What do you think CAUSED yoiur RLS?

[BobbyD]

While shoveling I experienced a sharp pain in my back. That night, and for years since, I have had RLS. It was caused by a spinal cord injury and symptoms are worsened by physical activity involving the back.

[squirmy]

I have asked myself this question also, what causes or triggers RLS. For me, I had it in my feet occasionally for many years, it would keep me up, but I didn't think much of it. I had two epidurals for c-sections about 20 years ago. My mom has RLS in her feet and I had an Uncle who tried sleeping standing in a corner, because going to bed, caused heeby-jeebies, he called it, (he died several years ago, never knowing the cause or even the name RLS). But mine became a real problem when I was having some female problems at age 40, with excessive bleeding for over 90 days. I was very anemic and having some thyroid problems with high b.p. I also was diagnosed with Lupus at around this time. So I think it might be genetic, but was triggered by some other problems. Anyway, I had a simple operation for the female trouble, and now everything is improving. I take medication for the RLS. Without the RLS medicine, (I've tried going off the meds), it still comes back full force, even though the other problems are better.

[Kris]

I am positive that mine is from my dad, but mine changed and turned into a monster after I spent about 8 months in a rocker boot. I've got severe tarsal tunnel syndrome with a lot of nerve damage in my left ankle and foot. I think they feed each other.

[Adrienne]

I guess we all complained enough that we finally have a name for this aggrevating "syndrom". I have tried massage, chiroprators, acupuncture, iron, tea, stretching before bed, advil, nyquil.... but nothing seems to work for very long. I am pretty sure I have primary RLS, thanks to Mom. My uncle and cousin have RLS also. The difference for them is that when in bed they shake, they know their body/mind is about to fall asleep and then they sleep. I on the otherhand, try to fall asleep and my body shakes to wake me up. Sleep deprivation is no fun. Sometimes there are weeks when I sleep OK and then like this week, no sleep. I have put off taking medication for years, was on neurontin sp? for a little while (2 mos.) it seemed to work?, but I was hoping for a non chemical solution. I am at my witts end, and am dissapointed to hear that some people have found medication to be like any other suggestion, a short lived solution. Is there anyone that knows what part of the brain is associated with RLS? (dopamine?) and is there any surefire answer/medication to keep the symptoms at bay or dare I say get rid of them???? Sleepy in NO

[ViewsAskew]

Adrienne, people who have really good experiences with drugs often don't come here. They don't need to! Those that hang around are more likely than not to have ongoing problems. Of course there are some of use that made friends here and just stay because we like each other . The long and short of it is that many, many people have successful experiences with drugs. Even though I've been through some bad times with the drugs, the good times outweigh the bad.

RLS occurs because of problems in the substantia nigra part of the brain related to the inability to uptake iron. The prevents cells from working well and as a consequence they can't get enough dopamine.

Go to this link to read the article explaining this in more detail - it was in Nightwalkers in 2003: http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549. WHile you are there, read any of those other links that might interest you.

Go to this link to find out how to work through getting treatment and making decisions that are right for you: http://www.restlesslegs.org/phpBB2/viewtopic.php?t=994

Hope some of this helps.

Ann

[IanFraughton]

Since my mother says she doesn't have RLS then it must be my father, who I never met.lol Had it since birth so it had to be genetic, but it doesn't surprise me that stress and injury can bring it on as the central nervous system runs right through your body so anything that affects the body will affect the CNS too. Who ever thought of sticking needles in people spines should of had one done, probably wouldn't of recommended it after he tried it.lol Although I understand childbirth can horribly painfull I'm sure woman would choose a lifetime of childbirth to a lifetime of RLS. But since I'm not a woman, don't quote me on it.

