My RLS should I get a 2nd opinion ?

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rlsishell
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My RLS should I get a 2nd opinion ?

Postby rlsishell » Fri Sep 27, 2013 6:39 pm

My RLS should I get a 2nd opinion ?
http://forum.rls.org.au/viewtopic.php?f=1&t=1949

THANKS!
Edit by Moderator: post from another board is copied below:
My RLS should I get a 2nd opinion ?
Postby rlsishell » Wed Sep 25, 2013 12:52 am
( CORRECTION GABAPENTIN and TRIAZOLAM is what I take for sleep not FENOFIBRATE and TRIAZOLAM )
It started about a year ago now. I would sometimes like most people not be able to sleep RLS would keep me up maybe once a month. But this past year has been hell ( sleep about 2-3hrs a night) and I just within the past few months started taking GABAPENTIN 300MG - TAB and TRIAZOLAM 0.25MG TABLET before bed. Maybe once a month I have issues sleeping. I just wonder if there is anything I can do to get a 2nd opinion I would like to know why the hell my body is like this now.

• I work normal hours but stay up late with a normal sleep schedule ( 8:30-2AM EST)
• My wife says I only move my legs. Its not PLMD etc. Sometimes I sleep on the floor so I can gyrate my legs or body back and forth etc untill I goto sleep
• I am a male ~32 years of age ~200lbs with mild ADD I only just now started to take AMPHETAMINE/DEXTROAMPHET 10MG on as needed bases ( maybe once a month if that )
• I did not take anything before I went to the doctor. Maybe once in a while take iron pill ( border line anemic )
• I used to masturbate about once a day on average but now I don’t. Maybe once every 3 days or so ( I was reading that RLS has to possibly do with IRON and DOPAMINE levels )
• I have little or no stress job ( work from home mostly) and I am very happy with my job/relationship
• Without the GABAPENTIN and TRIAZOLAM I can goto sleep but I wake up 3-4 hrs later and can’t sleep for about another 4hrs
• I tried exercise ( walking once a day ) I also tried 12hrs of airsoft airsport and went to bed and still had RLS ...
• I tried all other methods only thing that seems to work is a hot hot bath and I can sleep for about 2-3 hours. Nothing else but meds I am able to sleep past that.
Here is what I currently take:
GABAPENTIN 300MG once daily before bed
TRIAZOLAM 0.25MG TABLET once daily before bed

Here are some other meds I am on ( again I took nothing before I had BAD rls ):
FENOFIBRATE 160MG - TAB ( doc said I had high triglycerides
VITAMIN D2 More Information 50,000IU - CAP ( not sure what for I guess I had low D )
AMPHETAMINE/DEXTROAMPHET More Information - 10MG CAP ER 24H ( for ADD again I take it once a month if that .. )

rlsishell

Polar Bear
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Re: My RLS should I get a 2nd opinion ?

Postby Polar Bear » Fri Sep 27, 2013 7:36 pm

I am having some difficulty with this post. Once the content of your link is opened up I cannot post a reply because it seems to link to a different RLS site.

You say things have become bad since you started the medications Fenofibrate (for cholesterol ?) and Triazolam ( for sleep ??)
I am unaware of either of these medications having a negative affect on WED/RLS symptoms.
Another medication that you mention is for ADD.

I will try to recall what you said.......
I am a little confused over the content of your link.
You have mentioned that RLS keeps/kept you from sleep perhaps one night per month.
You then say that you now only sleep 2 or 3 hours per night.
Are you saying that RLS has progressed from one night per month - to every night.
Can you describe your symptoms.

There are 4 essential criteria that are all necessary for diagnosis:
1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" or "burning" to "Elvis legs". Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.
2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting
3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.
4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

The big question is - do you have an irrisistable urge/compulsion to move that will not be ignored.

Have you been diagnosed with WED/RLS.
Have you been given any medication specifically for WED/RLS. You do not mention any such medication.
EDIT:: I apologize, you did mention Gabapentin medication,
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rlsishell
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Joined: Tue Sep 24, 2013 2:36 pm

Re: My RLS should I get a 2nd opinion ?

Postby rlsishell » Fri Sep 27, 2013 10:24 pm

Sorry ADD :)

* I have RLS
* I never took any meds before it started getting BAD in November
* I just started on GABAPENTIN 300MG once daily before bed and TRIAZOLAM 0.25MG TABLET once daily before bed ( past month or so. So I can sleep. I think GABAPENTIN is a common treatment for RLS no ? but alone it was not working so they suggested TRIAZOLAM and that alone was not working so I take BOTH and I can sleep :)

I just wanted to know WHY is my RLS so bad now ... for gods sake.. Most the forums I read some people its just random... what can I tell my doctor to get other oppenion or maybe sleep study ? I just want to know why or if maybe there is some CAUSE ... like I said i used to masturbate 1-2 times a day and I know dopamine may have something to do with RLS. I maybe have sex 1-2 times a week now. I just can't think of anything else that has changed sence november!?

