My battle with RLS.. starting to lose faith for relief

[Wassy]

I am located in South Florida, and have had a heck of a 10+ year run with RLS.

I was originally diagnosed in 2002-2003 by my Podiatrist. My General Practitioner also has prescribed Requip, Mirapex and other Opiates, flexiril, tamazapam, klonapin, restoril, etc. I've seen a Neurologist from the Cleveland Clinic Florida who has stated (today) that this is about the last try and then she's done with me. Although those were the words, I think she meant it to be, her arms are thrown up in the air and she's as lost as me. I had a period of time where the RLS was managed, to some degree, with a requip dosage of .25, .50 and then 1mg. This has since gone up to 1.5, 2.0, and 2 weeks ago -requip XL 2mg, they then added another 1mg of requip regular to that, and the newest neurologist I obtained a second or third opinion from said do 4mg of XL at 5PM. None of this works and sensations are are as bad as ever and more powerful than ever. Last month, I suffered a heart attack. I am 43 years old, male, in (was) generally good health. Of course I am severely fatigued every day, and this has affected my work tremendously. So much so, that last year I took 3 months off under short term disability, due to so-called depression, fatigue, and all the other stuff so prevalent on these boards, returning to work against the recommendation of my psychotherapist. I find myself needing to go out again, and must, in the next week or two. I am serving my business or me absolutely no benefit and may be doing quickly shrinking my businesses size, and not by choice. My ability to think, function and level of effort is next to zero. I have no motivation. I saw a new neurologist this past friday, who upped the Requip XL to 4mg at 5PM. I am very concerned about this dose for RLS. Beside not helping with the RLS yet, my eyes, for the past 6 months have been feeling very strained and tired with difficulty looking directly at you or others when talking or driving. This has gotten worse. Last March or so, I potentially fell asleep behind the wheel just 2 houses away from my own house (literally), coming home from lunch with my son. 2 houses!!!! I have no recollection of what happened but we are all safe, thank goodness. I remember being fine, although drowsy, and then I'm in a tree. Literally, that is the sequence of events. the car was totaled and the tree damaged although it was low speed thank god. I attributed it to mechanical failure based on pictures and common sense, but after recently learning of the real seriousness and detriments of sleep depravation and all the other quality of life issues, there is a high chance I just fell asleep. I hate to admit it, and mostly because it's embarrassing and I put my family in danger.

The new neurologist made a comment that "we will find the proper drug therapy that works, or you don't have RLS" I don't buy that comment. There are those who don't respond to medicines as designed, and as demonstrated in the past, I may be one of them. For example, Ambien et al, does absolutely nothing for me. On the contrary. This goes down the line drug after drug. Klonapin, for example and at certain higher doses (1mg+) makes me a little more tired that I already am. But yet I still have the RLS sensations and still don't sleep much at all. I believe I have primary RLS which can cause depression, anxiety, fatigue, insomnia - you all know the list - due to sleep depravation, as I've been more recently made aware from my psychiatrist and other doctors.

The sensations I get are in my thighs only, with no PLMD. lately, it's been only my left thigh. I have noticed starting last year, the same feeling in both of my upper arms. This comes and goes (arms).. I also more recently noticed when I attempt to sleep on my side, or reclined (but also sometimes just sitting or even standing), that both arms and upper body tighten up and have a very very odd feeling, where I can't stay in that position. It's a heeby jeeby type feeling, and that literally is the only way i can descibe it. Almost nerve like, but I'm sure someone would have tested for that. I read this morning of others with a similar upper body or full body description. I had not related it to RLS, but perhaps it's worsening and expanding. I've further noticed this occurs sitting up as well, in the car, or at other times. I have not been able to narrow down a specific pattern or position.

