Severity of rls

[edelman2]

Can someone give me a link to the rls questionnaire mention by Rangerfan51

[Polar Bear]

If you look at JimmyLegs44 post above where he responds to Rangerfan51, he gives a link to Dr Early's webinair in July.
Is this what you refer to?
To watch this webinair it is necessary to be a member of the Foundation.

[Polar Bear]

For Information Purposes Only:

On the RLS Foundation there are brochures available to everyone on various aspects of RLS/WED.

There are also further brochures/webinairs available for which it is necessary to be a paid up member of the Foundation.
Anyone wishing to become a fully paid up member of the Foundation can do so at this link.
https://www.willis-ekbom.org/join-the-foundation

[edelman2]

Where can I find the 10 questions questionnaire with the scale of 1-4?

[edelman2]

I am talking about the 10 questions questionnaire that Rustsmith and Rangerfan51 mentioned before with a severity scale for rls. I am not
asking about the publications or webinars.

[Rustsmith]

Try this website:
http://www.medicine.ox.ac.uk/bandolier/booth/RLS/RLSratingscale.pdf

[ViewsAskew]

The person who posted that rls can go into remission by some experts have about the same odds as hitting the powerball,mega millions,cash/fantasy five,pick 4 and cash 3 numbers all in one day. Not to mention eliminating the deficit,solving world hunger,and bringing peace to the Middle East. And reversing aging.

I wonder what the odds are. It doesn't seem to happen frequently, but we've had quite a few here who have had it happen. For some, we've not seen them again. Others have shown back up at at late date with it back. It surely makes it a very strange condition, doesn't it?

[Rangerfan51]

Can everyone out there with severe rls agree that drugs and only drugs will help your legs. can I get a amen.i am a little bitter but let us face the facts. a bottle of Tylenol and meditation aint going to get it done. Can anybody out there with severe rls actually say that they can go without drugs? Didn't think so. attitude has nothing to do with it.if a so called expert would say"smile every hour of the day and your rls will go away". That"s when it will snow 3 feet deep in the middle of July in Florida.

[JimmyLegs44]

I have severe RLS, and you won't get an amen from me. Not even close. I'm sure I'm not alone. Here's why....DRUGS MADE MY RLS WORSE!!!!!!!!!! You think drugs are the answer, I think they're a HUGE part of the problem. Augmentation, withdrawal, depression, tolerance, dependence, constipation. No thanks, Jack, I'll just stick with my RLS, since it's worse now (on drugs) than it ever was before.

I've tried to be helpful to a fellow RLS sufferer and educate you a little, but it seems you are beyond help. You didn't come here to be educated, you came to complain. Life's too short. I'll leave you in the very capable hands of our esteemed moderators.

[jul2873]

I do think there are many cases of severe RLS that necessitate some kind of drug treatment. This doesn't mean that all drugs are good. There is plenty of evidence on these boards that for many people the DA's are poison. Opioids seems to help really severe cases; it's just tragic that the U.S. is so paranoid about anyone using opioids. I have, luckily, found kratom that works for me, however, and I see accounts on these boards of many people who have found some kind of drug treatment that works fairly well for them. It's just very hard to generalize about this incredibly torturous disease. Different things seem to work for different people, and I think we need to respect that.

[ViewsAskew]

jul2873, you said it very well. Rarely, to me, is anything black and white or clear cut. And with RLS, that is definitely the case!

For me, drugs used wisely and judiciously are truly a wonderful thing. I am not mad at pramipexole for the augmentation I suffered, I am mad at the neuro who told me he was educated about RLS by the Mayo Clinic and knew as much as anyone. Yet, it 2005, 7 years after the first article on augmentation was published, he'd never heard of it. I'm mad at every neuro out there today who isn't aware of augmentation and uses these drugs without care and concern of how they are used, the dosages prescribed, and so on. It's why I have stayed here for ten years - if I can help anyone through augmentation or prevent it, I'm a happy person.

In the meantime, one of the the things I tend to like about this board is how many different types of people are here and that everyone can get what they need from this board. There are some people with severe symptoms who do choose to find alternative ways to treat the disease instead of using drugs. That works for them. There are members who choose to take drugs to resolve it. That works for them. We all have different circumstances and situations, along with different views of things. Then there is how different this disease can be for people - it just isn't the same and it cannot be treated that way. I am proud to be part of something that can be called home by such a diverse group of people and that we do it, for the most part, without much rancor, arguing or fighting. I hope we keep it that way.