Polar Bear
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Re: My RLS should I get a 2nd opinion ?

Postby Polar Bear » Sat Sep 28, 2013 3:15 am

You have asked the golden question, why is my rls so bad now ? There is not a one of us who hasn't been in this position and most of us have no answers. We are alL so different in every way and it is likely that there are many forms of WED/ RLS. Which means there is no definitive answer.

I doubt very much that your sexual activity would have any big affect. on your symptoms. Although with WED stress and the easing of the stress can play a part.

Why do you want a second opinion, is it to confirm the diagnosis of WED or to provide better medication cover- or both.
Please use the links in my signature, Viewsaskew and badnights. All of these will provide a base for discussion with your doctor.

I'm sorry, its after 4am here in the UK and I have to try and sleep..... I keep nodding off as I type !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: My RLS should I get a 2nd opinion ?

Postby ViewsAskew » Sat Sep 28, 2013 3:47 am

Hey - welcome to the board.

If anything, having an orgasm tends to improve WED/RLS, so you can likely count that out. A few times, it's worsened mine, but it's only right then, not regularly.

Has your doctor done a blood test? You want to know both hemoglobin and serum ferritin. When you get the results, ask for the actual numbers - for some strange reason, we need much higher ferritin levels that people without WED. So, what is OK for many people, is much too low for us.

Any possibility of diabetes, pregnancy (I don't know if you are male or female or too young or older), celiac disease, kidney disease, or any other condition? Many of these make WED/RLS worse. When resolved (such as you have the baby or are following a celiac diet), the symptoms usually get better.

Any surgery recently? Donate blood? Drink more alcohol than before? Taking an antihistamine or cold medicine?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rlsishell
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Joined: Tue Sep 24, 2013 2:36 pm

Re: My RLS should I get a 2nd opinion ?

Postby rlsishell » Sun Sep 29, 2013 6:30 am

Thanks for the reply !

• I am a male ~32 years of age ~200lbs with mild ADD I only just now started to take AMPHETAMINE/DEXTROAMPHET 10MG on as needed bases ( maybe once a month if that )

* I am borderline anemic so that is why I used to take Iron from time to time.
* I am do blood work some time so ill ask for thos values they said my triglycerides were like double for my weight etc but I never had RLS BAD before the blood work etc. So I don't think its not iron or the high triglycerides if they were bad they been bad the past 5 years and only have had issues sleeping past year or so ...
* I will check out the links I tried the bar or soap and pantyhose thing ... thos dont work .. ill try anything really even if its crackerjack who cares as long as it helps me sleep

I am actually on my last GABAPENTIN / TRIAZOLAM pills sitting on the couch now with some MAD RLS because i tried the panntyhose trick .. woke up 40min later with RLS :P

ViewsAskew
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Re: My RLS should I get a 2nd opinion ?

Postby ViewsAskew » Sun Sep 29, 2013 7:32 am

Your borderline anemia may be a culprit, even if it was low before and you didn't have symptoms. It could be that your serum ferritin has been slowly going down and eventually it was low enough that you started having regular problems. Interestingly, ADD and RLS/WED often go together. They think it may be that both disorders involve dopamine.

They never run a serum ferritin test unless specifically asked - at least not in the US. Not sure about Australia.

For what it's worth,the pantyhose make my CRAZY!!!!!! I just hate them - thinking about it makes me anxious.

And, I hate to say this, but many times we can't find any cause of the symptoms - they flare, they recede, they come again, go again. Some times they go for years (yay!) and sometimes come back and never go away again (boo-hiss!).
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: My RLS should I get a 2nd opinion ?

Postby badnights » Mon Oct 14, 2013 8:53 pm

I think you were wondering if the lowered incidence of orgasm would have increased the RLS. In answer to that, I don't think the positive effect of orgasm is long-lasting enough to have that degree of impact.

Since things got worse suddenly, it is worthwhile to look for a cause, though you may never find one. An operation? A change in diet? A change in medication (hahah) or OTC supplements? Alcohol or caffeine? Ann's post is thorough already.

I agree with Ann that a gradually lowering iron store could have set it off. Maybe it was worsening slowly and suddenly became noticeable. Your key is the ferritin test. Make sure your serum ferritin is over 100. people with WED/RLS tend to need higher ferritin levels than people without, so labs will say 20 is normal, whereas 150 might be your normal and 200 might be my normal if we have WED.

