Morning all!
Well for some unknown reason my RLS has reared it's ugly head, it started on Saturday night, just out of the blue. My husband has been sleeping on the couch since then because it is so bad. He said that my legs are "thumping" the bed every few seconds.
I went to my GP years ago, about 12 years I think, explained my symptoms and he told me that I had ELS (erratic leg syndrome) and gave me quinine and sent me on my way... Blah! Quinine is just about the nastiest thing but it worked for a while and then when I started exercising and losing weight the symptoms went away. Well since then I have had some minor issues, long drives, long plane rides, stress, things like that but they have always been minor and gone away.
Not this time, not sure what is happening but they are bad bad bad this time and they are not going away. I know that I have a low ferritin level due to some blood work that I had a while back for another issue. I guess I need to get that checked again and maybe up my iron intake again.
This is very frustrating. I don't want to go on the med's that you see advertised on TV if I don't have to and I don't want to go back on the quinine, I am not sure that did a whole lot of good in the first place.
So does anyone have any suggestions on where to start? I have read lots of the postings on here but am still confused about how to start figuring out what my triggers may be... it has to be something to make it come back like this... I have not slept much in almost 4 days... something has to give and soon.
Sleeplesssusan
Newbie to this forum but not RLS
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sleeplesssusan
- Posts: 5
- Joined: Tue Oct 23, 2007 2:54 pm
- Location: Indiana
Newbie to this forum but not RLS
Looking for answers!
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Polar Bear
- Moderator
- Posts: 8827
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
SS, First off, sorry that your rls has brought you here but welcome to the family. Lots of good information and support here.
If you have not read the "sticky" "A good place to start:Managing your RLS (3rd from the top) this might give you some good general information. You will also see a link to the Mayo Clinic Algorithm which is a guideline for medication progression in the treatment of RLS. Parts of your post ("thumping legs") sound like you may be describing PLMD (Periodic Leg Movement Disorder) while parts sound like RLS. Have you ever had a sleep study...useful in diagnosing PLMD but not RLS. Many with PLMD have RLS but some have one and not the others. A bit of debate as to whether both are part of RLS. In any event, both sometime respond to the same medications such as Requip but sometimes different meds are helpful for each. The Managing RLS section lists things that often make RLS worse such as caffeine or alcohol. You may want to review those to see if any apply to you. Have you made any diet changes or started any new medication lately? Some medications also make RLS worse. Rechecking the iron would be a good idea. I know you stated your RLS has been constant lately. Sometime the medication Sinemet is helpful if your symptoms occur infrequently such as once or twice a week. Klonopin is also a freqently prescribed first line medication. Doesn't stop the RLS/PLM but can make you drowsy and sleepy enough that you can sleep through them. I think Quinine is no longer prescribed for RLS/PLM. An addage here that is worth remembering is that "often what works for one does not work for another." So, treatment is sometime trial and error but the algorithm does provide some method to the madness.
Turning into a long post. Again, if you have not, read the Managing RLS sticky. If your GP is not familiar with RLS taking the Algorithm to your next visit may be helpful. Do your have anyone in the area familiar with RLS/PLM? Sometime you need to call around and ask. Many here use the PCP, a neurologist, or sleep disorder specialist. The important thing is to find someone knowledgeable and/or someone who is willing to work with you in treating your condition. I'm sure others will add, or subtract, from this post. Again, welcome and best of luck. Keep us posted on your progress. We all learn from each other.
If you have not read the "sticky" "A good place to start:Managing your RLS (3rd from the top) this might give you some good general information. You will also see a link to the Mayo Clinic Algorithm which is a guideline for medication progression in the treatment of RLS. Parts of your post ("thumping legs") sound like you may be describing PLMD (Periodic Leg Movement Disorder) while parts sound like RLS. Have you ever had a sleep study...useful in diagnosing PLMD but not RLS. Many with PLMD have RLS but some have one and not the others. A bit of debate as to whether both are part of RLS. In any event, both sometime respond to the same medications such as Requip but sometimes different meds are helpful for each. The Managing RLS section lists things that often make RLS worse such as caffeine or alcohol. You may want to review those to see if any apply to you. Have you made any diet changes or started any new medication lately? Some medications also make RLS worse. Rechecking the iron would be a good idea. I know you stated your RLS has been constant lately. Sometime the medication Sinemet is helpful if your symptoms occur infrequently such as once or twice a week. Klonopin is also a freqently prescribed first line medication. Doesn't stop the RLS/PLM but can make you drowsy and sleepy enough that you can sleep through them. I think Quinine is no longer prescribed for RLS/PLM. An addage here that is worth remembering is that "often what works for one does not work for another." So, treatment is sometime trial and error but the algorithm does provide some method to the madness.
