Email to new RLS friend

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Joined: Wed Feb 01, 2012 8:14 pm

Email to new RLS friend

Postby bryher » Wed Apr 19, 2017 6:40 pm

Hi all, I havent just joined but figured this wouuld be a gtood place to post. I was just writing to a friend of a friend - we both just learned we suffer from RLS/WED. So we're corresponding over email. I was sharing my situation, what I've learned, and where I'm at in a long email. I then mentioned this board and figured, what the heck, I'll post what I just sent her for the record since any an all shared experiences can help! Maybe it will help some here. Feel free to point out any inaccuracies, add comments. I fired this off pretty quick. Anyway, FWIW,. here's what I sent.

Email to my new RLS friend:
Hi XXXX, we had such a busy few days. Back home and into a schedule again. Yea I really wanted to make sure I had the time to write back b/c I've spent so much time battling this and have alot to share. And I totally agree - we have a 3 year old and a 9 year old and rarely have time to chat on the phone, so email is good.

First I'll say thats great and also interesting regarding the low dose of opiate. I just saw my sleep doc last week -- only go once a year to get my rx and for him to tell me nothing new has come about in the field :-). Anyway he was telling me the only other thing to do would be something with opiates in it. And he, like your doc, is really not comfortably doing it and would not recommend it. We both agreed that I have it managed ok enough that we dont need to go that route. But the interesting part is he said, "well the docs in the field down at Hopkins swear by the method, I'm just not sold on it." So it got me thinking maybe I should schedule a trip. And then you emailed. After I send this email I'm going to check out that link you sent.

So here's my (somewhat abridged) history...

I think I've had this my whole life, but it only became pronounced enough to impact my life in May/June of 2010. I only get it when I'm fully relaxed and am between awake and asleep. Some people have it 24/7 I've learned! Like Elaine said I've tried pretty much everything. It seems like every time I say "well this is my last shot at beating this" something else comes up, or I learn something new. Here's what I've learned...

RLS symptoms can be primary or secondary, meaning they could just me in your DNA (primary) or be caused by something else (secondary). I've come to believe its all secondary meaning find the trigger.

Early on, after not sleeping for days, I found on my own that if I fatigued my legs a certain way it would mask the RLS sensation for an hour or two. I do this dumb little leg bend/squat exercise for about 5 mins and I can sleep for a few hours. On good nights I might have to do it once, on bad nights every hour or so and worst nights it doesn't work at all.

After seeing a chiropractor he helped me locate a muscle that seemed to be at the start of my problem (piriformis muscle). I found if I massaged that muscle it helped it bit. Also led me to try an experimental surgery on it that didn't help at all. The idea was that muscle can grow around your sciatica. Long story.

Finally my first major breakthrough was diet. Someone mentioned going off dairy. I tried it for a few days and nothing. Then I learned you need to do it for 10-14 days. On day 11 I slept great! So I started focusing on my diet big time. I learned about something called a "leaky gut" (google it) and the difference between deadly food allergies (IGG) and sensitivities (IGE). Saw an allergist and did tons of research and found the only way, the gold standard, to figure out what foods you're allergic too is an "elimination diet". blood tests aren't worth it. the problem is elimination diets are really difficult and, my guess, too hard for 95% of people. But I did it. Took 3+ months (lost a lot of weight) but learned what foods trigger my RLS and which dont. Unfortunately I should've spent more time b/c I'm not 100% sure of it. I found that dairy & gluten for sure are bad for me. But also poultry, soy and rice! Not to mention caffiene. Along the way I thought I've found foods that are good/bad but its really hard to be sure. I will probably need to do another one again.

Bottom line the biggest trigger for me is diet. And I've learned it really has to do with my "gut". I think I have a very hyper sensitive and over active digestive system. I see a GI doctor who's somewhat helpful. He put me on a real serious antibiotic a few times that's helped. I looked up something called SIBO which is basicvally an overactive amount of the bad bacteria in your gut. I've seen an acupuncturist who swore it was my gut (that was before I did the elimination diet!) and an herbalist. I've tried non-GMO food. In the end the best indicator for me is what I eat, and drink (forgot to say that alcohol is also trigger b/c it inflames the gut).

