In Through the Out Door

[majoraward]

Hello. I’m a 57 year old male who has been married for 37 years. Before I turned 45 years old I was very healthy and lived a good life working and raising a family…

I was diagnosed with RLS, PLMD, and Obstructive Sleep Apnea about 12 years ago. Even before that I was waking up at night and heading for the couch more and more often and that went on for several years. I couldn't keep still in bed and disturbed my wife. It was in 2000 that I knew something was terribly wrong. I became very depressed and tired. It became so bad that I decided I would take a permanent swim from a park overlooking the Puget Sound where there is an old lighthouse (yes, I was really out of it). I actually made it to the edge of the rocks, everything was quiet and no one was around. I was about to dive in when a harbor seal swam up right in front of me. I have never seen a seal there before or since and it sort of ticked me off even more than I was because I thought I couldn’t even make a graceful exit. I moved on down the rocks away from the seal and he followed me. I swear he kept doing that for several minutes and I finally just laughed, turned around, and got back in my car and drove off.

The next day I contacted a psychiatrist and got into see him very quickly. He put me on an antidepressant and had me also see a sociologist. They both saw me for a few months and the antidepressant did help, it snapped me out of the depression. Finally the psychiatrist said that they had both been discussing my case and had decided that while I had gone through some things, they were not that bad. He noted that I was still tired all the time for apparently no reason. He said he wanted me to go see a sleep doctor because something else was the cause of my depression.

I went to the sleep doctor and after talking to him he immediately set me up for a sleep study (one of many that I have taken over the years). The results were a shocker to me. I was waking up about every 30 seconds during sleep and moving around in my sleep about the same amount. I was getting almost no REM sleep. Not only that but I was also stopping breathing about the same amount too. He put me on a CPAP machine, which I couldn’t use at the time because I would always jerk the mask off in my sleep, and he also put me on some medication. I actually went on for several years with the problem of not being able to wear the mask and also my sleep became worse despite medications. My RLS became chronic and it became severe.

Since about the first of 2004 my RLS has become 24 hours a day, 7 days a week. It shouldn’t be called restless leg syndrome in my case because my whole body is affected now. If I do not take any medications then I will be awake about 7 days and then fall asleep for about 8 hours (more like passing out). The only way to describe it is as torture. I can’t just stay awake for 7 days; I have to do it mostly standing up pacing. I will fall asleep on my feet and be jolted awake like an electric current as I am falling to the ground. Often I will dream during the time I fall asleep for a few seconds and I am awoken by RLS. I had to endure this until the beginning of 2006 when I was given a new CPAP machine that compensated for my breathing in and out, don’t know the name for it, but it really for the first time allowed me to use the CPAP machine. Also at the same time I was given drugs that worked to relieve my RLS during the day and the night.

The problem since then has been augmentation. I will take the combination of medicines for a period and then either one or all of them stop working, or actually make my RLS worse. I have had two sleep doctors during this time and they have tried everything. Unfortunately the augmentation has become worse and my condition has also become worse (I didn’t think either could be any worse) until now I just missed 6 weeks of work while the doctor tried to find something that would work for me again. The daytime drugs mostly work so at least I can sit down (although not lay down and no naps at all). The nighttime medicine stopped working though which means endless nights of pacing again, endless days of being extremely tired, not enjoying anything. I don’t even get the 8 hours of pass out sleep anymore after 7 days; it is just a constant nightmare.

I returned to work a few days ago because the doctor found a combination that worked again. He tried an old drug I had been on that quit working, Mirapex, and it worked again. So I take Lyrica twice a day, Oxycodone 4 times a day and Mirapex in the evening. The first 4 days I got 8 hours of sleep a night (a miracle for me), then it started slowly going downhill again. The RLS would wake me up earlier almost every day, but then an 8 hour day would slip in there. Last night though I woke with a start at 2 in morning and couldn’t stay in bed because of RLS. Once I was up I realized I was exhausted as though I hadn’t slept in several days. I called in sick.
I am scared to death what tonight will bring. I was out on short term disability from my employer. My employer approved it but the insurance company did not. They argued that no one can have RLS severe enough for a disability. I have appealed it and have an attorney ready to take them to court if the appeal fails. I haven’t had a paycheck for 6 weeks. I feel like I am about ready to lose my job and that augmentation is kicking in once again. The doctors have already tried every type of medicine on me, including many combinations, and they either don’t work, have severe side effects, or don’t work anymore.

