Greetings - New Member from Mesa, AZ

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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Margaret1917
Posts: 3
Joined: Sat Dec 10, 2011 6:32 pm
Location: Mesa, AZ

Greetings - New Member from Mesa, AZ

Post by Margaret1917 »

Greetings,
My name is Margaret from Mesa, AZ. In Nov. I turned 94, my mind is still sharp and I haven't had any major illnesses, except for one nasty culprit... RLS. I have had RLS for decades. I started experiencing symptoms at age 24 when I was pregnant with my first child. As I got older the Doctor kept telling me it was poor circulation and the only relief was to get up and walk around. For my 90th birthday my grandson took me to Disneyland for 3 days. We walked for miles, stood in lines and I even got on the Space Mountain ride. Over the past two years I have gone from able to feeble. RLS has increased to a constant 24 / 7 with no relief, it has now put my entire life on hold. The only medication I have been on is Requip and that now fails to work. I must admit when it comes to RLS medications and treatments I am a bit naive, I assumed (from my doctor) that there were only 2 medications. I look forward to hear about what treatments and medications are out there.
Margaret
Mesa, AZ

Polar Bear
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Post by Polar Bear »

Hello Margaret - Welcome to our site.
We are just sorry that you need us.

How wonderful to have been able to go to Disneyland for your 90th birthday and I'm sorry that you are now not just as able. If you are not as mobile as you would like to be the rls/wed will not be your friend. I hope you are still able to get about and thus help relieve some of the symptoms when necessary.

Iron levels can be a part of the condition. An ordinary blood test may show your iron levels as ok but it is your serum ferritin levels that need to be checked. Doctors often reckon that a ferritin level of 20 is normal but for us rls/wed sufferers it should be at least 50 and preferably up towards 100. This test is not done as a matter of course when having bloods done and you should specifically ask that your ferritin is checked. Ferritin levels tell us what iron is stored in our brain, rather than the iron that is flowing in our blood.

Many of us have difficulty in finding a natural solution to our symptoms however you may find some tips on how to cope on the RLS Rebel site. Here is the link:
http://members.cox.net/gunzel/index.html

The Mayo Clinic Algorithm is a wonderful source of information for treatment and can be accessed via the link in my signature. It is an excellent discussion paper for you and your doctor to decide what to try next.

This book is excellent (for patients that physicians could also learn from) -
Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights. Dr Buchfuhrer who is one of the authors has a site http://www.rlshelp.org/ which also gives lots of information and has hundreds of question and answer letters that are very useful. Dr B is a wonderful support and will answer email requests for guidance and advice.

Requip, and Mirapex which is similar, are the first line for treatment. There are then the anti-convulsants such as Lyrica and most people find opiods to be excellent at relieving symptoms but many doctors are reluctant to prescribe opiods. If your GP is RLS aware, or is willing to learn, he can be your best friend.

Also make sure that none of your current medication is aggravating your rls, such as anti-depressants, benedryl, antihistamines, anti nauseants, also alcohol and nicotine.

There is a great deal of information throughout the site and indeed I was desperate when I found this group. The information led me to treatment and to some semblence of normality.......

Please ask anything you like and we will try to help.
None of us are medical doctors but we do have a lot of experience of dealing with RLS.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Post by badnights »

Welcome, Margaret. I echo what Polar Bear has said. She covered all the bases for you, and has pointed you to some excellent reading. Please be sure to get your ferritin checked, as Mirapex and Requip can backfire horribly if your ferritin is low. I wonder if this is what has happened to you, as you now have it 24/7 without relief.

Mirapex and Requip are two of the three drugs currently approved for RLS by the US FDA. The other one is an anti-convulsant called Horizant. But there are many more medications that are prescribed off-label for RLS, and indeed the most effective for many people are various opioids.

I wonder about augmentation. This is when your RLS symptoms are worsened by a medication (mainly the dopaminergic drugs - Mirapex, Reqiup, Sinemet). The worsening is compared to how you were before starting the medication, and consists of one or more of: an increase in intensity, a spread to other body parts (eg. arms), earlier daily onset (eg. at 4 PM instead of 7 PM), shorter duration after sitting or lying down before the symptoms start up, or shorter duration of relief from treatment. If this is true for you, and the worsening can't be attributed to taking some other medication like anti-histamines that make RLS worse, then you are probably experiencing augmentation.