Turning into a long post. Again, if you have not, read the Managing RLS sticky. If your GP is not familiar with RLS taking the Algorithm to your next visit may be helpful. Do your have anyone in the area familiar with RLS/PLM? Sometime you need to call around and ask. Many here use the PCP, a neurologist, or sleep disorder specialist. The important thing is to find someone knowledgeable and/or someone who is willing to work with you in treating your condition. I'm sure others will add, or subtract, from this post. Again, welcome and best of luck. Keep us posted on your progress. We all learn from each other.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Hi Susan
Welcome to the forum. I personally would start with the ferritin level, and work on getting it up above 50. You may be one of the lucky ones who don't need any further treatment.
Then I would look at triggers that can make the RLS worse - caffeine, alcohol, medications like most antidepressants, antinauseants, antihistamines, and see which ones you can cut out, or switch to meds that don't usually aggravate RLS.
You can also look in the "Non-Pharmaceutical" section of the message board for things that can help, like applying heat or cold, soaking in a hot bath with epson salts, etc.
After that, you could consider medication. Take a look at the Mayo Clinic Algorithm to learn about treatments involving medication. Just remember one basic rule: Take the lowest possible amount of medication that works and stay at that dose. Doctors tend to way overprescribe the dopamine agonists like Requip and Mirapex, and that can lead to horrible side effects. If you get a starter pack, stay at the lowest dose that gives you relief, even if the starter pack or the doctors tell you to increase the dose. There are lots of possible treatment options, and it can take a long time to get the best fit.
Good luck with it and please keep us posted.
Welcome to the forum. I personally would start with the ferritin level, and work on getting it up above 50. You may be one of the lucky ones who don't need any further treatment.
Then I would look at triggers that can make the RLS worse - caffeine, alcohol, medications like most antidepressants, antinauseants, antihistamines, and see which ones you can cut out, or switch to meds that don't usually aggravate RLS.
You can also look in the "Non-Pharmaceutical" section of the message board for things that can help, like applying heat or cold, soaking in a hot bath with epson salts, etc.
After that, you could consider medication. Take a look at the Mayo Clinic Algorithm to learn about treatments involving medication. Just remember one basic rule: Take the lowest possible amount of medication that works and stay at that dose. Doctors tend to way overprescribe the dopamine agonists like Requip and Mirapex, and that can lead to horrible side effects. If you get a starter pack, stay at the lowest dose that gives you relief, even if the starter pack or the doctors tell you to increase the dose. There are lots of possible treatment options, and it can take a long time to get the best fit.
Good luck with it and please keep us posted.
Susan
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sleeplesssusan
- Posts: 5
- Joined: Tue Oct 23, 2007 2:54 pm
- Location: Indiana
Morning all!
Thanks for all of the info and replies, they are truly and greatly appreciated!
I will start looking into the suggested reading material/sites that were listed and get to work right away.
I do not know yet if my current GP knows much if anything about RLS, my old doctor, the one that told me I had ELS is now retired and we have all been transfered to a new family practice. I have been to this doctor one time so far and he seemed like one that will listen and work with me on issues but it is too soon to tell. I will most likely start with him, see what he has to say and take it from there as my insurance would require me to see him first I believe, so it makes sense to at least start with him. He is much younger then my previous doctor so that may be a good thing... he may know more or at least be willing to work through this with me.
The thing that scares me the most is that I was dormant for a long time, other then an occasional flair up on a long plane or car ride, etc. You know, the things that most of us avoid or hate to do because we know that there is a good chance that the RLS will show up when we really don't want it to. Anyway, back to what I was saying, if I remember correctly, I never had the leg thumping just the creepy crawlies and painful spasm that would last all night thing going on... I think I have morphed into the PLMD on top of the RLS, is that common?
I have never done a sleep study but will talk to the doctor about it.
