What might help?

[Franklin]

I am new to this forum and I'm so tired of my legs and what it has caused me so I was hoping to get some feedback on what others have tried. I want to educate myself better because I'm tired of the doctors and their wisdom and in some cases, "Lack Of Knowledge." It seems like I have tried so much and nothing helps. I don't want to go with narcotics method but I am getting closer and closer. My situation maybe a little different because I blame some of this on statin drugs. I am taking a mult. vit. name Calm Legs and it is helping little but I'm tired of being tired. So please help me in any way you think it might help.

[ViewsAskew]

Hi Franklin,

Opioids are usually reserved for people who've tried other medications and haven't had success. So, no concerns about those at this point.

If you click on the link in my signature, you'll find a topic that is designed to help people learn more about the disease and available treatments. Much of what I will say is likely in there.

If you have joined the WED Foundation (you do not need to), there are many pamphlets and articles there, too. These are very helpful. Some can be seen by non-members; many are only for members.

First, please get both a serum ferritin and a hemoglobin test. And, do not rely on the doctor if he or she says your results are fine. Ask for the actual result/number. Then let us know what it is. These days, doctors want it to be at least 50; it should be over 100 if you are thinking of trying a dopamine agonist such as pramipexole or ropinerole.

Also, you might want to get your vitamin D checked. It's recently been linked to RLS/WED and some of us have found that having higher levels is important. Even if your levels are OK, it isn't going to hurt you to take up to 1000 mg a day (some people would say you could even take up to 5000 a day).

Make sure you are not doing anything that would make WED worse. Each of us is different, but caffeine, anti-nausea drugs, antihistamines, and other things can worse WED.

If your ferritin is OK (over 100), you are not anemic, and you've cut out alcohol and other things that might worsen it, you may decide you need medication. It used to be that doctors routinely suggested a dopamine agonist first. But, because of the involvement of iron and serum ferritin, I think it may be more wise to start with a drug such as Horizant or gabapentin.

There are also non drug methods that some people try. Some people are not ready to try these drugs. The main supplement used on this board is kratom. It's a tough decision for many of us. If you decide you want to know more, let us know and we can point you to the posts about it. Marijuana works for some, too. It's not always available to everyone.

And, it's always helpful to learn other methods for dealing with it. Warm baths/showers work for some (a few prefer cold). Compression stockings - such as what they give people in the hospital - can be very helpful for many. Some people like a heating pad on in bed. Some of us find that when we exercise and how much we exercise is important.

Welcome to the board. We're very sorry you had to find us, but do hope that being here is helpful.

[badnights]

Welcome franklin. You're in a good place to get information and talk to people who get what you're going through.

I've never heard of statins causing WED/RLS but that doesn't mean it's not happening. An interesting connection, why do you think of it? Did the WED/RLS start at the same time as you started statins?

I ditto everything views said; getting your ferritin number is critical. It may be that you can manage your symptoms simply by taking oral iron and vitamin D. Certainly worth a try, if your ferritin is anywhere below 100, although oral iron will be more effective if your ferritin is even lower (less than 50). Ferrous sulfate or ferrous fumarate are the most effective alternatives other than heme iron, and should be taken with vitamin C (required for absorption) on as empty a stomach as possible.

And I would throw some D into your daily regimen, since a lack of D has been linked to WED/RLS, and since most people in North America are deficient according to many reports, and since my GP recently told me they don't get concerned about overdose unless you're taking more than 4000 IU (and views mentions 5000).

[ViewsAskew]

since my GP recently told me they don't get concerned about overdose unless you're taking more than 4000 IU (and views mentions 5000).

According to the Vitamin D Council, you can take up to 10,000 IUs a day for awhile. If you take that much for 3 months, there is a possibility of toxicity, but it's more likely at 40,000 a day.

So, I really do not think even 10,000 for a few weeks or a month or two wouldn't be a problem.

I've taken 5,000 a day for a LONG time - at least two years.

http://www.vitamindcouncil.org/about-vi ... itamin-d/#

[Franklin]

I want to thank all for responding. I will go to our local health store today and get some vitamin D. And let you know the outcome. What I have found with RLS is how it effects the whole family. My sister, aunt, a few uncles, and my mom had it. I have had people tell me to drink pickle juice, eat a spoon full of musturd at night and all sorts of home find it yourself stuff. I am sure each of you have had the same experience. One question I do have at this time is, does anyone know what vitamin to take and what not to take that might have a contraindication of the RLS. You mentioned caffeine might worsen this. How much caffeine have others tried that does this. Does soda fall into this area also with the caffeine in it. And how about natural foods. Like eat more veggies but don't eat a certain kind. Does this make sense???? Thanks again

[ViewsAskew]

Some things are very personal - some of us do have food triggers. Many of us do not.

If you have not, go to the link in my signature and read through that. Many answers are in there. If you have more questions after that, just ask.

[badnights]

WED/RLS is for sure a family thing! at least, the so-called idiopathic form of it runs in families. Various gene linkages have been identified but I don't have a good grasp of genetics and won't even pretend I just used the right word.

I find with iron, that I notice an increase in symptoms within 2 or 3 days if I stop taking it, but with vitamin D, it takes a couple of weeks. So you may not notice a benefit until a couple of weeks or more have passed.

Caffeine - frankly, I can eat chocolate and drink tea with no apparent ill effect, but I Cannot drink coffee more than 2 or 3 days in a row, sometimes not even one day, before I feel it. It may be because the "caffeine" compounds in these substances are all slightly different, or it may be because other compounds in coffee are causing the ill effect. Other people here, though, find that chocolate affects them - so it's probably a trial and error thing for you. If you were dedicated enough, you could do a trial - stop everything, wait a month, then introduce a single substance back in.

There are as far as I know, no vitamins or minerals that will trigger WED/RLS, but there could be supplements that would trigger it in susceptible people, so just pay attention. Eat whole (unprocessed) foods as much as possible, and try to discover if you have celiac, IBS, or any inflammatory digestive problem. One of the biggest causes of secondary WED is impaired bowel function (something like 40% of celiacs and 30% of people with Crohn's - or maybe it's the other way around - have WED/RLS, compared to only 5% in the general population).

Eating more vegetables is always a good thing for people with chronic disease (as long as you're not allergic to them! eg. a lot of people are allergic to tomatoes). I have recently improved so much from a diet change that I could drop my medication over a span of 7 months to two thirds of what it was (no gluten, no dairy (I am allergic) , no simple sugars except in veggies, very little fruit and starch; no processed foods.) I seem to have plateaued, though, so I might be making more drastic changes soon.

I hope you start discovering triggers and notice an improvement simply by avoiding them. It's too bad it''s not one-size-fits-all when it comes to diet, but at least you'll get ideas from people here.