, anxiety and physical stress, including some that are chronic inflammatory states, have influenced the severity of their symptoms.
Studies of RLS pathophysiology are ongoing. Adenosine has recently been identified as an important pathophysiologic mediator of RLS symptoms. In view of the overwhelming evidence that genetic factors are crucial in the development of RLS, it's likely that a true cure will be in the form of some type of DNA alteration, perhaps some type of stem-cell treatment.

Not pseudoscience at all, just science has not quite caught up with all of the information related to RLS.