Not exactly new, but figured this was the best spot to start

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lexique
Posts: 39
Joined: Fri Jun 20, 2008 2:47 am
Location: Canada

Not exactly new, but figured this was the best spot to start

Post by lexique »

I have a feeling this is going to turn into a bit of an essay so I will apologize for that in advance.

I believe that I have had RLS most of my life. I can recall the typical growing pains and having my mother have to message my legs every night when I was a child so that I could attempt to sleep. And I can recall once I hit puberty for a couple of days every month I would pace and fidget and pace and fidget and get in trouble from many a teacher for not sitting still in class and for falling asleep in class when I did sit still. I also found out a couple of years ago that my grandmother also struggled with RLS and has taken various sleeping pills for many years. I was first heard the term RLS when I saw a different doctor while mine was on holidays after a car accident a little over three years ago. Unfortunately this doctor, the only one who I’ve found who takes RLS seriously, moved provinces shortly after I saw her that first time.

I have never posted much and even hesitate to post tonight as I know there are so many of you much worse off than I am. At this point I can not conceive of living 30 or 40 + years like this, but I also take strength in knowing that if you can do it that I can as well. Or at least that I choose to believe that to stay strong and keep fighting. I’ve been having a rough time both with the RLS and life in general the past few weeks and I feel like I am slipping back into the depression that plagued me when I was a teenager. Right now I am still at a point mentally where I have no intention of giving up and I know from past experiences that I need to act now. I don’t know how much the lack of sleep vs. life in general is contributing to how I am feeling but I have finally reached my last straw with dealing with things on my own and am ready to try almost anything, including medications if I need to. I have a doctors appointment on Monday, unfortunately, or maybe fortunately, who knows, with someone I have never seen before, and who knows nothing of my medical history.

I want to go into my appointment prepared with all of the information that I might need both for myself and for him which is why I am posting here tonight. I’m not sure how much to post as far as my RLS story goes but for the past three years since I heard the term RLS I have been doing everything I can to educate myself and the doctors that I have met with, and there have definitely been a few of those (mostly as I have moved several times during the past couple of years).

It took a few months to start to figure things out but for well over a year I managed, thanks mostly to the advice found on this site, with diet, exercise (yoga daily and walking/jogging or swimming depending on my access to a pool) iron therapy and alternate ‘distraction’ type activities with moderate success. I had always been taking iron due to anemia but after all the reading I did on this site my doctor agreed to further increase my daily dose. Since increasing to 600 mg ferrous sulfate (30 mg elemental iron) twice daily I have gotten as high as 127, though that was only once and normally my highest is in the 50’s, which is actually pretty good. Problem is that two months later, without changing anything that should affect my iron I can drop down into the teens or twenties and my legs are at it again. After tracking my symptoms and my ferritin levels there was a stretch of symptom free nights the month before and two months after the time when my levels were at that 100 + range, but I haven’t been able to get it up to there since. With watching my iron and having options to distract myself I had nights where I would struggle to sleep but I could handle them since I knew that in a day or two my management techniques would be successful again and that I would be able to get a day or two of good nights sleeps before my legs flared up again.

For the last six months or so, and especially for the past six weeks I have used every technique that had previously worked and I am still fighting against my legs almost every night with no relief. And completely new the last two or three weeks, and what has me more concerned, when I have been driving with work there have been days that the creepy crawlies start to sneak in. So far I have been able reduce them to a tolerable level with shifting in my seat and gentle wiggling of my legs but I am worried that that may not be enough, just like what’s happened at night. I have never previously had an issue with driving or with any other daytime activities, or inactivity.

Thanks to anyone who actually made it to the end of this essay, it’s even longer than I thought it would be. Any ideas, especially non-pharm ones would be really appreciated, but any insight into meds would be appreciated too. I want to know where I stand and I want to be able to ask the doc intelligent questions on Monday. Thanks!

Betty/WV
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Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Hi Lexique: Yes, I read your whole post. It reminds me of the first time I posted here, several years ago. I just found this site by accident and what a positive accident it was. Because I have been helped so much by reading what others have to say.

