Sad, weary, and let down

For everything and anything else not covered in the other RLS sections.
Randy Mc Kee
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Post by Randy Mc Kee »

Oh boy, you had to ask. The symptoms...hmmmm...I've tried to describe it but never really have come up with anything even close.
The feeling in my legs is so weird it is indefinable, but...it is definitely not a creepy crawly feeling, or bugs or tingling. It's always in the front of my Thighs and is almost like some sort of gas vapor has been pumped into them although not a bloated feeling, it's kind of drawing but at the same time if I stretch them it's temporary relief (during the stretching). It's a real deep, aggravating and annoying sensation. It's almost like an extreme fatigue but at the same time a hyper feeling in my legs. It's almost like a pressure but more like a sensation. I could keep on trying and all the descriptions would probably be contradictory and not very accurate, the best description is probably the fatique/hyper one...sorry JumpyOwl, that's the best I can come up with.
It will not allow me to fall to sleep or rest in the recliner to watch TV.

Coffee, Tobacco and Claritin are three things I've noticed make it worse, if I constantly move the legs, I don't notice the feeling near as much. What I'm saying is the feeling is not necessarily compelling me to move them...but there is relief in doing that.

The only relief I have recently is to lay on my stomach in bed with my thighs on the edge of the bed and the weight of the lower part of my legs hanging off, or to almost walk in place in bed or shake them or move my big toes toward each other than away then toward then away etc....

The only drugs that have helped at all are painkillers. Darvocet and Vicodin both have worked pretty well, but I've only been prescribed them specifically for the legs for about two months, three or so years ago, while the Dr...not a Neurologist...was trying to figure it out. When he couldn't, he cut me off and seemed to shy away from discussing the leg problem further. Once in awhile, my back will go out and I will get prescribed a few Vicodin...or a family member will be prescribed Vicodin and if they can't take them or are done with them...I take one a night, even a half is effective, until they run out. Then it's back to the long nights. One thing I've learned though is NOT to ask a Dr. for Vicodin or Darvocet...because they do not like to prescribe them and I get the feeling that they don't really believe me.

This Neurologist that I just found...because of a 12 day Migraine headache that put me in the hospital, is the first Dr. that has been helpful and open about the leg problem. So I have high hopes.

If Mirapex is mainly for a "creepy crawly" feeling...it probably won't help. Which worries me.

JumpyOwl...I am sorry for going on and on about MY problem. I really feel uncomfortable taking up space like this. Also...a lot of the Members problems I'm reading here seem to be far worse than mine. It's just that this is the first time I have ever been able to relate this thing to anyone halfway sympathetic and appreciating of the condition, so once I get going I can't shut-up.

Oh yeah...I'm on 5 mg of Mirapex once a day.

Thanks.
Randy

ViewsAskew
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Update

Post by ViewsAskew »

Last week while on a business trip to New Orleans, my phone rang. It was the new sleep doc. She said the sleep study was not a good one and she wanted me to have a new one at no cost. Well, the no cost part was good, the second study didn't make me too happy! She also wanted me to use the drug regimen I had been using even though I have concocted a new regimen which seems to be better for me (only tried it 4 days, but each one was good).

It went so much better this time. I had a different tech and she listened to me. She allowed me to specify when I wanted to go to sleep. Each time I awoke and sat up starting to stretch, she immediately was on the intercom asking if I was OK or needed anything. I didn't end up going to sleep until sometime around 1 AM (after my first false start when I had to get back up and pace for awhile and take another .5 mg clonazepam) and awoke 3 more times with RLS. I slept without RLS after dawn, awakening several times but falling back to sleep quickly without any RLS. No one bothered me when I awoke any of those times. I finally came into semi-consciousness needing to use the facilities and a new tech said it was time to get up. It was 9:45 AM!!!!!