I also had a sleep study performed by pulmonologist at Cleveland Clinic, at the referral of the Cleveland Clinic's neurologist. He found no apnea worth mentioning, PLM index of 3, and basically defines it as upper airway restrictive syndrome. no cpap needed. With this boards high recommendations, I reached out to another specialist,, Dr. Buchfuhrer in California and he said, amongst a lot of other very helpful tidbits, sleep studies are generally useless in RLS cases. But yet my neurologist today ordered another one, until I met with her and discussed why. She cancelled. No REM sleep was measured at all during the test, nor stage 3 or 4. alot of latency.

As an aside, I have severe difficulty flying almost any distance, and find myself walking the aisles the entire flight. I am also flying out to Sweden for a cruise in july and am very nervous about how I'm going to handle that flight and back. Why? because i CAN NOT sit in a seat that long. be it a car, chair, dinner table or conference. I've walked out of many conferences at work, many times. it is very troubling and embarrassing. Many times I've pulled over my car because I can not sit and i have to move my legs while driving. If my wife drives, there have been a few occasions where her and the kids look at me nuts because I'm moving legs all over and make her pull over, jump out, make a circle, come back in and try again.

As a long time sufferer, it's only recently I've learned so many intricate details about RLS. Even more importantly, and not really until the last few months, my doctors clearly illustrated the many detrimental affects of sleep depravation. I never put two and two together because I offset it with diet coke, which is now stopped.

The "sensations" occurs while lying down in 99.9% of the times, happen just after laying down for bed and lately, moderately during the day in a reclined position in chair (nearly flat) or sitting up. It's a deep feeling, not at skin level. I have no way to describe it, just like everyone else. The best description is a squeezing, tingly, unbearable feeling that causes me to jump out of bed and walk and walk more. I try to go back to bed and it starts up again. It usually goes away, in the worst of nights, in early Morning hours (5am ish). I'm up many nights throughout without sleep, others with a couple hours at most, and almost always a broken sleep.

I've been pretty focused on the sensations. What I've noticed is although a rapid onset, if I relate it to a squeezing, it starts with a light constant pressure rapidly gaining force until I jump out of bed. I occasionally kick leg, but not subconsciously, I'm awake. When I am on requip or other meds I've tried I've occasionally noticed the same feeling, but more muted. This is rare, as the sensations seem to be at full force, most of the time. relief is seldom and only muted.

I've tried Requip in multiple doses, mirapex, klonapin, temazapan, restoril, flexiril, been on lexapro but now Off and even the ivory soap under the sheet. I don't drink coffee but used to smoke and recently quit. My mother says my father had it as well. He died at 47 of Cancer. Certain uncles and cousins also have it.

Then there is a chicken or the egg with the anxiety. My wife seems to think when she sees more anxiety or load on my shoulders, the more pronounced the severity. Some nights are horrific, Some very poor and others just bad. But it occurs just about every single Night. The arms have the same feelings when it occurs there. I also wonder if there isn't a psychosomatic side to this, at least to some extent.

Those times the meds helped they made me too tired to function. And when it doesn't I don't sleep plus have the fatigue generated from requip and now metropolol for the heart attack. Whether I sleep or not, which is rare, it is never a good quality sleep as demonstrated by my study, and I find myself confused, have stumbled more than once recently, say words I have no idea where they came from, and other issues.

I went to my kids honor society induction on Wednesday evening and my wife asked me why I couldn't look At her straight on And I told her my eyes felt very strained and heavy, as they have before. Eye exam showed nothing wrong.

