i'm new and desperate

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.
moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

i'm new and desperate

Post by moonlight »

Hi everyone :)

I'm new to the site, I have rls and am getting driven to insanity with it.It has got so bad that I sleep on the settee because I keep my husband awake at night with constantly moving my body for relief.It is not only in my legs it creeps through my body and does not allow me to sleep, the pain is unbearable , I spend more time walking about than I do in my bed.
It is not only when I go to bed but whenever I try to relax during the day.
Even while I am writing this post I am plagued with it.
I dont take any meds for it but it is getting so bad that I am going to the doctor for some advice, will post how I get on.

moonlight
sleep is not only a dream

User avatar
chefws
Posts: 60
Joined: Wed Apr 18, 2007 11:59 am

Post by chefws »

Welcome to the forum. The first thing I would do is spend as much time as you can on the 'Stickies' at the top of every thread. There are many things you can do to help reduce symptoms until you see a MD.
Bring to your doctor the "Mayo Clinic Algorithm for the treatment of RLS" it is in the stickies. Avoid alcohol, caffiene, nicotine, artificial sweetners. Taking a really hot shower followed by a really cold shower kinda shocks my symptoms away for a while. Avoid over the counter sleep meds, they usually make things worse.
I am not a doctor (but a bit smarter than the ones I've seen lately, or so it seems), so the best thing to do is to educate yourself on YOUR symptoms before you see your MD. Try to keep a log of when it occurs, how intense it is, and what you do to combat it. That will be very useful in treating it.
Another site I'd recommend is RLSHelp.org. There is a list of medications used to make it better, and a list of medications to avoid. Write these down or print them out so you will become familiar with them. Some MD's see the lack of sleep as depression, and try to treat it with the wrond sort of meds.
Good luck, and keep coming back!

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

M, First, welcome to our family. You will find good friends, good information, and stalwart support here. Second, and perhaps first, I am sorry that you have rls and things seem to be going poorly at the present. Hopefully your visit to the doc. will get you started on the path to better nights and days. That is our sincerest wish for all who visit here. Hopefully, your provider will be familiar with rls. Many are not. So, C's advice to educate yourself, make copies of the algorithm or other information to take with you is priceless. Do not be afraid to advocate for yourself. As requip and mirapex are are frequently prescribed, be sure you are familiar with the concept of "augmentation." Also, I think many here would advise against following the starter pack time progression (if you are prescribe requip/mirapex). There is an adage here that recommends taking the least amount necessary to control your symptoms. If you read some of the threads in the forums related to requip, mirapex, and augmentation you will get the idea. Often a blood panel is beneficial to make sure your rls is not due to an iron deficiency or some other secondary cause. That is usually a good place to start. Also, there are many foods and medications (i.e. caffiene) that can make rls worse. Life style changes can often help. You may want to see how those apply to you. There is information about this in the "stickies." Again, welcome and please let us know how you are doing. We learn so much from each other.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

I'm New and Desperate

Post by ctravel12 »

Hi Moonlight and welcome to this group. I am so sorry that your are having a rough time with your rls. How long have you had rls? Sleep deprivation is miserable. We all have been down that road and know exactly what you are going through. You have found a wonderful, caring and supportive group.

On this forum there is a sticky post called "Managing RLS" there is an excellent post from Mayo clinic algorithm. Please read it and if you are able to print it out please do so and bring it to your dr. Another good site to read is www.rls.help.org

Like Chef and Mark said it is so important to educate yourself as much as possible before seeing a dr. Read alot of the older and new posts as there is a fountain of knowledge out there. Remember your quality of life is so important and you need that back.

Please keep us posted on how you are doing. We really do care and know that you are not alone I know others will post and give you advise too. Also please let us know what your dr says. It is also important to take as much info regarding rls to your dr. Good luck and waiting to hear how it goes with you.
Charlene
Taking one day at a time

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

Please take the advice of those posting to you, read and educate yourself about RLS. Meds to take, Meds NOT to take!

I can NOT stress enough how important it is to read ALL you can about RLS and be educated BEFORE you see a DR, because so many of us have discovered that most (not all) Dr's seem to know very little about RLS, and like Chef said will think you are depressed instead of sleep deprived and will prescribe an antidepressant which will make RLS worse for MOSt RLSer's.

If you are taking any other meds for other things, please make sure you print off the list of meds known to make RLS worse, and make sure you are not taking any of these, almost all allergy meds will increase RLS,
Know that almost all OTC sleep meds, such as Tylenol PM or other PM meds and antihistimines will usually make your rls so much worse! Just knowing all these things you can save yourself alot of RLS misery!

Read about augumentation and rebound, knowing what meds will make those things happen.
Last but not least! If your Dr. is unwilling to listen and work with you, dont seel yourself short. Find another Dr.

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Post by Polar Bear »

All of the above is so true.. Here in N. Ireland my doc is great and admits (actually he volunteered) that I know more than him about rls.
And to prove a negative point... today in a local Sunday paper the doctor column was giving advice about rls, she did recommend seeing a doc for ropinorole, BUT she said it was understood that rls was caused by dehydration and the brain not switching off at bedtime !!! :x
God give me strength !!

