Monday, January 9, 2012

Desperation

If you have been on the RLS Facebook site much at all, you will see so many (too many) people who are desperate for relief. They can't find a medication that works, or that works for long. They can't find a doctor who will work with them. The desperation is clear in what they have to say and for most of us reading those posts, we understand exactly what they are going through.

If I had a magic wand, all these problems would disappear in a sprinkling of fairy dust. Alas, I cannot help you that way; but I would like to pass on an idea that might help.

Several times I have asked people to keep a "sleep" diary. What did they eat, drink, or do that day and how did they sleep that night? The purpose was to find reasons that might trigger a bad night. Making lifestyle changes is the first step in gaining control over RLS/WED.

Now, here's the usual scenario when you visit your doctor. You tell them you sleep only a few hours (if that) a night. You explain your symptoms, remind them of what you have and how bad you feel the next day. The doctor makes a few polite noises, writes something in your file and little if anything gets done. Even the best doctors seldom understand how bad RLS/WED is.

So here is what I propose: keep a "This Is My Life" journal to take with you to your next doctor visit. Here is a minimum of what it should include--
1) A list of every doctor you have seen for RLS/WED and related items (with specific dates if possible).
2) What each doctor suggested or prescribed.
3) What worked and what didn't.
4) A list of every medication tried, dosage, how long you used and if it was helpful or not.
5) A list of every over-the-counter, herbal or natural treatment tried and how it worked.
6) A list of every test or treatment done and the results.
And the most important items of all--
7) A true listing every night of when you went to bed, when you got up, how long you were up, what you did, when you tried going back to bed, etc.
8) How you functioned the next day--how was your life impacted socially, at work, physically, in every way possible.

I'm sure you can think of other items to add to this. The point is that a doctor will take you much more seriously if you have taken the time to keep a log like this. It shows that you are not exaggerating the problem and just what medications, treatments or tests have been done. It helps clarify the problem for him and a copy should be kept in your file with every doctor you see.

However, it is very important to keep this log factual and emotion-free. This is for his study and information. The time for emotion is face-to-face when talking about how this affects your quality of life, AFTER he has looked through your log.

Is this a guarantee that your doctor will pay attention and take you seriously? No. But it could make a big difference in helping you find relief. That's the bottom line here, isn't it? If nothing else, it will give you something concrete and beneficial to do when you face those sleepless nights.

Keep reading and posting comments. Just knowing that we are not alone is a huge help in this fight.

Moon and Stars,
Kathy

18 comments:

Anonymous said...

Thank you so much Kathy, for the encouragement. You are an amazing woman.
Since being on this site I have been validated greatly with my RLS/WED.
Unfortunately, I am absolutedly no good at keeping diarys, but at least I have a good dr. who cares and listens to me and defends me.

I wish you the best in your life and here on this RLS/WED site. We need the information. Forwarned is forarmed.
Fortunately, I have never let people tell me "its all in your head" about anything my entire life. So that has helped me here. What I always say back is, "so your telling me that your ignorant"? That usually either makes them mad or starts them back on the road to investigation.
Blessings to you Kathy,
xoxoxoP

Kathy said...

Thanks for the feedback. You know, we all handle life (and RLS) differently. But that's a good thing because you just never know when a little comment someone makes will lead to some "AH HA!" moment. I appreciate you taking the time to leave a comment on here!

deborah said...

Excerpt: "Long story short, I have gotten wonderful results with this combination of supplements:
600 mg. chelated Magnesium
500 mg. taurine
1 or 2 sublingual tabs of GABA Calm
1/2 tablet of AnxioFit-1
These are all taken at bedtime.

Early in the day, after breakfast, I take 250 mg. of L-Tyrosine. Tyrosine is stimulating so do not take late in the day. It also helps alot with stable energy levels and reducing appetite."

Like many of your readers I have struggled for many years with RLS and tried EVERYTHING! In the last year RLS has actually become a full body experience. Some nights it is in my spine,pelvis and shoulders, but not the legs. This is most agonizing.

Recently, I took a neurotransmitter quiz which revealed I may be low in GABA.

I even tried a medical marijuana tincture for RLS. I did get some relief from the marijuana tincture, but the mood altering aspect did not work for me.

Then I received information about a product called AnxioFit-1 from a friend who works in a health food store. Discoveries had been made by Hungarian researchers regarding the echinacosides in Echinacea. Testimonials for AnxioFit-1 let me know that people were getting all kinds of results from using this product; not just for anxiety.

Long story short, I have gotten wonderful results with this combination of supplements:
600 mg. chelated Magnesium
500 mg. taurine
1 or 2 sublingual tabs of GABA Calm
1/2 tablet of AnxioFit-1
These are all taken at bedtime.

Early in the day, after breakfast, I take 250 mg. of L-Tyrosine. Tyrosine is stimulating so do not take late in the day. It also helps alot with stable energy levels and reducing appetite.

I do usually begin to experience RLS symptoms in the evening when I become still. So I may take the taurine, one magnesium and half of a GABA Calm about an hour before bed. I then take 400mg more of magnesium, a whole GABA Calm and 1/2 tablet of AnxioFit-1. My sleep is much improved and I'm even experiencing REM sleep again.

Added benefits of AnxioFit-1 is that my boyfriend, John, is experiencing greatly reduced stress, anxiety and overwhelm while at work with better concentration. He is a waiter in a very busy restaurant.

I'm soooo happy I've finally found something that works. I am in the early stages of starting a new business and I'm sure I will need the rest.
And yes, it is much worse on the full moon."

Anonymous said...

I have started taking Ropinerole in the AFTERNOON. 2 tablets, 1 mg. each. My RLS has disappeared completely.

I HIGHLY recommend everyone try this. I was taking it at NIGHT and it wasn't working. But it has to be taken every day - in the AFTERNOON. Hope this helps someone.

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