ANYONE NEW PLEASE ANSWER

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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becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

ANYONE NEW PLEASE ANSWER

Post by becat »

Hey, I'm so glad to have so many guest the last couple of days. It means more people are getting educated.
BUT, it's killing me, what sparked this many people to come onto the board lately?
Tv, Radio, newspapers.......?
Can some of you newbies tell me what you heard or saw to spark this.
Glad to have you all.
Lynne /Becat
Moderator

kjmendoza
Posts: 1
Joined: Fri Mar 31, 2006 7:15 pm

Newby

Post by kjmendoza »

I'm new, but exhausted. I saw an ad on TV for Requip which lead me to this website a few months back. Mother has suffered for years with RLS and now I have it too.
I am on Requip and got her on it as well. I shouldn't complain because I missed out on another genetic disease called Huntington's Disease from my father, but this is just as miserable. I am so tired some days I don't know if I can go on.
I did learn today that the Prozac probably doesn't help, but I can't go without it; I've tried. The alternative to prozac is becoming a hermit.
We have a red skin discoloration around our ankles, does anyone else with RLS have this symptom?

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear kjmendoza,

Welcome to the group!

If we had to choose between illness, the RLS is preferable to Huntington's disease. So very sorry that you have to have anything. My ex mother in law's family has Huntington's. Fortunately for her, her immediate family did not have major problems till in their 70s... cousins etc were affected in their 30s...


I do not experience any redness in the ankles related to RLS.

Yes the Prozac probably does not help ... if the Requip is keeping the RLS under control, it shouldn't be a problem. A different class of antidepressant that some with RLS have found helpful is Wellbutrin. Wellbutrin is thought to work by altering levels of the brain chemicals norepinephrine and dopamine. It is not chemically related to other antidepressants such as tricyclics (Elavil), MAO inhibitors (Nardil, Parnate), or serotonin re-uptake inhibitors (Paxil and Prozac).

Take care and ******Positive Thoughts****** Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

Lizzy

altering chemmical levels in brain

Post by Lizzy »

Hello Hazel,

I have been to this site before but it has been 2-3 years ago. You were mentioning altering chemical levels in the brain involving norepinephrine and dopamine. (Ten years ago today I was in a car accident and suffered a tramatic closed brain injury, in a coma for seven days and rehab for 6 weeks. I have had RLS since about 12 years old, altho no one knew what it was called back then.) To cut to the core, the brain injury magnified the problem 100 times over. Sometimes my leg has a mind of its own and I was thinking about Tourettes Syndrome and some of the muscle movement is similar without the vocalization of more advanced Tourettes. I went to a web site, looked up the symptoms and causes of Tourettes and it mentioned brain transmitters and levels of norepinephrine and dopamine. Has anyone ever talked about this before? When my legs start to "go" it is very rarely both legs at the same time and it is never the same leg two times in a row, even if it is a day between episodes. I find it very interesting that the literature and commercials always talk about it bothering people at night. It doesn't just hit me when I am trying to sleep, altho it is worse then. If you have a minute I would be interested in hearing from you. Thanks Lizzy

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

Post by ViewsAskew »

Hi Lizzy,

Until Hazel gets back, I can shed a little light on the timing issue. For the majority of RLSers, they only have it at night. It is related to iron and dopamine levels in the brain. According the the most current research I have heard, they think it's a regulation issue regarding the dopamine. When we need it, it's not there. Then, early in the morning, the body realizes there isn't any and turns it on full blast. That's why they think most of us have a much easier time sleeping between 4 and 11 AM - the dopamine is at its highest. By bedtime, its fallen dramatically - hence the symptoms in the evening.

However (and unfortunately), as you found, injury (or surgery) or other traumatic events can worsen the situtation. Additionally, a small percentage of us just seem to have worse RLS. For these people, RLS can be an all day, all night thing. But, as you noticed, it still is usually at its worst at night.

I mentioned iron. Iron appears to be at the heart of all cases of RLS. In the brains that have been autopsied, they have found that the receptor cells in the substantia nigra (also where Tourette's originates - and Parkinson's) have several problems. The are slightly misshapen, they don't "dock" as well, they there aren't as many of them, etc. Without the iron, things just can't function as they should. As I understand it, the iron issue is the key to all of this. The rest of the problems seem to primarily stem from the iron issue.

The similarities between Tourette's is probably at least partially because both involve similar neurotransmitters and both occur in the same part of the brain.

Welcome to the board!
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.

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Ann I continue to learn so much from you! Thanks a million! Ann, Lizzy, KMJ, Becat, thanks to all of you my quality of life has improved immensely, having a place to "hang out" with others who have problems like me!

:lol:

Years back when I knew things weren't quite right before computers, I spent some time reading about Tourettes and gave it some consideration! Dr told me he didn't think so... my daughter has mentioned tourettes when we would discuss our physical problems before I found out I had RLS.

I am back in the 4am-11am cycle... ugh... Not certain of others but I seem to have a brief period where I get a couple nights decent sleep, rest of the time it is the 4-11 shift! The couple nights are probably from sheer exhaustion! who knows!

************Positive Energy***************

Rowing Madly, Howling at the Moon with the others, Love Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

Anonymous

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 3:26 pm, edited 1 time in total.

