pirde and wed

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rthom
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pirde and wed

Post by rthom »

I was wondering if folks might take a min to talk about their experiences with the affects of wed on their pride. For instance recently i find myself making alot of mistakes in my dealings with others due to the frustration and lack of sleep, so i'm always appologising for stuff (too much) and that affects my personal pride. If i don't acknowledge the mistake it's wrong if i appologise when it's understandable it's not right either. Either way it's culminating with me feeling less worthwhile and confused about what to do. :roll:

Polar Bear
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Re: pirde and wed

Post by Polar Bear »

I find that the symptoms of wed and also lack of sleep affects all aspects of my life be it social events or day-to-day stuff.
However I honestly can't say that it has affected my pride at all.

If I have reason to make a comment such as '' ooops, sorry folks, but I have to stand up here, neurological movement disorder and all that !!!'', I am saying sorry as a courtesy but not as an apology - if you get my drift.

If I'm weary and exhausted (I''ve also got fibromyalgia), then I just say ''' I'm wiped''' no point in trying to be 100% when not all cylinders are charged.

Symptoms from wed and insomnia affect us in a pretty negative manner, but I don't apologise for them to anyone.
I may be frustrated/weary/fed up/climbing the walls with wed symptoms, but it doesn't make me feel any less worthwhile.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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rthom
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Re: pirde and wed

Post by rthom »

I am glad to hear that.
I don't feel that it should affect "my person" but get confused (especially when exhausted) about how to not have it affect the lives of others i care greatly about, more than is absolutely necessary. Thus the apology thing. So i'm really exhausted, over-talkative, short in the grain or not paying attention to the needs of those i care about and feel that it's important to acknowledge them and their feelings' importance--so instead of waiting for someone to approach and say hey you owe me one --i just apologize for my shortcoming right away. Proof that i am paying attention and i do care.
Does this make sense --or sound familiar?
It's my reality and partly theirs but why should their lives be made hard by mine? They love ma and will stay no matter what but that's part of the problem--i need (sane or not) to shield them from my reality, it's my responsibility as a human being to do so (family or not).
I was insane for the first time in my life and it was a sleep thing, while awake i saw horrible terrors and am working hard to never have that experience again, for me and mostly my family.
I don't feel responsible for it just responsible to have it not affect them.
P.s. I'm a bit of an idealist--I only want the best for them--truly. :think:

ViewsAskew
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Re: pirde and wed

Post by ViewsAskew »

You can't help it affecting the lives of others...it just does.

Just like having diabetes does. Or any other chronic disorder. Accepting that was one of the hardest things I've ever had to do.
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.

Chipmunk
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Re: pirde and wed

Post by Chipmunk »

The problem is when I fall short at work or at home because of the effects of WED. People understand how things are harder for you when you have a broken arm or whatever. But when they can't SEE anything wrong with you it's much more difficult to not feel like people think you are a f--k-up instead of someone living with a brutal disease. :(
Tracy

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

rthom
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Re: pirde and wed

Post by rthom »

This is so true--yet those same would tell you the'd understand if a person couldn't perform under those same conditions---if they're talking about an unacquainted person. And likely be really empathetic about it. It's hard to figure it out sometimes. :roll:

Chipmunk
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Re: pirde and wed

Post by Chipmunk »

rthom wrote:This is so true--yet those same would tell you the'd understand if a person couldn't perform under those same conditions---if they're talking about an unacquainted person. And likely be really empathetic about it. It's hard to figure it out sometimes. :roll:

It seems as though it's all good in theory but the practice of being understanding is lacking a bit....
Tracy

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

badnights
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Re: pirde and wed

Post by badnights »

I think as far as the pride goes: we have to lose it.

Enough things happen to you, it humbles you. People putting up with you and loving you despite your never-ending problems is once of those things. Very humbling. Yes, we try to keep our problems from affecting them, but if they're at all close to us, our problems are bound to affect them, and then yes, we try to let them know we're aware that it's affecting them, and that we feel bad about it. I don't really know the right way to do all that. I know it's hard. I think it involves losing the pride.
Beth - Wishing you a restful sleep tonight
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rthom
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Re: pirde and wed

Post by rthom »

I work with dogs and as a rule we don't allow dogs (especially puppies) to live with the same types of stresses and so on. In my case i'd be euthanize d for compassion and in the case of my family especially the kids the'd be removed so they can have a quality life, survival is just not enough. So why are we encouraged to keep those we love in a situation we wouldn't keep a dog? (not that dogs deserve less--i love dogs) I've just not been able to get my head around how it's good for them. I know they have choices, it's every ones right, but don't we all need help now and again (forcefully at times) to make choices that are better for us, especially when we get stuck? This seems to be a stuck thing. Still in love but stuck in life.
Get what is confusing?
P.S. i grew up on a farm we put down a lot of animals for compassionate reasons and split up animal families to improve the welfare of some.
P.S.S. it's not about offing myself--no worries. I just feel that i'm doing wrong for everyone, and it's against my nature--niggles away at me.
Sorry about the neg content.

