Nice to find you. I have had RLS for forty five yrs

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

once any DA doesn't work...others won't either.
not true:), you're right to try it. The side effects are different, and a person's propensity to augment is different too, meaning you might not augment on one, even though you've augmented on the other. Or, you might not augment as fast. However, the danger in starting DA#2 before you've gotten over the withdrawals of DA#1 is that you'll start too high a dose on DA#2, that is, you'll be treating withdrawals, instead of your baseline symptoms. Higher doses, and possibly even just doses that are higher than you need, make you more likely to augment.

To get into a sleep clinic, when answering their questionnaires, you have to convince them that the effects of your disease are deathly serious. eg. They will get you in faster if you have fallen asleep while driving. too bad in a way that WED patients rarely do, because we're assaulted with hyper-vigilance along with the dreadful sensations. Unfortunately, the sleep clinics don't have a question that gauges the devastation of chronic sleep loss on all other areas of life...

I think it's great that you've set aside some of your precious energy to raise awareness. Go for it!
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hello and Thanks Eefall and Badnights (Beth)

Well ... Well..it's been a while since I had posted.
Since last month sometime I did become very ill with cold/flu and in the interim NO WED/RLS. I had heard of this before but hmm found it difficult to believe. Now since no activity for a long while I Pray every day to God and I thank him for NO WED/RLS activity. I try NOT to think of it. Of course I am being selfish. It's this *strange fear of reoccurrances of WED/RLS* that keeps me from thinking about it. Of course I had been taking the lowest dosage as well of *Mirapex* the whole time. So I don't know if it's the Mirapex or the fact of being ill? Anyways I will leave it at that and Thank God and everyone here for one more day FREE of WED/RLS. Praying for everyone here too to be free of WED/RLS
This *Fear is not Strange at all * it's a healthy fear bcos we do think and know it's gonna return again ..rear it's ugly head so to speak. But until it does..wow I have had sleep and had been free of WED/RLS.
I believe it's possibly the Mirapex... but then I don't know .... but I think it is.
Only sleep 3 to 4 hours per night and have mini naps during the day. It's working for me. I would never wish to give this up for anything.

Thank you for the feedback. I will be back again soon.
(I am able (only for today ..just for today...Go away with my husband on a week mini vacation..what a joy. But..this is all only for today)

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

It is wonderful to hear when someone has a bit of respite.
I also found that if I even had a 24 hour bug which would put me to bed, that I was able to be in bed without WED/RLS symptoms. Not even a hint of them - for the 24 hours.

Enjoy your mini vacation, have a great time.
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

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Thank you so so much Polar Bear.
It's just so so weird that ..that happens when one is ill.
As you stated..you didn't have a hint of WED/RLS for the whole 24 hours.
Take Care and will keep you all posted when I get back ...
Sincerely, Oceanwalker

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Well hello there all and I am so so Praying that my respite from WED/RLS is NOT over.. but!!! the past few days I had some flutters and then last night boom the big one. It started....:( and I almost cried. But!!! I walked around some and eventually it left. I actually went to sleep.
It's been a Blessing each day to not have WED/RLS..
I am only Praying and Hoping one day at a time.
Thank you for all the help. I tried to get the information out to the pharmacies, the doctors in my clinic. It's amazing how many professionals had never heard of WED/RLS. With the pamphlets from this foundation..it's been possible to educate many of them.

Please all take care and post soon.

Sincerely, OceanWalker

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Nice to find you. I have had RLS for forty five yrs

Post by Polar Bear »

Great to hear that things have been so positive for you.
Alas.... the wee flutters.
I hope you stay as symptom free as possible. :)
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

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Nice to find you. I have had RLS for forty five yrs

Post by EeFall »

oceanwalker wrote:Well hello there all and I am so so Praying that my respite from WED/RLS is NOT over.. but!!! the past few days I had some flutters and then last night boom the big one. It started....:( and I almost cried. But!!! I walked around some and eventually it left. I actually went to sleep.
It's been a Blessing each day to not have WED/RLS..
I am only Praying and Hoping one day at a time.
Thank you for all the help. I tried to get the information out to the pharmacies, the doctors in my clinic. It's amazing how many professionals had never heard of WED/RLS. With the pamphlets from this foundation..it's been possible to educate many of them.

Please all take care and post soon.

Sincerely, OceanWalker


Awesome that you have been doing well! Sometimes it happens, flutters, because of something I eat or drink, other times from not being consistent with the times I go to bed, other times it is a mystery. If it continues though it may be necessary to increase the dosage of medications.

My doctor has it setup so that my prescriptions say to take 1 to 4 of so-and-so medication so that I can up the medications as time goes on because either the WED is becoming worse and/or I build up a tolerance to the medications.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Right and thank you for your input :)
Sometimes it just happens.
We shall see and I am Praying:)

All the Best:)

Sincerely,
OceanWalker

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by badnights »

I tried to get the information out to the pharmacies, the doctors in my clinic. It's amazing how many professionals had never heard of WED/RLS. With the pamphlets from this foundation..it's been possible to educate many of them.
I like! :)
Sad that we have to educate, but great that we can!
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Nice to find you. I have had RLS for forty five yrs

Post by oceanwalker »

Hello...well the flutters are over and the full blown WED/RLS is back at night ...
At night and not 24/7 yet.
I Pray and Pray it stays away.... and yes Beth it is sad that we need to educate everyone but we do!!
One of the doctors (who is awesome) after I showed him the information RE: WED/RLS stated "we don't want to give our patients a problem of addiction" EEEekkk ADDICTION???? grrr I advised him that NOTHING had changed with my intake of opiodes but i guess he just didn't get it? I have been taking the 2 dilaudids every night past umm almost 2 years. Without it... life would be unbearable. But even after I showed him the info he still didn't want to 'get it'. So I don't know. I will just Try Try to convince them.
It seems there's only a small handfull of doctors that understand this dilema.
I won't stop educating. I will continue to Try.

All the best to all

Oceanwalker

Post Reply