I read a ton of info on this site yesterday and tried a few things, I went and got some B-12 and added that to the vitamins that I already take, I stopped at about two cups of coffee instead of my normal amount, I took a hot bath last night and also took some valerian before bed. I think that it did help because I did sleep through the night... and so did my husband.
I have not really changed anything with the exception that I did start working out at the gym again last week after slacking a bit over the summer. Nothing too much, just some time on the treadmill and the elliptical machine... maybe a half hour total.
Thanks again, I am going to go and do some more reading!
Have a great day all!
SS
Thanks for all of the info and replies, they are truly and greatly appreciated!
I will start looking into the suggested reading material/sites that were listed and get to work right away.
I do not know yet if my current GP knows much if anything about RLS, my old doctor, the one that told me I had ELS is now retired and we have all been transfered to a new family practice. I have been to this doctor one time so far and he seemed like one that will listen and work with me on issues but it is too soon to tell. I will most likely start with him, see what he has to say and take it from there as my insurance would require me to see him first I believe, so it makes sense to at least start with him. He is much younger then my previous doctor so that may be a good thing... he may know more or at least be willing to work through this with me.
The thing that scares me the most is that I was dormant for a long time, other then an occasional flair up on a long plane or car ride, etc. You know, the things that most of us avoid or hate to do because we know that there is a good chance that the RLS will show up when we really don't want it to. Anyway, back to what I was saying, if I remember correctly, I never had the leg thumping just the creepy crawlies and painful spasm that would last all night thing going on... I think I have morphed into the PLMD on top of the RLS, is that common?
I have never done a sleep study but will talk to the doctor about it.
I read a ton of info on this site yesterday and tried a few things, I went and got some B-12 and added that to the vitamins that I already take, I stopped at about two cups of coffee instead of my normal amount, I took a hot bath last night and also took some valerian before bed. I think that it did help because I did sleep through the night... and so did my husband.
I have not really changed anything with the exception that I did start working out at the gym again last week after slacking a bit over the summer. Nothing too much, just some time on the treadmill and the elliptical machine... maybe a half hour total.
Thanks again, I am going to go and do some more reading!
Have a great day all!
SS
Looking for answers!
SS, Glad you found the info helpful and that you got some needed relief. You can develope PLMD along the way with RLS or you can have either independently. I did not develope PLMD until after an unpleasant bout with Requip. I think, perhaps, maybe, or quite certainly that if I had known about and been able to follow the advice Susan posted to you about Requip that I perhaps, maybe, etc. would not have developed the PLMD. Her advice is good for all medications but exceptionally good Mirapex and Requip.
If your doc. seems like the kind of person that will listen and work with you (particularly after you learn more about your rls and, perhaps, PLMD, that is a big plus. I think you will find that after a bit of time doing your own research and info on this forum that you will be in good position to knowledgeably advocate for yourself--which is sometime also a plus if not a must.
Regarding PLMD, I think it is perhaps premature to think you may have morphed (a good term) into that condition. But, your comments suggest it may be an area about which to read some posts, post additional question, etc., see if you think it applies to you, and discuss this and options (such as a sleep study) with you doc.
I like coffee more than I should but have never been a huge coffee drinker. However, I notice that even a single cup can aggravate my rls. Perhaps during your bad spell you might consider ditching the caffine altogether and see if that helps. Don't think it's the cause of the upswing but it wouldn't hurt and may be something you would want or need to do in the future.
You mentioned getting back on an excercise program recently. For many of us, too much or the wrong kind of exercise can aggravate rls. You have to find the right time to do this (usually not too close to bedtime) and the right amount as well as intensitity. It could be after being off your program for an extended period of time that your legs are sending you a message. You may want to back off the excercise in terms of time and intensity for a bit or a more gradual return and see if that helps. Of all the things you mentioned, the excercise does seem to coincide with you increased symptoms. The hot bath may also have soothed the aching muscles.
Hopefully, your increased symptoms are related to some lifestyle change you can make or a low ferritin level (secondary rls) which if treated can be quite beneficial. If you go back to the infrequent rls symptoms (intermittent rls) such as plane, car trips, or an occasional bedtime do some research on Sinemet which should not make you drowsy. I have used it for for the theatre.