I am so grateful to the techs for letting me sleep! The doc should get better info. I'll get to see how many arousals I have. I wasn't exhausted like last time when I was summarily kicked out at 6 AM because the tech's shift was up and no new tech was on duty (a holiday thing).

So, next week I am travelling to Seattle on business - wonder what call I'll get from her this time? :lol:

Ann

jumpyowl
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Hello, Anne:

Post by jumpyowl »

That is more like it! I am glad the doctor realized they botched up the test and stood behind making it good. The tech may have fallen asleep (in that case they probably fired her). It's good thing you stood up for your rights. 8) .

I am curious what the frequency of the arousals (or near-arousals) was for you. Either per hour or for the whole night. If it is over 20-26 times per hour then your PLM is severe. Also how many minutes you had of restorative sleep! Equally important.
Jumpy Owl

slyemm
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Question....

Post by slyemm »

I'm scanning through lots of old stuff and found this from jumpyowl ....

"RLS one can have on its own but the majority of RLS patients will also have the leg movements. However, many people can be affected by PLMD and have no RLS (PLMD is much more frequent than RLS from a number of causes."

I'm really confused now! What's the difference? I had assumed all rls people had leg movement - or some kind of limb movement - is this not the case? As I understand all the definitions I can find, rls is an irresistible urge to move legs .... How does that differ from plmd?

Thankyou!
Simone

ViewsAskew
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Post by ViewsAskew »

Hi Simone,

You've been doing a lot of reading! Glad to see you doing all this posting.

PLMD and RLS are two separate disorders. RLS consists of sensations and the urge to move the legs while you are awake. The movement is voluntary (have a weird feeling, have to move the leg to stop it). Some of us say that the movements are involuntary, though. See my paragraph below for more about that. Some people have this in other body parts (for me, arms, others even in their trunk). There seems to be a 'type' that occurs with pain and one that occurs without pain.

PLMD is when you are asleep and you have rhythmic leg movements (toes, ankle, knee, or hip down) are regular intervals. These seem to occur mostly during the first half of the night when you are supposed to be getting deep sleep.

People who have RLS also have PLMD in about 80% of the cases. But PLMD can occur with many other disorders, too. So, if you have PLMD, there is only a small chance that you also have RLS, as you may have it with many other things.

To further complicate matters, there is also myoclonus, which is another movement disorder. www.wemove.org has lots of info on it. It may occur while awake. It causes involuntary leg or body jerks.

I don't think anyone really knows the true differences between all of these. Since you are reading all these posts, you'll notice that there is an incredible spread in symptoms between us, and I don't just mean frequency. Many of us have very different experiences from each other. Jumpy is trying to tabulate and correlate all of it. I'm not sure what the common denominator is; to take a wild stab, maybe that all of us do or can have our sleep affected, prevented, or interrupted by some type of leg/arm/body sensation or movement. This may occur while awake or while asleep, it may or may not be involuntary, and it may or may not occur with pain.

Just my layperson 2 cents!
Ann

becat
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Great

Post by becat »

View,
I think that is an awesome explantion.
May I add that anyone new is welcome to help out Jumpy and take the online survey. It's worth the time, it's all for us.

slyemm
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Post by slyemm »

Done!

ViewsAskew
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Post by ViewsAskew »

OK, I'm back to the funk. I thought I had a regimen that worked; well it did work for almost 3 weeks! Not meaning to whine, becasue the RLS has slowly been getting better since November. Getting off the high (for me) doses of Mirapex helped tremedously. But nothing I try will let me stop it completely. Without at least a little bit (.125), I thrash all night long. So, I moved times around, added a little neurontin, took less of the clonazapam, and it worked great! But 5 or 6 nights ago, it worked less well. Three nights ago, I was up most of the night. I tried subbing Requip for the Mirapex 2 nights ago (a little over 2 to 1) thinking I was getting tolerance and not willing to up the dose knowing what happened last time I had to do that. Not too bad that first night, but definitely had rebound the next day from the Requip. Tried same last night. I had severe rebound today and have had RLS most of the day. Tonight the clonazepam is not touching it. I just took the Mirapex, guess I have an hour and a half to two hours before I see what happens.

