Been a long time

[jumping]

Howdy! (Sorry in advance for the novelette.)

I'm 59 and have suffered with RLS since I was pregnant the last time, 36 years ago. However, while I was taking care of my aged father, I realized that he had it, too. So, it may be primary.

Over the years, RLS has come and gone. It was never gone long, though. In recent years it seems like I get it every night... and it's worse. I would rate it as severe and my right arm is starting to act up. I had a sleep study done about 20 years ago. Turns out I have periodic limb movement, too. And, if none of that is bad enough, I also have pretty bad insomnia.

It goes like this:  I get tired. I go to bed and pray that I can fall asleep before my legs start jumping. (That's what I call it- hence my screen name.) Most of the time, I can't. I get up, still tired, and decide whether to stay up until I pass out or take one of my precious few percocet or xanax to make it all go away. Percocet works like a charm! Every time. Xanax knocks me out. Every time. But- Good luck finding a doc to prescribe either one of them these days. (War on drugs my butt. War on patients!) I had a very good doc who gave me percocet for severe pain that I had. I accidentally found out that it works for my RLS, too. He left medicine, but I still have a few left. I also beg for the leftovers of friends and family. I'm almost out of my previously prescribed xanax, as well. I dread those most severe nights where I won't be able to take anything. I'm very judicious. I am not addicted to either.

My new doc is very conservative. He will NOT prescribe opioids or xanax. I don't want to Dr. shop. So, I am doing more research- although I have been doing it periodically for new information. That's what brought me here. No one I know and probably not my Dr. either understands what I go through- except for y'all. My husband is a peach and really tries. I think he gets it to some degree, but I don't think he quite knows the literal torture it can be. He encouraged me to start talking to Drs about it again. I gave up after not tolerating ropinirole and finding no relief from others including lyrica and neurontin. Now that I am reading more, the more I do not want anymore of the "dopamine drugs". I want opioids and/or xanax. I know they work.

I have ordered a good time release B complex to try and I take Vit D, large dose C and a good multi. I have tried the common sleeping aids including Benadryl which, sadly, I just took 100 mg of not knowing that it is bad for RLS. (Which is why I just took the percocet.) I don't believe I need iron (I have a full blood panel done every 3 months) and it's not something that I want to mess up given my age and years into menopause.

The first thing I do when I feel it coming on is to lay on that side. Sometimes, it works to stop it. Unfortunately I have pretty bad bursitis in my hips, so it can get very painful to do this for very long. I usually lay in bed tossing and turning for one to three hours before I give in and get up.

Other than trying to help myself, I think I will go to a psych doc for xanax. I have a bona fide anxiety disorder. I may try a neurologist, too. I am just loathe to run to one specialists appointment after another. I already have enough! I have a nasty and painfully debilitating form of psoriasis, psoriatic arthritis, ADD (currently unmedicated) and bi-polar to name a few. I'm a wreck! LOL! Getting old is NOT for the feint of heart.

If you have read along this long, thanks a bunch. Nice to know someone understands and cares.

On this board can you tag people with the @ sign? I'm a moderator of a huge board, but we use a different platform.

[Polar Bear]

Jumping, welcome to the Discussion Board. A phrase often used here is.... We're glad you found us but sorry that you need us. We are sorry that you suffer from so many issues as well as your RLS/WED symptoms.

You say you believe you don't need iron because you have a full blood panel done every 3 months. The blood test you need is of your Serum Ferritin and this is not done as standard in a blood panel. Please check on this and if necessary arrange to have it done. The normal level is considered to be ok at 20 but as an RLS sufferer you would need it to be up around 100. When getting a result don't accept being told that it is OK/Normal, make sure to ask for the actual number.
Bad insomnia is a part and parcel of RLS. It is something that we all struggle with. I have tried all of the sleeping aids without success. They just don't work for me.

To lie in bed for 1 - 3 hours tossing and turning is awful. As soon as my symptoms start I am straight up and out of bed ready to try and walk it off. I feel that to stay lying in bed tossing and turning with RLS is only prolonging the torture.
What do you do when you eventually get up out of bed because of your RLS symptoms. I used to put my feet in a bucket of really cold water and draw the water up as far as my knees. Cold enough to take the breath from you. After about 20 minutes I would feel the creepy crawly feelings start to ease and I'd be able to go back to bed and try quickly to get over to sleep. Others try hot baths, hot showers, cold showers over the legs.
At present when I get up, I walk and stretch for as long as needed. Often my legs settle but my insomnia still won't let me sleep. I read a lot.