Sara made a good point about you being born with your body and not realizing your sick because thats the way you are and take it for granted. I had agonizing leg pains so bad everynight as a kid I didn't want to be a kid, so I dreamed of being grown up so I wouldn't have to have growing pains. But of course eventually I just learned to live with it, to the point that I was so sick from depression and sleep loss if I didn't find help soon I would of done something stupid. I don't rember having "crawling legs" as a kid but after finally sitting down and trying to remember my childhood I realized I was clinically depressed almost all my life and certainly sleep deprived but I thought that was just the way I was. Luckily I saw a tv program that did a special on RLS and finally knew thats what I had but my depression kept me from going to the docs because I was afraid he'd agree with me. Like everyone else I was hoping there was some simple but overlooked problem that could be quick fixed and I could finally have a "normal" life. I've noticed others put words like "rest", "sleep", "life", etc in quotes too, as they have different meanings to us than those "normal" people we come into contact everyday. Hopefully there is a day we can all drop our quotes and live life "peacefully".

I have come to accept the fact that I will have to live with RLS for the rest of my life and that it will only get worse, but I take comfort in the fact that I have good family, a woman who love me and honest people who call me friend and will grab the oars when I'm too tired to row.

[J]

I found out that my RLS came from carrying my children in the womb. Their head seemed to lie directly on my siatica nerve on my right side. About 4 yrs later after having 5 kids I developed nerve damage to my siatica which is where the RLS (mine anyway) came from. My chiropractor just pushes the nerve back where it should go (because it protrudes and become irritated) and that controls my RLS as long as I go to him evry couple of weeks. When I lift heavy objects it causes the siatica nerve to swell and get pushed out of place as well. I laugh and tell my kids they were a *pain in the butt* but its really not funny! The crawling vibrating sensation is horrid!

[aknewlin]

I'm 38 now and have had RLS as long as I can remember. I never knew it had a name. I just called it "Jerky Legs" because that's what I would have to do to relieve the symptoms...jerk my legs! I finally heard a name for it about 1 year ago and I knew exactly what it was. It was great to finally have a name for it!

My mother has it, and my brother has it. It just comes on when it feels like it, I can have it for days in a row and then it just goes away. It definately comes on in the late afternoon to evening, and medications (Premesyn PMS, Benedryl, cold meds) definately bring it on.

I did find a natural way to find relief : Calcium! I drink a powder calcium (mixed with water) and it goes right to work in about 20 minutes. It works on leg cramps, too.

[Kezia]

I've been reading everyone's posts about where they think their RLS originated. It's very interesting to see all of the possible causes. What relates to me the most is the discussion about anxiety and stress.

Neither of my parents, nor my sister have RLS so I've ruled out inheritance. I can remember having RLS occasionally when I was younger (in my 20's). But over the past few years it's become consistently worse.

For about four years now, I've been taking numerous medications for schizoaffective disorder, including anti-psychotics, anti-depressants, thyroid meds, narcolepsy meds and a handful of other meds to counter-effect the side effects of everything I take. I think there is a link between the meds and the RLS worsening, I just can't figure out which medication is the primary cause.

Has anyone else experienced RLS after taking psychopharmaceuticals? which ones?

[ViewsAskew]

Hey Kezia,

Absolutely people mention that they RLS was triggered by drugs; anti-depressants and anti-psychotics top the list. Here is a thread that has some great links in it. You'll find many of these talk about drugs, but especially the algorithm and the So Cal Support group. You can find those links from topics 94 and 549.

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=1068

Lunesta is new, but at least a couple of people have posted that it makes their RLS worse. Ambien seems safe for most people, though, and is in the same or a similar class. Anti-ds are almost all a problem although everyone is different. Bupronion is the only one that most people can take (though not all).

Happy reading. If you do your research, you should be able to make this much, much better. But, as many of us here have experienced, don't just take your doctor's word for it. Listen, yes, but follow blindly, no. They just don't know as much. They tend to see things in more black and white terms and if there is one disorder that is not black and white, it is this one! There is no one best treatment - so much depends on your physiology, what triggered the RLS, etc. By getting as educated as you can, you can better evaluate the treatment the doc wants you to follow.

Ann

[pcanfiel]

I believe mine is genetic. What's worse is I have a 10 year old that has it too. We both describe it as the urge to want to stretch your legs constantly. Does anyone have suggestions on how to talk to your doctor about this disorder. My doctor is moving out of my insurance network so I will have to pick a new primary doc. I would love some advise. I am so glad to find out I am not alone in this.

