Is it really that bad?

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rthom
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Joined: Sat Dec 31, 2011 3:03 am

Is it really that bad?

Post by rthom »

Why is it that this thing that hurts/ causes wigginess etc. is enough to send me/you into an emotional tailspin almost immediately? I have had some hard nights recently but last night was something i hadn't had for a long time. I spent most of it trying to change my point of view, and pleading in my head for either to be shot (not suicidal--just my way of thinking) or for someone to be on the pc to listen too or talk to. Anything to help take my mind off of it.
My symptoms were very strong and also in my arms 1 more than the other and on that side it was really strong on my chest wall over my ribs as well. To the point of being nauseous from the feeling of the muscles moving across my ribs. Very "icky" feeling.
So back to the question, yes it's really bad but why the emotional response being so strong, I know it will improve etc...
It's different at night as well, yet it also doesn't seem enough to make me feel utterly hopeless. I don't respond that way to anything else--why this and why can't i get a grip on it?
More to the point is this the response from most that have the long nights?
It's like a light switch all is fine and then at night it'll never be fine.
My normal response to this kind of stress would be to know it sucks and complain in my head about it some and then to just wait it out knowing it would change. But this seems to have a set of emotions all its own or something. I often wonder if this thing is where they got the story idea for jeckel and hyde. :lol:

Polar Bear
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Re: Is it really that bad?

Post by Polar Bear »

Some times late at night, being the only person in the house/street that is awake is horrible, because we are not awake from choice. Everyone else (it seems) is in the land of sweet dreams with no worries, no stress, and no wigggggggggly and horrible sensations that are out of our control.

In the middle of the night things always seem worse, I don't mean that your symptoms seem worse than they really are, I mean the act of coping is at times more difficult, we feel we are alone, and all these other folks with their sweet and beautiful dreams haven't a clue how bad we feel.

I remember once feeling so sorry for myself, hubby was fast asleep, I was walking the floor during a bad time when I had been getting about 3 hours sleep a night for months on end. I can recall looking down on him and just wanted to waken him, reckoned it wasn't fair..... """"just look at you.. don't you realise how I am suffering.... how dare you sleep like that... """""" All this I was just saying to myself, thinking it really, i so just wanted to prod him awake and make him see how I suffered ... kind of... lets both suffer.

At the worst of times it is indeed an emotional tailspin.
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: Is it really that bad?

Post by ViewsAskew »

I may not quote these correctly....

but a few years ago I read that people with WED are 2-3 times as likely to suffer depression and up to 10-14 times as likely to suffer from anxiety.

I think it's because when the WED is doing it's thing, our brain chemistry is out of whack. Too much of one chemical, not enough of another - that's a recipe for emotional instability!
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.

rthom
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Re: Is it really that bad?

Post by rthom »

This makes mmore sense to me because for me it's not at all like PB suggests. This suggestion from PB is for me the norm for normal daily depression or high stress, like a lot of family/relationship troubles with deaths and job losses piled on top--that sort of thing. But this is far different. It comes on far faster and is exceptionally stronger feelings that continue in it's path even if I am aware and engaged in positive thought processed. Like i know and truly believe at these times it's only temporary and i'll fell better in a bit. Normally I'd feel a little better but with this i not only don't feel any better but i continue in a downward spiral without seemingly any control over my emotional state. Then it follows the same pattern each time as my emotional state just takes a u turn and a feeling of well being take over me. (Not a high just my normal state). The feeling of well being is how it feels in comparison to the previous minutes feeling--not a heightened state.
Make sense?
Any one else have this extremes happening everynight and return to normal just before the WED gets better in the morn?

Polar Bear
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Re: Is it really that bad?

Post by Polar Bear »

I wouldn't have such rapid fluctuation of emotions as you describe and it must be awful to try deal with this on top of the usual symptoms.

What Ann cites regarding wed sufferers being more likely to suffer 10 - 14 times anxiety....... I can certainly relate to that.
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: Is it really that bad?

Post by ViewsAskew »

I do have the rapid escalation of anxiety - it really sux. I hate it almost as much, if not more, than the symptoms. It how I feel when it spirals out of control that is truly awful.

Others have mentioned a similar feeling, too. Not sure how many of us get that, but enough that it's been talked about. And, that's too many!
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.

Rubyslipper
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Location: Missouri

Re: Is it really that bad?

Post by Rubyslipper »

I have talked to very few people who do not have this problem. Most things seem worse at night but with RLS/WED it is severe. I think Views has it right when she says that it could be a chemical imbalance in the brain. When my legs start up I just panic. Why? I know I will survive although tomorrow may be rough. I think that is why it is good to have something to occupy your mind when this starts. Posting on here, reading, crossword puzzles, anything that can help you relax your mind--take it away from the anxiety. It won't help the legs but maybe make it a little easier to cope.

As for needing someone to talk to in these late night/early morning hours...I would love for the Foundation to be able to offer a "hotline" for times like those. But it just isn't feasible. I don't think anyone would want the responsibility or the interruption of their sleep no matter how much they would like to help. It would have to be someone with RLS in order to understand and if that person was getting some sleep for a change, they sure wouldn't want it disturbed. However, I am still thinking on the problem and it isn't a dead issue yet. Any thoughts on this?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ruxtonvetmhk
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Joined: Tue Mar 13, 2012 12:51 am

Re: Is it really that bad?