It does sound like you need a new Doctor. One who 'gets' RLS or one who is willing to learn and work with you. It is frustrating when you know what works and cannot have it prescribed for you.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. Many of us have a copy of this book. Mine is often with me when I go to see my doctor about my RLS. It is dog eared and full of pencil notes and post-its. It covers all aspects of RLS.

There are certified RLS Quality Care Centres. I wonder if you are near one of these or could travel to one. This link will take you to a relevant information page.
https://www.rls.org/treatment/quality-care-centers
You would be assured of seeing a doctor who knew exactly how you feel and would know how to treat you. It can take some time to get an appointment.

You cannot tag anyone with the @ sign.

[Rustsmith]

jumping, welcome to the board.

With respect to contacting an individual, you cannot tag them but there are a couple of things that you can do. First, if you use the full editor and cut/paste a quote from someone else's post, that person will be notified. Second, you can send someone a Private Message (PM) that acts sort of like an email. That goes just to that person. Also similar to an email, you can add the login name for other board members so that they also receive the message. To send a Private Message, just note the name of the person that you want to contact and then click on the Private Message link on the top bar (just below the white search box).

As Betty said, the insomnia that you are experiencing is very probably the other side of RLS. The name for the condition was given before the researchers found out that RLS is a combination of both the movement urges and also insomnia. Many of the meds used to treat RLS help with the movement part but not always the insomnia. And most insomnia meds don't help us because they target a different part of the wake/sleep condition and are therefore effective. Further, over-the-counter sleep aids all use Benedryl as the sleep inducing agent and Benedryl is one of the worst RLS triggers out there.

If you think that your new doctor would be willing to learn, there was a new publication released late last week that is intended to provide guidance to doctors for the "proper" management of RLS. You can find it at: https://www.mayoclinicproceedings.org/a ... 0/fulltext.

But if you don't think that your doctor would be receptive to learning something from a patient (an all too common situation), that I would agree with Betty that you need to find a new doctor. There are ways that this can be done, but I will wait to hear back from you before expounding upon those options.

[stjohnh]

... I gave up after not tolerating ropinirole and finding no relief from others including lyrica and neurontin. Now that I am reading more, the more I do not want anymore of the "dopamine drugs". I want opioids and/or xanax. I know they work.
...

Reasonable sentiments under the circumstances, but I don't think you will be successful if you take an "opiods or xanax" only point of view.

The problem is It doesn't look like you have really given the routine RLS drugs a fair shot. A fair number of people have side effects from ropinirole but do just fine on pramipexole (Mirapex). Additionally the dosing of Lyrica and (especially) Neurontin (gabapentin is the generic name) is fraught with difficulties, and unless you were taking a big enough dose to cause significant side effects, you probably should have been given a bigger dose. So most RLS aware docs are not going to give you xanax or opioids, especially until you have given the "regular" meds a better chance. Additionally, it sounds like you have mild to moderate RLS and most of those folks can get satisfactory control without using opioids or xanax. While the government's war on opioids is poorly carried out (like folks with severe RLS have trouble getting opioids even though abuse problems are rare in that group), it IS true that opioids and xanax are addictive and lots of people have had their lives severely affected by abuse/tolerance/addiction to those meds. Opioids are not ordinarily used except for people with severe RLS.

Also, very significantly:
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 40A179/pdf

My recommendation is you discuss with the doc getting a ferritin and a transferrin saturation % test to see if IV Iron is warranted. At the same time, discuss with your doc starting Lyrica or gabapentin and work up to a dose that either gives you relief enough so you can sleep OR you get significant side effects. If you get significant side effects, cut back to a tolerable dose and add very low dose pramipexole (1/2 of a 0.125mg tablet). Combinations of lower doses of two or more drugs frequently work better than a higher dose of a single drug. Pramipexole at doses of 0.125mg or lower almost never cause the big problems you read about here.

One other point. Your goal should be controlling the jumping and sleep issues enough so that you can get reasonable (not perfect or even "normal" sleep). You should NOT try to get rid of all RLS symptoms, that usually leads to doses of meds that cause lots of problems.

The insomnia problem is frequently a big one. The meds that seem to help the greatest number of RLS patients are the alpha-2-delta-ligand group (Lyrica, Horizant, and gabapentin) and THC (medical marijuana). If marijuana is available to you, you should give it a try. Marijuana doesn't help the jumping, however. The regular over-the-counter and prescription sleeping meds almost never help RLS patients.