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

M, I might also mention that we do meet to chat on Mondays at 10 CST. If you'd like to chat or just "watch," go to the rls.org site and choose "chat" from the left menu. We enjoy hearing from and talking to new faces.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

I'm New and Desperate

Post by ctravel12 »

Mark just wanted to say that I will be chatting at 7pm as az. does not change time so it will be 9 pm for you. Some people will be one or two hours difference from mine. I hope that makes sense. Hope to see everyone tomorrow night.
Charlene
Taking one day at a time

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

new and desperate

Post by moonlight »

Hi guys :D

Thanks for all your replies didn't realise that so many people out there suffer. Thanks for all the different advice it is all a bit confusing but i will try to make sense of it. I had a hellish night last night the pain was unreal got doctor appt next week. I didn't say in my first post that i suffer from depression,panic and anxiety but am not on ad's.
Can anyone tell me if propranolol and st johns wort (thats my med's) make rls worse. I don't think they do as its been like this befroe I started taking them.
So basically I'm between a rock and a hard place not much sleep ,2-3hrs, because of either or both rls / depression and anxiety. :!:

moonlight x :)
sleep is not only a dream

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Hi M, Sorry for the confusion. Sometime I forget, as I suspect others do, how bewildering the rls journey can be--even to those who have been around the block a few times. We just want to be so darned helpful. Again, sorry for that. For me, the best advice would simply be, between now and your dr. appt, is to read as much in the way of general information about rls as you can. The "sticky" managing your rls is probably quite good for that. If you are able to quickly get a copy of the book Restless Legs Syndrome by Mark J. Bucurfuhrer et al. it is a great source of information and you could browse the index to perhaps zero in on some questions. So, just read as much as you can so you can feel comfortable and relatively informed going into your appt. If you want take/make a copy of the algorithm for discussion or future reference. Since you already have a question about a medication and it's effect on rls then reading the section about meds which potentially (we are all different) can make rls worse maybe will have some immediate interest for you. I think you will get a sense of how familiar your doc is with rls. If not, just ask. If you like after your appt you can post again with some specifics about your appt/recommendations etc. and I'm sure you will get some more specific feedback. Won't guarantee that might also not be a little confusing as we all have had different experiences and, therefore, different opinions. But, generally you will begin to see a trend or concensus develop which I think you will eventually find helpful in making your own personal decision.

Don't know the nature of your depression, panic, and anxiety and if these are related to a specific condition. I do know that all of these can be "collateral damage" associated with rls and sleep deprivation. So, if you think these are related to your rls you should discuss that with your doc. While I never took Propranolol it was prescribed to me by an rls specialist (neurologist) for possible consideration. However, at the time, I was also in the midst of a significant panic/anxiety episode(s) directly related to rls. I posted a thread asking about Propranolol shortly after and my recollection was that, at the time, there were no responses. So, my guess is that there has not been a lot of experience with that med or, if so, no one posted. No personal experience with St. John's Wort but I'm sure someone else will chime in.

So, in perhaps fewer sentences, read some, ask questions of your doc (in a nice way) to try to gauge his "rls-ness," post again with perhaps some specics and/or questions from your appt, and if you have not already done so, try to put your depression, anxiety, and panic in perspective relative to your rls--one certainly can stem from the other.

I will again mention that we "chat" on Monday's (here in the U.S.). It's a good place to meet and get "real time" information on any questions. If not, your post(s) on this forum will not go unanswered.

Best wishes and best of luck.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Hi moonlight, and welcome.

I do have a bit of information on St. John's Wort. First of all, it is thought to boost dopamine a bit, so it is possibly helpful. And second, it interacts with just about every drug on the planet. :shock: The interaction is that it speeds up the metabolism of most drugs, and therefore lowers the concentration of the medicine in the bloodstream. I went into my doctor last January in excruciating pain and horrible augmentation from Requip, and I got a 1 hour lecture from my hysterical doctor about the evils of SJW.

Just so you know! If it works for your depression and anxiety, and you don't need a lot of other meds, then it's probably OK. But be sure and ask your doctor if you are on other medications.

I doubt that propranalol would make RLS worse, and I don't think it's on the list of known offenders.

I do hope you find some relief from the RLS.
Susan

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

i'm new and desperate

Post by moonlight »

Hi guys :)

Am off to the doc tomorrow have written everything down and will read it to her.
Since last post the rls has been real bad, if not when i go to bed ,in the evening when i'm trying to relax, ha ha, or it wakes me up in the middle of the night, either way no sleep.

I can't go on much longer with this amount of sleep i am totally exausted....but can't sleep its like a circle ,it never ends.

If its not the rls , its a racing mind with the depression

Answer to Mark, the depression, panic and anxiety attacks are not caused by rls . ive been ill for last 11 months and am getting treatment for it, getting there very very slowly, one step forward and ten back.

I have read up on info about rls so i hope this helps at the appt tomorrow.

will let you know how i get on

moonlight x :P
sleep is not only a dream

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

I'm new and desperate

Post by ctravel12 »

Hi Moonlight. Please let us know what the dr says. I hope that you have some good news to tell us. Also hope that you are able to get something to help you sleep. Sleep deprivation is miserable and believe me I have been down that road more times than I want to remember.

Sending good thoughts your way.
Charlene
Taking one day at a time

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Moonlight - not sure what illness you have (no need to tell if you don't want) - but just had a little red flag go up when I read your post. It's possible that something about what you are going through is either causing or worsening the RLS.

Not that you needed more to think about, but thought it might have some bearing. If not, please ignore.

Hope the appointment goes well.
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.

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

i'm new and desperate

Post by moonlight »

Hi

Think i am confusing you , sorry, the illness i speak of is the depression and have been getting treatment for 11 months.
When the rls is bad , i get panicky because of it , hope that makes sense, its too late for my brain to work well.

mirage x
sleep is not only a dream

Post Reply