I'm lost here ....and I think although not a doctor that 4mg requip xl is inappropriate and a potential overdose for rls. That Neurologist called this morning and pulled me from requip and asked that I try some samples of Azilect. I'm not a doctor, but I do care about myself. I do not see anywhere where this is indicated for RLS, first. I also see side affects that are undesirable such as hallucinations. More importantly it indicates side affects such as PD itself, stumbling and falling (which I already have been stumbling lately), confusion, somnolence, etc. seems I'm in a vicious circle. I will not take this drug. I met with the original neurologist today, as I said, and she immediately rejected the concept of Azilect. After explaining that she's pretty much done with me, she said let's try neurontin/gabapentin. I'll pick up prescription tomorrow. wants me to start at 100mg/day, and up to 300mg by end of first week. said not to expect results until end of first week or so. After reading and reading and reading for the past months, I'm starting to think as others have said on this board, it might be better for me as a whole to understand that I may never resolve the RLS and rather than fight it with meds that cause other issues, and mental anguish, understand that my days me be off the circadian rhythm. Up many nights, up most days, sleep when I can. get the weight off my shoulders, accept that it is what it is, and adapt to a schedule around this problem. I probably left out of a lot of important details to help put at least a plan together, so if you have guidance to offer, I'm happy to fill in the blanks where I can.

I'm considering flying to see Dr. B, have emailed a couple others and hope you guys, who are the real experts, can refer some others to me as well as comment as you see fit on my situation. I have a lot going on now, between the heart attach, RLS, upcoming disability and preparing for that (What a tough decision this has been. Being out leaves me completely unable to contact my clients, the office, or have any other business related activity because I'm too sick to work, they say. This is correct, but at the same time, I do intend to come back as soon as possible and would like, when I'm able to at least give myself the best chance of having anything left.) Last year, when I took 3 months off, it took me nearly 2 1/2 of those months to settle down and not "worry" about work anymore.. But that's just me.

[rthom]

Wassey

Sorry things are getting so hard for you now.
My Dr. who used to say not to sleep during the day, due the problems caused by your circadian rhythm, has now changed her mind with me and told me to sleep whenever i can. Maybe this will help you on a short term basis till you get to see Dr.B or find something else to help. I'm sure you have seen the article Viewsaskew put in about the new rls med for this summer? Well I'm sure others will have some other ideas for you. Keep in touch and let us help where we can.
Thanks for the detail this did make it easier to understand what you are having trouble with and let others know they are not alone.

[ViewsAskew]

Wow....you have been through the wringer, Wassey.

I am tried and on my was to bed, but wanted to say hi.

One question....when you started on the Requip, you were on a low dose and it's steadily gone up. Has anyone mentioned the possibility of augmentation? It sounds like this is a possibility.

OK, too tired to type correctly and communicate coherently....will check back in later in the day.

[Wassy]

Thanks guys. RThom- got PM and will reply later. I too woke up early and am tired. Geez, we are all In same boat.

Requip- not one doctor mentioned augmentation down here. I've taken
Myself off for extended holidays. I've had relief here and there and a decent night here and there but no mention. Dr. B agrees that Azilect is NOT used for RLS as did Cleveland clinic neurologist. I'm done with the new neurologist. He blew it with the 4mg dose of requip and now this.

Last night right before I walked dog, took 2mg requip xl AND a 1mg Klonapin. I then nearly collapsed from extreme bout of dizziness while walking dog. Text wife just in case but made it home. Scary as crap. And in the end, still had sensations, whole body heeby jeeby's and finally fell asleep for a few hours.

My biggest fear with Dr. b is not Dr. B, but the flight. And then back again. I am in LA for a wedding late June but not sure I want to wait that long.

I'm glad that this group is so supportive. I'm talking your language which is rare on a local level. I have to figure out how best to identify the cause of disability to give me the best chances of
Continuing on it should nothing work, as it hasn't. My hope is it does, and I can try to restores life and career of 26 years.

The other side is that even with relief at those nights, I still have insomnia, fatigue and all the other issues. What a nasty syndrome this is!

[Wassy]

So just had a morning chat with my wife about all this. She is of the belief that we are what we eat. She suggest a place like Hypocrates which cleanses your system. She also is adimant that stress makes mine worse. Has anyone given this detox a shot and any positive results? She's talking supplements and other things.