[jumping]

You say you believe you don't need iron because you have a full blood panel done every 3 months. The blood test you need is of your Serum Ferritin and this is not done as standard in a blood panel. Please check on this and if necessary arrange to have it done. The normal level is considered to be ok at 20 but as an RLS sufferer you would need it to be up around 100. When getting a result don't accept being told that it is OK/Normal, make sure to ask for the actual number.

I will discuss this with my DR. I'm not sure if they have ever looked at that exactly, or not. Thanks! I'm not trying to be argumentative, but why do you believe that THIS time they are right about the cause? I mean, tomorrow they could change their minds. The blood iron thing is pretty new isn't it? I am nervous about taking a lot of iron. I'd like to protect my heart. Is iron treatment targeted or in any way safer than just taking a mega pill?

Bad insomnia is a part and parcel of RLS. It is something that we all struggle with. I have tried all of the sleeping aids without success. They just don't work for me.

I wasn't aware of the insomnia connection. I try to explain it to people and they are like, of course you can't sleep, your leg is jumping! It's complicated.


To lie in bed for 1 - 3 hours tossing and turning is awful. As soon as my symptoms start I am straight up and out of bed ready to try and walk it off. I feel that to stay lying in bed tossing and turning with RLS is only prolonging the torture.
What do you do when you eventually get up out of bed because of your RLS symptoms. I used to put my feet in a bucket of really cold water and draw the water up as far as my knees. Cold enough to take the breath from you. After about 20 minutes I would feel the creepy crawly feelings start to ease and I'd be able to go back to bed and try quickly to get over to sleep. Others try hot baths, hot showers, cold showers over the legs.
At present when I get up, I walk and stretch for as long as needed. Often my legs settle but my insomnia still won't let me sleep. I read a lot.

My DH would agree with you. He thinks I should just pop up and get out of bed. I have a number of reasons for doing what I do. Often times, I do just get up, but the norm is to try like hell to get to sleep. I generally try to do some light housework and play on the computer. DH is a very light sleeper. Noises in the house wake him. (But, he deals with my tossing and turning.) Sometimes, I just get up and cry from the frustration.

I have 2 diseases that prevent me from soaking my feet or legs in either cold or hot water. However, I can sit in the recliner, lay back and let my LV a/c hit my feet. It gets very cold and often helps.

It does sound like you need a new Doctor. One who 'gets' RLS or one who is willing to learn and work with you. It is frustrating when you know what works and cannot have it prescribed for you.

I agree, but my trouble is we lost our really wonderful GP a couple years ago and have been struggling to find a good Dr. We finally settled on this one for all the right reasons. Could he better? Yes. But, I am not ready to go Dr. shopping again. I will try to communicate better with he and his really good PAs. The last visit was the only time I really pushed RLS, so I'll keep an open mind, though he IS very conservative.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. Many of us have a copy of this book. Mine is often with me when I go to see my doctor about my RLS. It is dog eared and full of pencil notes and post-its. It covers all aspects of RLS.

Thanks again! I saw this when I was perusing the forum.

There are certified RLS Quality Care Centres. I wonder if you are near one of these or could travel to one. This link will take you to a relevant information page.
https://www.rls.org/treatment/quality-care-centers
You would be assured of seeing a doctor who knew exactly how you feel and would know how to treat you. It can take some time to get an appointment.

Well, Baltimore might be doable... Transportation is a problem, though. I don't drive.

You cannot tag anyone with the @ sign.

Thanks for the input and welcome.

[jumping]

jumping, welcome to the board.

With respect to contacting an individual, you cannot tag them but there are a couple of things that you can do. First, if you use the full editor and cut/paste a quote from someone else's post, that person will be notified. Second, you can send someone a Private Message (PM) that acts sort of like an email. That goes just to that person. Also similar to an email, you can add the login name for other board members so that they also receive the message. To send a Private Message, just note the name of the person that you want to contact and then click on the Private Message link on the top bar (just below the white search box).

As Betty said, the insomnia that you are experiencing is very probably the other side of RLS. The name for the condition was given before the researchers found out that RLS is a combination of both the movement urges and also insomnia. Many of the meds used to treat RLS help with the movement part but not always the insomnia. And most insomnia meds don't help us because they target a different part of the wake/sleep condition and are therefore effective. Further, over-the-counter sleep aids all use Benedryl as the sleep inducing agent and Benedryl is one of the worst RLS triggers out there.

Well, I certainly believe THAT! I thought it was just me all this time. Everyone swears by Benedryl and even the docs have recommended it. I have always resisted, though. For whatever reason. But, I just recently got the active ingredient, diphenhydramine. Now I have to rehome that and another one I got.