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Thanks Em, it is a very interesting study ... thank you for posting the link... rowing fairly steady, Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

Ronda
Posts: 13
Joined: Sun May 28, 2006 11:19 am
Location: Cincinnati, OH

Post by Ronda »

Hi, I found this site on google. I discovered the words RLS though a tv commerical. Funny thing is I watch very little tv and saw an ad twice. I discovered I have (or may have) RLS though my doctor. I was diagnosed this past Friday and I am sorry to say I believe, after 2 years, we have figured out what I have. So I am new to this website and new to RLS. I actually have been crying the more I read and the more things are similar. It seems diet control is very important and it seems I do most of the don't on the list. I guess this will be a new beginning for me. Thank you in advance for this site. It will take me months to soak this in and you guys have given me many informative places to start.

kmm
Posts: 2
Joined: Sun Apr 30, 2006 10:17 pm
Location: GEORGIA

SINCE I WAS A LITTLE GIRL.....

Post by kmm »

Hi, I'm new to this web site. I guess I am looking for relief. At 8-10 years old I remember my mother and/or daddy rubbing my calves. My mom recently told me she thought I just "played too hard".

Later years, lots of tennis -- that hot asphalt seemed to bring on my restless, jumpy legs. After a hot day on the court I would take Tylenol with some relief.

Now I'm 57, my mom has just moved in with us a year ago. We are trying to help her, osteoporosis, arthritus, "with LOTS of pain" . I am working and having a girl come in 2 or 3 days a weeks to help her and stay with her while I work.

Almost every night those legs start jumping. I use "icy hot" and sonoma rub I get at the Chiropractor's office. (It seems to help some) I don't look forward to sleeping at night - and to try and not disturb my husband (who has been so kind during all of this) I'll go to the couch for half the night.

Where do you start for relief: Iprefer not to take medication because of what it can do to everything else - but boy do I have that "tired eye look".

Hot baths seem to work some before going to bed.

kmm :roll:

Guest

Post by Guest »

I am new to this board. I have had a mild case of rls for the past 9 years.I found out about this site by getting newsletters from the mayo clinic.I am so glad that I found this place for support.

ViewsAskew
Moderator
Posts: 16215
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Welcome to those who have just found us. I hope you do indeed find the support you need.

Kmm, hot baths do work for some. One lady does a hot bath followed by an icy cold spray. She swears by it! There are some suggestions here are there on the board. In the New to RLS section there are two sticky posts at the top. These offer some great links and information about RLS and about managing it. To my way of thinking, there are the perfect place to start.

Ronda, I hope they are tears of relief, even if they are sad, too. It is so empowering to find a home.

Lizzy, hope you stop by again. The board has changed a lot since 3 years ago.

KJ, no red discoloration here. RLS really is a horrible disorder, isn't it? Have you tried Wellbutrin? It is tolerated well by more RLSers than the other SSRIs and actually helps the RLS is some patients. Ultram is also noted to give a "lift" to some people and helps the RLS. Trazedone does not help RLS, but is reported not the bother it either.
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.

SweetAdeline
Posts: 4
Joined: Tue May 30, 2006 1:42 pm
Location: Amesbury, MA
Contact:

Post by SweetAdeline »

I sought this website out after dealing with intense aching once every two days, and a weird, indescribable numbness/tingling that felt as if it was coming from my bones EVERY DAY since I was about 6 years old. I was thought to have RLS secondary to a)pregnancy or b)iron deficiency and when both came back negative I was started on Requip. My legs have been giving me hell in other aspects as well (I am 18 years old and am developing painful spider veins on my ankles) and I wanted a place to talk with other who can relate to such an indescribable discomfort and pain. So, I searched for RLS discussion board...and I found you guys!

I'mnotlisa

Post by I'mnotlisa »

I guess it's my turn. I found you all last night in the middle of the night, while doing a search for RLS. I have known for a while that I have it but it has just this week turned severe and it really scares me. I am not being treated by a Dr for it ( yet ) but if it continues like this , I'm going to have to do something.

You all do sound SO SUPPORTIVE and kind and caring here ( and intelligent ) and I'm just thrilled to have found this place.

I am 48 yrs of age , and have been in menopause for about 3 yrs. Before that , I was in peri-menopause for a long time and bled VERY heavily for years ! My Ob/Gyn seemed TOTALLY unconcerned. It never occurred to me that I could become anemic , but I am ! I'm taking a liquid iron supplement , that I was told to double up on this past week. I'm wondering if that had anything to do with this worsening of RLS ?? I felt AWFUL all day today because of not getting ANY sleep last nite , due to the pain of my RLS. ( and in my arms , and I think a touch of it in my jaw too. :( )

Anyway , you all are inspirational. Glad I've found you.

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Welcome Sweet and Ima... glad you found us! It IS a great source of information and support, these wonderful people have helped me tremendously.

While my routine blood work did not indicate any iron problems, at my persistant harping the doctor finally tested my ferritin levels and it was at 5... it is recommended for those with RLS to try to get their ferritin levels to 50 or above, so I am on iron supplements 325 3x daily... with vit c (helps with absorbtion (I take mine with orange juice)... you have to space out the iron intake otherwise the body will just expell the excess...

I do not think Iron supplement is known to increase RLS sensations. However, there is a list of medications which are known to aggravate RLS. The list which includes many over the counter medications is found in the New to RLS thread.

The sticky posts in new to RLS are very helpful. The people here are very helpful and prompt in answering any questions you have.

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

Music can be made anywhere, is invisible and does not smell. --W H Auden

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