RLS - found some relief!

Old Feb 18th, 2004, 12:01 PM
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RLS - found some relief!

Hi - I posted on restless leg syndrome before and since then have done a lot of research. I suffer from RLS (NOT DVT) and it actually makes me physically sick, besides driving me nuts on any flight over an hour or so. I found something that has not cured it completely but takes away about 95% of the horrible tingling feeling in your bones. One time it actually traveled up through my ribs and down my arms. After that I could not take it anymore. So here are some tips.

The two most helpful things are support under your legs. I bought a little air bed from www.magellans.com site "First Class Sleeper" which works great also as a leg rest when reversed.

and

Ask your doctor for some valium for travel - this helped the most!

A square shaped slim carry on bag which doubled up as a leg rest. Worked great. Slant it against the seat portion and rest your legs on it.

Cut out caffine for a few days before flight.

Bring a water such as SmartWater with electrolytes.

Start taking magnesium and calicum now.

Tylenol pm, or if you prefer natural products Valerian Root helps to get you off to sleep.

One website advised taking a codine based painkiller (but I have not tried this yet).

Avoid alcohol I guess.

Hope this helps, if anybody has any other hints - please let me know.

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Old Feb 18th, 2004, 12:22 PM
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If you intend to take a narcotic (codeine is a narcotic) or other substantial hypnotic (a "sleeping pill") - - and take the Valium on top of that, you should disclose this to the doctor who will prescribe the Valium to you.

This would be a bad idea for some individuals.

Best wishes,

Rex Bickers, M.D.
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Old Feb 18th, 2004, 12:31 PM
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Rex - any other hints for this awful symptom that nobody seems to know anything about. It is so uncomfortable.

Thanks A
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Old Feb 18th, 2004, 12:32 PM
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Sorry, no. I am a neonatologist, a pediatrician who specializes in newborn intensive care.

I do understand that this is a condition that is most unsettling/disabling.. and not as rare as some doctors might believe.
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Old Feb 18th, 2004, 12:36 PM
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If Valium is not available you might want to try plain old Dramimine - it is also a muscle relaxant.
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Old Feb 18th, 2004, 12:41 PM
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Thanks guys. I wish I could find a cure for this, I am late 30's now and it is getting worse as I get older especially if I fly, sometimes in trains or long car rides and an odd time in bed. My grandmother also suffered from this. Its a really bad thing.
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Old Feb 18th, 2004, 01:00 PM
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Could I ask how tall you are? I couldn't fit anything to "rest my legs on" in a plane and I'm only 5'9". Lucky if my knees don't hit the seat in front of me!
I am sympathetic - I have a friend with this syndrome.
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Old Feb 18th, 2004, 01:33 PM
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Aine,

How weird. I had no idea there was a name for this! After I read your post and your symptoms, I googled on restless leg syndrome and found www.rls.org. At least now I know what it's called. It's hard trying to explain to people that it isn't fear of flying or claustrophobia. Discovered a couple of months ago that my mom has the same thing. I'll have to tell her what this is.

It's tough, especially when we fly from the central US to Australia, which we do from time to time. I've had to resort to Xanax and whatever else to make it through - and I'm usually one that won't take a Tylenol unless I absolutely have to. I have discovered that Ambien takes me from being a agitated seatmate to completely insufferable.

Thanks for posting about this. Just a little gratifying at least to think it isn't some family eccentricity.
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Old Feb 18th, 2004, 02:04 PM
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Anyone who can take a codeine AND valium and still be awake must be pretty used to the stuff!

Since my sis uses valium for flight jitters, I tried it the last time. Personally, I felt very aware of my surroundings, hence still nervous.

I'm w/ NYTraveler, Dramamine (original variety) works the best for me. I get so sleepy and relaxed I don't care when we're taking off and I don't get restless legs either.

I have had RLS on occasion and it can drive you crazy, that's for sure! You have my sympathy Aine.
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Old Feb 18th, 2004, 05:19 PM
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Hi Aine, I also suffer from RLS, nearly every evening. A few weeks ago I signed up for a research study which involves prescribing Ropinirole (also known as ReQuip) for RLS. Ropinirole is a treatment for Parkinson's disease. My doctor said RLS is a parallel disease to Parkinson's, similar but it does not evolve into Parkinson's. I have gotten alot of relief with this treatment - namely, I can fall asleep at night so much more easily and I don't feel the need to get up and walk to relieve the symptoms. I am so glad I will still be in the study next month for the 10 hour flight to London. For the first time I'm not dreading it. My doctor is willing to prescribe it for me after the study is over even though the FDA has not yet approved it for RLS, so you might check with your doctor to see if he or she would do the same. I have found that it really has improved my quality of life, mainly because I'm sleeping so much better. I haven't had any side effects from taking the medication.
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Old Feb 18th, 2004, 05:29 PM
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Here's another site with information about Restless Leg Syndrome.


http://www.ninds.nih.gov/health_and_...tless_legs.htm
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Old Feb 19th, 2004, 05:22 AM
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I bought something last night in my local pharmacy called Hyland's Leg Cramps with Quinine (natural). I could not believe that I found it there. I looked through this site for more info on RLS and saw that one person recommended this. I also bought the Dramamine. I did a search for the product and read the reviews. People take this for RLS also and say it works great and immediately. I am taking a flight tomorrow night from NY to Ireland and will try it out and post again next week on how it works.

