Thank you for your site - its nice to know I'm not alone. I'm new to this site. I don't know when I developed rls, at least 5 years now (thought it was circulatory), but it seems to be getting worse over the last year. I remember my dad never being able to sit long, but not knowing why.
I am embarrassed to go to movie, theatre, planes...because inevitably I'm kicking my legs and drifting off to sleep. Yesterday, this happened at the afternoon movies - going to an afternoon vs evening movie makes no difference for me and is not better.
What kind of a doctor do you go to for help (I'm in Canada)? I went to my doctor and she just asked if I wanted drugs. I've seen the posts about iron, but other than being anemic after surgery a year ago, my iron levels are supposedly fine. Should I bother going to a doctor to get it diagnosed or does it matter?
worsening rls-help
Hi, Suze, this is Celia
I'm sure you'll get a big welcome from Jan, who is our lovely unofficial "mother hen", as soon as she sees your note. In the meantime, since I'm Canadian too, I thought I would say hi. My advice to you is to get a footstool and keep those legs of yours from pressing into your chair, then sit and read as much of this website as you can!
Start with the non-pharmaceutical therapies for some great hints on changing your diet and adding dietary supplements.
I have not gone to my GP yet though that is definitely where I will start when/if my RLS gets worse and I think that you will find that course of action echoed throughout this site. It's important to go armed with information and you will find lots of that here, plus many website links provided. Sounds like your doctor needs to be educated.
Finally, whatever drugs your doctor might recommend, come back here to this site and research others' experiences in the Pharmaceutical thread! My heart goes out to some of the people here who have struggled with incorrect medications and dosages. Uninformed doctors love to go the "trial and error" route, with you as the white mouse. I would especially urge you to follow Nadia's story.
I'm sure you'll get a big welcome from Jan, who is our lovely unofficial "mother hen", as soon as she sees your note. In the meantime, since I'm Canadian too, I thought I would say hi. My advice to you is to get a footstool and keep those legs of yours from pressing into your chair, then sit and read as much of this website as you can!
Start with the non-pharmaceutical therapies for some great hints on changing your diet and adding dietary supplements.
I have not gone to my GP yet though that is definitely where I will start when/if my RLS gets worse and I think that you will find that course of action echoed throughout this site. It's important to go armed with information and you will find lots of that here, plus many website links provided. Sounds like your doctor needs to be educated.
Finally, whatever drugs your doctor might recommend, come back here to this site and research others' experiences in the Pharmaceutical thread! My heart goes out to some of the people here who have struggled with incorrect medications and dosages. Uninformed doctors love to go the "trial and error" route, with you as the white mouse. I would especially urge you to follow Nadia's story.
Celia
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Re: worsening rls-help
suze40 wrote: Yesterday, this happened at the afternoon movies - going to an afternoon vs evening movie makes no difference for me and is not better.
What kind of a doctor do you go to for help (I'm in Canada)? Should I bother going to a doctor to get it diagnosed or does it matter?
Celia had great advice. I think that reading the old posts is one of the best things you can do. If you're like me, you'll get lots of "Ah Ha's" when you do. You mentioned that afternoon or evening doesn't matter; it doesn't to many of us. Relaxing and sitting for long periods can bother some of us at any time of day.
You also asked if you should bother to go to a doctor for diagnosis. IMHO, it depends
. Can you manage it now? Does it keep you awake? Do you get quality sleep (not tired or fatigued the next day)? Are you unable to do things that affect your quality of life? I didn't go for 20 years because it wasn't bad enough to interfere with my life. When I realized I was fatigued and unable to do my work well, I decided I needed to do something. But, before you do, know as much as you can. Your doctor may not know anything, or may be misinformed. The more you know, the better the treatment you can make sure you get (and you deserve it). Some of us get OK help from our general practictioners, but many of us have to go to a neurologist that specialized in RLS.
Welcome!
Ann
Welcome Suzie
Hi Suzie, it's Jan
I'm so glad you've found us. And you've already met two of our helpful members, Celia and Ann. You know, I've been just where you are: Unable to sit through a movie, unable to ride in a car for very long, and, sometimes, unable to even sit in a chair in my own home for more than 10 minutes. You're absolutely, right--it is embarassing! We all are different and choose different paths to help us through our journey with RLS. I have chosen medication. I have had RLS for at least 20 years, and I don't think I could make it without mediation. BUT YOU HAVE TO FIND A DOCTOR WHO IS WILING TO LISTEN AND WHO KNOWS ABOUT RLS!! I'm fortunate--I have a very good neurologist whom I've been seeing for at least 15 years. Remember, you HIRE doctors!! They sometimes forget that!
Suzy, I'm so glad you found us. I hope you decide to stay because we have so many wonderful people on this site ready, willing and able to help you. We have members who are great at researching, members with some knowledge of medication and non-pharmaceutical techniques that might help you, and the rest of us, like me, have our experience to share with you. All of us have ears to listen and shoulders to lean on when you feel down or just want to vent. This is a safe place, Suzy. WE WILL LISTEN TO YOU!! We are a family, and you've found a home!
Jan
I'm so glad you've found us. And you've already met two of our helpful members, Celia and Ann. You know, I've been just where you are: Unable to sit through a movie, unable to ride in a car for very long, and, sometimes, unable to even sit in a chair in my own home for more than 10 minutes. You're absolutely, right--it is embarassing! We all are different and choose different paths to help us through our journey with RLS. I have chosen medication. I have had RLS for at least 20 years, and I don't think I could make it without mediation. BUT YOU HAVE TO FIND A DOCTOR WHO IS WILING TO LISTEN AND WHO KNOWS ABOUT RLS!! I'm fortunate--I have a very good neurologist whom I've been seeing for at least 15 years. Remember, you HIRE doctors!! They sometimes forget that!