Chipmunk
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Re: pirde and wed

Post by Chipmunk »

But even dogs are not euthanized when there is hope they can get better. And there IS hope for you. Look at all the people on this board. We're all here because we have been in your situation of feeling like we are at the end of our rope. A year ago I told my husband that I felt like I was not ever going to be able to contribute to society again. Now I found a med that really helps and I'm doing much better. You will find something that helps you too. I KNOW you will. ((hugs))
Tracy

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

rthom
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Re: pirde and wed

Post by rthom »

Thanks for the encouragement, I didn't mean to sound as though everything is hopeless, i'm just tired of contributing on some level , to making those i love's lives difficult and unhappy. It's so not what i expect or believe me to be. :oops:
any way, it was nice to read your post at this time--i just got back from the dr's.
I was going to ask a question about a med i'm not aware of. We agreed to putting me back on hydromorph--a small amount (i didn't want it) but we both agreed that short-acting would be best for this situation. Then she re-filled the percacets in case i need thos (if the others are not effective) and lastly a new med called mirtazapine at a low dose. Anyone have experience with this one? Probably should have made a new question in another spot for that though?
She said it should help get me some sleep. (still haven't hit the 3 hr mark and i lost count at 10 days, after 2 it doesn't really matter though i think. :roll: I told her i wanted to try to get my diet back on track first (instead of the meds)--she was supportive of the changes but because of my high bp wasn't ok with it instead of the new med. Sleep really is required now. I agreed with the idea--just don't want the drugs. (am having a bit of a hissy-fit about it. :shh: ) I have this great plan, no drugs, (just clean healthy life), and no WED or PLMs. Thus the stress, i get it just don't want it, must be another way.
P.s. I also took the time at the beginning of the appointment to remind her of my test results so that she knows what she is dealing with (with all her patients how could she really keep remember?)
Just throwing that out there as a reminder to others as well--it was very helpful to us both today and got things off on the right foot! every pun intended!! :mrgreen: Maybe we all have to take the time to refresh their memories every so often.
She also re-did my blood tests and i expect we'll find my ferratin levels to be fine to high. Was hoping for the improvement that others have spoke of with the iron. We couldn't however get the vitamin d re-tested (it's not covered anymore, i'm in ontario canada--if that applies to anyone else)
I have a very bad allergy to nickel--this includes food, About 70% of our food has it in it lettuce too. I've been not paying enough attention to it so i need to get my diet back on track, it's horribly expensive to feed me though with this. No canned goods and about 70% of others off the list. any canned goods in the plastic jars are about 3times the amount. Ouch!!
Anyway with a family and new house finances you get it. I really did feel better before when i was more careful, don't remember whether or not it helped the WED but we'll see.
Gleam what you can use and have a great day.
P.s.s I really am lucky to have my dr. Sorry for those of you who don't but just know they are out there. 8)

ViewsAskew
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Re: pirde and wed

Post by ViewsAskew »

A continued lack of sleep colors my world black. No color, no humor, no warmth, no joy. Many of the things I like about the essential me are no longer in existence.

Per the mirtazapine, is she suggesting it for mood enhancement? It's not for WED. According the "CLinical Management of Restless Legs Syndrome," mirtazapine, "classified as a noradrenergic and specific seratonergic antidepressant, has been linked with worsening RLS." It may not cause it to worsen for you, but it's not going to help the WED go away so you can sleep.

rthom, have you tried other opioids besides the hydromorph and the oxycodone? I've tried hydromorphone, methadone, oxycodone, tramadol, and oxymorphone, if I remember correctly (IIRC).

The side effects are dramatically different to me. Hydromorphone was one of the worst in terms of my mood - I as on edge, cranky, teeth-grinding, and snappish. It also was bad because I needed another dose in just 3 hours, 4 tops.

Methadone is, by far, the best when it's in my system. It lasts for 10-12 hours for me (doesn't for everyone). It improves my mood, much like tramadol. It makes me feel, well, normal. My brain works well, I think clearly, I have energy - I feel like the me that existed before this got crazy.

My point? Guess it's just that there are a LOT of alternatives. Unless you've worked through all of these (and there is still levorphanol and the fentanyl patch that I haven't tried to add to the high potency opioids I have and listed above), you don't have to settle for the hydromorph if it causes difficulties for you.

Why are you both thinking that a shorter acting one is better?

As I mentioned before, even if these don't work taking them alone, there are also other ways to be creative. Like me alternating a dopamine agonist with an opioid. I avoid the worst of both of them, and get the best of both (in terms of my system and how it responds to them).

You have a great doctor. I bet she'd support you in trying some more creative approaches. As you said, you need some sleep right now. If you haven't tried methadone, it might be an option for just a week or two to see if it helps you, simply because if it does, you're likely to get at least 6-8 hours of sleep without needing to dose again. You can't do that with hydromorph. Once you've slept, you can reassess.
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
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: pirde and wed

Post by rthom »

Hey, That's just sad that the real you is no longer there. I can relate though--thus my little rant.
The Mirtazapine is supposed to get me some sleep--i did ask her what type of classification and either she danced around the question or really didn't know, my bets are on the dancing (i would have tried it anyway--in the spirit of working with her). Anyway it's good to know what they say, means i'll be able to catch on faster if it does go south.
I wanted the short acting Hydromorph so i can control the time and amounts of it better--like you it made me a very different person when i was on it last--but i was getting sleep-- and in my case i need to focus on that first.
I also tried Fentynl but for something else-- i did get sleep but it kept needing to be increased often, then i was either out cold or not really having an effect--for this reason i'm not sure what it did for my rls--deep down when i think back i think it made it worse for me (not sure though).
I've tried a lot of the list you provided and think i'll be trying your way next--on one day and another the next, i just don't know what the other is.
The increased sensation that came about when i tried the Requip the past few weeks (a week ago, three weeks previous) is still bad very sore last night--i hope it settles even a bit. So i don't want to use that (seemed to be helping for a few days). Mirapex just doesn't do much at all for me.
We are going to try Tramadol (I've taken it before for pain but don't remember the rls effects.
I've often thought of the methadone but it requires me to deal with another doctor for that and the same one for the rest, not something i'm very comfortable with.
Your right about the Hydromorph and the sleep, it's not going to help me get a few hrs of sleep, but for now it will help me stay asleep for more that 4-15 min at a time--usually like 40 min, which is a welcome thing right now.

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