So now I have just taken my handful of pills for the evening and hope they work so I can go to work tomorrow and pretend like everything will be okay.

[badnights]

Hi majorward, and welcome to the site. You are having one long, continuous hell of a terrible time! I read your description of waking up with the electrical jolt as you were tipping over from falling asleep standing up, and felt my gut twist in horrified recognition. I was only in that state for weeks, not years, and I almost did myself in! "Torture" is the only word that comes close. I know the end to this hell is out there for you, there IS a solution that will make life livable. I hope some of us can give you some ideas that will help you along that road. And if nothing else, we will listen and understand!

Keep fighting on the disability front! A number of other posters here (all from the US?) have been successful, but it is usually a fight. Insurance company doctors who say no one can be disabled from WED/RLS are profoundly ignorant, and need education. Unfortunately it falls to the sick to be teachers:(

WED is progressive, so it does tend to get worse as we get older. That said, most people can find medications to deal with it, although for some it's a long miserable road (see ViewsAskew's story! sorry I don't know which thread). Thank goodness for your new CPAP, at least that problem is being dealt with.

Are you aware of all the substances that can make WED worse (anti-depressants, anti-histamines, caffeine, etc)? See theRLS Medical Bulletin (2011 version) by the RLS Foundation, page 4 and Table 5, also Things that trigger RLS/WED.

Do you know of the recently discovered association between low blood-ferritin levels, liklihood of augmentation, and severity of WED? It is now recommended that ferritin levels for RLS/WED patients be at LEAST 100 ng/ml, vs the 20 that is supposed to be "normal" for other folks. If you have low ferritin eg. 20, and take a dopamine agonist eg. Mirapex, you are more likely to augment. See the RLSF's brochure on iron in RLS: http://www.rls.org/Page.aspx?pid=524 I take oral iron supplements (ferrous sulfate) and if I don't, my symptoms worsen on the second day that I forget.

Also it might be good to read up more on augmentation and how to deal with it, and print anything that seems relevant to take to your doctor(s). Note that augmentation is the worsening; the other problem you're having, where the medication stops working, is called tolerance. It has been my understanding, derived mainly I think from Dr. Buchfuhrer's clinical experience that he has talked about in emails and books, that once you have augmented on a drug twice, you might as well forget about ever being able to take that drug again without augmenting. And for it to count as a second time, you have to get it out of your system completely (2-4 weeks taking none) then start over at a lower dose; you can't just lower the dose and hope the augmentation will go away.

so I suspect you should get Mirapex out of your daily arsenal. At most, it could be used every few days or once a week or only in emergencies. You might want to discuss this with your doctor. Also, you might want to send that very same history that you posted for us, to Dr Buchfuhrer in southern California. See the website for the southern California RLSF support group, maintained by Dr. B, who will answer questions about your particular problems with RLS and provides an archive of previous questions and his answers. He is one of the authors of the (now-dated) Mayo Clinic algorithm on RLS treatment, and the RLS Foundation's brochure on RLS treatment (above); Dr B is one of the world's clinical experts in treatment of RLS/WED. When I was first diagnosed and trying to find treatment that worked, I ended up showing my doctor an email from Dr B, which helped my doctor research what to do. Someone else here told their doctor about the website Dr B maintains, and he asked her to walk him through it. Many doctors are open to this sort of thing. Others, of course, can't admit there are things they don't know; but I think most are pretty open about it.

How much oxycodone do you take? Depending on how much, there might be room to raise that dose. Also, with your severity, a continuous-release formulation would be better; the regular version is only good for people whose symptoms drop off toward morning to a bearable level that allows them to sleep even though the drug has worn off. You clearly aren't in that category.

