Hello all,
I'm 28 and have had symptoms for at least 15 years, probably longer. A doctor once told me it's probably RLS, but I've never done any tests or medication or anything.
I get pains in my thighs when I lie or sit still in the evenings. I used to have it every once in a while, but it's become more and more frequent in the last couple of years. I started writing it down a couple of months ago and realised that I have it almost every night that I'm home. The severity changes, sometimes it's just an annoying buzzing that goes away when I walk and sometimes it's so bad that the only thing that helps is a contstant sewing machine motion or actually jumping up and down.
On most days it's quite managable, but I was on a plane for 12 hours a few days ago and I thought I was going stir crazy.
I also have PCOS and while not overweight, my hormones are completely out of whack. I'm currently on medication for that as well as birth control.
I've also had my iron levels checked a few times because of the PCOS and the levels are normal.
I do notice that when I drink alcohol for a few days in a row, it seems to worsen RLS in that it appears everyday and usually more severe. When I hardly drink any I get maybe a day or two of no symptoms a week. I've never noticed any problems sleeping, only falling asleep as I seem to have to move every 2 seconds.
What I'm wondering though, is there any medication that could only be taken when the symptoms are really bad?
I'm taking enough as it is and I don't want to take another pill daily if it's not necessary. At least for as long as I can manage. As far as I'm aware any treatment will not stop progression of RLS just relieve the symptoms. Is that correct?
newbie
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ViewsAskew
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Hi WM...and welcome to the board. I hope you find what you need here.
To me, the best place to start is in the "sticky" posts at the top of each section of the board. In the one on managing RLS, you'll find both information on the algorithm (and a link to it), that helps you identify the "best" meds to take. I'm pretty sure it will say that for intermittant RLS, a good one is Sinemet (carbidopa/levadopa). It's not good for everyday, but for less then 4 days a week, it's wonderful.
You've also noticed that alcohol can be a cause, so many of us have eliminated it, as well as coffee. Others have different triggers, from ice cream to asparatame to wheat, so that may be something to watch and test, too.
You've had your blood tested - do you know if it was for ferritin levels or anemia? An anemia test is good -- need to ensure you're not anemic -- but a ferritin test is also important and not often done. There is more about ferritin in many posts around the board. Ferritin (low) is a common issue is many with RLS. But, never take iron supplements until you know if the ferritin is low. You can supplement your ferritin through both supplements and food. I prefer a liquid formula made from greens and things than tablets, but it's also expensive.
You were right - nothing stops the progression of RLS. And, not everyone progresses. My mom never has. My sister hasn't yet. So, maybe with diet, exercise, vitamins, etc, you won't, either. After reading the sticky in the New to RLS section, read the one in the Non-Pharma section if you get a chance. Or some of the posts. You'll find many things that people have done to help their RLS that didn't require drugs.
Again, welcome. I am sure that others will be around soon and join in with their ideas.
To me, the best place to start is in the "sticky" posts at the top of each section of the board. In the one on managing RLS, you'll find both information on the algorithm (and a link to it), that helps you identify the "best" meds to take. I'm pretty sure it will say that for intermittant RLS, a good one is Sinemet (carbidopa/levadopa). It's not good for everyday, but for less then 4 days a week, it's wonderful.
You've also noticed that alcohol can be a cause, so many of us have eliminated it, as well as coffee. Others have different triggers, from ice cream to asparatame to wheat, so that may be something to watch and test, too.
You've had your blood tested - do you know if it was for ferritin levels or anemia? An anemia test is good -- need to ensure you're not anemic -- but a ferritin test is also important and not often done. There is more about ferritin in many posts around the board. Ferritin (low) is a common issue is many with RLS. But, never take iron supplements until you know if the ferritin is low. You can supplement your ferritin through both supplements and food. I prefer a liquid formula made from greens and things than tablets, but it's also expensive.
You were right - nothing stops the progression of RLS. And, not everyone progresses. My mom never has. My sister hasn't yet. So, maybe with diet, exercise, vitamins, etc, you won't, either. After reading the sticky in the New to RLS section, read the one in the Non-Pharma section if you get a chance. Or some of the posts. You'll find many things that people have done to help their RLS that didn't require drugs.
Again, welcome. I am sure that others will be around soon and join in with their ideas.
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.
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.
Hi Wm and welcome to this group. I am sorry for you what you are going through. I am glad that you found us but sorry that you have rls.
Like Ann said the forum you are in now go to the sticky post called "Managing RLS" as there is a fountain of information there and regarding the Mayo Clinic Algorithm please read it and if you are able to print it out, please do so and bring it to your dr. Also there is a good sitcky post (same forum) the first one called "useful websites" as one of the members Jumpy Owl wrote the layman's term on algorithm (you have to scroll down about halfway and it is in a yellow or light colored box).
Another good site to read is www.rlshelp.org.
If you are interested in chatting with anyone, we have a chat room going on Monday nights at 7pm mountain time. Do not know where you live, but would love to have you join us. Just type in rls.org and it will have a link there for the chat room.
I hope that this has been of some help to you and please keep us posted on how you are doing. You have found a wonderful and supportive group.
Like Ann said the forum you are in now go to the sticky post called "Managing RLS" as there is a fountain of information there and regarding the Mayo Clinic Algorithm please read it and if you are able to print it out, please do so and bring it to your dr. Also there is a good sitcky post (same forum) the first one called "useful websites" as one of the members Jumpy Owl wrote the layman's term on algorithm (you have to scroll down about halfway and it is in a yellow or light colored box).
