update

For everything and anything else not covered in the other RLS sections.
Momo
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Location: NH, United States

update

Post by Momo »


i have been complaining about no sleep lately. just figured i'd give an update. Because i am miserable right now so RLS is like the only thing on my mind.
i went to a new doctor about rls on tuesday. actually, i used to go to her but switched when i was 12, but finally came to the conclusion she is the best dr. in nh.
she is taking blood tests on sat. for my iron, thyroid, sugar (because i am also suspected for diabetes), phosorous, and a few other things. so i have to wait for results . . .
but tonight i am miserable, and i need to get a good nights sleep, i don't know what to do. i just started school today and was like a zombie cuz i got like no sleep last night due to my legs. ... and i still don't have any meds for it :(

i don't know what to do, or what i am even expecting from typing this. but i figured i would vent and it would maybe make me feel less alone.

all i have to say right now is this sucks.
:( :(
ok, i'm done.
thanks for reading this pathetic whining.
~Momo
Never go to a doctor whose office plants have died.

Aiken
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Post by Aiken »

Hi Momo,

Make sure the iron test is for "ferritin", or it may not tell you much about your RLS. There are several iron tests that check different parts of your iron system, so you want to be sure you get the right one.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ctravel12
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Post by ctravel12 »

Hi Momo please never apologize for venting. We are here for you and do not mind listening.

I am glad that your dr is taking b/w for your iron, sugar etc. Is she taking the b/w for just iron or iron deficiency as that does make a difference?

Please keep us posted on what the results and that you get the sleep that you so dearly need.
Charlene
Taking one day at a time

Sojourner
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Post by Sojourner »

M, Hoping the rest of your night went better.

M.
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ViewsAskew
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Post by ViewsAskew »

Glad you are seeing someone you trust. It sounds like she's taking you seriously. Did she tell you what she thought about the RLS? I mean, it's great she's taking tests, but I wonder why she didn't do anything right away to help you...It may be a perfectly valid reason, but I still am wondering as it sounds like you're really in a tough place. Did you tell her how hard this has been for you? I know sometimes I don't want to say things like that because they might be misunderstood or I might seem like a whiner, but they can't know how miserable we are if we don't stand up for ourselves.
Ann - Take what you need, leave the rest

Managing Your RLS

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SquirmingSusan
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Post by SquirmingSusan »

I'm wondering along with Ann why your doctor hasn't prescribed anything for the RLS. RLS is diagnosed by the doctor taking your medical history; there are no tests for it. Yes, a ferritin (stored iron) test is useful for RLS patients, because low ferritin can make it worse. But it seems like nowadays, when people go to the doctor and talk about their RLS, at least they get handed a starter pack for either Requip or Mirapex.

When do you see her again?
Susan

mackjergens
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Post by mackjergens »

have you tried soaking legs in a hot bath?? Sitting in a rocking/recliner chair using legs to rock, until they become quite then just lean back and go to sleep in recliner, because if you walk to bed, your rls will likely kick back in. For me its always just easier to get up and get busy doing something, since stressing/tossing/turning only increases my rls.

Those are the only things I have found to help me before I was given meds to control my rls. I have taken as many as 3-4 hot baths in one night, just to find relief for a little while.

While waiting on the test results, please read as much as you possibly can about the pros/cons of RLS. Know the meds NOT to take because they can increase your rls, know the foods to avoid, there is just so much to learn and educate yourself about RLS, things most Drs know very little about, so the more you know, the better treatment you can find for yourself.

keep us postes as to what the Dr tells you.

Polar Bear
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Post by Polar Bear »

I hope you find some sleep soon, good luck with doc. What about taking the mayo algorithm with you. Docs seem to take heed of it.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Momo
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Location: NH, United States

Post by Momo »

yea its for ferritin, not iron

she's the kind of doctor that likes to test all her of her variables before making a decision, which i think is good, just not helpful at the moment.

also, i came to her with a plethera of problems. so i think thats why she was hesitant to act immidiately on my rls. like i said before... i might be diabetic which is actually a bigger concern at the moment then my legs. also she suspects i might have a problem with my thyroid (? whatever that means?), so i think she just wants to be careful, so that she doesnt prescribe something that will mess with something else. which i am gracious for.

my night wasn't as bad as i had intisapated, i got about 2 1/2 hours of sleep, still not a whole lot for a teenager in advanced classes, but i managed.

i find that hot baths offer only tempory releif, and their is only so much time i can spend in a bath tub before my ADD kicks in. my bath tube is not very entertaining.

also the rocking doesn't help unless my syptoms are really mild. and lately.. the're not mild.

but thanks for the suggestions.
Never go to a doctor whose office plants have died.

ctravel12
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Post by ctravel12 »

Please do keep us posted as I am concerned about you not getting enough sleep. 2-2-1/2 hrs is not good. Have you mentioned this to your dr?

