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[dwbessire]

I have recently reconnected with a dear lady friend that I grew up with. We both turn 70 this year. I discovered she has suffered from RLS for the last 30 years or so. I am just learning about RLS and hope to become much more familiar with her specific symptoms and the things she has tried as well as continuing to read all the posts and participate in this forum. I have already learned a great deal in my first session here and have downloaded plenty of material to read and study.

I am hoping to be able to offer some help to my dear friend...she suffers a great deal from this syndrome. She has used Mirapex effectively but her insurance will no longer pay for it and it is expensive. She uses Requip as well but it does not seem to be nearly as effective.

I am very curious about such things as a minor iron deficiency she has, the possibility of a Vitamin D2 deficiency, the effects of caffeine and other possible deficiencies that might contribute to her discomfort.

Her doctor does not seem to be as sensitive to her suffering as I would hope. Perhaps she should see an RLS Specialist. Typically, her problems are worst at night so I fear some sleep deprivation which probably adds to the problem.

I intend to pour through all of the various threads in this forum and read as much as I can but will appreciate any suggestions, advice, possible things to try for relief.

I am mostly dismayed over the fact that Mirapex is very effective for her and is prescribed by her doctor but neither medicare or supplemental insurance seems willing to pay for it anymore after having done so for many years.

I have already developed great sympathy and compassion for everyone whom I have read about in this forum...Everyone seems to share the same hope...a cure will be discovered and made available!

Any help will be greatly appreciated....and I appreciate being allowed to participate.

DWBessire

[badnights]

DWBessire, having a friend like you might make a world of difference in her life. The lack of understanding and empathy is sometimes the very worst part of it.

[Polar Bear]

How fortunate your friend is to have your support, she is a lucky lady..

You mention your friend's iron deficiency and it might be a good idea if she got her ferritin iron levels checked. They should be at a minimum of 50 and preferably much higher. GPs are inclined to think that around 20 is ok, but not in the case of an wed/rls sufferer.

Good luck as you work your way through all the information. Perhaps the Mayo Clinic Algorithm would be a helpful aid in discussion of treatment with her GP. The link is in my signature.

[dwbessire]

I really appreciate the prompt and helpful replies. I have downloaded and printed the Mayo clinic algorithm plus the RLS Medical Bulletin and will spend considerable time reading and dissecting the contents.

The suggestion about testing her ferritin level is an excellent one and a good place to start. She was rejected recently as a blood donor because her iron level was a bit low....that makes me think that beefing up the ferritin level may be very helpful....

It is hard for me to imagine any good friend or spouse who would not be supportive of a person suffering such agony....but I appreciate the comments and intend to be as supportive as I can.

Thanks, again......dwbessire

[Polar Bear]

Just a wee note..... the ferritin iron level is not checked as a matter of course in blood tests, it has to be specifically requested.

[ViewsAskew]

Also to add - people with anemia are likely to get secondary RLS. But, if she already has primary RLS it would just make it worse. The anemia is what we call "blood iron" the iron in your blood. Ferritin is the stores of iron. Many RLSers have excellent blood iron, but low ferritin. Having both low would be a double whammy.

[dwbessire]

Thanks for the very, very helpful information about ferritin....! She is now equipped with a better understanding of what to ask the doctor to order in her next blood test.

Her present GP and consulting doctor is an Internist but I am not sure he is up on all the latest information about RLS. Should I encourage her to see her friend's neurologist who apparently does deal with RLS patients?

I am also concerned about possible drug interactions since she takes an anti-depressant, Prozac, occasionally. I have read about possible interactions between that and RLS meds like neurontin which she says is not very effective for her.

She sometimes has to take ativan to sleep at all....

I am interested in finding out all I can about every aspect of RLS....After all these years, she was surprised to find that the problem is really in her brain rather than her legs!

