15 years is way too long

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curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Tue Jul 24, 2018 11:50 pm

Sounds like you have been going thu what i am going thu everyday for quite some time. My hats off to you and others that have found the strength to do it day in and day out. I feel like a whimpering baby for even complaining.

ViewsAskew
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Re: 15 years is way too long

Postby ViewsAskew » Wed Jul 25, 2018 12:57 am

curqlink wrote:Sounds like you have been going thu what i am going thu everyday for quite some time. My hats off to you and others that have found the strength to do it day in and day out. I feel like a whimpering baby for even complaining.


One day is enough to make any of us whimper! And, that is what this place is for - complain, whimper, cry, etc.
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.

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Thu Jul 26, 2018 2:55 pm

Finally got some sleep last night. 5 whole hours. I actually feel there is a light at the end of the tunnel. Now if i can just do that without taking a huge dose of hydrocodone. Thats the next goal.

Polar Bear
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Re: 15 years is way too long

Postby Polar Bear » Thu Jul 26, 2018 6:03 pm

Five Whole Hours - what bliss.
Well done.
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

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Thu Jul 26, 2018 7:12 pm

Thanks..i still can't sit for long. But at least i'm off meds during the day at work.Whoever it was that said i would notice it starting to turn around after 5 days was pretty much spot on.( I believe it was Holland)

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Fri Jul 27, 2018 4:05 am

Sometimes when i'm going thru a bad time. I start to wonder what terrible thing have i done to deserve this torture? What is there to look forward to? And other various depressing things. My worse nightmare is being disabled and not being able to get up and walk when things are bad. My god what a horrid existence that would be. It helps to be here on this site.To finally find people that understand is comforting. And the knowledge here is unreal. I'm sure there is nowhere else i could go and learn half as much as i have right here. Thanks to everyone here that shares their knowledge and compassion with others like me. It is truly appreciated.

stjohnh
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Location: Palo Alto, California

Re: 15 years is way too long

Postby stjohnh » Fri Jul 27, 2018 1:30 pm

curqlink wrote:Sometimes when i'm going thru a bad time. I start to wonder what terrible thing have i done to deserve this torture? What is there to look forward to? And other various depressing things. My worse nightmare is being disabled and not being able to get up and walk when things are bad. My god what a horrid existence that would be...


I'm a Christian, and knowing that I will be in heaven with God is what keeps me going.

I have plantar fasciitis that flares up sometimes and makes it nearly impossible to pace. If it flares up at the same time my RLS flares up I'm in deep Do-do.
Blessings,
Holland

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Fri Jul 27, 2018 5:07 pm

I don't know how you do it. I would be insane in short order if i couldn't get up and walk. There has been several times i had to pull off the road and walk. Now i never leave home without a hydrocodone or Kratom in my pocket. As long as i take Kratom on an empty stomach...it gets in my system almost as fast as hydrocodone. Usually 15 to 20 min.

2BassetMom
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Location: Idaho

Re: 15 years is way too long

Postby 2BassetMom » Sat Jul 28, 2018 7:24 am

I too sometimes wonder what I did to bring on this awful syndrome but my daughter and my husband reassure me that this is not how God works. I too am a Christian and if it weren't for my faith, I would have lost what little sanity I have left. I identify with you leaving the house with a hydrocodone or kratom in your pocket curqlink. I have a ritual before we leave to go anywhere. It's get my fast acting Sinemet & oxycodone in my pill carrier, my portable heating pad and a crossword puzzle book for distraction together. I find it comical and we have a laugh about it. Thank you God for humor! I struggled with a very painful knee about 1 1/2 years ago and it really limited my ability to get around. I would think to myself: oh no, I'm headed for the retirement home. At 71 that's one of my fears. We keep on going, taking one day at a time. That's all we're given. I'm super thankful for this group also.

curqlink
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Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Sat Jul 28, 2018 6:33 pm

Sinemet??? I never even gave that any thought. My Dr has stopped precribing me hydrocodone. I need something for emergency situations. I found out last nite that kratom won't zap out anything serious unless i help it by walking around. Sometimes that not possible.

2BassetMom
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Location: Idaho

Re: 15 years is way too long

Postby 2BassetMom » Sat Jul 28, 2018 7:59 pm

Sinemet is also known as Carbidopa/levodopa. It is a dopamine agonist. I have augmented on all the others but as long as I just use this occasionally I seem to be ok.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: 15 years is way too long

Postby Yankiwi » Sat Jul 28, 2018 9:59 pm

Sinemet is great for occasional use, but if used regularly it causes augmentation. It works very fast.

curqlink
Posts: 40
Joined: Sat Jul 21, 2018 6:38 am

Re: 15 years is way too long

Postby curqlink » Sat Jul 28, 2018 11:20 pm

Humm..i'm gona talk to my Dr about adding this to my arsenal. I am just now starting to experiment with different combinations of medications. I've been on the same routine for years. 50mg of tramadol at 5pm. Then at 10:30 i took another 50 tramadol and 1mg of ropinirole (that i had spent the last couple years tapering down to from 3mg). After i got down to the 1mg dose( that i was hoping i could stay at indefinitely)it just stopped working. So i decided to stop it altogether. How hard can it be i thought..1 little mg. Ha...its been the worst 8 days of my life. There may be a possibility that i have also been feeling some sort of withdrawal from tramadol because i stopped taking it at the same time. I'm thinking about adding it back tonight because kratom just doesn't put a dent in late night symptoms. And i'm wondering if it is somehow affecting how well hydrocodone works as well. I understand that when i first started this adventure i was not gona be able to control all my symptoms with any amount of meds. But its been 8 days and to be able to get to sleep i still need to take 20mg of hydrocodone, along with..2 grams of kratom and a little THC. Last night i added 100mg of gabapentin but it didn't seem to do any good. Holland recommended adding back a small dose of ropinirole. I may have to..but after seeing how hard it is to get off this stuff. Its a little scary.

sleepdancer2
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Re: 15 years is way too long

Postby sleepdancer2 » Mon Jul 30, 2018 9:35 am

Sinemet was the first drug I was put on after diagnosis in 1998. I was on it a few years before a different doctor told me it should be the last resort, not first. To the best of my memory, he said the agonists prompt the body to work but that Sinemet is a replacement and should be reserved for when agonist options are exhausted. He said using Sinemet before there was no other choice could be a problem if a time comes when I had to have it and I had already exhausted its usefulness by developing a tolerance, or side effects, or augmentation. And I had. Like if I were to develop Parkinson's, I would need Sinemet. Not sure that was sound advice, but it made sense to me. I found the effectiveness of short acting Sinemet to be very dependent on what I ate and when. Meals like meats that were being absorbed at the same time as the med could cause a problem with the med being able to get to the brain. Seems something in the food (iron?) uses the same transporters as the med and the number of transporters at the blood/brain barrier are limited. Also, any meal that caused the med to sit in my stomach a long time instead of getting into my small intestine to be absorbed also inhibited effectiveness. Not sure if any of that info is useful to anyone, but figured I'd throw it out there just in case.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

stjohnh
Posts: 546
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Location: Palo Alto, California

Re: 15 years is way too long

Postby stjohnh » Mon Jul 30, 2018 1:59 pm

curqlink wrote:...But its been 8 days and to be able to get to sleep i still need to take 20mg of hydrocodone, along with..2 grams of kratom and a little THC.


How much kratom are you using? 2g is reasonable. 0.2g is not enough to have any effect.
Blessings,
Holland


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