The literature says exercise in moderation early in the day helps RLS, but I am not aware of any factual basis for this claim. Experience of some people on the board is that a sudden decrease or increase in the amount of exercise one is doing can cause WED to flare up for a few days, until the body gets accustomed to the new rhythm.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: My RLS should I get a 2nd opinion ?

Postby ViewsAskew » Mon Oct 14, 2013 10:00 pm

badnights wrote:
The literature says exercise in moderation early in the day helps RLS, but I am not aware of any factual basis for this claim. Experience of some people on the board is that a sudden decrease or increase in the amount of exercise one is doing can cause WED to flare up for a few days, until the body gets accustomed to the new rhythm.


There was a study a few years ago - about moderate exercise. The group that did moderate exercise had the greatest reduction in WED symptoms. I do not think it was a large study, and do not remember if it was a well-designed study.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rlsishell
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Re: My RLS should I get a 2nd opinion ?

Postby rlsishell » Mon Dec 02, 2013 4:51 am

So its been about 3 weeks without any meds... im not sure what it was .. it could be little stress of work and little stress at home was just nuff to make me not sleep. Even tho I never woke up thinking about anything .. I just woke up pissed off with RLS. I take 1/2 iron pill a day or so now. I dont think it is the iron because it started months before I started taking it. I am just happy as hell and ill take anything I can get ! If it comes back I do plan to do a sleep study because I dont think my wife would even know if I had sleep apnea.

I wish you all the best of sleep! let me know if you guys ever need anything! zzzZZZzzzzZzZZZZz -rmccurdyDOTcom

ViewsAskew
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Re: My RLS should I get a 2nd opinion ?

Postby ViewsAskew » Mon Dec 02, 2013 5:59 am

You know, it takes awhile for iron to build up in your system - very likely it finally built up enough to make a difference.

Glad it stopped, whatever the reason!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: My RLS should I get a 2nd opinion ?

Postby badnights » Mon Dec 02, 2013 8:12 am

wow. Keep in touch about it. Good to hear!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
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Re: My RLS should I get a 2nd opinion ?

Postby Polar Bear » Mon Dec 02, 2013 7:32 pm

Excellent to hear of a positive result - and nice that you came back and updated us.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rlsishell
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Re: My RLS should I get a 2nd opinion ?

Postby rlsishell » Tue Jun 23, 2015 7:41 am

Guess whos back !?! I guess its been a while ... only seems like yesterday it was this bad but its been Nov of 2013.

EDIT: I wanted to say thanks for all the replys! great forum https://www.willis-ekbom.org/donate-today :D

I think the culprit is stress/drinking for me? I have no @#$ing idea.. We had a new baby hes 10mos old. I been fine up untill the last month or so. I have been sleeping off hours and travel/work messes me up.

* I had been drinking a lot more as of late ( because of stress but stress levels are really low now but I think its too late I woke the RLS beast a few weeks ago)
* after travel a month or so I been staying up later then my wife about 1-3am and waking up 8-9am
* after RLS got bad I stopped drinking ( about 2 weeks ago )
* it seems like it gets worse and worse each week
* the stress of having it also makes it worse IE if I goto sleep in fear of RLS ill get RLS
* I have been able to fall asleep and then wake up with RLS (This is new. I think my body/mind is exhausted and lets me sleep for 1hr or so and wakes me up with HAH thought you could sleep ! )
* my wife can lay in bed from 9pm to like 12am and go right to sleep.. I found if I lay in bed for more then like 10-20min that it triggers my RLS. Like my body can't lay in bed unless it is going to sleep.
* I also found sometimes I can lay on the floor if im super tired and sleep past the RLS. I also think being a little warm triggers it faster too.


My game plan:

* try to get wife to get out of bed after shower etc so we are not laying in bed for long before sleep
* no drinking
* back on iron daily
* bike trail 20min once a day ( normally afternoon )
* take meds daily even if I don't feel RLS to maybe get a normal sleep cycle ( baby wakes up at like 8-9 I used to wake up about 10ish )
* do more to help wife/around the house to reduce stress :P ( im a lazy bum )
* get my reporting done sooner so I have it out of my head and don't have to worry about it ( again lazy bum )

Ill drop back in if I figure it out...dammed you RLS fairy! Good luck to you all !

badnights
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Re: My RLS should I get a 2nd opinion ?

Postby badnights » Wed Jul 08, 2015 2:35 am

Sounds like a reasonable game plan, except you might want to check in with your doctor about your meds. Is it still gabapentin you're taking for the WED/RLS? 300 mg is a pretty low dose, and for many people, that class of meds (anti-convulsants) is not effective enough - they need to add another class of med (dopamine med or opioid).

Congratulations on the new baby :) and good luck reducing the stress, I think you have hit the nail on the head with helping your wife out around the house to reduce your own stress :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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