Please let us know what she says all about the test results and if she is going to do anything for your rls.

Just being concerned.
Charlene
Taking one day at a time

Polar Bear
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Post by Polar Bear »

2 1/2 hours sleep, not good enough. We can't do anything properly without enough sleep.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
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Post by Polar Bear »

Momo, I just realised I maybe sounded a bit abrupt in my last post.

Just wanted to say that I tried to cope with 3 - 4 hours sleep, and full time work, and eventually it all catches up. Take care and seek help with the sleeping.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Momo
Posts: 58
Joined: Sat Jun 21, 2008 12:18 am
Location: NH, United States

Post by Momo »

so i got the results of my blood test yesturday. everything came back negitive. my iron (ferritin) is, my thyroid is fine,i'm not diabetic, and all the other things thet tested are fine. which sucks, cuz that means i still don't know anything. so my dr. is sending me to a neurologist. sounds like fun *sarcasm*. has anyone else been to a neurologist for rls?
that still doens't help with my constant thirst, hunger and headaches. but idk. i haven't actually gotten the chance to my dr. cuz my dad took the call. so i don't know what she plans to do. . . .

plus i am still without meds, i wish she would just give me something, and i am usually the kinda person who wants to find alternatives to prescriptions. ...

... and kinda feel like just giving up on it all and putting up with it. in essence... i feel defeated.




....could depression cause/increase/worsen rls? because i have been feeling really depressed lately (like the past month and a half)

Neco
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Post by Neco »

You might want to sit down and think about what to do next.. It sounds like you are becoming desperate for help. Going to a neurologist may be a good next step, as they tend to handle RLS more often than GP's do from my understanding..

However that is probably a whole new bag of worms.. You'll likely be put through the medicine treadmill where they will want to give you anything but opiates, even after all the other meds are possibly proven ineffective..

I don't mean to scare or upset you. There is a good chance Requip or Mirapex could work just fine for you, maybe even clonazepam. But if they don't, or you can't even get them to give you ANY of those meds; be prepared to do some hard research and start contacting doctors you can find who list themselves as able to deal with RLS, or RLS experts.

If you can get to California rather easily, it might be worth it to try to see Dr. B also (www.rlshelp.org)

I have also dealth with varying degrees of depression, and personally I don't see how it could effect RLS, unless your depression is causing you to display anxiety / you worry about your RLS and it is always on your mind, etc.. Constantly thinking about RLS probably does make it worse more often than not, as with many other illnesses.

Whatever you do however, DO NOT let them stuff anti-depressants down your throat unless it is possibly Wellbutrin, or maybe even Luvox.. I can't endorse them either way but my experience with Luvox leads me to believe it didn't effect my RLS one way or the other.. However since I also take opiates it is also hard for me to tell overall since any irritation brought on would likely be covered up by the opiates.

Wellbutrin is thought to be an RLS friendly drug, so may be worth a shot, and if you are currently taking any anti-depressants (doesn't sound like you are) you may want to consider stopping them for a short while to see if your RLS improves..

Try eliminating caffeine and artificial sweeteners from your diety also. If you smoke, try to cut back or stop. Smoking irritates my RLS even when I am fully medicated sometimes. And when I has none in the past, it was brutal and instantaneous with every inhalation.


My advice to you, if you are not being treated for depression and DO NOT feel suicidal.. Don't tell ANYONE in the medical field unless it gets super bad or until you secure medication that works but are still severely depressed. Unless you are willing to gamble depression meds making you RLS worse, when doctors find out an RLS patient is depressed they almost immediately give RLS a backseat and claim the patient is simply depressed and needs treatment, instead of recognizing that the depression is likely CAUSED by the suffering the RLS patient is going through because of their symptoms and lack of sleep. I think I've even seen posts on the net from peoples whose doctors claimed the RLS was caused by the depression, or flat out downplayed the RLS and tried to make the patient forget about it by continually bringing up the depression

Aiken
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Post by Aiken »

Momo--

What was your actual ferritin level? The number, that is. A doctor who doesn't know RLS patients are "special" might tell you yours is okay when it's not okay for an RLS patient.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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