[alisha0103]

My dad. He suffered with RLS since he was a child...although there wasn't a name or treatment for it to his knowledge. I think my RLS started when I was around 10. I asked my step-mother the other day if my dad still has RLS. I had to tell her what he use to do in his sleep. She said he doesn't have RLS. I asked my dad what he did to make RLS go away and he said when he was thrown from our horse ("Glory") about 15 years ago and he hurt his back pretty badly, when his back healed, his RLS never re-surfaced. Well, that horse is the reason why I won't come near a horse today...I'm definately not going to go get bucked to see if it works!

[Lannie]

What a lot of interesting posts. I had no idea how many people have this. I've never heard of "primary" or "secondary" before. I haven't really heard a whole lot about it at all, for that matter. I just found this forum today.

I did notice that a lot of people blame genetics, and it must be inherited. Is that considered "primary"? If so, then that's what I had. My mother called it "itsies" and she's the one who told me to get up and walk when it was bad and I couldn't sleep. It started about the time I was 5 years old. Over the years it just got worse and worse. I had it every single day, and nothing I tried would make it go away. I had the jerky-leg kind, not the creepy-crawley kind. I had it in my arms too, some nights. The time that it hit me would get earlier and ealier, as well. It was hitting me every evening about 6:00pm and I was going absolutely crazy with it. I couldn't even sit and watch TV with my husband after dinner. I was constantly kicking or doing leg-lifts on the couch to stop the jerking, but as soon as I stopped, the jerking came right back. We were both miserable.

Then I changed my diet and started taking some natural anti-fungal herbs and probiotics (see my post "What helped me") and all my RLS symptoms were gone in a month. I haven't had an episode for 5 months now, and I can tell you, it's a blessed relief!

So in answer to the question, I think antibiotics caused my RLS, not my mother. She might have gotten it from antibiotics, too. How many people have NOT had antibiotics in their life? The antibiotics kill off bacteria, yes, but they also kill the good intestinal bacteria that defends your system against invading microbes. What antibiotics don't kill is yeast or fungus. So after a round of antibiotics, all the bacteria is wiped out, leaving the field open for the natural yeasts in your body to multiply out of control. This can cause a whole host of other symptoms, such as psoriasis, toenail fungus, dandruff and acid reflux, to name a few common ones. I don't know what the actual mechanism is between a yeast overgrowth and RLS, but when I started my anti-fungal regime to see if I could get rid of my tendinitis, my RLS vanished with it. So...

I'm not saying that ALL RLS symptoms are caused by yeast overgrowth, but in my case, they were. I was a child of the 50's and I had more than my share of the new "miracle drug" every time I had a sniffle. 6 months ago, you would have said I was an incurable "primary" case that had inherited it from a parent, and I would have agreed with you. But today I'm here to say "it ain't so!"

For whatever it's worth... take what works and blow the rest away...

~Lannie

[Nan]

This is an interesting discussion!

I think that my RLS/PLMS is

1) a combination of genes ( I am pretty sure my father had it, just not diagnosed....he "twitched" a lot and my parents had to separate their beds) and

2)trauma from Open Heart Surgery to replace my aortic valve

3)complicated by taking Benadryl at that time to help me sleep!

I also have an old lower back injury from falling off a horse and being dragged.

But I remember as a teenager having to "move" my legs when sitting in a movie theater etc. But not on-going and consistent like it is now.! And resisistant to treatment.

And to make sleep even more difficult, I also have obstructive sleep apnea!

It helps to know that there are other folks who understand what one is going through!

Here's hoping that each and every one of you find the best possible solution for your health and sleep.

[phatbuddha]

Wow! i never knew this was a "medical condition" i just saw a commercial for something talking bout RLS. and had to check a website.

i thought "i was the only one" lol. but i remember having this condition when i was a kid. the irratable legs. im in my early 30's now, and its gotten progressively worse. caffeine and a stressful job dont seem to be a good mix for me. but its nice to know i have a place to get some tips. thanks!