This is when I get extremely anxious. I keep thinking about the appointments coming up with the new doctors and wondering if they will be any different. Will I have to fight with them? Will I know more than them? Will they blow me off when I say that I do not want to be on a DA at all for a long, long time? You guys know the drill. I know worrying about it will not change the outcome, but I want it so badly to be different. A long time ago, I read something about changing "gotta haves" to "preferences." I'm having a hard time making this a preference! Because I know what it means if it doesn't work and they won't work with me

On two other boards they have been discussing Provigil a lot. Anyone here try it? At the very least if I can't get meds right, maybe this will help me on days when I HAVE to look alert and functional when I meet with clients. I don't like the idea of not getting meds to work, but at least if I can function when needed, that sounds like something I can live with.

Ann

becat
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((((((ANN))))))

Post by becat »

Your not being strange to me. I got that lump in my throat everytime I was a week or so out from an appt.......I just hated going to see my doctor and telling him, yet again, nope doesn't work. That look on his face.. :shock: or :x It does begin to work up and the hopefullness is almost worse. I like you just wanted some relief.
I know your truely educated about this disorder. I also know that your able to fight any doc that comes your way. Even if yu haven't in the past, you will. I so wish you didn't have to. Or anyone else for that fact.
Ann, you may have to change the way you see this RLS stuff. You deserve sleep and some bodily peace. You really do have to have it to keep up the job you have. The travel alone would bury me. It's VERY OK to say HEY, WHAT IS THE DEAL HERE?
You know the medications and the treatments out there. You've tried like all of us (probably) to self discover your own path. Your body may have had enough of the DAs for now. Mine did.
Have you thought about what might work for you. Knowing your own bosy, is there something you might like to try? Is there a dream list of medications for you? It's just a thought, I'm sure you've gone over in your head a million times.
NEVER THE LESS, we're with ya girl.......I'll wear my fingers out with cyber hugs and atta girls til you find something.

cornelia

Post by cornelia »

Ann, I think I'm almost in the same boat as you are, but I can still up Neurontin a bit and after that I'm at the end of the Algorythm, except for narcotics.
But I at least have an understandable neuro and I know he will give me methadon when nothing else works anymore, whereas you have to fight for your meds.
Maybe you can suggest to your neuro that you want narcotics only for a month or two, just to get a drug holiday from the DA's. You can explain that they probably will work fine again after the holiday.
It's just a thought.
Dr Buchfuhrer answered a patient this week that nobody has to suffer anymore with RLS with the available meds nowadays. Though I think he is a bit too optimistic.
As for Provigil: that's exactly what I will ask my neuro in March. The DA's take away lots of my energy (something very different from fatigue) and I thought that would be nice for days when you have to be active.
Anyway, I wish you a better life with RLS.
Corrie

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Post by ViewsAskew »

Hi Corrie,

Just to see what he'd say, I emailed Dr Mark B last night. He mentioned that just because I got sick from hydrocodone wouldn't mean I was allergic to all opioids. That's good news. Because if I can't take methodone or Ultram, then it's taking third tier drugs that have been reported to help some people occasionally! My bathroom already looks like a pharmacy with all those bottles of stuff that didn't work!

Like Becat mentioned, I'm also planning on asking for specific things. Guess I'll see what happens. In a way I got lucky - I see both the doctor that did the sleep study and a new neuro in the same day. Maybe between the two of them I'll get what I need. I want to try the Provigil, too. I can't afford to lose more work because prospective clients see me as fatigued or tired. And it's just darn hard to do the work when I am!

Here's hoping at least some of us had a good night's sleep last night! I actually didn't do too bad after I finally got to bed. It was just the 8 hours leading up to it that sucked :? .