Thanks, again, to those who have commented. It is appreciated!

dwbessire

[sleepdancer]

I agree that your friend is blessed to have reconnected with you. Do be patient with her. If she is chronically sleep deprived she may be so physically, mentally, and emotionally depleted that it's hard to find the energy to pursue even those things that could likely be helpful. Providing her with good info saves her having to find the energy to do this for herself.

As far as if she should see another doctor, because she gets treatment for other things too, ideally that would be a collaboration so the whole picture is kept in mind. Some meds are known to aggravate RLS. Maybe someone else on here can speak more to that. I know someone who felt that Prozac intensified their symptoms, but in all fairness, they were on so many meds, any number of factors could have been at play.

I can speak only of my own experience, and it may not be right for others, but my frustrations with the various meds led me to experiment with using a TENS Unit (which I already had for back pain) before bedtime. It has dramatically improved my sleep. I doubt your friend could find a doctor familiar with this use of a TENS machine, at least I couldn't. But especially the neurologist should understand the mechanics of it and why it is or isn't a reasonable approach.

[dwbessire]

I continuem to be greatly impressed by the quality responses on this forum. Very good and helpful stuff....Everyone is supplying some really good information.

I think my friend has simply resolved that his is her lot in life to suffer RLS. So, she has not been very aggressive about researching and finding out more about it. After more than 30 years, I can certainly understand how she feels that way. So, I am hoping to be of some help to her as you suggest.

She thinks of herself as being lazy but I think it is simply that her energy is sapped and she is not getting the kind of sleep that is necessary.

I never heard of a TENS machine and am interested in finding out more about that and any other techniques that have provided relief.

Thank you, again, for your interest and assistance!

dwbessire

[dwbessire]

Any kind of indepth research into a subject always yields some things that sound too good to be true and may not be.

I came across a product called SEDORUM which is essentially vitamins, minerals and other things. This particular one seems to contain: Folic acid, Vit. B12, Iron, Magnesium, Calcium, Valerian, Lemon Balm (Melissa officinalis), GABA (Gamma Amino Butyric Acid) and Glycine.

Is anyone familiar with this product or does anyone have any experience with it?

There are other "miracle cures" for RLS advertised which pop up in any search for RLS info. Any information about these will be appeciated, too.

Thanks, again!

dwbessire

[ViewsAskew]

DW- those cures that sound too good to be true?

They are.

Some of us get a placebo effect for awhile - from a few days to even weeks. It's a weird thing. So, you get people saying it works. And maybe it sort of does.

To complicate it, some RLS is secondary - brought on by things like celiac disease, pregnancy, and even severe vitamin or mineral deficiency. Taking the vitamins and minerals known to help RLS is never a bad choice - it may help in some cases.

[dwbessire]

Thanks, Ann...You make a lot of sense and I know this this is unlikely to ever be a simplistic thing. There is likely to be unique factors at work in every individual.

Out of intense curiosity, I purhased an online book by Marie and Jeffrey Goodwin entitled "The Cause and Solution to Restless Legs Syndrome Revealed for the First Time."

Has anyone else seen this? More importantly, has anyone tried the suggested solutions and had any success with RLS? The book identifies salt (NaCl) as the culprit and claims that severe reduction in salt can eliminate RLS. There are a number of other things in the book which I am curious about...One is that Magnesium is critically important. Another is advice to avoid dairy products. But, mostly, the idea is to cut way back or eliminate salt entirely from the RLS sufferer's diet.

I will appreciate any response or feedback on this whole subject.

Thanks to those of you who have been so kind as to respond.

dwbessire

[SquirmingSusan]

DW, too bad you had to waste your money on the book. We could have warned you about her. There are others out there who claim to know "the cure" for RLS, and charge money to let you know about it, but Marie Goodwin seems to be one of the more persistent ones. If it was that simple and easy to cure RLS, doctors would certainly know about it and pass on the information.