Also there are other options. I take hydromorph contin, I'm up to 18 mg per day, supplemented with levo-carbidopa (don't EVER take that drug, almost everyone taking it daily augments, I am taking a terrible chance and I think I'm about to pay heavily but that's another story). And has anyone mentioned methadone to you? Probably not the greatest thing to combine with OAS, but you're not sleeping at all right now and that's far more dangerous.

[majoraward]

First of all thank you for replying.

Hi majorward, and welcome to the site. You are having one long, continuous hell of a terrible time! I read your description of waking up with the electrical jolt as you were tipping over from falling asleep standing up, and felt my gut twist in horrified recognition. I was only in that state for weeks, not years, and I almost did myself in! "Torture" is the only word that comes close. I know the end to this hell is out there for you, there IS a solution that will make life livable. I hope some of us can give you some ideas that will help you along that road. And if nothing else, we will listen and understand!

After our 37th anniversary the 27th of September my wife broke down. She has been sharing in my hell and a few days later I was trying to explain to her that one of the more likely outcomes of this was taking my own life. Not that I would do this in my right mind but after weeks of virtually no sleep my mind is not exactly firing on all cylinders. So I promised her that I would be there for her for the next 37th anniversary, in other words when I am 94 years old. I mean it too and will remember it when I am up in the middle of the night like a disheveled vampire all alone pacing back and forth watching the moon as the world sleeps (maybe over dramatic lol).

Keep fighting on the disability front! A number of other posters here (all from the US?) have been successful, but it is usually a fight. Insurance company doctors who say no one can be disabled from WED/RLS are profoundly ignorant, and need education. Unfortunately it falls to the sick to be teachers:(

Yes I will fight for the disability claims. I am from US also and live south of Seattle. It is for them to say no but it makes me mad that the company I work for would use an insurance company that is treating me like that, just when I need the support. My boss says I shouldn't take it personally, but I do, they are calling me a liar.

WED is progressive, so it does tend to get worse as we get older. That said, most people can find medications to deal with it, although for some it's a long miserable road (see ViewsAskew's story! sorry I don't know which thread). Thank goodness for your new CPAP, at least that problem is being dealt with.

I left a lot out of my story. I am now on a VPAP machine. The reason being that I not only have obstructive sleep apnea now, but I also have central apnea where the brain forgets to tell the lungs to breathe. The new machine is smart enough to know when that happens and powers on the air into my lungs if/when it occurs. Doctor (last doctor) said it probably was the result of taking methadone for too long and taking too much. I was taken off of methadone because they were afraid it would kill me if I was given anymore. The doctor also panicked when I started taking more than I was suppose to because it stopped working. I went through withdrawals coming off it too, some of the withdrawals was that it gave me RLS (roflmao).

Are you aware of all the substances that can make WED worse (anti-depressants, anti-histamines, caffeine, etc)? See theRLS Medical Bulletin (2011 version) by the RLS Foundation, page 4 and Table 5, also Things that trigger RLS/WED

Yes, I got off of anti-depressants and even claritin (which my nose has not forgiven me for) and I do have 2 cups of coffee at between 5:30 and 7 in the morning. I have tested caffeine a number of times and it doesn't effect my RLS (but then I also don't drink coffee after 7 just in case). What it does do is give me a good jolt in the morning so that I can start the day running (not literally, I have not been able to actually run since about 2005 when I realized my RLS hates exercsie). I am about 50 pounds overweight, then I was in perfect shape for me even though I could not sleep, I was at one time almost 100 pounds overweight when I had just about given up. Recently I am on weight watchers and have lost 10 pounds again. By 2003 or so I realized exercise was probably making it worse but wouldn't give up. I could jog for miles back then and now I just do things around the house for exercise or it messes up RLS.

Do you know of the recently discovered association between low blood-ferritin levels, liklihood of augmentation, and severity of WED? It is now recommended that ferritin levels for RLS/WED patients be at LEAST 100 ng/ml, vs the 20 that is supposed to be "normal" for other folks. If you have low ferritin eg. 20, and take a dopamine agonist eg. Mirapex, you are more likely to augment. See the RLSF's brochure on iron in RLS: http://www.rls.org/Page.aspx?pid=524 I take oral iron supplements (ferrous sulfate) and if I don't, my symptoms worsen on the second day that I forget.

