Hello to all

Whether new to RLS/WED 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.
twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Hello to all

Postby twitch » Mon Apr 08, 2019 3:38 pm

I am new to this site so please forgive me if mistakes are made.I am a 72 year old male who has had RLS since I was 17. This disease didn't have a name back then. I thought it was just restlessness and too much energy in a teen. At this time, I would like to share what I have found to alleviate the discomfort of RLS. For one thing,it only gets worse with age as my doctor has pointed out.I have found that jogging and running were a great help when I was younger. When my RLS kicked up in bed at night (no pun intended) lifting both my legs as far as they would go and holding them in the air as long as I could, then slowly bringing them down would always calm them down so I could get to sleep. This procedure is not as effective at this stage of the game I am sorry to say. I have tried most of the prescription drugs but did not like the side effects,mainly dizziness and fatigue. The Parkinson drugs worked wonders for me, but every few weeks I had to take a higher dose to be effective. These drugs have the terrible side effect of having your RLS get even worse when you stop taking them.For me,stress will make RLS worse at night. I have found,and I am very serious here,the only thing that makes this disease abate so I could get a good nights sleep, is a shot or two of 100 proof alcohol of your choice,every night before going to bed. Good Luck To All......

stjohnh
Posts: 794
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello to all

Postby stjohnh » Mon Apr 08, 2019 6:06 pm

Hi Twitch,
Welcome to the RLS forum. There is a great deal of experience, knowlege and compassion among the forum members. Someone will have experience with almost anything you can imagine.

I am 71, but didn't get RLS until my mid 30's. Looks like you have found out a lot about RLS just from experience:
It is miserable
It gets worse with age
Dopamine agonists ("parkinson drugs") work well for a short period then lose their effectiveness, and have nasty side effects.

If you are managing ok on a couple of drinks a night that doesn't sound too bad, however there may be a tendency to take that third, fourth, and so on as time goes by. Additionally there is the problem of falls, which gets worse as we all age, and is definitely worsened by alcohol.

RLS is caused by BID, Brain Iron Deficiency. Iron can be help many people with RLS and is the only treatment without significant side effects. To be effective it usually requires an intravenous infusion of iron. Oral iron helps some, but usually just can't provide enough iron to the brain.
Blessings,
Holland

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Mon Apr 08, 2019 8:14 pm

Hello Holland...That's why I only have a few close to bedtime.

Jim

ViewsAskew
Moderator
Posts: 15599
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Hello to all

Postby ViewsAskew » Mon Apr 08, 2019 9:18 pm

Welcome, Twitch. I hear you on having had it since a teen - it is not fun, is it? I also had issues with the dopaminergic drugs. I used to "solve" it at night with exercise - still do sometimes. I used to do what were called hurdler stretches - worked really well. I use the exercise you mentioned now when it flares up and my meds are not completely covering.

Alcohol, sadly, often make my symptoms worse - I love a glass of wine or a beer now and again and rarely partake anymore.
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.

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Mon Apr 08, 2019 10:30 pm

Hello Ann...You are right,RLS is not fun.I notice that stress can really aggravate the symptoms,at least in my case. After I stopped the dopamine drugs,my legs were dancing day and night for three days straight before calming down. I tried everything for the last 35 years,pills rubs,lotions,you name it,I tried it. Good to hear from you...

Jim

ViewsAskew
Moderator
Posts: 15599
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Hello to all

Postby ViewsAskew » Tue Apr 09, 2019 12:29 am

I think you'll notice a LOT of us say that stress makes it worse!

By the way, have any of your doctors suggested that you get a serum ferritin test? If they did, do you know what the exact value of that test was?
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.

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Tue Apr 09, 2019 9:19 am

Hello Ann...I requested a serum ferritin test from my doctor a few years ago. It was in the normal range for a male. (150 ng/ml)

Stress is very bad for your health and aggravates RLS terribly for me.....

Jim

Polar Bear
Moderator
Posts: 7467
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello to all

Postby Polar Bear » Wed Apr 10, 2019 3:08 am

twitch, I'd suggest that you ask for an up to date serum ferritin test. Also ask for the reading, what is 'normal' is not sufficient for us suffererers of RLS. While 20 could be considered normal we need it to be up around 100.
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

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Thu Apr 11, 2019 8:51 am

Thanks Polar Bear. I will bring this up with my doc at the next visit....