It was in the middle of the night when I first posted here. My legs were so crazy that I had to stand up at the computer and with tears flowing I poured out my heart, I was at the end of my rope. And I received such kind and helpful replies from people who understood where I was coming from. Up until that time I don't think anyone understood what I had went through for years. I really don't know how I functioned, and I don't think I did very well.

Anyway, I now take Mirapex .25 mg. twice a day and Klonopin .5 mg at bed time. And at least I sleep better than an hour or two a night. Before I had tried everything, went to many doctors etc. etc.

I will tell you of things that have helped me. First read everything you can find on RLS. And this site is a wonderful place to start. There is a fellow named Zack that posts here often and at the bottom of his posts is a link to MayoClinic Algorythm ( hope I spelled that right.) You can click on that and copy it. I took a copy to my doctor. Wonderful information on RLS.

Also there is a Doctor B. (name is Buchfuhrer) and if there is an expert on RLS, he is it. I have 2 of his books "Restless Legs Syndrome Coping With Your Sleepless Nights." and "Clinical Management of Restless Legs Syndrome" These books are a must for anyone with RLS. I got mine from Amazon.Com. They aren't very expensive. My grandaughter also has RLS, and I got her these books.

Without medication I was a wreck, like I said I was at the end of my rope. I couldn't take it anymore. And I think I had RLS for 30 or 40 years. Everyone with RLS is different, with their symptoms and what helps them. But also we are the same in so many ways. Before medication the only relief I would get would be to run the bathtub full of hot water and sit in it. So don't be afraid of taking medication. Its just like when you have high blood pressure, you have to take meds to control it. And to have any measure or quality of life we with RLS, I would say most of the time, end up taking meds. You just need to find a doctor that will work with you. And I hope this one you are going to Monday works for you.

I know others will reply to your post, and probably have good suggestions for you. I'm really just a beginner here. Some that come here are very knowledgeable on the subject of RLS.

I wish you the best, and please let us know how your doctors visit turns out. I'll be watching for your posts.

Take care.

BETTY/WV

P.S. Most doctors know very little about RLS so you have to be your own advocate. And learn as much as you can about the subject.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Post by Polar Bear »

Hi Lexique

Please never hesitate to post, and never be concerned about how long your post may be, and ask all the questions that you wish. We are all sufferers and want to help each other.

I am a 24/7 sufferer and having spent many years without doc treatment, I now have no hesitation in taking what meds are required to provide some management of symptoms. Insomnia is an issue but at least it is insomnia usually without rls symptoms. (I am on various meds for other conditions most of which have insomnia as a side effect).

I believe that statistics show that rls sufferers have a higher rate of depression that the average population.

Educating yourself is vital because most docs are unfamiliar in the management and treatment of rls and hopefully your new doc will be willing to learn from you.

If you go to the link in my signature it will take you to the Mayo Clinic Algorithm which is what me and my (very willing) doc use for pharm treatment purposes. Take a copy with you on Monday and it will open up paths of discussion, also to leave with doc for your file.

Excellent reading is Dr B's book which I got from Amazon. I have also on occasion taken this book to the doc when it is well marked with 'post-its' for discussion.

I can understand tha you may be reluctant to start on the pharm treatment. I can only speak from my own point of view and say that life without the rls meds will not ever exist.

good luck
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

lexique
Posts: 39
Joined: Fri Jun 20, 2008 2:47 am
Location: Canada

Post by lexique »

Thank you Betty and Polar Bear for taking the time to read and reply. There are nights that I come on hear just to read posts that give me hope and there are often posts of yours that are on that list.

Shortly after I posted I got called into work and am just nicely getting home now. Thank goodness. I think I am one of the only ones that hopes for calls in the middle of the night as it gives me the perfect distraction, at least for a couple of hours. (I am an EMT and at least thus far whenever I am in the back with a patient, regardless of what their complaint is, how long I am sitting with them, or how bad a night I was having before the call I can forget about everything in my life and focus on them. It is the best relief that I have found).

I have definately seen the Mayo Algorhytm. I have given it to many a doctor over the past couple of years and already have a copy printed off for this guy on Monday. I have the first book that you mentioned Betty but haven't looked for the second one yet. I will add it to my list of things to follow up on. The other book that I have, and that was my lifesaving manual initially is Jill Grunzel's. It gave me a great resource for distraction ideas aside from those I found on the site and it was something that I could take with me to show the doctors, along with the algorhythm.