Ann

cornelia

Post by cornelia »

Good idea, Ann, to e-mail dr. B, he is a wonderful man. But still I think he is too optimistic to suggest that everyone nowadays can live normally with even severe RLS. Because that would suggest that all on this board struggling with this disorder have the wrong neuro's. Do you agree?

It really was good news that at least you can try, when necessary, other narcotics. I know dr B said somewhere that it is actually almost not possible to treat severe patients without narcotics. I feel that he is right.

I have upped my dose of Neurontin. In daytime I was always very happy with Tramadol drops, but it doesn't work anymore, it only makes me feel more human. I agree with Neroli from another group, that Tramadol works wonderfully for RLS, but not for PLMW (while awake). In the first years living with RLS RLS was the worst, not that has changed to PLMW.

I think that we will have to rotate meds. Narcotics will not help forever and I have learned from my neuro that once tolerance develops, you are in big, big trouble.

Bye, Corrie

ViewsAskew
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Post by ViewsAskew »

Wow, looking back this post started on December 6th. Today it is very different. I saw two doctors today: the sleep doctor and the neuro that the other neuro referred me to (if you can follow that!).

The results of the sleep study show PLMs even though I was taking clonazepam and Mirapex the night of the study. I woke 3 times because of RLS. I had a PLM index of 24.4; the PLM index with arousals was 14.7. It said that slow wave sleep was absent and the REM was decreased and latency to REM was significantly increased.

The sleep docs advice: keep it as it is for now, wait until the ferritin is at 40 - 50, if it doesn't go up, then see a gastro of hemotologist to see why, and if it does, then go off the Mirapex and try cabergoline.

Then I say the new neuro. This is the 3rd one. I liked her right away, thank goodness! She was able to make short work of my history, listened, and was open. Her advice: keep it as it is now, wait until the ferritin is increased, then see. She wants me off the Mirapex, too, but is concerned that such low doses of all these drugs seem to have extreme side effects for me. She didn't want to try drugs just to try them. She is willing to switch to opioids at that time if the increased ferritin does not stop the RLS.

All in all, it was a good day. Nothing has changed for now in my treatment, I still have relatively poor sleep (but at least usually sleep through the night at this time), but I felt listened to. And I felt that both of them were really trying to do the best for me at this time. Waiting for the ferritin to go up is not my first choice, as I want instant relief, but it makes some sense to do so. It's better to have that work than to continue taking meds without knowing if that would have worked.

I'm off to a yoga class. One of the things that had definitely made my RLS better is getting back into a regular exercise routine. I had stopped when I became so fatigued. Now I am working out 5 days a week: yoga, Nia, weights, water aerobics, and a stretching class all at my local YMCA. The first two weeks were hell, but now that I'm used to it and not sore, the RLS is definitely improved.

Ann
Last edited by ViewsAskew on Fri Feb 11, 2005 5:22 am, edited 1 time in total.

lyndarae
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Post by lyndarae »

ANN, WOW YIPPIE!!!!!! Im so glad to here you had a great visit today. Sounds like you finally found the right one.YAAAAAAAAAA. Was the sleep study what you thought it would be? Or have you had one before? From everything I have heard about them I wonder how anyone could sleep at all. Well Im off to Red Lobster, my first date in 3years!!!!!!!IM NERVOUS AS HECK AND ITS MAKING MY FEET SIZZLEhehehehe~~~~~~~~~~~Lyndarae

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Post by ViewsAskew »

A date? Congratulations!!!! It's tough to go out and do that after you're 16 :wink: . Seriously, if you are over your 20's, have been divorced or ended a long-term relationship, have gone through major life changes (like Program), have a physical problem, etc., it makes it SOOOOO hard. Hope to hear that it was great, regardless of how it turns out.

Yeah, I knew what to expect in the sleep study as I'd had two others. This one was done well.

Enjoy that date!

Ann

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