[figflower]

Ranger, humor me and give me some background on you, besides your RLS. Like, are you taking or ingesting : statins, beta blockers, antacids, antihistamines, anti-depressants, metformin, warfarin, melatonin, 5htp, tryptophan, diet pop, splenda, steroids? I have read at least one account of someone getting improvement in RLS symptoms by stopping one of these substances. Do you tend to eat a lot in the evening? How's your thyroid? How's your gut? How's your blood sugar level? How's your kidney function? How's your back? How's your testosterone level? Read an article that stated that RLS frequently occurs in conjunction with ED. Maybe testosterone has some type of protective affect on those of us that are pre-disposed to RLS? Don't know but something to think about since RLS is much more common among women.

I and many others believe that there is a "ground zero" to RLS. Ground Zero being a genetic tendency toward low levels of brain iron and a subsequent malfunctioning dopaminergic system (aka lousy dopamine receptors). Lousy dopamine receptors means less of the neurotransmitter commonly called dopamine traveling down our spines to our legs and arms where it quiets them. Anyways, we leave the womb with these lousy receptors and then we dance our way down different paths. For many of us those lousy receptors may provide just enough dopamine such that we are rarely bothered by the symptoms of RLS...for decades!!!. Then there are others like me that had mild and intermittent RLS since the age of 12. But then one day something happens. We may never know what that something is or not make the connection or maybe it's just the aging process. But an awful lot of people develop symptoms of RLS for the first time after they injure their back. Or their RLS gets WORSE from the injury or the subsequent surgery. Same thing happens to people who develop thyroid disease or kidney disease or pregnancy or menopause or cancer. Everyone's dopamine receptors get worse with age, but it's really only us - that began life with lousy ones - that seem to feel that age related decline in the receptors. So yes, it does not surprise me one bit that your RLS has worsened in the last 8 years. Mine has too - in the last two years however.

But about 7 years ago I had the worst RLS a person can possibly imagine. Or at least that I could imagine. It was in my legs, my arms, the back of my neck and forehead. I would writhe in bed and throw my head back and contort my body to such an extent my husband thought he was married to the girl in the movie The Exorcist. I felt like it was the devil incarnate. After three nights of dancing with the devil and zero sleep and a 10 year old and a full time job I decided it was time to do some research into this "thing" that I basically had my whole life but not to this extent. Someone on some website said "just take some iron at night, even if you're not anemic, there's just something about that free-floating iron." Next day I bought "Gentle Iron" because I have IBS and didn't want to aggravate that on top of the RLS. It worked that first night. Then the RLS returned and I would take the iron again the next night. Took about an hour to kick in but then lasted whole night. Then the devil returned and I upped it to two iron tablets. Then one night I ran out of my iron and the health food store was closed so I went to Walgreens and bought regular ferrous sulfate. Took one tablet and......NOTHING. Took a second tablet and eventually fell asleep. Tried it one or two more times but it never worked as well as the Gentle Iron. Anyways, I got tired of taking iron and decided to once again do research. That's when I found out that the 3mg of melatonin I was taking (and sometimes benedryl and Tagamet) might be what was making my mild RLS so bad. I also realized that I need to up the iron when I went from 1mg of melatonin to 3mg. Well you know the ending of this tale. I stopped all of these things and the RLS went quiet. Fast forward a few years and more and more substances trigger my RLS including a big meal in the evening or a can of diet coke.

You do what you gotta do. But you do it with the understanding that the DAs and opiates might be making your lousy receptors even more lousy and that it might become a vicious cycle. So yes, you hold that powerful medicine in your hand before you take it and you thank the forces that be as well as the Amazonian rainforest (where many drugs have come from) for providing these substances and then you make a promise to the medicine gods that you will learn about this affliction and maybe, just maybe, like me you will find a bottle of something somewhere that will help you as well. All medicine is sacred, from morphine to iron to melatonin. By the way, when I take the iron "bis-glycinate" (generic name) I have to take it on an empty stomach, by itself, with water, at night or during an attack. If I take it in the morning it will do nothing for my nighttime attack. If I take it with milk or magnesium or calcium it will do nothing for me. One last thing, I read on an addiction website that a good way to up-regulate your shriveled dopamine receptors is to consistently under-eat or do intermittent fasting. Fasting for a man I believe is 600 or 700 calories a day. Under-eating is less than 1200. If you do try the iron or the fasting at home, make sure your doc says it's ok...ok?

[JimmyLegs44]

I am proud to be part of something that can be called home by such a diverse group of people and that we do it, for the most part, without much rancor, arguing or fighting. I hope we keep it that way.

Amen! (sorry, couldn't resist)