WED/RLS Diagnostic Tool

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
MENINBLK
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Joined: Wed Jun 06, 2012 9:54 pm

WED/RLS Diagnostic Tool

Postby MENINBLK » Tue Jun 25, 2013 1:54 pm

Hello All,

I am currently suffering from both WED/RLS and Charlie Horses.
I have both and they affect me separately and at different times.

I have looked over your WED/RLS Diagnostic Tool and I have to say your answers to questions 6 and 7 have a lot to be desired.

I work indoors for the US Postal Service and I work from 22:00 until 6:30, 6 nights a week, 52 weeks a year.
(The US Postal Service is open 24/7/365 and NEVER closes)
My Evenings are the Mornings, and my Mornings are the Evenings for the majority of the population.
My WED/RLS tends to flair when I am home in your morning, preparing to get to sleep.
It can start when I am standing, sitting or lying down. WED/RLS has a mind of its own.
It even tends to flair while I am sleeping and my wife has witnessed it on several occasions.
I really hate this because it can ruin my entire night (your daylight hours).

Charlie Horses can and are DANGEROUS. I have had very painful Charlie Horses that have woken me from a deep sleep
and caused me to jump out of bed, screaming in pain and trying to stretch out the cramped muscles to alleviate the discomfort.
I have had charlie horses so strong that I limped for weeks after having them.
Charlie Horses tend to flair while I am sleeping and when I arise from sleep.

I am also suffering with early stages of Hypertension due to obesity and it is being controlled with 5mg Bystolic once a day.

I've spoken to my PCP which has retired and I am looking for a new PCP.
My older PCP said that it could be a mineral imbalance or deficiency.
My PCP never looked into seeing which it was or referred me to someone who would.

I've brought it to the attention of my Cardiologists and they are puzzled because I am otherwise healthy
and I am taking a daily vitamin to supplement everything I should be getting.
My blood tests don't show any imbalances, deficiencies or overages.

So I am urging you to make a small notation on your WED/RLS Diagnostic Tool, that the results for questions
6 & 7 can change and match lifestyles and/or habits that are not followed by the majority of the population.
Otherwise your answers should fit for the population that works during the daytime hours.

Thank you,

Pete...

Polar Bear
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Location: N. Ireland

Re: WED/RLS Diagnostic Tool

Postby Polar Bear » Tue Jun 25, 2013 5:14 pm

Thank you for your post and your comments are noted.

You mention that your blood tests are considered normal. Something to bear in mind is that
iron levels can be a part of the RLS/WED 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 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.

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

MENINBLK
Posts: 4
Joined: Wed Jun 06, 2012 9:54 pm

Re: WED/RLS Diagnostic Tool

Postby MENINBLK » Tue Jun 25, 2013 5:27 pm

Thank you for that information Polar Bear.
I will ask for the Ferritin test at my next visit.
I am also not taking any of the medications you mentioned,
I do not smoke and I drink alcohol sparingly.

Thanks again !!

Pete...

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

Re: WED/RLS Diagnostic Tool

Postby rthom » Tue Jun 25, 2013 6:50 pm

Pete

I have RLS as well and for a long time had debilitating Charlie horses 5-6 a night causing tears in my muscles--was torture. I found out mine was due to a medication I was taking--maybe the level was too high for me or the mix I don't know, I just know that when I stopped the med the Charlie horses went away and have not returned. Mine was due to Gabapentin. I know one other person who had painful spasms as well and his was due to too much calcium. (drank too much whole milk), same story-stopped the milk, Charlie horses stopped and have not returned.
Good luck in finding your trigger.

badnights
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Location: Northwest Territories, Canada

Re: WED/RLS Diagnostic Tool

Postby badnights » Wed Jun 26, 2013 3:04 am

Hi MENINBLK
We can look into changing the WED/RLS Diagnostic Tool you refer to but I must admit I am not sure where you saw it. Was it on this discussion board? Or on the main WEDF site?
thanks

I will assume questions 6 and 7 have something to do with time of symptoms; the onset or worst of symptoms is in the circadian evening and early night, which refers to your body's internal-clock time, not the time of day.
But perhaps this response is not appropriate - I'll add more once I find the tool you refer to :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

MENINBLK
Posts: 4
Joined: Wed Jun 06, 2012 9:54 pm

Re: WED/RLS Diagnostic Tool

Postby MENINBLK » Wed Jun 26, 2013 10:17 pm

Access to the WED/RLS Diagnostic Tool is right on your home page.
If you click on 'Do I have WED/RLS?' it takes you to http://www.rls.org/wed-rls-diagnostic-tool .
There you will see the questionnaire.

Pete...

ViewsAskew
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Location: Chicago

Re: WED/RLS Diagnostic Tool

Postby ViewsAskew » Thu Jun 27, 2013 12:51 am

MENINBLK wrote:Access to the WED/RLS Diagnostic Tool is right on your home page.
If you click on 'Do I have WED/RLS?' it takes you to http://www.rls.org/wed-rls-diagnostic-tool .
There you will see the questionnaire.

Pete...


There are several tools here in the discussion board, along with more tools in archives, and yet more on the main site, so we weren't sure which one you meant. Thank you for clarifying it. We'll let the Foundation staff know that, for a shift worker, questions 6 and 7 are likely to yield different answers.
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
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: WED/RLS Diagnostic Tool

Postby badnights » Thu Jun 27, 2013 2:22 am

I see it now, thanks. As I thought, the answers refer to the circadian day, which is day according to your body's internal clock, not the day as determined by the position of the sun. That really should be clarified on that Diagnostic Tool, thanks for mentioning it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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