As for the supplements, some of the vitamins and minerals may be helpful to those with RLS if one is deficient in those particular things. B vitamins an magnesium have been helpful to some people; iron is certainly helpful to those who are low on iron AND have RLS that is related to low iron. Valerian, Lemon Balm, and GABA are all commonly used to help people relax and sleep. So, it might actually help some people. Pretty expensive for a bunch of cheap vitamins, minerals, and herbs. And for all the claims the website makes about how well it works for RLS, it still comes with this disclaimer: "These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease."

I wish I had better news about alternative products, but I don't. If you want more information about alternative RLS treatments, do look in the "Non-Pharmaceutical" part of the message board. Some people have had good luck with support stockings, hot packs, cold packs, etc. Also, look up Jill Gunzel, The RLS Rebel on the internet. Her site is easy to find with any search engine and she has all kinds of great ideas on dealing with RLS.

I came across a product called SEDORUM which is essentially vitamins, minerals and other things. This particular one seems to contain: Folic acid, Vit. B12, Iron, Magnesium, Calcium, Valerian, Lemon Balm (Melissa officinalis), GABA (Gamma Amino Butyric Acid) and Glycine.

[badnights]

You've probably found in your reading that insomnia is a condition that very commonly occurs with WED/RLS, and often needs to be treated separately. In other words, one medication for RLS (typically a dopmaine agonist or an opioid) and one for insomnia. This is fairly common, for example I do it. I had my RLS symptoms treated adequately for 6 months but I was still a wreck and couldn't understand it. I had a sleep study done, and found I was waking up 40 times an hour or something. I was prescribed a sleeping pill and I take it every night. I won't sleep until 5 or 6 AM if I don't take it, it's as simple as that. Point being, most GP's won't prescribe sleep medicine for use on a daily basis; most sleep specialists will, if they think it's needed. There's nothing wrong with it, it just takes a specialist to identify the need.

The best insomnia medications tend not to be the older ones - the benzodiazepenes like Ativan - now that there are newer ones with fewer side effects and shorter half-lifes (Ambien, zolpidem, zopiclone). She could ask her doctor about these newer ones.

Depression and anxiety are very common with RLS too, but in many people they improve to the point of not needing medication once the lack of sleep from the WED/RLS is dealt with. So even the need for Prozac may decrease if she could just recover some of that lost sleep.

If her serum ferritin is low (definitely if it's lower than 50 ng/L, perhaps if it's lower than 100), there are 3 kinds of oral iron supplement that can be used - and she might be using already, to treat her low iron. The ones that are absorbed best also tend to cause the most intestinal discomfort. In order of increasing effectivenes and discomfort, they are ferrous gluconate, ferrous sulfate, and ferrous fumarate. The difference can be profound, so if she starts on a gluconate and her ferritin doesn't rise in a few weeks, try switching to a sulfate. And take it with vitamin C because it needs C to be absorbed! Without C, it's like you're taking it for nothing.

PS the "natural" remedies I've seen with "highly bioavailable" iron - well, check the amount of iron. I would have to eat fourteen pills a day of the natural supplement.

A few of us on this board have found out that we were deficient in vitamin D, and once that was dealt with the WED/RLS improved. So perhaps ask her to get her D checked as well. Normal for D is about 30. Some people say 20.

I hope your friend will fight against her apparent fate and with your help, make a new fate for herself.

[Betty/WV]

dwbessire: I'm surprised no one has mentioned to you Dr. Mark Buchfuhrer's books, "Restless Legs Syndrome, Coping with your Sleepless Nights." and "Clinical Management of Restless Legs Syndrome". by Dr. B and Wayne Henings and Hochang B. Lee. Dr. Buchfuhrer also known as Dr. B by ones here on this site. He has a sleep clinic in Downey, Calif., has been on the board of Restless Legs Foundation and very respected in the field of RLS and sleep issues. Some that are often contributors on RLS.org have went to his clinic in Calif., even if it means traveling long distances. He doesn't promise any miracle cure as some do, but his knowledge of the disease can be very helpful.

I bought these books from Amazon.com. and they are very reasonable and you can even purchase used ones. These books have helped me so much. They provide a very in depth coverage of the "monster" WED/RLS>