What do you think CAUSED yoiur RLS?

[Lianasmom]

Hi, I'm new here and just wanted to add my 2 cents. My RLS is hereditary as my mother and brother suffer from it, but I don't think it affects them as badly. I was in my early 30's when I really started noticing how badly I was affected. My doctor originally diagnosed sciatica but I've since done my own research and can't relate to the symptoms of sciatica, but rather RLS. During my pregnancy I thought I'd go nuts with all the RLS in my legs, but noticed when I'd sleep in the guest room (from keeping my poor husband awake) which has a firmer bed, the RLS didn't bother me so much. Over the years I've learned what helps, including sleeping temporarily on my stomach; however, I can't stay on my stomach long or I'll wake up with severe back pain, but sometimes just to get relief in my legs, I'll lie on my stomach. I've even tied things around my legs just to put pressure on them. Hopping around also helps which is very funny when I'm hopping on one leg at 1:00 a.m. Leg cramp medicine seems to help also as does a heating pad.

[Walking After Midnight]

Just found out the other day, my sister was over...she's 52 (and I'm sure she loves me for broadcasting that around the world) that she too has what sounds to me like RLS. But it's never been diagnosed or treated. I was telling her about mine and she lit up..."I Think I Have That!"

Something "causes" RLS?

[ViewsAskew]

If you do some more digging, you might find more people, too. I think Becat found 13 or 18 or some such at a large family gathering early this year or last year.

Cause? Well, to me, this is sort of a mis-titled thread. For primary RLS, nothing really 'made' it happen - we were just predisposed. For secondary, I guess you could say that they primary condition 'caused' it, although that isn't completely accurate. Seems to me that people with RLS have it because of a couple of things:

1. They are born with it. It starts sometimes before the age of 45. This is primary RLS that appears to be hereditary. It runs in families. The cause? Probably lack of iron absoption in the substantia nigra part of the brain.

2. They just seem to have it. No one in the family does, but they do. This is considered ideopathic - and primary. I suspect that they will find that the cause is similar or the same to the first example, but maybe not.

3. They have another disease, surgery, accident or condition that kicks off the RLS. Pregnancy is an example, as is a spinal cord injury or surgery. For those that do not also have primary RLS, this condition creates a situation in the body that allows for RLS to happen and is called secondary RLS. Getting the underlying condition under control often allays the RLS.

Just my thoughts.

[SJ]

My husband was in a car accident on his way to work. A drunk teenager fell asleep at the wheel. When he returned to work I could not sleep. I went to see a therapist. He insisted I needed anti-depressants. I had a terrible reaction to the anti-depressants.( Acne and OCD.) Obviously I stopped taking them. But they changed my brain chemistry “I believe” because now I have RLS. I have had it for 10 years now. I’ve been on meds for RLS ever since. However, I have found there are thing you can do that are natural, do no harm to you body, which really help. My goal is to get off my meds and so far I’ve managed to decrease them. This is a step in the right direction. My grand-mother always said” There is a drop of poison in every pill ” I’m living proof of that. SJ

[nephriticus]

Thought I'd pop in after a long hiatus. Hi Becat, Views, Ruby and others.

In my last post in late May I reported that I had been symptom free for about six months after having divorced myself from my daily 2-3 glasses of el cheapo red wine.

My initial RLS symptoms had started suddenly and it coincided with a change of red wine brands. I returned to the original brand with no relief of symptoms. I quit the wine altogether for about four weeks with no effect. Months later, I quit the wine again and the RLS symptoms gradually disappeared after about five weeks of abstinence. I can only guess that it took some time to 'clean out' my system, so to speak. Months following total abstinence, I had a glass of red wine with a meal and the
RLS symptoms returned again that night. I tried another glass the following evening and again had RLS symptoms. Except for the two-night test case, I have avoided red wine for nearly a year and have been symptom free for that interval.

It is incorrect to claim that I am completely symptom free. I occasionally have some strange leg sensations that hint at becoming sleep-robbing RLS. But, after a few twinges I go right to sleep. The twinges seem to be incited by consuming chocolate or sugar in the eveing. I do not believe that I am completely rid of RLS but rather am in a temporary remission. But I am certain that there is, for me, a correlation between red wine and RLS symptoms.

I wish the rest of you could find as simple a fix.

[becat]

Neph? It's really you! I miss the stuffings out of you.
I'm so glad to see your name, even happier to see that the RLS is still at bay.
I hope all is well with your lovely wife and kiddo.......Hugs to all of you.
Carving anything wonderful lately?
We will certainly miss you this year at the National Meeting.
Look everyone it's Neph! He didn't forget us.
Hugs and more hugs to you, our west coast friend.

