Does this ever get any better? - A post from a newbie.

[estelle]

After 2 years of going running numerous times in the middle of the night, and complaining that I cannot sit still in a car (or a bus) for more than 1 hour, and walking miles every day just so my legs can calm the hell down, I never knew about RLS until 2 days ago. My mother phoned me to check out the site after randomly stumbling across a TV commercial about RLS. She (like others) always blamed my insomnia and waves of energy on stress, and everytime I would say, "no it's NOT stress, it's physical! I just need to move!".

I always thought it was because I was in shape (HA HA!... though I am very active). I use to run every now and then and be active in sports, and now I cannot go through 1 day without running for 30-60 minutes or walking for at least 4 hours (even then, RLS comes back at night). I just recently thought of considering a doctor's appointment just to see if all this was normal... but all this time I thought it was just a phase. 2 days ago, I was both shocked and relieved to see that this was a syndrome.

I'm 22 years old, and I have had RLS for about 2 years. I have a lot to catch up on. I have been reading so many sites for information in the last 48 hours! I read about iron defiency, but I doubt that is the cause in my situation. I eat x-tra healthy and have been for 3 years (fish, lots of fruits and vegetable, chicken, red meat once in a while, no fastfood, etc.), making sure I have all the vitamins, minerals, and protein I need. I have never taken any medication, as I have never seen a doctor about this. I'm just trying to figure out what to do besides exercising. I'm a full-time student, and right now I'm working full-time in front of a computer for the summer--> It's driving me CRAZY!

For anyone who reads this, thank you for listening. For the very first time, I feel like I am not alone in this situation.

Not everyone has the time to go walking for hours on end (or running) every day. I'm just trying to figure out how people deal with this. I've only had it for 2 years (and it has only been getting worst! I've started to get it in my arms also sometimes) and I cannot imagine myself living with this for another 20 years. That is just insane...

I hope I find answers and solutions. In fact, I hope everyone who suffers from this finds solutions. I don't wish this upon anyone.

[ViewsAskew]

Welcome, Estelle. I hope you find what you need.

QUick note - the iron thing? It's not related to how healthy we are. It's actually thought to be a problem in our brains - the cells just don't work quite right. They can't uptake iron like they should. Also, many of us are just abnormally low in ferritin - not the same thing they measure for anemia. In studies, when they give IV infusions, people with RLS "lose" all this iron in just a few months. It's like out bodies deliberately get rid of our iron stores.

Long story short...get your ferritin tested. That could be a total solution. Iron helps about 60% of those who take it. For about 20%, it completely relieves all symptoms. So, it's worth getting tested. Oh, and don't take it without a test. Not all of us are low (but many are). If you are not low and you take iron, you could poison yourself in a manner of speaking.

Happy reading. A great place to start here is to read the 'sticky' posts in each section. These have such great links that can help you. . .and your doc.

[SquirmingSusan]

Hi Estelle, and welcome to the forum. No, you are definitely not alone in having this thing called RLS.

If I were you, I wouldn't write off low iron stores as a cause of the RLS just yet. Excessive exercise brings iron levels down, so if you're not taking iron supplements, you could very well be low in iron.

Have you looked at the Mayo Clinic Algorithm? There's a link in this part of the forum, in one of the sticky posts at the top. It outlines possible causes of secondary RLS, like low iron and various medications, as well as treatment options. Doctors usually don't know much about RLS, and it helps to be armed with information if you go to see one.

[estelle]

Viewaskew: thank you for that bit of information.. I do plan on seeing a doctor as soon as I get back into my home province. I am tired of working myself to death at night just to pass out in bed without being so jumpy..

squirmingSusan: I just noted that site down, thank you! ... I have more discoveries and research to do.

Cheers- =)

[Hos]

Welcome estelle. In most people, RLS does not go away but the good news is that it is treatable! You just may have to find the right doctor, neurologist, or sleep specialist that understands RLS (and can rule out other possibilities) and get you treated.

Enjoy the research and you are far from being alone even though it may seem like that sometimes. You might talk to your family about it. I just found out recently that my brother has minor RLS. It's just not something that people feel comfortable to talk about if they are not asked sometimes.

By the way, my signature below has the RLS algorithm for meds
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[ctravel12]

Hi Estelle and welcome to the group. You got some great advise from the members that posted to you. All that I can say is sorry that you have it, but glad that you found us. We will be here for you at anytime. It is a wonderful support group.

It is good to read alot of the old and new posts as there is fountain of knowledge out there.

Please keep us posted on how you are doing. We really do care.

[KBear]

Estelle, in answer to your question, yes it can get better. The trick is finding what works for you.

The first step is to check your diet and any medications you are taking for "culprits". There are many things that can make RLS worse. My symptoms greatly improved when I eliminated sugar, artifical sweetners, and caffiene from my diet especially before bedtime. I also started eating mostly whole foods- fruits, veggies, whole grains, etc.