Post by ruxtonvetmhk »

Yes it is really that bad. None of the medications seem to work without serious side effects. At times it feels hopeless. I have never cried so much in my life ( I am 69 - I guess I would have to exclude the first 5 years of my life). I am now at the stage where I am trying multiple medications which does seem to help. I have an excellent internist,a neurologist who specializes in WED and a psychiatrist. It seems like this is just one disease that for some people can only be partially controlled. Opioids work fine except for addiction and then withdrawal issues ( if one considers living in a slight fog and constantly fighting constipation fine ).

rthom
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Re: Is it really that bad?

Post by rthom »

:mrgreen: Hey Ruxtonvetmhk

Thanks for the info. I have a thought for you as well. I have a lot of discomfort with the opiods as well but have recently discovered if i eat 2-3 little containers of yogurt a day it helps smooth things out tremendously. This comes as a shock to me as i am also one of those people who have had to avoid milk products or suffer the gastronomical consequences---sweats, pain queasiness, etc.. So a milk product was a stretch for me. Guess it's the micro-organisms doing their thing. Anyway its a great comfortable fix for me. Tastes ok too!!

badnights
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Re: Is it really that bad?

Post by badnights »

rthom : I don't think I get it as clear-cut as you do, but I do get it. The creepy feelings are accompanied by anxiety. My legs and arms are anxious, but the entire me is as well, my mind too.

There must be mood-related systems affected by WED.

Opioid constipation: every single morning I choke down my gruel (I call it an ugly name because it's ugly): 1/4 c. bran (for cooking with; not already processed into a cereal), 1/4 c. (or more) 1-minute oats, touch of cinnamon, water til it's slightly liquidy, if I have time a chopped up apple, nuke on high for 1-2 min, add plain yogurt and raisins, (more water if consistency is wrong, more nuking if it got cold), choke it down. Sometimes it doesn't taste bad.

The apple is on the advice of my doctor (- I love that! My doctor actually told me to take an apple a day! -) because the bran alone does not give enough soluble fiber. Now in one "meal" I'm getting insoluble fibre, solube fibre, and yogurt with all those wonderful organisms that keep our guts healthy.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

dogeyed
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Re: Is it really that bad?

Post by dogeyed »

I found out something about pain and the way it works on the mind. In addition to RLS, I also had compression fractures of three vertebrae in my thoracic spine from a car wreck, it deformed my spine, to where it got into my lower spine, too. With any of the three, I feel pain, diff kinds, but it's all pain. So, one day I asked my neurologist, "Why can't I concentrate?" So, he took his metal paper thing and started to tap lightly on my knee with it, and began to talk to me and explain the situation, that it's hard to think straight when something else is distracting you. Whilst he was doing this, I became very angry, frustrated, and I had no earthly idea what he was saying. And that's when I put all my troubles with anxiety, some depression, panic disorder, and all my pain together, and undersood when it works against the mind, it makes me feel a world of trouble, lots of anger, and I simply cannot think straight at all. Before I got treatment for all my back pains and RLS, I was quite tired, and that can really ruin your attitude for the day.

Anytime you have pain and the frustration of RLS, it's going to drive you right up a wall. I remember one time I put my hands on my back as I walked, and I could feel how the muscles up in the back moved while I put each foot in front of the other, and i felt that frustration build up in me, was quite angry. These days, I don't get as angry as I used to, but rather I get tired. I just get so tired of the whole thing that I don't know what to do. I cannot do the things I used to. And anyway, I hope I'm sort of describing your situation. The thing about RLS that makes it unique, tho, is just how upsetting and annoying it is, like you're going to lose it and break apart and fly off into space. It's a serious situation. No one knows what it's like until they've experienced it, pain or no pain. I can remember myself saying this and others on this board, too, that I wish I could shoot off my legs!!! Yes!! Make it stop!! GG
"It's not how old you are; it's how awful you feel."

Polar Bear
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Re: Is it really that bad?

Post by Polar Bear »

dogeyed: I think you have explained this point so well. I totally get it !!

I agree that sometimes I would reckon that a really severe acute pain would be preferable to the ongoing torture of wed.
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

dogeyed
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Re: Is it really that bad?

Post by dogeyed »

Hey there Polar Bear!!! We're on at the same time! Ummmm, well, I have the severe form of painful RLS, 24/7, and since I can break through my codeine occasionally, and I clearly recall nearly a year of RLS going untreated, I know what both are like. That would be a hard choice to make, RLS or pain. I really don't think I can stand RLS. But pain, it upsets me a lot, too. And I have several different kinds of pain. Hmmmmm. Oh, they're both just awful. Smile. GG
"It's not how old you are; it's how awful you feel."

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Is it really that bad?

Post by rthom »

Hey dogeyed

Yah that is a nasty one you have going there. I totally get and agree with your post. I too have had an accident resulting in back surgery and permanent pain and nerve pain from it. It's like all of the meds do something for the pain but because there are different types in the same place any med changes do something but none do enough. The WED seems to compete with it sometimes. I found shots from a pain clinic helped a lot--but not the normal freezing shots, the streroid ones. One type did not help but the second steroid made a huge difference for me. I always felt that my pain was partly from pressure fluctuations on nerves in the spine. The Dr's did not agree--but guess what--I was right, the steroid dried up the area and each time they do it, the legs and back get better, and don't go back the way it was! Woohoo!
Just a piece of info--if it helps, great.

dogeyed
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Re: Is it really that bad?

Post by dogeyed »

Thanks RTHOM for the tip on steroid shots! GG
"It's not how old you are; it's how awful you feel."

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