This is a very Difficult thing to make heads or tails of. Do I accept it, get off the meds and adapt? Do I keep popping dangerous drugs into system? Perfect example is this neurontim I picked up today. Side affects a re sleepiness, depression, anxiety, dizziness, and awhile host of others. Why bother? How does that bring quality of life and functionality back?

[rthom]

Hey wassy, most find relief in a variety of ways, good health is always important as your wife is suggesting, most however don't find it to be the answer--especially if there is a genetic factor to it as yours sure seems to be--with your family having it.
I have taken neurontin and can't say i found it help the rls much but i did feel a little better after a few days--just lighter--like less depressed. So i kept on it for a while--but it was short lived and i got off because i was on a very high dose and just nothing--good or bad really--so why kill the liver.
For me I have a very specific diet i need to follow and the same results there feel a lot better but not much change with the rls. Just easier for me to deal with the results of it.
I'm sorry for your wife too, she sounds like she's getting worn down, maybe so special attention for her? I know it's hard especially when things are horrible. Those in our lives often have no support at all for this thing. I would hate to be in their shoes. Don't know much about it, can't do anything about it, and have to live with it.... i couldn't imagine their pain and worry.
I have detoxed and it just showed me what my disease process was really like--won't be doing that again soon!
Be careful to only decrease as your dr. suggests if you decide to detox. It ccan be dangerous. Or throw the rls into overdrive from the physical stress.
Has your wife heard about the genetics involved in rls?
Maybe she needs more information on the scientific front. Can you print off stuff for her to read at her convience--to ponder when she's not stressed or feeling pressured by your presence?--Just a thought.

[Wassy]

Maybe I misled or misspoke about my wife. She is generally wonderful and absolutely believes I have this and also hates to see me Struggle. Of course it would be easier if none of this occurred. But she is on board with trying different things such as a wellness center. The one is poke to converts you to wheat grass and a vegan lifestyle. This is as far on the opposite
Spectrum than I've ever loved and I don't think I can adapt to that diet program. She is patient with me but of course the restling in bed is disturbing, although I have no plmd. I just toss and turn and get up on all fours sometimes. It's nuts. She is of the belief that there is no point in taking the meds. Too much bad comes from
Any minimal good.

I don't want to minimize my wife, she has been supported if not perplexed and drained like me.

[ependergrast]

I HAVE BEEN MARRIED TO SOMEONE FOR 44 YEARS THAT HAD THE MOST SEVERE CASE OF RLS OF ANYONE THAT I HAVE READ ABOUT ON THIS SITE. SHE IS ALSO DIABETIC AND HAS CHRONIC BACK PAIN. WE HAVE BEEN THROUGH EVERYTHING THAT YOU HAVE DESCRIBED AND MORE. I KNOW THAT WHAT YOU ARE GOING THROUGH IS VERY BAD, BUT IT CAN EVEN GET WORSE. WE DIDN'T HAVE ANY LUCK WITH DOCTORS, BECAUSE THEY WERE UNABLE TO HELP HER AND IN MANY CASES MADE HER WORSE. SHE IS NOW IN COMPLETE REMISSION WITH ARE RARE FLAREUP WHICH WE ARE ABLE TO CONTROL. I WORK FOR THE RAILROAD AND AM AWAY FROM HOME A LOT AND DON'T EMAIL MUCH. I BELIEVE THAT WHAT WORKED FOR MY WIFE WOULD WORK FOR YOU. I HAVE BEEN ON A TRAIN ALL NIGHT AND AM READY TO GO TO BED. I WILL LEAVE YOU MY CELL PHONE # AND YOU ARE WELCOME TO CALL ME IF YOU WOULD LIKE MY HELP. CELL # 816 935 0107

[rthom]

could you share her success with us, maybe it would help others?

[Polar Bear]

Wassy, you are certainly getting things pretty rough at the moment. I fully understand that some folks prefer not to take medications especially if they are not particularly beneficial. Tho perhaps you just have not yet found the medication or mix of medications that will work for you. From my own point of view my WED is 24/7 and I just could not function without my meds.