As far as the pharm options, I've never been one to take medications for much anything. I have had bad reactions to a few medications and unexpected side effects to lots of others which is the largest part of my apprehention. The other issue that I worry about is how the med and or the side effect might affect my ability to work. As I mentioned earlier I am an EMT so I need to be able to jump up "wide eyed and bushy tailed" as my grand mother used to say, at all hours of the day or night. When I am rested and thinking clearly I LOVE my job and the last thing I want is for something to interfere with my ability to do my job. Here again the support and the strength that I see in so many people here comes in to play. Knowing that there are others who have been down this road, and who are still trialing different treatment options and not giving up hope is what I need to have faith that there is a solution, or at least something that will help, out there for me too.

The bathtub used to work wonderfully Betty, but now even thinking about it makes the creepy crawlies start to itch back in again. Most nights music or walking is my escape. I think the neighbors wonder a little when I do laps around the block at 0200 but that is for them to wonder and me to know. Unfortunately I haven't found anything that allows me to fall asleep while redicing the RLS, and for the past six weeks or so neither the walking or the music is havign the effect that it used to. I still get some relief, but not enough that I can sit and get things done while burning the midnight oil. I had also had great success with changing into shorts as it seems that on a really bad night anything touching my calves sends me up the wall. Cross words, sodoku, etc. and occasionally a good book were also helpful. I've recently taken to walking around the house with a clip board so that I can do my puzzels and pace at the same time. What a site that would be if anyone could see me. :)

Anyway ladies, thank you again for leaving me something to read this morning. I am going to crawl into my bed with my boys (read my two cats - they are my lifesavers many a night) and grab an hour or so before I head back into work. THANKS!

Scarlett46
Posts: 107
Joined: Wed Jun 04, 2008 6:43 pm
Location: Michigan

Post by Scarlett46 »

Hello Lexique, and welcome!
Reading your first post sounded very much like my first post. I felt almost "bad" for posting and "complaining" about my symptoms which seemed so unbearable at times, when there are so many others here that suffer more than I do. But we all suffer, and it doesn't matter how much or how often, we have this in common. I have not posted much here, and am definitely no expert, but I have found that reading the experiences of others (and there are some pretty knowledgable people here too) helps a lot!

I am a firefighter/MFR, so I totally get where you are coming from - not wanting meds to affect your job. And the excitement and heat of the moment while on a call definitely is a distraction from RLS. Although I have not been working recently... I think I may have finally found the right solution for my RLS... I've bucked up and seen the doctor about my depression, and take Wellbutrin - which has helped some, but I found that I still didn't feel quite like myself. I now take .75mg of Requip before bedtime, and the daytime sleepiness and RLS are mostly gone, I’m sleeping much better at night, and I can feel my mood starting to lift as well! I am only a volunteer, and I never really managed to wake up to the tones at night before... but I actually suspect that I might wake up better now that I’m sleeping more normally…

Good luck! I am sorry that I don't really have any great advice... and nobody has the "magic bullet" solution for RLS... But I felt the need to reply - because I can relate so well to your post!
"After all... Tomorrow is another day!"

Polar Bear
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Post by Polar Bear »

Lexique..... the bathtub also sets off my symptoms, I cannot bear to have anything on my lap for any length of time. It is said that stroking a pet (cat) is therapeutic - not if it is on my lap, it's not !!

The thought of wearing tights on my legs makes me want to scream.

Distraction techniques don't do a lot for me, I love crosswords, sudoko and reading, but during the night it is done s l o w l y as I pace the room. with occasional 'stomps', its like the elephant march from Jungle Book movie :roll:

I am up and down and in and out of bed like a yo-yo, thankfully now being retired there is no issue of clock watching.

Thank goodness for the computer to pass some time, while pacing standing still !!

None of this is unlikely to be of any useful information to you but just wanted you to know that you are not alone. All over the world we are walking the floors. If we are not up because of rls symptoms, we are up because of insomnia.

Betty: your PS is so on the ball..... we must be our own advocate, continually. We must not be afraid to question and discuss with our doc.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Post by ViewsAskew »

It never fails to amaze me that so many of us are concerned our RLS isn't as bad as the next person's and we shouldn't be complaining. Myself included.