[Tired Limey]

I first noticed this uncontrollable need to move my arms and legs as a child about 12 years old. Long journeys, cinema or just watching TV at home. None of my family suffer so where it came from beats me. I found smoking relieved symptoms and as a child regularly smoked out of my bedroom window in order to get a bit of sleep. Pleased to say I gave up smoking years ago but the rebound effect on my RLS easily outweighed all other withdrawal symptoms.

For years I thought I was the sole sufferer, a belief reinforced as a teenager by the dismissive manner in which Doctors reacted to the description of my symptoms. I remember leaving the surgery feeling quite disgruntled at their patronising tone and ability to make me think I had completely wasted their time.

I have experimented myself to try determine what factors have any affect but to no avail. I excluded caffeine completely after midday and still do. I experimented with variations on diet altering carbohydrate (simple and complex) protein and fat and varied the times at which I consumed them. Made absolutely no difference.

The only things I take now are nicotine gum which has quite a relaxing stimulus on my arm and leg muscles and codeine phosphate which is prescribed for arthritic pain. The codeine was a revelation. I still remember the first time I took it and the palpable relief it offered. I had a full nights sleep for the first time in years. I don’t like taking drugs “Off Label” like this but it really helps. I am going to see my doctor soon. Unlike the aforementioned dismissive ones, she is very helpful and I am very keen to try some of the drugs mentioned here.

Where RLS comes from I don’t know but I know where I’d like to send it!

[Penguinrocks]

I applaud that last statement for sure Tired!!!!

I just hope you know that no matter what the "naysayers" do, on this web site, no one thinks anyone else is outta their minds!!!

You know, until the comercial came out, I was making this WHOLE thing up! Now? I SAY HA in their faces!

Not really, but I'd really LOVE to sometimes!

Good luck
Penguin

[Guest]

For me it looks like that alcohol and cigarettes brought me RLS. tried a lot of thing, but at the moment il stay with an european product witch lets me sleep well.

best regards,

hanspeter

i use http://www.rjr.at/shoprjr/product_info. ... anguage=en just if anyopne is interested.

[vi0613]

I, too, think I developed it after pregnancy. I had 3 C sections, but didn't have it until after 2nd. birth. Right when they pressed on my stomach to release "afterbirth"., my legs started twitching, and I remember crying and telling my husband I couldn't lay still. It was a horrible feeling., and have had it ever since. Mirapex helps me., as long as I remember to take it. Sometimes, I forget. I did my own research, and diagnosed myself, then saw a neurologist. He only has 4 other patients with it. I am so glad I discovered this website.

[Turtle]

Is anyone else affected by decongestants and caffeine? My RLS is always activated by these two things.

[SJ]

Chemicals in my system caused my RLS. I had a very mild case until anti-depressants were prescribed to me. Now I’m on Requip and Valium. Work well but it make me very tired then I started to improve my nutritional needs.
Good nutrition is not something you can get at a grocery store these days. Process foods, white flour and fruit and vegetable grown in chemical laden fields all bring poison to our bodies. Meat anyone? What if you are having a problem with the anti-biotic and hormones used to product it faster and cheaper. There are homeopaths that will lead you to herbs to help clean out your body. I’ve lived on a hobby farm for 30 years. Here my husband grows many of or foods organically including our beef and pork. I still have RLS. Obviously I still eat too many processed and chemically laden foods. So I tried nutritional supplements. I also firmly believe in enzymes. How can we digest the nutritional supplement if we do not have the enzymes to do so. Older people don’t digest well.

Ever hear of mercury poisoning. This metal builds up in your system over time and all your hair falls out. It is difficult to get this out of your system but it is possible. Everyone should educate himself or herself on how best to meet their nutritional needs. With any luck you will have the good results I am having. Of course I am still working on it. I don’t have all my answers but I am have encouraging results. SJ

[livesfortheOne]

Both of my parents and my sister have RLS. My sister and I have both always sat on our feet a lot. It helps to not sit on our feet, but I think that is something that increases the affect of a genetic condition. The thing that helps me most is to get adequate sleep.

My Dad is in his 80's and his RLS is bad enough that he takes medication for RLS. The only Dr. I've really discussed RLS with said the best is to avoid meds as long as your RLS is manageable as the side affects can be worse than the RLS.

As for heritage....my dad is 100% German.

As for pop....I had a co-worker when I was first aware of RLS who said cutting out caffeine helped hers.

Low blood pressure? Mine tends to be on the high side.

Low hemoglobin? Mine is always outstanding. I do take a B vitamin with iron.

[livesfortheOne]

I'm new to discussing RLS with folks who have it (other than my sister). What's PLMD?

[Penguinrocks]

Periodic Limb Movement Disorder