The doctor has been having me take iron supplements. I will have to look up what my ferritin level was. He said they were good but from what you say maybe not. Recenly my wife ran out of iron supplements and I just asked her about it and it may have been a couple of days before my new Mirapex round started to wain! She got me back on them a few days ago. Last night I did sleep well although I had added an ambien to the Mirapex, Lyrica, and Oxycodone. Also I was well enough to go to work and felt pretty good. I mean really I am always stoned but I can ignore it most of the time if I have had sleep. I know that some doctors believe that RLS patients may not be able to absorb enough iron into their brains no matter how much is made available to the body - which is pretty disturbing if it is true.

Also it might be good to read up more on augmentation and how to deal with it, and print anything that seems relevant to take to your doctor(s). Note that augmentation is the worsening; the other problem you're having, where the medication stops working, is called tolerance. It has been my understanding, derived mainly I think from Dr. Buchfuhrer's clinical experience that he has talked about in emails and books, that once you have augmented on a drug twice, you might as well forget about ever being able to take that drug again without augmenting. And for it to count as a second time, you have to get it out of your system completely (2-4 weeks taking none) then start over at a lower dose; you can't just lower the dose and hope the augmentation will go away.

Interesting, it is just because I don't listen well when I am seeing my doctors. I am sure they have mentioned tolerance and augmentation as two things but I have trouble remembering, especially if I have had little sleep. My last doctor is a well known sleep doctor and has hit the front cover of research magazines and the like. I only stopped going to him because I moved. The one I am going to now is equally as good. A few weeks ago I had lost hope when there were no combinations of drugs working. I spent 4 hours writing a letter, after having spent a few days looking for one of the smartest doctors in the United States on RLS. I researched it and found the professor that I wanted to write. I sent him the letter outlining my problems and what has been done, etc. I never thought he would reply, it would be like getting an email from Einstein. To my wonder he wrote me the next day. He listed all the things he would do and it was a total downer for me. He had spelled out everything my doctors had already done! It is like they are all on the same high plateau in the medical field but my condition is beyond them up above and they just cannot deal with it. My doctor now is trying though, I will give him that.

so I suspect you should get Mirapex out of your daily arsenal. At most, it could be used every few days or once a week or only in emergencies. You might want to discuss this with your doctor. Also, you might want to send that very same history that you posted for us, to Dr Buchfuhrer in southern California. See the website for the southern California RLSF support group, maintained by Dr. B, who will answer questions about your particular problems with RLS and provides an archive of previous questions and his answers. He is one of the authors of the (now-dated) Mayo Clinic algorithm on RLS treatment, and the RLS Foundation's brochure on RLS treatment (above); Dr B is one of the world's clinical experts in treatment of RLS/WED. When I was first diagnosed and trying to find treatment that worked, I ended up showing my doctor an email from Dr B, which helped my doctor research what to do. Someone else here told their doctor about the website Dr B maintains, and he asked her to walk him through it. Many doctors are open to this sort of thing. Others, of course, can't admit there are things they don't know; but I think most are pretty open about it.

I have no arsenal; all the ammunition has been spent. The combination I am on is the end of the road. It took over a month for both my old and new doctors conferring back and forth to get me back on Mirapex with the other drugs. Nothing else is working. Mirapex also has a bad side effect on me, it makes me spend money like crazy which also drives my wife nuts.

I will contact the doctor that you mention above for sure. He sounds like he might be able to help. Recently I wrote a hospital down in Australia that was doing clinical trials on investigating the brains of RLS patients involving MRI’s and other devices. I volunteered for the study thinking that maybe since I had it so bad compared to most that my brain might reveal the problem more, but they didn’t want to do it. They probably thought I was some nut (which maybe I am), but it didn’t hurt to try.

How much oxycodone do you take? Depending on how much, there might be room to raise that dose. Also, with your severity, a continuous-release formulation would be better; the regular version is only good for people whose symptoms drop off toward morning to a bearable level that allows them to sleep even though the drug has worn off. You clearly aren't in that category.