As far as meds I would say be very careful. Great you're going down to the experts at Hopkins. Most docs don't understand this disease (its now a disease - look up Willis Eckbom Disease). The worst part for me - not sure if you've found this yet - 99% of the PhD medical professionals aren't interested in trying to figure out something new. They want to treat what they know and get you out of there. The alternative docs have been great. The rest have no interest in anything outside of what they know. One trick for me is to ask them if they know what "augmentation" is. Most will not know and thats a dead giveaway. It has to do with taking an RLS medication and your symptoms actually worsening. The people in the community know about it all too well. And it happened to me. I was really against medication and wanted to beat this naturally. Finally I gave in. The first medication I tried was "Ropinerole". It worked like a charm. But I had to keep upping the dosage b/c it stopped working. I had it prescribed by a Neurologist and eventually got to 3.5mg each night. The guy told me that's the dose they use for Parkinsons patients so it was ok. It wasn't until I learned from other sufferers on an online forum (see below) about augmentation. They also let me know while, true, Parkinsons patients may take 3.5 mg its spread out over a whole day! It took me 3 months to get off of the Ropinerole. It made my symptoms 100x worse so that if I went off it cold turkey I felt like I was dying. The sensation had worked its way up into my arms and chest. Anyway once I was off it was fine. I found a the sleep doc Im seeing now and he told me about a newer medicine called "Horizant". It helps and that's what I'm on today. Take it once a day at 5pm.

To your question below about Iron deficiency that's usually one of the first checks people do. I had a blood test and told me I was fine.

Wow, sorry I wrote so much but that's why I was waiting until I had time. Sometimes I feel like its getting worse and when I find little things that help its like one step forward and one and a half back. I get worried that I wont figure this out it will just become a backwards decline. But deep down I can't accept that there's no cause and no real cure for this horrible disease. That's what keeps me fighting and why I think I lead a really normal, happy life despite it all.

Oh, also, check out the online forum I sometimes visit. I'm sure there's others out there but this one seems to have some really, really awesome intel on it. There's a some really dedicated individuals on it that keep it going and give some great help and support:

Again, sorry so much but now that my long intro is out of the way we can compare briefer notes. I'm gonna check out Hopkins and will be curious to hear about your visit in May. You've inspired me to do the same!!


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Re: Email to new RLS friend

Postby ViewsAskew » Thu Apr 20, 2017 5:52 am

How fascinating you both just found this out. Nice to have someone you know to talk to about it. I know I would have appreciated such a letter when I was first being treated.

I hope he/she joins us, too.

One thing that might be helpful to add is that many of us have hemoglobin in the normal range, but that it is our serum ferritin that can be low. Also, that what is normal for others is often too low for us. The range is 20-250 (varies by lab, but around there), yet a significant number of us find that our symptoms lessen when it is at least 75, and even better if over 100. it doesn't help us all, unfortunately, but enough of us that it is very important to know about.

Glad the Horizant is working for you - just curious, do you take anything else with that?

Per the dopamine drugs and Parkinson's patients - they can actually take much, much higher dosages that we do - they can get as high as 24 mg! (that is a high dose, but they can use that much). Different disease, treated very differently. Any doctor that doesn't understand this should not be treating RLS!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Location: Northwest Territories, Canada

Re: Email to new RLS friend

Postby badnights » Thu Apr 20, 2017 9:37 am

Way cool, bryher!

I would love to know someone in my home city who has this crap disease, but I am soooo grateful to "know" so many people with WED/RLS on this board.

I was going to mention the same thing Ann did : your ferritin was said to be "fine" but it might actually be too low. You should get the actual number, if you can, because labs will report anything over 20 as normal, and as Ann said, people with WED/RLS need ferritin levels of at least 100. Some of us need it even higher. WED/RLS people seem to have problems keeping iron in our tissues (probably especially parts of our brains), even though we have enough for good hemoglobin levels. If your ferritin level is under 100, you might consider taking oral supplements.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Posts: 37
Joined: Wed Feb 01, 2012 8:14 pm

Re: Email to new RLS friend

Postby bryher » Fri Apr 21, 2017 3:22 pm

oh, good. I was hoping I wasnt spamming everyone with a long email :-)

You know, right after I sent this and posted it on the board I found a bunch of Iron topic threads posted here and learned I'm way out of date on what it all means. So yes, either I have to find my results or get another test done. Once again learning sooo much here.

Oh, and I don't take anything else with the Horizant.

I really do have a dream one day beating this and posting everything I learned and about my solution on this board. I truly wonder how many of us are suffering from what I'm finding related to diet and the digestive system. Only b/c its so hard to figure out but makes alot of sense!

thanks all!

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