The proper method of treating augmentation is to stop the offending medication, replacing it with a moderate potency opioid for 2 weeks til it's out of your system (til the witrhdrawl is over, because there is a withdrawal in RLSers that consists of worsened symptoms), then starting up a new medication. You could still try Mirapex because you will not necessarily augment on one just becuase you augmented on the other. But FIRST get your ferritin above 50 by taking oral iron sulphate. Anyway this is just my understanding of what a doctor experienced in treating RLS would do. You should be able to uncover the same information in your reading. You may want to print out relevant information and highlight the parts that you want your doctor to be aware of, and bring that to your next visit. Many doctors are experienced in using these drugs for Parkinson's patients, and there is no such thing as augmentation for them, so the doctors may need to brush up a bit on RLS.

Let us know if you think you might be experiencing augmentation, or if you think it's the natural progression of the disease.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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Margaret1917
Posts: 3
Joined: Sat Dec 10, 2011 6:32 pm
Location: Mesa, AZ

Post by Margaret1917 »

I'm not computer savvy and hope this posts in the correct spot.

Thank you Beth, Board Moderator and Board Members,

Thank you all for the informative information, experiences and suggestions. I have spent the last 7 days reading the RLS boards. I have learned more in 7 days than I have in the last 70 years. I have appointment with an RLS specialist. The previous doctor I had been seeing was not a specialist in RLS. I am excited and I can't wait to see this specialist and get the proper tests done. I am so happy that I found the RLS board. It has given me back the hope that I once lost. I'll post my ferritin results and suggested treatments.

Thank you all,
Margaret in AZ :)
Margaret
Mesa, AZ

ViewsAskew
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Location: Los Angeles

Post by ViewsAskew »

Gosh, Margaret, I just love posts like that. I don't love that you needed this place, but I am so happy that it's helping you.

As it was for you, coming here made a huge difference in my life and taught me more about WED (RLS) that I learned anywhere else. I've also come to rely on most of the information here as being accurate and true, something I don't find on many other sites.

I hope finding a new doctor works well for you.
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.

Polar Bear
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Post by Polar Bear »

Margaret, I am looking forward to hearing how you get on with your new doctor.

It is good to know that you have found our board to have been helpful. And when you post your own experiences such as when you see your new doctor this all goes to building up information for others.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

A note of caution: even some RLS specialists are back tin the dark ages and prescribe clonazepam for RLS (a heavy-duty sleeping pill). If they suggest that, accept the prescription but aks them if they could please take this (handing them a paper copy of the RLS Foundatino medical bulletin with the relevant parts highlighted) and mull over it whenever they got a chance. Then ask to set up a followup to discuss the effeciveness of the dinosaur med. By then he'll have read the paper and recommend somethigng sensible.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Post by badnights »

>> But it seems more and more these days, people who call themselves RLS specialists are well informed, so don't wiorry about that! Sorry I was a worry mongerger!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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Margaret1917
Posts: 3
Joined: Sat Dec 10, 2011 6:32 pm
Location: Mesa, AZ

Re: Greetings - New Member from Mesa, AZ

Post by Margaret1917 »

I was referred to 2 specialists and they are both listed under "Sleep Medicine". Are RLS specialists usually in this field or am I being refereed to the wrong type of doctor? I don't want to complain or talk negative but for years my previous Dr. kept telling me that it was just circulation causing the problem. When all the circulation tests came back fine he then told me it was all in my head.

Merry Christmas,
Margaret

Chipmunk
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Re: Greetings - New Member from Mesa, AZ

Post by Chipmunk »

My RLS/WED doctor is a sleep medicine specialist, so yes, they could possibly do a great job for you.
Tracy

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

ViewsAskew
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Re: Greetings - New Member from Mesa, AZ

Post by ViewsAskew »

Margaret, how frustrating to have a doctor say it's all in your head!

A sleep doctor might help....and he or she might not. But, it's worth a try. The issue is how much they know - some know a lot, some a little, some not much at all. But, there isn't any specialty that I know of where all doctors are equally aware of how to treat WED (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.

badnights
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Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Greetings - New Member from Mesa, AZ

Post by badnights »

Hi Margaret
all sleep specialists should know how to diagnose and treat RLS/WED but unfortunately, many don't. Ditto for neurologists, since it's a neurological disease. So either one is a good bet, but not a guarantee. I was disgnosed by an internal medicine specialist, who happened to have an interest in sleep apnea and had heard of RLS in his readings on sleep medicine. Other people are being treated well by general practitioners.

I hope one or both of the two specialists can help you. It's sad but true that some doctors who don't know the disease eventually suggest it's in our heads. I haven't had that from a doctor (yet) but I've gotten it from various other people. Sort of makes one angry.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Greetings - New Member from Mesa, AZ

Post by rthom »

Glad to hear about your trip- I'm on requip now and personally find it's currently helping more for me than Mirapex, however I'm having problems with side effects. Still rather have the rls lowered though! :D

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