I only take 5mg of Oxycodone 4 times a day. I think that Oxycodone alone might work, as would Methadone if I were given enough but it is a scheduled drug in America and the doctor’s don’t like to give either one out. As it is I have to get the script from the doctor’s hand and hand it to the pharmacist. The drug can’t just be called in or renewed every month. The whole thing sucks. There are signs at the pharmacies that say they keep their Oxycodone locked up so that people won’t break in and steal it lol I asked the doctor about extended release Mirapex but he didn’t even like that idea. The other thing is that they are afraid I will become addicted which is a total absurdity, I will have this the rest of my life so why would I care if I were addicted to it?

Also there are other options. I take hydromorph contin, I'm up to 18 mg per day, supplemented with levo-carbidopa (don't EVER take that drug, almost everyone taking it daily augments, I am taking a terrible chance and I think I'm about to pay heavily but that's another story). And has anyone mentioned methadone to you? Probably not the greatest thing to combine with OAS, but you're not sleeping at all right now and that's far more dangerous.

I wonder if that is like L-dopa? A neurologist tried to give me some of that last year and I almost flipped out. It made my RLS far worse and I was having strange dreams, sleep walking, and acting funny (according to my wife).

I was going to mention that I am writing so I must be feeling pretty good. When I have gone a few days without rest there is no writing, not much reading, and I don’t enjoy much of anything. I can’t even enjoy TV much then. I used to love movies but rarely have the concentration to watch them now. I have written 4 books of poetry, much of it written more than 5 years ago. I finished a science fiction novel a year and a half ago (over a 6 months period when I was unemployed and the sleep wasn’t too bad). There are a lot of creative things I used to do, but I can’t do them now. It is like I am in the middle of a war zone and I can sit in the calm of a quiet bunker for a few days and then the war breaks out again and I am fighting the battle and starting to lose, just when I give up hope the shells stop falling for another day or two.
Then I become wide awake and fairly rested and I remember…I frantically search for a solution and maybe find a place like this. Then I remember…there is no cure because the doctors don’t even know what the problem is! All they can do is mask the problem, to make the pain go away for awhile, to make it so I can lay down in a bed and not move. Then I remember…they can’t even do that for very long and I will be pacing the floor by myself in the middle of the night and say hello to my wife when she wakes up having had her 8 to 10 hours sleep. Then I will hear her complain about the poor sleep she has gotten the night before. Then I go back inside myself.

[majoraward]

badnights here is my iron and ferritin level results. If I am reading this correctly my ferritin is 105 ng/mL


Iron Studies (03/12/2012 11:23 AM PDT)
Name Result Normal Range
Iron Total 99 mcg/dL 55 - 160
Iron Binding Capacity, Unbound 254 mcg/dL 126 - 382
Iron Binding Capacity, Total 353 mcg/dL 300 - 480
Iron % Saturation 28 % 20 - 50
• Iron Studies (03/12/2012 11:23 AM PDT)
Name Result Normal Range
Ferritin Level, Serum 105 ng/mL 22 - 275

[Polar Bear]

Majoraward, welcome, and I'm sorry you have had such an awful time with this horrid disease.
Badnights has given you a wonderfully informative response.

For your convenience, Dr B's email address is - somno@verizon.net Many of us have written to him, often more than once.

The site that badnights mentions and on which Dr B has a medical letters section - http://www.rlshelp.org - is well worth visiting. It was my GP who was so considerate and checked on the site, partly because I was asking for codeine 30/500 and I had given him details of this site. He got it up on his pc and then phoned me at home (to save his time searching). I talked him to the relevant section.

Please do write to Dr B and we shall be eager to hear his response.
Also, if you are south of Seattle... you are at least on the correct side of the US in relation to Dr B's clinic. Would a visit be possible.

My understanding also is that your ferritin serum is 105 which would be considered quite good.

Yes, levo-carbidopa is also L-dopa.

As for addiction, I think addiction is when you crave a drug for the 'rush'...... Perhaps 'dependant' is a better word - and if that's the case so-be-it.
I prefer to be dependant than suffer as I used to.

