Need good news!

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leggo_my_legs
Posts: 272
Joined: Sun Oct 16, 2016 12:29 am

Need good news!

Postby leggo_my_legs » Wed Oct 26, 2016 8:00 am

Been reading a lot about this illness, most recently heart/kidney info and life expectancy info. I don't like it!!!

And, I'm so tired of waking up feeling like crap every day. So tired of it all, that in fact I said "Oh my god!" in my sleep last night.

Does anyone have any good news to share? Words of hope?

Aaaaggggh! Let them never say I never complained lol!o

ViewsAskew
Moderator
Posts: 14889
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Need good news!

Postby ViewsAskew » Wed Oct 26, 2016 9:14 am

Depends on the day :-). Today, all is not so bad and I've had a relatively good week or two. Ask me when I've not slept for days and everything is a mess...different answer.
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.

Polar Bear
Moderator
Posts: 6885
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need good news!

Postby Polar Bear » Wed Oct 26, 2016 11:35 am

The good news is that sometimes you will have good days, a doctor might actually 'get it' and provide medications that work in dosages that are correct what is best for you.

My good news is that I have more or less accepted what is normal - for me. When I wake up feeling crap I push on. Sometimes that last thing I feel like is starting to sort my hair, throw on some makeup.... and it all takes a bit longer when weary (and older :) But definitely feel the better for it when ready to face the day/public.

I so understand when you say that you are so tired of it all. Everyone here willl know that feeling. Now and again I'd have a few tears of frustration, it doesn't happen often. Generally, I'm dealing with the cards I've been dealt.
If I'm twitchy I use the time to do a chore. If my legs/arms are calm then I'll try and use that time to sit and have a read, or do some crafts.
Working around the symptoms becomes second nature.

Words of Hope - that the day gets better? And it often does. That there are better times as we learn and re-learn to work around our symptoms.
That research will have a break through.
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

leggo_my_legs
Posts: 272
Joined: Sun Oct 16, 2016 12:29 am

Re: Need good news!

Postby leggo_my_legs » Thu Oct 27, 2016 10:24 am

Thank you. My good news, got samples of horizant and neupro, will start trying one fri.

Just frustrating when to try different stuff and haven't found anything yet. I just want something dependable for a night or two here and there, that would really help to be able to intersperse the bad with a restful night at least here and there. I made that request via email of MD but I don't think she really heard it.

Polar Bear
Moderator
Posts: 6885
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need good news!

Postby Polar Bear » Thu Oct 27, 2016 2:08 pm

I have found that when I have something that works for a night.... will give sleep. i.e. Taking a double dose of a sleeping pill (I speak for myself, not a recommendation) - it takes a strong willl power not to succumb and make sure not to do it regularly.
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

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Need good news!

Postby legsbestill » Sat Oct 29, 2016 9:17 pm

Good news! My symptoms were truly dreadful for several months over the summer after I came off mirapexin in the Spring due to augmentation. I think I would have gone mad if it had not been for the support of this board and also Dr B - but they (the symptoms) have moderated somewhat in recent weeks in spite of difficulty finding an effective treatment. I am wondering if this is due to my bringing up my iron levels - from 36 (serum ferritin) in May to 79 last week. I am really hoping it is due to increased iron levels as obviously I can aim to get them quite a bit higher again and I suppose there is a possibility that this will result in commensurate further improvements. Of course it could be just one of those cruel temporary ameliorations one sometimes experiences with rls but for now I am cautiously optimistic.

I suppose one could consider that it is good news that the final treatment for d/a augmented rls is a group of drugs that are capable of inducing quite nice feelings as a side effect ... if one manages to find someone to prescribe them. Though personally I would be much happier not to require opiates ...

Finally, as one post I read from some time ago points out, there are constant advances being made in medical science generally and even from time to time in the understanding of rls and there is always the possibility that an improved treatment will emerge. I certainly find it easier to access information now than when I first started treatment for the condition 14 years ago. Dr B reiterates repeatedly that it is possible for the vast majority of rls sufferers to live an almost normal life. That has got to be good news.

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Need good news!

Postby legsbestill » Sat Oct 29, 2016 9:43 pm

Hi Leggo, just saw some of your other posts and realise your problem is more PLMS than RLS so my observations are probably not much use to you! I really hope you find a good solution. It is possible that people who find that their symptoms improve - whether by finding an effective drug regime or for whatever reason, are less likely to continue visiting the discussion board - there may be many, many good news stories out there.

leggo_my_legs
Posts: 272
Joined: Sun Oct 16, 2016 12:29 am

Re: Need good news!

Postby leggo_my_legs » Sun Oct 30, 2016 1:40 am

PolarBear, I crafted a reply agreeing with you but it got lost in cyberspace. Essentially...I agree!

Legsbe, cautious optimism is good news! :D Even tho I'm plms I still relate to pretty much everything here.

I tried the horizant and it too made me feel like crap. Dry heaving in the morning and it actually made all 4 limbs feel restless very weird feeling. So far everything I've tried the "cure" is worse than the illness.

I don't want to try the neupro just yet bc I have to go get a health screening and I heard it can raise bp as a side effect.

I'd try kratom but I'm oo scared and paranoid. Incidentally, in my mind, I got kratom and krokodil confused!!! OMG. :lol:


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