Another good site to read is www.rlshelp.org.
If you are interested in chatting with anyone, we have a chat room going on Monday nights at 7pm mountain time. Do not know where you live, but would love to have you join us. Just type in rls.org and it will have a link there for the chat room.
I hope that this has been of some help to you and please keep us posted on how you are doing. You have found a wonderful and supportive group.
Charlene
Taking one day at a time
Taking one day at a time
Re: newbie
wm wrote:What I'm wondering though, is there any medication that could only be taken when the symptoms are really bad?
Anne already gave you one suggestion Carbidopa/Levadopa another choice might be a sleeping pill. I take Ambien (Zolpidem) when I know I'm going to have a bad night or I've had a couple bad nights in row. My RLS has a very specific pattern and I pretty much know when to expect it.
Unfortunately the process of finding the right treament for you can be hit or miss. The algorithm (in my signature line below) is a great place to start. I have reduced my symptoms significantly with diet and vitamin supplements. I only take a sleeping pill about 8 nights per month.
. Just wanted to welcome you to the family and hope the advice will help you get some relief. Best wishes.
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mackjergens
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Just a caution about taking sleeping pills. I tried that once and my rls is/was so strong that I still could not stay in bed, so I had to ramble around the house being half sedated by sleeping pill. It can be dangerous trying to keep moving/walking after taking sleeping pill. This might not affect anyone else, but it is something to be aware of.
I've done lots of reading and I'm really glad I found this place. I have a much better understanding of the whole RLS thing. As I mentioned above I also have PCOS and treatment for that is a lot of hit and miss too. Basically trying until you find something that works for you. After many years I'm on a combination that seems to be okay.
I just have no energy to go through all that again for the RLS stuff. I'm going to pay attention what I ate when the symptoms get worse, but it seems, at least with alcohol it takes a few days.
I did have some more bloodwork done last week for PCOS and asked them to check my iron and ferritin levels. I don't have an appointment until the end of Feb, but I got a copy of the lab results. They are within normal range, though on the lower side. Ferritin was 50 and should be between 15 to 180 ug/l, Iron was 15, should be 10-33 umol/L, TIBC 69, should be 37 to 72 umol/L and SAT 0.22, should be 0.20 to 0.55.
Do you think I should be taking supplements or do you only recommend it if it's actually below the normal range?
I just have no energy to go through all that again for the RLS stuff. I'm going to pay attention what I ate when the symptoms get worse, but it seems, at least with alcohol it takes a few days.
I did have some more bloodwork done last week for PCOS and asked them to check my iron and ferritin levels. I don't have an appointment until the end of Feb, but I got a copy of the lab results. They are within normal range, though on the lower side. Ferritin was 50 and should be between 15 to 180 ug/l, Iron was 15, should be 10-33 umol/L, TIBC 69, should be 37 to 72 umol/L and SAT 0.22, should be 0.20 to 0.55.
Do you think I should be taking supplements or do you only recommend it if it's actually below the normal range?
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ViewsAskew
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- Joined: Thu Oct 28, 2004 6:37 am
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Ferritin levels need to be a minimum of 45-50 when you have RLS, so you're there. I'd watch it, though, in case it gets lower. I can't say I've heard that increasing it over that helps, but maybe someone else will know or have more information.
I am so glad you've found helpful information/support on the site. Nice to hear
.
I am so glad you've found helpful information/support on the site. Nice to hear
.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.
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.
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cornelia
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ViewsAskew
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Wow!!!!! I hadn't heard that. I wonder if any of us could ever get that high without infusions...
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.
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.
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greenakers
- Posts: 1
- Joined: Sat Jan 05, 2008 6:38 pm
- Location: Colorado
newbie to rls.org
I recently decided to reach out and check about things that I have. Since I am now disabled and can't get around that much I spend a lot of my time on this laptop. I'm 48 and I have a list of things that are wrong with me. Besides the RLS I have neropothy (from my diabeties) arthritus, high blood pressure, diabeties. My health has gone down severly in the last year and my RLS has become worse. I take requip along with several other drugs for all my problems, but it doesn't seem to help much. My legs kick out during the day and night and the RLS with the neropothy I am now in a wheelchair. I guess like the rest of you it would be nice to get some good sleep. I just wanted to touch base with everyone and I'll be watching the boards. I would say that it is good to know that someone else deals with what I have, but it's not good that any of us have to deal with this. Maybe we can help each other, I would love to find some help myself.
G, Welcome to the board and the rls family. So sorry that you have rls as well as the other health problems. Anyone of those would be more than enuf. Your description of your legs kick out sounds a lot like periodic leg movement disorder (plmd). Is that something that you have also? Hope the requip is helping some. Is there at all a possibility that any of the other meds you take could be making your rls worse? Anything happen in the last year that would be related to your rls becoming worse? I know what you mean about the sleep. Many here would like to get some good Zzzzz if ony occasionally. We have a group that Chats on Monday at 9 pm EST at the rls.org site. Log on to the site and select chat room from the left menu. For most it's a painless process but some have a bit of difficulty. We have lots of great people here and lots of good info on the site so feel free to do a lot of reading also. I'm sure others will be here to say hello. Again G, sorry you have rls but glad you have found your way here. Best wishes.
M.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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SquirmingSusan
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So sorry you are having so many health problems. I hope you find what you need here.