[majoraward]

Polar Bear,

Thanks for the information. I did an incredible amount of reading from badnights links last night and found his site. I will contact him soon. Last night though the Mirapex did not work much, I got about 3 hours of restless sleep and don't feel good at all. I'm getting too old for this to be happening. That is the other factor about this that I have almost forgotten about - 12 years ago at 45 years old I could handle this because I was more or less young and healthy but now I'm getting older and less healthy and I can't fight it like I used to. Another day or two of this and I won't be able to do much writing or reading. I know from experience and it is true, and it is also true now that I have thought about it that not only is the problem worse but my body and mind is worse also. I am too tired right now to write any letter. I came on here because of curiousity today, I wanted to see if anyone else had posted.

If this all were not bad enough I found out I have prostate cancer about a month ago and within the next 4 weeks I will have robotic surgery to remove it. I will be in hospital only a couple of days but home for 6 weeks recovering. I wonder what kind of hell that will be with my RLS/WED or whatever it is called. Then there is my job, I have ran out of sick leave and vacation. I continue to miss more and more work having taken 3 short term disability leaves in the last year and the insurance companies are denying my benefits. On top of that we used most of the rest of our money to buy a new manufactured home in a manufactured home community (which is not paid for) and I haven't had a check in 7 weeks. The last week or two that I have actually been able to sleep some I have been frantically working to take care of things that can only be taken care of when my mind is working at 100%, but now I am going back into the abyss and I am leaving things a mess. Sorry for putting that all out there but I don't have anyone else to talk to about it.

Majoraward, welcome, and I'm sorry you have had such an awful time with this horrid disease.
Badnights has given you a wonderfully informative response.

For your convenience, Dr B's email address is - somno@verizon.net Many of us have written to him, often more than once.

The site that badnights mentions and on which Dr B has a medical letters section - http://www.rlshelp.org - is well worth visiting. It was my GP who was so considerate and checked on the site, partly because I was asking for codeine 30/500 and I had given him details of this site. He got it up on his pc and then phoned me at home (to save his time searching). I talked him to the relevant section.

Please do write to Dr B and we shall be eager to hear his response.
Also, if you are south of Seattle... you are at least on the correct side of the US in relation to Dr B's clinic. Would a visit be possible.

My understanding also is that your ferritin serum is 105 which would be considered quite good.

Yes, levo-carbidopa is also L-dopa.

As for addiction, I think addiction is when you crave a drug for the 'rush'...... Perhaps 'dependant' is a better word - and if that's the case so-be-it.
I prefer to be dependant than suffer as I used to.

[Polar Bear]

I am very sorry to hear that you have prostate cancer and wish you well in your treatment. It is hopeful that the pain relief medication following surgery will go some way to also relieving your WED symptoms.

Stress is no friend of WED and all is pretty overwhelming for you at present, so feel free to have a rant here on the board, many of us have done it.
I am 63 and have also found in very recent years that all of a sudden I have health issues.... quite separate from my WED which is of 30+ years.

You have said that - another day or so of this you won't be able to do much reading or writing.
I can only say.... that if it was me..... I would email Dr B now.
Without some relief from symptoms, and some sleep, it's is almost impossible to start to face anything else that is going on.
You wouldn't need to re-think a new letter. Just take the salient points from your posts on this thread and paste them onto an email, and edit appropriately.

I wish you a peaceful evening.

[debbluebird]

I too am sorry for your situation. I wanted to let you know that I lost my job Jan. 2011. I was a mess, not sleeping, etc. I was having short term memory loss, confusion, couldn't concentrate, etc, and still have those problems. Not sure what was causing it, medication, lack of sleep, stroke, I don't know. Of course I lost my health insurance, so I never had any tests done. I applied for disability right away. My sleep doctor sent a letter and health information. They did give me a mental exam by a doctor hired by disability. They gave me disability, it started July 2011. I will start getting Medicare July 2013. I am now 61. You have to wait 2 years before you get Medicare. I hope this helps. My WED and apnea is not as bad as yours, but I still don't get a lot of sleep. Last night I slept 2 hours, up for 3, then slept another 2 hrs. DEB

[badnights]

majoraward, when you email Dr B, give him the whole story at once, the equivalent of both of your posts here. He will need all that to come up with reasonable suggestions.