If you think that your new doctor would be willing to learn, there was a new publication released late last week that is intended to provide guidance to doctors for the "proper" management of RLS. You can find it at: https://www.mayoclinicproceedings.org/a ... 0/fulltext.

Thank you, I will print that out and mail it before my next appt. and then bring a copy with me. It's better than bringing a big book.


But if you don't think that your doctor would be receptive to learning something from a patient (an all too common situation), that I would agree with Betty that you need to find a new doctor. There are ways that this can be done, but I will wait to hear back from you before expounding upon those options.

I will give the Docs a fair go and see what comes of it. Thanks!

[jumping]

... I gave up after not tolerating ropinirole and finding no relief from others including lyrica and neurontin. Now that I am reading more, the more I do not want anymore of the "dopamine drugs". I want opioids and/or xanax. I know they work.
...

Reasonable sentiments under the circumstances, but I don't think you will be successful if you take an "opiods or xanax" only point of view.

The problem is It doesn't look like you have really given the routine RLS drugs a fair shot. A fair number of people have side effects from ropinirole but do just fine on pramipexole (Mirapex). Additionally the dosing of Lyrica and (especially) Neurontin (gabapentin is the generic name) is fraught with difficulties, and unless you were taking a big enough dose to cause significant side effects, you probably should have been given a bigger dose. So most RLS aware docs are not going to give you xanax or opioids, especially until you have given the "regular" meds a better chance. Additionally, it sounds like you have mild to moderate RLS and most of those folks can get satisfactory control without using opioids or xanax. While the government's war on opioids is poorly carried out (like folks with severe RLS have trouble getting opioids even though abuse problems are rare in that group), it IS true that opioids and xanax are addictive and lots of people have had their lives severely affected by abuse/tolerance/addiction to those meds. Opioids are not ordinarily used except for people with severe RLS.

Also, very significantly:
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 40A179/pdf

My recommendation is you discuss with the doc getting a ferritin and a transferrin saturation % test to see if IV Iron is warranted. At the same time, discuss with your doc starting Lyrica or gabapentin and work up to a dose that either gives you relief enough so you can sleep OR you get significant side effects. If you get significant side effects, cut back to a tolerable dose and add very low dose pramipexole (1/2 of a 0.125mg tablet). Combinations of lower doses of two or more drugs frequently work better than a higher dose of a single drug. Pramipexole at doses of 0.125mg or lower almost never cause the big problems you read about here.

One other point. Your goal should be controlling the jumping and sleep issues enough so that you can get reasonable (not perfect or even "normal" sleep). You should NOT try to get rid of all RLS symptoms, that usually leads to doses of meds that cause lots of problems.

The insomnia problem is frequently a big one. The meds that seem to help the greatest number of RLS patients are the alpha-2-delta-ligand group (Lyrica, Horizant, and gabapentin) and THC (medical marijuana). If marijuana is available to you, you should give it a try. Marijuana doesn't help the jumping, however. The regular over-the-counter and prescription sleeping meds almost never help RLS patients.

In the somewhat distant past, I DID try what was available to me- at that time. I could NOT tolerate ropinirole, at all. Neurontin and lyrica did NOT work. Weed does NOT work. It keeps me awake. CBD does NOT work. I am not sure what else I have tried because it was so long ago, but I tried all that I could.

My new Dr. DID prescribe ropinirole to me again when I told her I would try it again, but I can't bring myself to taking it since my side effects were so terrifying- yes, terrifying and I'm not given to hyperbole. I don't believe that Horizant was available before, so maybe I can try that.

I'm not sure why you say I sound like I have a mild case. I find that odd. I'm not here to prove anything to you or anybody else. But, I do assure you that my RLS is not mild. I have spent many decades suffering from it. I gave up on the docs a long time ago when I tried to address it the first time. I have been very seriously suicidal over it. It is so intolerable, I am willing to go crawling back to the docs, like a guinea pig, but I really don't hold out much hope.

Thanks for the welcome?

[jumping]

If you think that your new doctor would be willing to learn, there was a new publication released late last week that is intended to provide guidance to doctors for the "proper" management of RLS. You can find it at: https://www.mayoclinicproceedings.org/a ... 0/fulltext.

Rustsmith- Thanks a lot for that pdf. After reading it, I have decided to try the iron. I looked on Amazon. 325 mg is the standard pill, so it's not like I have to take a lot. I have 2 months before I can have a blood draw and see the doc. By then, I should know if it is gonna work. If not, a blood draw should (or may not) reveal a serious deficit and we can go from there. I printed one for the doc and one for me and will mail it ahead of my appt. And, yes, I already take C, so I'll be taking that with it.

Very helpful.