Suzy, I'm so glad you found us. I hope you decide to stay because we have so many wonderful people on this site ready, willing and able to help you. We have members who are great at researching, members with some knowledge of medication and non-pharmaceutical techniques that might help you, and the rest of us, like me, have our experience to share with you. All of us have ears to listen and shoulders to lean on when you feel down or just want to vent. This is a safe place, Suzy. WE WILL LISTEN TO YOU!! We are a family, and you've found a home!
Jan
No one is alone who had friends.
Hello, Suze and welcome.
So sorry that your RLS is bothering you more and more. I'm one of the people here who is still managing to muddle through my RLS without meds, because for me, RLS is a nightmare while I'm awake, but does not keep me from at least a decent amount of sleep. In fact, the only real "cure" for my symptoms is usually going to bed and to sleep! (I know that many of my friends here would give their eye-teeth for such a "solution".
But the reason I joined this group a few months ago was because my RLS symptoms (which I've had at least 21 years, since I KNOW I had it when I was 18) all the sudden escalated in frequency and duration. I figured that the more I knew about my condition (I only learned the name and diagnosed myself about three years ago), the better I'd be able to make whatever "next move" was necessary. I'm glad I came here. As others have mentioned, there's lots to be gleaned from the forum here, and I feel that I will know who to go to and what to ask about when the time comes.
The good news, though, in my opinion, and I HOPE in your case as well, has been that although I've had a week at a time or more where my RLS is 24/7, and some really intense RLS attacks, I've found that just because this is a "progressive" condition, doesn't mean that every bit of progress is permanent. I had bad RLS last night and one night earlier this week, but I was up late and riding home fromThanksgiving long after my bedtime with limited RLS discomfort. And tonight I have only a little bit of symptoms, even though I'm very tired (that's usually a "trigger" for me) and may even be coming down with a flu bug. So it got worse, but it hasn't stayed at the worst level. I hope that you'll find some fluctuations "in your favor", too.
Also, it caught my eye that you said you thought the sensations were "circulatory".... because that's what I'd been telling my husband for YEARS before I heard by accident about RLS!!! And in doing some family research, I've found people like your father, who also had/have RLS... but only some of them knew/know what it is (though now EVERYONE in my family knows about it, because I told them!!!!)
At any rate, I wish you well as we all muddle our way through this experience. And again, welcome to the group.
Sara
So sorry that your RLS is bothering you more and more. I'm one of the people here who is still managing to muddle through my RLS without meds, because for me, RLS is a nightmare while I'm awake, but does not keep me from at least a decent amount of sleep. In fact, the only real "cure" for my symptoms is usually going to bed and to sleep! (I know that many of my friends here would give their eye-teeth for such a "solution".
But the reason I joined this group a few months ago was because my RLS symptoms (which I've had at least 21 years, since I KNOW I had it when I was 18) all the sudden escalated in frequency and duration. I figured that the more I knew about my condition (I only learned the name and diagnosed myself about three years ago), the better I'd be able to make whatever "next move" was necessary. I'm glad I came here. As others have mentioned, there's lots to be gleaned from the forum here, and I feel that I will know who to go to and what to ask about when the time comes.
The good news, though, in my opinion, and I HOPE in your case as well, has been that although I've had a week at a time or more where my RLS is 24/7, and some really intense RLS attacks, I've found that just because this is a "progressive" condition, doesn't mean that every bit of progress is permanent. I had bad RLS last night and one night earlier this week, but I was up late and riding home fromThanksgiving long after my bedtime with limited RLS discomfort. And tonight I have only a little bit of symptoms, even though I'm very tired (that's usually a "trigger" for me) and may even be coming down with a flu bug. So it got worse, but it hasn't stayed at the worst level. I hope that you'll find some fluctuations "in your favor", too.
Also, it caught my eye that you said you thought the sensations were "circulatory".... because that's what I'd been telling my husband for YEARS before I heard by accident about RLS!!! And in doing some family research, I've found people like your father, who also had/have RLS... but only some of them knew/know what it is (though now EVERYONE in my family knows about it, because I told them!!!!)
At any rate, I wish you well as we all muddle our way through this experience. And again, welcome to the group.
Sara
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suze40
Thank you all for your warm welcome to the site! I'll continue reading the previous posts for information. Its amazing how rls affects everyone differently and in different degrees. I used to get upset with my father for never being able to sit entirely through anything, like my graduation, recitals,...but now I understand what he was going through.
New to RLS
I'm new to this site but have had RLS since early childhood. The drug I've taken for the last 10 yrs was found completely by accident. I take Ultram(Tramadol). My Dr. seems to think the longer I can stay off the Parkinsons drugs the better I'll be since this drug has less side affects than the others. My dr. wasn't very abreast on RLS but has worked with me and kept all the literature I brought her. Now she researches it herself. There is no possible way I could handle this without medication, believe me, I've tried. I've been awake for a week straight, trying to sleep standing up and also trying all the "old" fixes that worked when I was younger (running, hot hot baths, stretching). I have found that popping a few pills a day keeps my sanity and my quality of life, that makes it well worth it to me. When I was younger (now 38) the above methods worked but as I've aged, it's gotten much worse and is also in my arms. My friends and family often referred to my "crazy legs" when I couldn't quit moving. Oddly enough, when my best friend went to college for nursing, she was the first to believe I wasn't crazy. Good luck with holding off on the drugs, but know, there's nothing wrong with wanting to sustain your quality of life even if that means taking a pill or two.