What a b-*ch about the cancer. Stress is bad for WED, it makes the symptoms worse, so if you have any techniques for reducing the impact of stress, bring them into play, and learn new ones. Although I know it's almost impossible to learn things right now. I was trying to finish my Masters thesis in a similar state, a few years ago (I went back to school at 46 yrs old). This disease had flared up in the middle of it and changed everything, I went from being smart to being stupid, effectively, and I was under incredible pressure from my supervisor, my employer, and mostly myself to finish it off. But the state I was in! I would read a sentence, struggle to understand it, sometimes for 10-15 minutes but sometimes for 1 or 2 hours. When I got it, I would move to the next sentence, experience more or less the same struggle, move on to the next sentence which required drawing on knowledge of the first sentence, and I would have forgotten what the first sentence meant by then! I would struggle to understand it all over again. I really don't know if any of that learning stuck; probably the only reason I eventually finished is because I got drugs that semi-worked and I became able to semi-function again. That is what has to happen for you. Meantime, in whatever way you can, learn stress-reduction techniques like walking meditation (don't even try the sitting kind! unless your body is calm).

As PB said, your ferritin looks OK for an RLSer, so there's not much to do on that front. (Keep taking the iron).

are you sure your RLS hates the exercise? For some of us, at least, it's the change in amount of exercise that trigger it. If you were inactive and became active, that triggered it. If you were moderately active and became extremely active, ditto. And if you were active and became sedentary that could also make it worse.

I am worried about your use of Mirapex, you have impulse control disorder caused by the drug, and it's wrong that you have to take it again!! especially since it seems to be causing augmentation which means it's making matters worse, so why take it, for the moment of relief it brings? Did your prescribing doctor know you had impulse control disorder from it? Also I know you've said you tried everything, but have you tried ropinirole/Requip or rotigotine (the Neupro patch) instead of pramipexole/Mirapex? Have you tried Horizant instead of Lyrica? What the heck these options are out there.

It's too bad you have central apnea as well, that probably takes methadone off the list of options.... unless the VPAP can accomodate the apnea well enough?? well, why not? Ask about it.

any doctor that is concerned about addiction at this point needs to give his head a good shake.

Listen, it's always up and down with this nasty disease, and I'm glad you promised your wife you'd be there for the next 37, because you never know what you might be doing in 10 years, perhaps living a life of joy, free of disease or of its symptoms; perhaps fulfilling a lifelong dream; who knows! I certainly couldn't have imagined being as functional as I am now, when I was in the depths of the RLS hell and filling out disability forms myself.

So hang in there and rant away on this board all you want!
hugs

[majoraward]

I wrote the doctor last night. What I did was sent him a letter I had written to someone else about my condition and attached a note at the beginning, it actually was written for someone like him that is knowledgeable abot RLS/WED. Thanks for the advice, I couldn't have written it again at the moment.

As far as whether to call it an addiction. I'm calling it an addiction because so far I have had to get off many of these drugs including methadone and went through terrible withdrawals and I felt like a drug addict for sure. Actually I tried to get off methadone by myself once and it was a very bad mistake. Don't ask me why, just sick of all the meds and sick of being sick I guess, cold turkey didn't work.

Someone mentioned stress interfering with my RLS/WED. Nothing bothers my sleep, I know that seems odd, but it is true. My wife, now she messes herself up at night and worries in bed about things and can't sleep sometimes - I never had. I think if it were my last night on Earth, if I was tired and RLS wasn't bothering me I would sleep right through it.

The thing that bothers me is being too tired to think well and take care of all the business I need to see to during the day. At work and at home. I'm an aerospace tool engineering designer, liasion, and group checker and the job is virtually all thinking through problems using complex computer tools like CATIA V 3D computer aided design package. That is why I end up going home on leave, if I can't think well I might as well be home - I feel like I'm wasting the companies time, which I am. I slept about 5 hours last night so I'm feeling better today, although still not caught up on sleep.

I am very sorry to hear that you have prostate cancer and wish you well in your treatment. It is hopeful that the pain relief medication following surgery will go some way to also relieving your WED symptoms.

