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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.
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johnto6
Posts: 14
Joined: Tue Sep 05, 2006 1:32 am
Location: Krum, TX

New to This Discussion Board

Post by johnto6 »

Hi. I'm very glad to have found this. I never realized there were such good resources for information and support. No one understands this. I've thought for years that this was psychosomatic, because it only happens when I'm still and thinking about it....dreading it is the better term. My symptoms only occur in the front part of my feet...and never both at the same time, thank God. I am 53 years old, fit, active, not overweight. I had a physical this summer at the Cooper Clinic in Dallas, and the dr. there says I'm fine. I told him about this, and he told me to wear Rockport Shoes. It was so frustrating. My regular doctor prescribed requip, 2 mg at bedtime, and it lessened the symptoms, and I found that if I take two of those, one about every 12 hours, the symptoms are greatly reduced, and I can sleep. The problem is that the requip makes me very sleepy during the afternoon, and I find myself fighting the urge to doze off while I'm talking to clients. I have been taking Lisinopril for about 10 years for blood pressure, and Becat sent me some information that it might be contributing to the RLS, so I've stopped taking it for the last 7 days, but so far the RLS has not diminished. That's about all the information about me. I would like to know the thoughts of others....especially that mine is just in my feet....isn't that strange? Is it strange that it's never both feet at the same time? I do drink coffee all morning, and I have an afternoon cup as well. Is this something I really need to stop? Thank you for supporting each other so well, and thank you just for being here. I feel connected to someone finally. My family thinks I'm just crazy and getting old, which is still probably true. One thing more: I've read some terrible posts from others who suffer with this much more than I do, and many of those are from young people. I really feel for all of you, and you will be in my prayers from now on. I've only been experiencing this for about 10 years. It came on suddenly without any warning, and it hasn't gotten worse or better over time. The Requip helps, but I'd prefer not to have to take that for the rest of my life. Ok, enough from me. Thanks in advance for reading this and for your thoughts and responses.

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

new to this discussion board

Post by ctravel12 »

Hi John, welcome to the group. A good forum to go to is the sticky post "new rls Managing Rls". It gives alot of good info. You mention that you drink alot of coffee, which can trigger the rls with the caffeine. Read this sticky post, I am sure you will find it very informative. Keep posting and also read alot of the posts (old and new) as there is alot of knowledge from them. I am sure another member from this group will add some things too. I have never had the rls just in the front of my feet. I have it in both legs, but now have it under control which is a wonderful feeling and hope it continues. It is possible that you can have rls at different times as when mine was at its worse I would have it in the left leg and then switch to the right one. I used to take Requip but just at night time and made me very sleepy but did not like the side effects so am now on clonazepam .5mg at night. Good luck with you and keep in contact and let us know how you are doing.
Charlene
Taking one day at a time

ViewsAskew
Moderator
Posts: 16607
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Hi John,

Mine is rarely in the same place at the same time. Well, I should say it never starts in two places - always just my left side first. Sometimes my right joins in, but it is worse on one or the other. Many of us have noted that. Some people have never had it on both sides - just one! My sister? She only had it on the left for years. Last year is switched. Now it's only on the right.

Coffee is worth cutting out to see what happens. Also, as I'm sure our lovely Becat said, make sure you get your ferritin levels tested. If they are low, you could reduce, or even eliminate symptoms.

Welcome! (Not meaning to be chipper about your problems, just glad you found us)
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.

Walking After Midnight
Posts: 649
Joined: Sun Aug 21, 2005 5:23 am
Location: Portage, Indiana
Contact:

Post by Walking After Midnight »

John...you said your symptoms only start when you are still and start thinking about it and you thought it might be psycosomatic...(however you spell that). I can relate.
Before I was on meds, I'd be lying in bed and it would hit me...Hey, my legs are ok tonight. Sure enough as soon as that thought was there, they RLS was there. So I drive myself crazy...Were my legs subtlely bothering me and it triggered the thought? or did the thought actually trigger the RLS?
It's enough to make you crazy. But either way the RLS was there and there was nothing I could do about it.

Welcome to the board.

Randy

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

Post by becat »

Hi John,
I'm so glad you finally made it on the board. :D
I see that you've been welcomed by some of great members already. Yeah, I told you there was good support around this board. AND, might I Add, that this is not in your head, we are are just slightly different enough to make it hard for the docs....LOL :?
I have to say it made me a bit nervous that you stopped your heart meds.., I hope you talked to your doctor first. After my husband's open heart surgery last year I would just have had a fit, if I were your wife and you did that. :D Lucky you, I'm not up to fighting the traffic to Krum tonight, or I'd come over myself and shame you good! :lol: I told you it would be interesting to read the information, OMG scared me to pieces when I read that in your post.
For anyone taking this medication what I found was the side effects page from the maker of the drug.
http://www.lisinopril.com/lisinopril_sideeffects/