As long as it affects you in some way, it's worth complaining about. Any interference in sleep, work, or enjoyment of life is awful. I've also had to learn - from many of you - that me talking about what is happening to me can be helpful, whether I think I should be complaining or not. That said, I still resist wanting to share; I'd rather help.

I'd have probably done myself in by now if I didn't have meds. Like so many of us, I waited until my life just didn't work anymore before I got help. And, help hasn't always been as helpful as I'd prefer.

I can say that over 6 or 7 years of trying many doctors and medications, that there are huge differences in both. RLS may be somewhat the same in each of us, but the treatment is highly individual. Drugs that work for me may make you miserable and vice versa.

In hindsight, the most important thing anyone can do for us is to help us explore options until we find the one that works the best for us. When my first doc gave me something and it causes problems, he didn't offer to try something else and I didn't ask. I thought I had to take it.

Now I know better. There are many options. They may prevent you from being able to get up in the night, they may not. They may help your outlook, they may not. They may resolve the RLS, they may not. It's only through trial that you'll find what works for you.

Finding the doctor who will help you dance that dance is important....and very hard, particularly if not many doctors are in your area or you do not have choices.

I've stopped looking for a local doctor and decided to fly to California from Chicago. I'm no longer wasting my time trying to educate people who freak out at the type of meds I need. It costs me a lot to pay without using insurance, but it's worth it.

In the end, you may find you need to do the same. Dr.Jaques Montplasir is an RLS specialist in Montreal. You may be closer to a US doctor, I don't know. You don't have to use one of them, just know that if you need to, you have that option.
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.

badnights
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Post by badnights »

As others have said and you know by now anyway, different meds affect each of us differently.

For me, Requip/ropinirole, the evil drug, made me augment. It was the first one I was given and I started augmenting the first week. I quickly learned what augmentation was through my research but it took me much longer to teach my doctor, during which time he had me increasing my dose, until I finally said no.

I couldn't tolerate Mirapex/pramipexole because it turned me into a zombie.

I was on gabapentin + codeine for a long time (well, 10 months) and that was unpleasant not only because it didn't really still my symptoms but because I was vaguely doped out all the time, not sharp, and it was hard to tell if it was the drugs or just being tired until I finally got off them.

At the end of my 10 months on gaba+codeine, I basically went off the meds (what I was given - a wee bit of oxycodone - was woefully inadequate) and found that my condition was vastly, almost unimaginably worse than before I started using drugs for it. It got worse way faster than a normal progression, I think, and I keep wondering, did the nasty augmentation cause permanent damage? Or, because I had a rather sudden need for more meds near the end of my 10 months, was it the gabapentin that caused permanent damage?

I like the hydromorphone I'm on now. I have a brain again! One small problem is that it has a paradoxical alerting effect on me and I find after it kicks in I want to stay up and study and work. Also, I am already (<4 months) getting tolerant to it, and it has not solved all my sleep issues: I still cannot fall into a deep sleep. I'm really tired all the time and still can't work a full day 5 days a week. I worry that I will never be normal again.

Please if any medcation has a bad side effect, stop it and replace it with something else ASAP. I do hope your doctor is willing to learn about RLS - or preferably knows how to treat it already! And I hope you're simple not refractory, and can get on with your life happy and well-rested!

ViewsAskew
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Post by ViewsAskew »

What Beth said about stopping something if it causes problems? That's essential. Similar to Beth, my RLS is exponentially worse than it was when I started. There is no logical reason according to the doctors, but it's true. I believe it to be because I augmented for soooooo long without someone realizing the problem. I will always wonder if I'd stopped the drug the day my RLS got worse if I'd ever have found this forum or needed it.
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.

lexique
Posts: 39
Joined: Fri Jun 20, 2008 2:47 am
Location: Canada

Post by lexique »

I am hating my computer and my internet this afternoon. This is now the third time I have attempted to reply to everyones posts. I had initially written a reply and thanks to each of you, but I am quickly running out of patience with my computer so am going to try and get this off quickly before the computer glitches again.