It may be trial and error regarding meds but relief is out there. Frequently one med will work for a while then stop working for you, that's when you go to plan B. The Mayo Clinic Algorithm will help with developing a plan. I also have it as link in my signature line.

[estelle]

Thank you so much for the encouraging words everyone! I must admit I have had a difficult time this past week to actually accept the fact that this is chronic.. but I am determined to find some kind of solution to reduce it..

thank you also for the links to the algorithm =)

..

one day at a time!

..

I haven't had coffee in quite a while. I do miss the taste though but I've learned my lesson in the past year.. 1 coffee and I'm screwed for the next few days.

Cheers everyone.

[ctravel12]

Estelle, in answer to your question, yes it can get better. The trick is finding what works for you. .

Hi Estelle No truer words spoken than what Kathy just said.

I hope that you do find the relief for your rls and please keep us posted on how you are doing.

[ViewsAskew]

I haven't had coffee in quite a while. I do miss the taste though but I've learned my lesson in the past year.. 1 coffee and I'm screwed for the next few days.

Cheers everyone.

Boy, that sure applies to me for a few things. I had to learn those things or I was toast. Alcohol at night. . .uh-un. Terrible. Too much exercise in a day? Terrible for a couple of days.

It can take a LOT of time and trial to find those triggers that worsen. But, at least it helps a bit when those are gone. Food diet is key to many, too. It doesn't affect me one whit - wish it did. I've been sugar-free, gluten-free, corn-free, no caffeine, for awhile I only ate lean chicken or fish and a few fresh veggies with a little olive oil (elimination diet). That was actually one of the worse times in my life for PLMD. Oh well. You just keep on plugging. I guess.

[estelle]

ctravel: I'll be sticking around here for a bit Thanks!!


viewaskew: That's interesting.. especially for the alcohol because I just read about that a few days ago and I've realized how it increases my RLS so so much!! I got a bunch of flashbacks of me drinking wine with my neighbors at night in the past few months and I was literally bursting and would end up walking for a few hours before going to bed.
It's funny too because I have had insomnia because of this for abotu 2 years, and when I had it really bad, I use to drink a few shots of amaretto just so I could get knocked out in 20-30 minutes to get some sleep.. but the next morning it would be back.

--

Speaking of exercise perhaps someone can answer this:
because of my RLS, I exercise like mad, from about 4 in the afternoon to 11 at night I usually run for 1 hour, walk for about 3 hours, and go biking sometimes too. Does too much exercise worsen RLS?

My other question was: it seems to me I get RLS in phases.. I'll have it really bad for 1 month every single day, and then sometimes it stops for about 1 week.. sometimes 2 IF I'm lucky, then it comes back.

[KBear]

Some people find that they need to find the proper balance of exercise, too much or too little can make the RLS flair.

I have started tracking my RLS "phases" you might find this helpful too. I think mine coincide with my monthly cycle but I haven't confirmed that theory yet. I have an Ambien prescription that I only use as needed when I get RLS symptoms. It seems like I have 1 week per month where I need to take an Ambien almost every night then it gets better again.

You would not be the first person to use alcohol to treat their RLS. There is a joke in my family that if drinking makes your RLS flair up then you aren't drinking enough. I do not recommend using alcohol to treat RLS.

[ViewsAskew]

RLS is cyclical for some people - and even inthose with it every day, it has days where it's worse. Since women get it more, since women get it in pregnancy, it's been hypothesized that it's related to specific hormones. But, no one knows if that's true - just that it's worse sometimes and not as bad at others, unrelated to exercise, food, alcohol, medications, etc.

As Kathy mentioned many of us find there is a "sweet spot" regarding exercise. Too much? Worse. Not enough? Worse. A study came out this year that showed RLSers who participated in DAILY exercise (maybe 30-60 minutes) had reduced RLS than controls who did no activity.

[estelle]

KBear: hehe yeah, most people would think that alcohol just wears you out and puts you straight to sleep.

Good idea about tracking down RLS phases. I should start doing that also...

Viewsaskew: thanks for the info!

[mackjergens]

Do be careful trying to use alcohol to sleep!! I tried that ONCE and had to TRY to walk around due to increased RLS at the same time being so tipsy I could barely stand. That is One night I will not forget and it was the last night I had alcohol. That night and the night I took Tylenol PM, OH that was a horrid night too, next morning that bottle of Tylenol PM was flushed!!!

As I said in a post earlier, for me its much better to just get up and keep busy in the middle of the night. If my med does not work some nights. Most every night I can manage my rls with either hydrocodone or Ultram. But If I do too much walking and being on my feet during the day, some nights even those do not help! So those nights I just keep busy, so I dont stress while having the rls attack!