I think most of us, many times, have thought ok this is just not real, it's hard not to think that after you've been told there is nothing wrong so many times. That is why I love this board and these people......We make each other as sane. We're not alone and we know, understand, and care about those that have to live with this in their life. I'm glad your here John.
Hugs, Love, and the moon to all,
Lynne

johnto6
Posts: 14
Joined: Tue Sep 05, 2006 1:32 am
Location: Krum, TX

Reply to Lynne, Charlene, Randy, and Ann

Post by johnto6 »

thank you all for replying to my first post. Lynn, to make you feel better, I have been monitoring my blood pressure every day since I stopped taking the Lisinopril, and ....I'll check it now to be sure.....my blood pressure right now is 131/84....maybe slightly elevated but not bad at all. By the way, I've noticed no decrease in the RLS since I've stopped taking it, so I will probably resume, because with the Lisinopril, my blood pressure normally runs abour 115/75. It's funny isn't it how you can sit in your recliner comfortably and then the thought of your feet or legs going crazy just seems to bring it on. I've been taking one Requip at night if I've been up on my feet or physically active all day. If I've been at my desk, however, I usually have to take one at midday, which makes me groggy all afternoon. So, sometimes I take one Requip, and sometimes I take two in 24 hours. Oh, and each tablet is 2 mg. I wonder if this is ok, or if I should be more consistent in the dosage. I would appreciate your thoughts. I anxiously check my computer every evening for input from you guys. thanks again for that. And Randy, what you described is exactly what I go through. My doctor also said it wasn't in my head, but his advice was to wear Rockport shoes. I think those are the ones with the velcro straps. I don't think I'm quite ready for those. Thanks to you all, and I wish all of you a restful peaceful night. I'll check back tomorrow. I really appreciate having someone to talk to about this who actually understands. Ann and Charlene, I will try to curb the coffee consumption. Maybe I can start with eliminating my afternoon cup. Thanks again.

johnto6
Posts: 14
Joined: Tue Sep 05, 2006 1:32 am
Location: Krum, TX

Post by johnto6 »

Posted: Fri Sep 22, 2006 2:51 am Post subject: Reply to Lynne, Charlene, Randy, and Ann

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thank you all for replying to my first post. Lynn, to make you feel better, I have been monitoring my blood pressure every day since I stopped taking the Lisinopril, and ....I'll check it now to be sure.....my blood pressure right now is 131/84....maybe slightly elevated but not bad at all. By the way, I've noticed no decrease in the RLS since I've stopped taking it, so I will probably resume, because with the Lisinopril, my blood pressure normally runs abour 115/75. It's funny isn't it how you can sit in your recliner comfortably and then the thought of your feet or legs going crazy just seems to bring it on. I've been taking one Requip at night if I've been up on my feet or physically active all day. If I've been at my desk, however, I usually have to take one at midday, which makes me groggy all afternoon. So, sometimes I take one Requip, and sometimes I take two in 24 hours. Oh, and each tablet is 2 mg. I wonder if this is ok, or if I should be more consistent in the dosage. I would appreciate your thoughts. I anxiously check my computer every evening for input from you guys. thanks again for that. And Randy, what you described is exactly what I go through. My doctor also said it wasn't in my head, but his advice was to wear Rockport shoes. I think those are the ones with the velcro straps. I don't think I'm quite ready for those. Thanks to you all, and I wish all of you a restful peaceful night. I'll check back tomorrow. I really appreciate having someone to talk to about this who actually understands. Ann and Charlene, I will try to curb the coffee consumption. Maybe I can start with eliminating my afternoon cup. Thanks again.

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

Post by becat »

Well John all I can say is thank you for not making me drive to Krum this weekend to get you back on your scheduled meds....I played nurse last week and did an awful job, couldn't get my charge to eat a thing. So your lucky I'm not coming over to make you take those meds....I hate to have to hold you down and force them on you, but I will! LOL :D
I think that daytime sleepiness is part of the worst of learning how to cope with some of the meds we take. I'm not happy with some of my meds right now and that is just one of the reasons, who can really afford to take a nap everyday, not to mention that then your later to sleep that night. Ugh, an endless cycle.
John I'm sure if you read around the board you'd find that many people take the dopamine medications in stages through out the day, but that puts you at 4 mg a day if you take 2 mg pills. That is a higher dose, just my thoughts, uneducated as they are.
I think we need to find you an educated doctor in the area. Go back to my home page for the Dallas area, there are more than just my doc in the area, but his whole staff is pretty amazing.
I Hope the weather is ok around your house tonight, I just checked and I think we're ok, so I'm going to try the bedtime routine and pray to sleep.
I'll rest better hearing from you tonight John. LOL (winking and smiling).
Lynne

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