Scarlett, what you said about the excitement of the call carrying me through is SO true. Even when it is a 'benign' type call sitting in the back completely takes the RLS away, at least for a couple of hours. With any luck you will continue to head in a forward direction, feeling more and more like yourself and returning to everything that you love to do soon! And expert or not you are right on when you say that it helps to know there are others out there who understand the pacing and struggling to find comfort and relief.

Polar Bear, my cats definately learnt quickly that laying on my legs is a bad idea. On the rare occasion that they forget it doesn't take long before they get tossed off the couch so usually they laze on the top of the couch, right above my shoulder or on the floor near to my feet. Since my partner and I split just over a year ago having them around the house has been my salvation and some days the only thing that has kept me going. It doesn't seem to matter how tired I am or how low my mood has gotten, they have a way of doing something that can make me smile at least for a few minutes.

Anne, I've read your posts about heading out to Cali to see Dr. B and remember thinking how couragous that seemed when I first read it. Thank you for sharing your story! I want to give the doctor in town a try and see how things go with him before I look to traveling the kind of distances that would be required to see a 'specialist' but will definately keep that option open in the back of my mind. I have added Dr. Montplasir's name to my list of resources so that I have it handy should I decide to persue that option. Thanks!

And Beth, even though we are all different and different drugs work for each of us it is nice to hear about what others have found that works and that didn't. I hate that we have to learn from others hardships with this condition and the meds we use to manage it but I am sure I am not alone when I say that I am greatful that you are willing to share your experiences so that the rest of us can learn from them.

As far as meds, I understand getting off of a med as quickly as possible, especially with the risk of augmentation that some of the meds seem to carry, but how long should one try and tolerate the side effects for? I know some improve with time, but how much time is enough vs too much?

badnights
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Post by badnights »

how long should one try and tolerate the side effects for? I know some improve with time, but how much time is enough vs too much?


That's a tough one. Things like dry mouth and itchy skin improve with time. Things like augmentation and depression (which I got from gabapentin) get worse with time. Insomnia doesn't seem to ever go away with time, does it, anyone?

I guess it depends on what the side effect is, whether you choose to put up with it or not. I would like to say you'll know right away if it's in the trivial category or the suicide category, but it's hard for us to know what's normal and acceptable when we've been living with gradually worsening conditions for years. We think "I can put up with that" because we can, because we're tough, but we forget that normal people don't have to put up with it and we neglect that we should say no and try something else. It's always a pain in the butt for both doctor and patient to end the trial and try the next thing on the list, so we might be reluctant to bring it up.

We have to remember that we don't have to live this way, and don't deserve to. If there's a way I can get my life back, I want it. But I have to keep reminding myself not to accept the status quo and sink into despair as long as there's something left to try.

That's where this forum has been a godsend; lots of info on things to try and wonderful people reminding me of things I keep forgetting in the black of the moment.

ViewsAskew
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Post by ViewsAskew »

I agree with Beth that it's a very hard decision to make. And I also think she made excellent points regarding how to decide.

What I've noticed in myself is that I put up with much too much for much too long because I: 1) am afraid something else won't work, 2) feel as if I'm complaining too much and should be happy that it's better, 3) don't want my doctor to think I'm malingering or a problem patient....and the list goes on.

So, I continue to have insomnia, no libido, foul moods, worsened RLS or whatever it is until I literally cannot take it anymore.

There MUST be a better way!

If I had to categorize them, I'd add to what Beth said:

One priority is augmentation. If you have it, even mildly, do not wait to see the doctor. Some doctors think it's OK, but after several of us here have had terrible experiences with it, it doesn't seem worth it to me to put up with it.

The other set of priority issues is anything that interferes enough with your quality of life that you worry about it, make excuses over it, worry that it will affect your work or relationships, etc. If you've insomnia that lasts an hour, it may not be prevent you from getting enough sleep, for example. But, if you've insomnia that lasts until 5 AM and you have a meeting a 9 AM and you won't be prepared....then that's a big deal.
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.

lexique
Posts: 39
Joined: Fri Jun 20, 2008 2:47 am
Location: Canada

Post by lexique »

Thanks Anne and Beth.

That's basically where my mind set was as far as the side effects go but it is nice to hear those thoughts re-affirmed but someone with a little more knowledge and experience that I have.

Thanks again!

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