Stress is no friend of WED and all is pretty overwhelming for you at present, so feel free to have a rant here on the board, many of us have done it.
I am 63 and have also found in very recent years that all of a sudden I have health issues.... quite separate from my WED which is of 30+ years.

You have said that - another day or so of this you won't be able to do much reading or writing.
I can only say.... that if it was me..... I would email Dr B now.
Without some relief from symptoms, and some sleep, it's is almost impossible to start to face anything else that is going on.
You wouldn't need to re-think a new letter. Just take the salient points from your posts on this thread and paste them onto an email, and edit appropriately.

I wish you a peaceful evening.

[Polar Bear]

I'm glad you got 5 hours sleep and hope that tonight repeats it.
I can well remember the last few years before I retired, trying to concentrate in work whilst getting about 3 hours (broken) sleep each night.
It was only when a reasonable sleep pattern returned that it became clear just how badly the lack of sleep had been affecting me.
Even now, I don't sleep until the early hours of around 2.30am and fortunately am in the position to sleep until about 9am. There is still an up-and-about time of around an hour in the middle. Sleeping medication is very helpful.

Hopefully you will hear from Dr B before too long.

[majoraward]

I'm glad you got 5 hours sleep and hope that tonight repeats it.
I can well remember the last few years before I retired, trying to concentrate in work whilst getting about 3 hours (broken) sleep each night.
It was only when a reasonable sleep pattern returned that it became clear just how badly the lack of sleep had been affecting me.
Even now, I don't sleep until the early hours of around 2.30am and fortunately am in the position to sleep until about 9am. There is still an up-and-about time of around an hour in the middle. Sleeping medication is very helpful.

Hopefully you will hear from Dr B before too long.

Wow, being retired is a dream to me. I actually sent for paperwork to see how much I would get a month from my company a couple of weeks ago but have not received it yet. I know it won't be enough but it is coming down to maybe I won't have a choice. If my wife is having sleep problems it is because of me talking of retiring early, but I am at a loss of what else to do if this keeps occurring.

Sorry you having to stay up so late but on the other hand you are lucky to be able to sleep in. I can't sleep all day once I wake up in morning. There would be no sleep past 5:30 am. I noticed for many years that 4 am was the best time for me. If I were staying up 24 hours a day at 4 am I could at least lay down for a few minutes even if I couldn't sleep. I used to look forward to that time and it would last until 8 am or so. Then it went down until maybe from 4 am to 4:30 am, then it went away. While the meds are working like right now though I can sit and it is fine. I guess the whole thing of RLS reversed itself because 15 years ago or so it would only bother me an hour or so every two or 3 days then the time increased until it didn't bother me for an hour in the morning, then the peace totally went away. Of course this is when the meds are not working or if I don't take them. I don't know how many times I have forgotten to take my meds, from lack of sleep, and my wife will be trying to get me home while she is driving and I am trying not to jump out the door. Sort of funny really.

I think I'm texting on and on so I'll sign off. Take care.

[Polar Bear]

To avoid confusion and missed/late medication I use a weekly pill box and I set the alarm on my phone as a reminder. No matter what I am doing I stop when the phone alarm goes off and take my medication.

[debbluebird]

I'm 61 now and was forced into retirement Jan. 2011 because of WED/PLMD. I'm an RN. I had planned to work for at least 5 more years. Our money is limited, we sold everything and really down sized. We move to where we really wanted to live and we are very happy. DEB

[majoraward]

To avoid confusion and missed/late medication I use a weekly pill box and I set the alarm on my phone as a reminder. No matter what I am doing I stop when the phone alarm goes off and take my medication.

We have Walgreens Drug Stores here and we transferred all of our prescriptions to one of them last month when we moved into this manufactured home only a mile from one. I noticed when I was in the store a few weeks ago that they had an app for the iPhone. I downloaded it and it is so cool. I fill prescriptions by taking a scan of the barcode with the camera and then it sends it to Walgreens. It does many more things but the best thing is that I set up reminders for taking meds and it reminds me at the time to take them with my iPhone and keeps bugging me until I check off that I have taken them for the time period. So far it has worked but it has also forced us to drive home once so far and get them.

I do have one of those weekly pill boxes 7 across and 4 down lol, don't have a phone alarm though.