Jim

sleepdancer2
Posts: 203
Joined: Sun Jun 29, 2014 7:46 am

Re: Hello to all

Postby sleepdancer2 » Sat Apr 13, 2019 10:14 am

While your doc is checking things might be a good idea to also check your Vitamin D and Magnesium. These things among others are important to muscle and nerve health. Your history of trying just about everything sounds familiar. I am lucky in that I am one who can quiet my legs by using a TENS Unit on my lower back before bedtime. Welcome to the board.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Sun Apr 14, 2019 11:16 am

Greetings sleepdancer2....My vitamin D and magnesium levels are very good. The tens unit did nothing for the dance routine I am sorry to say. My personal feeling is that RLS has something to do with the levels of L-dopa in the brain, either too much or not enough, I don't know. Also, when I am lying in bed and the legs are fine and I think to myself, great, the legs are still tonight, then as the thought leaves me, the legs begin. Could some of this be mental? I now do as many leg squats as I could, around 100, in the evening before bed along with a shot or two of of bourbon. This works very well for me at this point. Good to hear from you....

Jim

stjohnh
Posts: 794
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello to all

Postby stjohnh » Sun Apr 14, 2019 1:34 pm

twitch wrote:.... My personal feeling is that RLS has something to do with the levels of L-dopa in the brain, either too much or not enough, I don't know. Also, when I am lying in bed and the legs are fine and I think to myself, great, the legs are still tonight, then as the thought leaves me, the legs begin. Could some of this be mental?..
Jim


You are correct on both of these points:

L-dopa is metabolized to dopamine. Dopamine is one of the main neurotransmitters of the nervous system. Scientists have shown abnormal dopamine receptor activity in the brains of RLS patients. The most commonly used RLS medicines (Requip and pramipexole) are dopamine agonists, that means they stimulate dopamine production in the brain. One medicine occasionally used for RLS is Sinemet. This is a combination of L-Dopa and carbidopa. It is turned into dopamine in the brain. Research has shown the underlying problem of RLS is BID (Brain Iron Deficiency). BID is known to cause abnormal adensosine levels and abnormal adenosine levels are known to cause dopamine abnormalities.

The mental aspects are well known as well. For instance it is known that if a person with RLS is doing a mentally active task they will not get urge to move symptoms anywhere near as easily. Likewise, mentally boring tasks, like sitting quietly at a dinner where the conversation is not interesting, is likely to bring on RLS symptoms.
Blessings,
Holland

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Sun Apr 14, 2019 3:35 pm

Thanks for your input Holland. I was taking pramipexole for about a month. I thought it was a miracle drug at first. It worked great for about four days,then I had to double the amount to get the same effect,then triple the amount after three weeks. Pramipexole has the very bad side effect of possibly making RLS worse if taken for any length of time. I quit this drug cold turkey and my legs were going crazy, day and night for a number of days. I will never take Parkinson drugs for this condition again.

Jim

Rustsmith
Moderator
Posts: 3877
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Hello to all

Postby Rustsmith » Sun Apr 14, 2019 5:29 pm

Jim, what you experienced was augmentation. It happens to almost everyone who takes a dopamine agonist for an extended period of time. You augmented in a shorter time than normal, but you are not the only person on the board with that experience.

And you are correct that you should never go back on a dopamine agonist again, especially with the experience of augmenting in a matter of days. At this point, you need to discuss other options with your doctor.

Also, do you know what your ferritin level is? Ferritin levels need to be above 75, especially when taking a dopamine agonist. If yours was very low, that could well have been a contributing factor to your 4 day run.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

twitch
Posts: 8
Joined: Mon Apr 08, 2019 9:06 am

Re: Hello to all

Postby twitch » Sun Apr 14, 2019 11:39 pm

Hello Rustsmith... There are no other options to discuss with my doctor. I have tried just about everything in the past 55 years.Thank goodness that I do not have rls as bad as some of these folks that I read about here....

Jim


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