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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.
aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Just joined...

Post by aveerik »

I am a 44 year old female with off and on issues with rls. My dad and sister also have it. I had first episode when pregnant or any time I took any antihistamines. Although I have it all the time it doesn't always bother me. It seems like when I am sleep deprived it gets worse, which is horrible since the more sleep deprived I am, the worse my symptoms are, thus the worse my sleep deprivation gets. I was prescribed Requip a year ago but couldn't tolerate side effects. I am currently trying vitamins/supplements instead. I freaking hate this anxious crawly feeling in both legs and arms and want it gone. I am so sleep deprived that yesterday at grocery store I thought a black fly was flying around me, when I saw it again in my car I realized it wasn't there. I started a supplement from western reserve labs that I read about in a post and so far it seems to work. I took first capsule after getting home from grocery store. I really hope it keeps working. So happy to find this group and know I am not alone.

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

Re: Just joined...

Post by badnights »

I seem to have had it like you; it was always there. As it got worse, my expectations got lower, and they moved in tandem so I didn't really notice how bad it was getting. A knee operation when I was 45 pushed it into overdrive, but even then, I had no clue that the thing with my legs could be causing all my daytime exhaustion. Ha.

The supplements that seem to be the most helpful:
  • vitamin D (adding 2000 IU per day is not crazy for some people, but it is fat soluble, which means it can accumulate in your body, so check your levels),
  • iron (this will only help for people whose serum ferritin is below 50 ng/ml- any higher and absorption will slow down - and for people with iron-deficiency anemia),
  • amino acids, one or more of them (you've found at least one of the posts already) : some people have had success, others have not, still others seemed to have worsened symptoms.
  • some people have used d-ribose with success to alleviate symptoms
  • maybe magnesium (this helps with leg cramps, which are not RLS/WED but are common with it)
  • Ann mentioned B vitamins, what's the scoop with those?

Tricks like giving your legs something to push against at night are worth looking into, especially if you avoid the pharma route for as long as you can.

EDIT note Aug 31 3:17 AM: the D-ribose and amino acid comments were a bit mixed up and have been fixed.
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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Just joined...

Post by ViewsAskew »

As I understand it, B vitamins and magnesium are in the same category as iron - they work when you're deficient. How to know if you're deficient is a different story!
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: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined...

Post by badnights »

It seems like when I am sleep deprived it gets worse, which is horrible since the more sleep deprived I am, the worse my symptoms are, thus the worse my sleep deprivation gets. ..... I am so sleep deprived that yesterday at grocery store I thought a black fly was flying around me, when I saw it again in my car I realized it wasn't there.
Being sleep deprived is a killer. People generally don't get it. Thank god for those who do. Sleep deprivation can cause symptoms identical to those of all the major psychiatric disorders, including psychoses (a psychiatrist told me that), as well as cardiovascular disease and probably immune system dysfunction, and what-all else...
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.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: Just joined...

Post by aveerik »

It seems the supplement isn't working or it didn't yesterday. Last night I literally go zero hours of sleep. It could be mowing the lawn, doing yard work in 84 degree weather. I probable over did it a bit. Not capered to my usual 8 hours working in the yard. My husband is a fire fighter and left for work this morning so I took my daughter to Kumoricon and was crying as he left knowing this was going to be hard. I made it through, I had to its not my daughters fault I didn't sleep and we had fun. I was so tired I fell asleep reading with no symptoms and just woke up with horrible symptoms.
I was wondering if anyone else has really low blood pressure and a slow heart rate? I always have been low but recently really low. 84/48 for bp and heart rate 42. Wondering if this can effect it. I also haven't had my normal very energetic level of feeling even before this last episode.
It does seem the harder I cry when unable to sleep the faster I fall back asleep. I didn't even have energy to cry last night.
Thanks for all your input :D

badnights
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Re: Just joined...

Post by badnights »

I also haven't had my normal very energetic level of feeling even before this last episode
. I suspect you're underestimating how sleep-deprived you are. The effects are devastating. It must contribute to the crying too!

I have always had fairly low bp but not as low as you indicate. Low normal. To the best of my knowledge, it is not related to WED/RLS at all.

I am so sad you had a crappy night. ( I was really hoping that supplement would work. I have just ordered the free 10-day supply.) Remember the disease goes up and down.

Have you checked your ferritin and D? Please do! It might make all the difference, and what a simple solution. If I stop taking iron for as little as 2 days, my symptoms gets worse. Vitamin D I notice after 2-3 weeks. so get it checked out!

Also, keep a realistic eye on your symptoms, and your quality of life. Maybe start keeping a sleep diary (viewtopic.php?f=2&t=8432&p=68353#p68353 ) A lot of us have found that we can look back and see how awful our lives had gotten, but it happened so gradually that we didn't realize it at the time. So don't let your feeling of what is normal re-adjust to your current poor circumstances, if you can help it. Keep in mind what it means to be normal and do what you have to in order to get that back.
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.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: Just joined...