If you are interested, there is a book by Buchfuhrer, Hening, and Kushida called Restless Legs Syndrome. Dr. Buchfuhrer writes a question and answer feature on the rls.org main site, which you might also like to visit. Anyway, the book is probably one of the most up-to-date and comprehensive available. You can find it at Amazon and many other book stores.
Lastly, and again if you are interested, we do a live chat on Mondays at 10 pm CST time. You can ask questions, get advice or just join the the variety of entertaining, friendly potpourri of discussion. Just go to the main rls.org site and select chat from the left menu. You can go there anytime but Monday's time is the best to find others there.
Again, sorry for writing a book. I'm glad you had a good night and hopefully things will continue to go well for you. Best Wishes.
M.
If your doc. seems like the kind of person that will listen and work with you (particularly after you learn more about your rls and, perhaps, PLMD, that is a big plus. I think you will find that after a bit of time doing your own research and info on this forum that you will be in good position to knowledgeably advocate for yourself--which is sometime also a plus if not a must.
Regarding PLMD, I think it is perhaps premature to think you may have morphed (a good term) into that condition. But, your comments suggest it may be an area about which to read some posts, post additional question, etc., see if you think it applies to you, and discuss this and options (such as a sleep study) with you doc.
I like coffee more than I should but have never been a huge coffee drinker. However, I notice that even a single cup can aggravate my rls. Perhaps during your bad spell you might consider ditching the caffine altogether and see if that helps. Don't think it's the cause of the upswing but it wouldn't hurt and may be something you would want or need to do in the future.
You mentioned getting back on an excercise program recently. For many of us, too much or the wrong kind of exercise can aggravate rls. You have to find the right time to do this (usually not too close to bedtime) and the right amount as well as intensitity. It could be after being off your program for an extended period of time that your legs are sending you a message. You may want to back off the excercise in terms of time and intensity for a bit or a more gradual return and see if that helps. Of all the things you mentioned, the excercise does seem to coincide with you increased symptoms. The hot bath may also have soothed the aching muscles.
Hopefully, your increased symptoms are related to some lifestyle change you can make or a low ferritin level (secondary rls) which if treated can be quite beneficial. If you go back to the infrequent rls symptoms (intermittent rls) such as plane, car trips, or an occasional bedtime do some research on Sinemet which should not make you drowsy. I have used it for for the theatre.
If you are interested, there is a book by Buchfuhrer, Hening, and Kushida called Restless Legs Syndrome. Dr. Buchfuhrer writes a question and answer feature on the rls.org main site, which you might also like to visit. Anyway, the book is probably one of the most up-to-date and comprehensive available. You can find it at Amazon and many other book stores.
Lastly, and again if you are interested, we do a live chat on Mondays at 10 pm CST time. You can ask questions, get advice or just join the the variety of entertaining, friendly potpourri of discussion. Just go to the main rls.org site and select chat from the left menu. You can go there anytime but Monday's time is the best to find others there.
Again, sorry for writing a book. I'm glad you had a good night and hopefully things will continue to go well for you. Best Wishes.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
Newbie to this forum but not RLS
Hi Susan and welcome to this group. So sorry that you are having a rough time with your rls; however you have found a wonderful and supportive group. When your dr told you to take Quinine that is basically for leg cramps and not rls.
You received some wonderful advise from these members. Another good site to read is www.rlshelp.org
One other thing to consider is to see if there is a support group for rls in your area. I am a group leader for my area and the people are so appreciative and you can learn from each other.
I am glad that you are reading alot of the posts as there is a fountain of knowledge out there. It is a good feeling to know that you are not alone and we are definitely here for you. If you ever just want to talk, vent, scream or whatever, we are here for you at anytime.
Also like Mark said that we do have a chat group that meets on Monday nights. I live in Az. and get on at 7 pm (we do not change time) I know some parts of Indiana do not either;whether that includes where you live I do not know. Like right now before the time changes if I get on at 7 pm it is 9 pm your time.
I hope that this has been of some help to you. I know you said that you do not want to take meds and hope that you do not have to. One to thing to remember is what works for one may not work for another one.
Please keep us posted on how you are doing as we really do care.
You received some wonderful advise from these members. Another good site to read is www.rlshelp.org
One other thing to consider is to see if there is a support group for rls in your area. I am a group leader for my area and the people are so appreciative and you can learn from each other.