The link in my signature will take you to the RLS Medical Bulletin which provides some good information.

Also, I in your posts I see no mention of your blood ferritin level, which indicates the level of stored iron and is quite different from the normal iron in your blood. This is a specific blood test that is not normally done in routine blood work. You should have this done. Most docs will say that 20 is normal but WED sufferers should aim for over 50 and try to be nearer 100, especially if you are taking requip or mirapex. Augmentation on requip or mirapex is more likely if your ferritin is low. Please have this test done so that you know what you are dealing with.

And yes, stress is an aggravator of WED.

I was especially uncomfortable - well actually tortured - when taking a 9 hour flight from London to West Canada. Spent much of the flight in tears and eventually went to the small area near the cabin kitchen and walked a tiny circle explaining that I had a movement disorder. Believe me, I was well medicated with codeine for the return flight. I was pre-medicated in anticipation of the flight which then was delayed twice so I just kept topping up before and during the return flight and it was much better.

[Wassy]

Polarbear- ferritin level is 120. I excluded some
Details in an attempt to say that I am past all the basics. Sleep study, etc.

Your Description of The flight is almost identical to mine. I too stand near the galley, pace around and feel like a
Schmuck!

Although meds haven't helped lately, I think it's beyond meds. Even when meds subdue the RLS, the days are
Always still shitty, fatigued and unmotivating. Regardless. And although at time the meds work, it isn't always a restful night. Sometimes the meds don't kick in until later on or perhaps they don't kick in at all and it rids itself.

[rthom]

Wassy I've read on here lots that the timing makes a big difference for the effectiveness of the drugs--I was amazed to find that if i took my meds right on time not half hour before or after --it did indeed make quite a difference, than if i didn't. Weird eh? I think it was Polar Bear that first told me that--thanks pb and thanks all. With this thing you just never know what little tidbit will help us. Good luck--let us know how it goes.

[Wassy]

True. We've toyed with different times. Some based on trial and error on my own recognizance. Other times the doc calculate a specific titration value. There is a name for it like T-stat or something along those lines. In other words how long from time I take dose untill it takes affect is the goal. On the requip
Xl, I believe it's a 6-10 hour time frame. So rather than taking at bed, I switched about 5pm, so it would start working around bedtime. Makes perfect medical sense, but made no difference so far, on me.

[rthom]

ah mine i have to take at a certain time or what little help i get is almost not there at all. So for instance on my drugs that are every 4 hours i take at 4 hours, even if i don't feel i need it or don't want to take it for some reason--otherwise later on well after other doses of the same meds--my rls is worse. Seems to need to be constant. I frequently did not want to take my daytime meds because i could do without especially if i'm busy, and i don't like to take any more than i have to, so, i hold off and even if i still take it--but it's late and i do that a few times, i get an upswing of symptoms. Very strange i think--so now i suck it up and take it anyway.

[Wassy]

Seems like more and more of us are progressing into upper body RLS if not whole body. For me it's an awkward and eerie feeling when that swooping sensation catches me. Realizing that stress or
Anxiety probably does exacerbate the symptoms of my RLS, I wonder if rather than focusing as nauseum on ridding the RLS, I accept it, adapt my life and hours around it and work on a stress free life to minimize it. Although the onset is usually on its own, I have noticed a definite correlation to it being worse when focused on it. When I lay down, think "is it going to happen tonight", I'll be damned, there it is! Not always that easily but most of the time.

Ironically, went out last night for some
Karaoke, had a few beers, came home around 1am. I had resigned in my mind it would be a miserable night with the beers and all. I also took NO RLS meds last night. While I didn't fall asleep until about 3:30am, I slept until 2pm this afternoon. My wife checked to make sure I was still breathing. Lol. So I'm up 1/2 hour now and while I'm glad I got some sleep, I certainly don't feel refreshed. I guess that is the crux of the RLS-no rhyme or reason.