Post by aveerik »

I just saw my doctor, she prescribed Mirapex for rls and trazadone to help sleep. It sounds like the Mirapex works like requip and she didn't have much hope that it would work any better then the requip did. I do know doctors don't know drugs like pharmacists do so I asked the pharmacist a lot of questions without getting much hope. I even asked him about gabapentin and he said he didn't think it was any better then the rest. I finished my 10 day free supply from westernerservelabs.com and I am hopefully going to get bottle tomorrow. I figure it must do some good as it worked so well first time I used it.
As far as my low bp and heart rate my doctor ordered a heart monitor so see what is up with that.
I will try keeping a diary and see if I notice any patterns.
I was wondering if people who have parkinsons disease do their uncontrolled movemnts feel like our restless leg movements?

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: Just joined...

Post by aveerik »

And I did get all my levels drawn today, ferratin, b, d, thyroid, and many more.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Just joined...

Post by ViewsAskew »

I shouldn't say this because I'm not a doctor....but please take the smallest dose possible of pramipexole (Mirapex) at first. If she prescribed .25 mg, cut that in half or even quarters. If she prescribed .125, do try to cut it in half. Side effects are related to dose sometimes, so starting low an help minimize.

Also, if you get your ferritin back and it's not at least 100, you have a tough decision. It's really not a good idea to take a DA if your serum ferritin is under 100. Chances for augmentation greatly increase.

Hope these help.

No, our movements feel different. Many PD patients also have WED/RLS. How horrible that must be to have both.
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.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Just joined...

Post by rthom »

aveerik wrote:As far as my low bp and heart rate my doctor ordered a heart monitor so see what is up with that.


Has this been new since you have been taking the Mirapex (my hear rate went nuts on it )?

Polar Bear
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Post by Polar Bear »

Keeping a sleep diary was the first thing that made my GP sit up and take my sleeplessness seriously. I showed him a six week record which was averaging at 2 - 3 hours sleep per night, the medication taken etc. etc. That was the first time he agreed to prescribe me a sleep aid. Now I get about 5 hours sleep which isn't enough but it is great compared to previously.
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

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: Just joined...

Post by aveerik »

ViewsAskew wrote:I shouldn't say this because I'm not a doctor....but please take the smallest dose possible of pramipexole (Mirapex) at first. If she prescribed .25 mg, cut that in half or even quarters. If she prescribed .125, do try to cut it in half. Side effects are related to dose sometimes, so starting low an help minimize.

Also, if you get your ferritin back and it's not at least 100, you have a tough decision. It's really not a good idea to take a DA if your serum ferritin is under 100. Chances for augmentation greatly increase.

Hope these help.

No, our movements feel different. Many PD patients also have WED/RLS. How horrible that must be to have both.


My doctor rx'd 0.125mgs of Mirapex. My ferritin level was 55 but wondering if accurate since I started taking iron a week before.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: Just joined...

Post by aveerik »

rthom wrote:
aveerik wrote:
As far as my low bp and heart rate my doctor ordered a heart monitor so see what is up with that.


Has this been new since you have been taking the Mirapex (my hear rate went nuts on it )?


My low heart rate and bp started at the end of June, before rls/wed started.

ViewsAskew
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Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Just joined...

Post by ViewsAskew »

aveerik wrote:
ViewsAskew wrote:I shouldn't say this because I'm not a doctor....but please take the smallest dose possible of pramipexole (Mirapex) at first. If she prescribed .25 mg, cut that in half or even quarters. If she prescribed .125, do try to cut it in half. Side effects are related to dose sometimes, so starting low an help minimize.

Also, if you get your ferritin back and it's not at least 100, you have a tough decision. It's really not a good idea to take a DA if your serum ferritin is under 100. Chances for augmentation greatly increase.

Hope these help.

No, our movements feel different. Many PD patients also have WED/RLS. How horrible that must be to have both.


My doctor rx'd 0.125mgs of Mirapex. My ferritin level was 55 but wondering if accurate since I started taking iron a week before.


55 is low to be using pramipexole (Mirapex). Doctors now suggest it should be at least 100 when you take it. The hard part is that once you reach 40 or 50, it's hard to get it higher by taking oral iron. Infusions work much better.

Taking oral iron takes many months, usually, to make a dent. You may be able to raise it with oral iron, but it will likely take many months.
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.

aveerik
Posts: 75
Joined: Sun Aug 25, 2013 9:07 pm

Re: Just joined...

Post by aveerik »

What do doctors who know about WED/RLS recommend you take if ferritin level is below 100? Opiates not an option for me, serious family history of opiate addiction.

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