I am glad that you are reading alot of the posts as there is a fountain of knowledge out there. It is a good feeling to know that you are not alone and we are definitely here for you. If you ever just want to talk, vent, scream or whatever, we are here for you at anytime.
Also like Mark said that we do have a chat group that meets on Monday nights. I live in Az. and get on at 7 pm (we do not change time) I know some parts of Indiana do not either;whether that includes where you live I do not know. Like right now before the time changes if I get on at 7 pm it is 9 pm your time.
I hope that this has been of some help to you. I know you said that you do not want to take meds and hope that you do not have to. One to thing to remember is what works for one may not work for another one.
Please keep us posted on how you are doing as we really do care.
Charlene
Taking one day at a time
Taking one day at a time
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sleeplesssusan
- Posts: 5
- Joined: Tue Oct 23, 2007 2:54 pm
- Location: Indiana
Hi All,
Thanks again for the support and information, it really is so valuable!
I had another good night last night I think, either that or my husband and I are so tired from not sleeping for so long that we are just passed out and sleep through it...LOL. But seriously, I take Pilates classes two times a week, have for over a year now, Wed's and Sat's and last nights class was wonderful. I have been taking valerian each night and have added the B-12 during the day, lowering my caffeine intake, etc so I think that it is all helping.
I did talk to my husband the other day and asked him if the thumping had really started last weekend or was I doing it before then. He told me that I had been doing it at least a week before that and it had gotten progressively worse and he was ready to say something to me when it got so bad that the pain woke me up... so he did not have to say a word, I knew what was going on.
I am going to call and make an appointment with my doctor, see if I can get some tests done and take it from there. For now the lifestyle changes are helping a bit so I am grateful for all of the suggestions.
I do go to the gym on Mon's and Thur's and will try and lower the level there, although my level is not that high...LOL.
How long has everyone here been dealing with RLS... since childhood or did it come on later in life? I had it really bad with both of my pregnancies but it went away, then came back with a vengeance in my early 30's. My mom has it also but can control hers with vitamins and such...
Have a great day all!
Thanks again for the support and information, it really is so valuable!
I had another good night last night I think, either that or my husband and I are so tired from not sleeping for so long that we are just passed out and sleep through it...LOL. But seriously, I take Pilates classes two times a week, have for over a year now, Wed's and Sat's and last nights class was wonderful. I have been taking valerian each night and have added the B-12 during the day, lowering my caffeine intake, etc so I think that it is all helping.
I did talk to my husband the other day and asked him if the thumping had really started last weekend or was I doing it before then. He told me that I had been doing it at least a week before that and it had gotten progressively worse and he was ready to say something to me when it got so bad that the pain woke me up... so he did not have to say a word, I knew what was going on.
I am going to call and make an appointment with my doctor, see if I can get some tests done and take it from there. For now the lifestyle changes are helping a bit so I am grateful for all of the suggestions.
I do go to the gym on Mon's and Thur's and will try and lower the level there, although my level is not that high...LOL.
How long has everyone here been dealing with RLS... since childhood or did it come on later in life? I had it really bad with both of my pregnancies but it went away, then came back with a vengeance in my early 30's. My mom has it also but can control hers with vitamins and such...
Have a great day all!
Looking for answers!
Newbie to this forum but not Rls
Hi Susan I am so glad that you got some decent sleep last night. I hope that it continues for you.
As for myself I have had rls for 20+ yrs but so far it is under control and hope that it stays that way.
Keep us posted on what the dr has to say. I am glad that we have been able to be of some help to you.
Sending good thoughts your way and lots of hugs tool
(((((((((((((((hugs)))))))))))))))))))))
As for myself I have had rls for 20+ yrs but so far it is under control and hope that it stays that way.
Keep us posted on what the dr has to say. I am glad that we have been able to be of some help to you.
Sending good thoughts your way and lots of hugs tool
(((((((((((((((hugs)))))))))))))))))))))
Charlene
Taking one day at a time
Taking one day at a time
SS, Likewise glade that you are doing better and hope your next dr. visit will even take you further along the path to relief. I was first formally diagnosed about 15 years ago but have had rls for at least 35 years (that I can remember). Again, best of luck. Keep us posted.
M.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.