CLIFTON: a question for you? I rarely take medication but once when I took a sleeping pill that I begged from my mother, it did not make me sleep and did not take away the RLS so I was in a groggy cranky fidgity state for the whole flight. What did you mean by the Ambien made you completely insufferable? was it the same as what happened to me. The thing with RLS is since nobody knows too much about it - its trial and error of what works. Its terrifying to think you could take something that would make matters worse.
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Old Feb 19th, 2004, 05:29 AM
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Amanda: Hi I am only 5.5 and I feel squished in those seats. I have found if you check in really early, be one of the first to check into your flight (3 hours) you will be able to grab a exit row for yourself. Its worth it for somebody as tall as you to spend the extra hour at check in to be able to grab an exit row. I know you are not supposed to block the exits but I think you can discreetly place something under your calves after take off and remove it before landing. The thing I mentioned (first class sleeper) would work well for you. It is a little airbed that you partially inflate for your back - but if you fully inflate it, and sit on the flat headrest part of it, it becomes a perfect little wedge leg rest. Its $50 but so worth it.
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Old Feb 19th, 2004, 06:53 PM
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Aine,

Yes, that's a pretty good description of my experience with Ambien. I don't think it was a side effect as much as it made me even more tired but couldn't put me out completely which is always a lousy state to be in for me.

By the way, she hadn't told me this but my mom had done a sleep disorder test lately and was actually diagnosed with RLS by her doctor who was watching her as she slept. I found this out last night. She said he prescribed a medicine that is actually working pretty well for her, and her symptoms are pretty severe. She told me the name and now I forget. The brand name started with in "S", the generic with a "C". Probably best that I forgot, as it's better really if it's a doctor making that call. I might go see about it. I'm 40, and noticed it probably 8-10 yrs ago and it seems to be getting more annoying as time goes on.

Also, I actually bought a little travel pillow set (U shaped neck pillow and square flat pillow combo) at Walgreens that helped on our Christmas trip to Australia (20 hours in flight, each way). I sat on the neck pillow, keeping it out to the front edge of the seat. Wasn't the plan when I bought it, but it seemed like a good idea at the time. Keeping pressure off the backs of the legs seemed to help for some reason, or maybe it's just more comfortable. Not sure.
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Old Feb 20th, 2004, 04:58 AM
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Clifton: Thanks - YES keeping pressure of the backs of the legs helped me also. I put the pillow they give you right under my knees so my thighs were raised a little. Its so weird. Mine started about 8 to 10 years ago also and I am coming up to 40 AND its getting worse. Im flying tonight and you should see the amount of stuff I have. I just did some searches yesterday and emailed this foundation. Their email message back is as follows and may help you and/or your mom. Thanks for your input. A

"Dear Anne,
thank you for contacting the RLS Foundation. www.rls.org. Please contact the people listed in the clinical trials section of the web site to see about participation in research.
Please copy the Living With Restless Legs pamphlet from the web site to take with you so you can alert the airline staff what you have. Also, call your pharmacist (or your physician) to see what they would recommend you take for your airline flight. Different things help different people. On the web site is a Support Group section, and you might try calling Sheila Connolly (Massachusetts group) or Newt Hager (Oregon group) as they travel and may have some suggestions.
We hope this is helpful. lois (for)

Jamiee Redman
RLS Foundation
819 2nd St SW
Rochester MN 55902
[email protected]
www.rls.org

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Old Feb 20th, 2004, 08:55 AM
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I too suffer from RLS, which started in college when I worked as a nurses' aide and stood for most of 8 hours a day. I don't know if it had a name all those years ago. It is very sporadic, but I had it bad on last week's flight to Paris. I felt sorry for me but more so for my poor husband who had to endure my fidgiting and restlessness. At nighttime at home, I get relief by sleeping on my stomach, for some reason. If I could only lie on my belly in the aisle of the airplane....
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Old Feb 20th, 2004, 10:54 AM
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allisonm - how funny, we were also on a flight to Paris last week for Valentines Day - I was going crazy and my husband said that I never stopped fidgiting! Coming back it was not so bad. I fly again tonight and I am fully armed with all the tips I have found through searching today. I am, at the moment, drinking tonic water with Quinine and taking brewers yeast!
I will let everyone know how I got on. Even TALKING about it starts it off. Uggggghhhh!
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Old Jun 4th, 2004, 04:34 PM
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Just wondering how Aine made out with the tonic water or if anyone has found any new remedies...
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Old Jun 7th, 2004, 06:24 AM
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Allisonm: Hi. I found something that works for me. I only seem to get this RLS when flying, or sometimes as a passenger in a car or on a train and rarely when in bed, so I did not want to go on any permanent medication. There is something you can take every day but I did not want to put that into my system. However, I have noticed a HUGE difference (dont get it in bed anymore) when I started taking a multivitamin with Iron. What has worked for me like a dream is 5mg of valium when you board the plane and then I also got Ambien (a sleeping pill) from my doctor and I take that right after they serve dinner. I have flown about 5 long RT flights since I posted this and it has worked every time.

The doc wrote a prescrip for 30 of each so I will have them for ages!

Good luck. Aine
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Old Mar 6th, 2005, 03:28 AM
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Just wondering if there were any new thoughts on this topic. I am flying in a few weeks and will go see my MD before this flight for some suggestions. When we flew home from Ireland in October the RLS kicked in, on top of airsickness. What a trip! My husband is a saint.
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