Daily Sufferers: How are we Doing?

For everything and anything else not covered in the other RLS/WED sections.
jul2873
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Daily Sufferers: How are we Doing?

Postby jul2873 » Thu Jul 23, 2015 12:31 pm

I would love to get an overview of how those of us who suffer daily from RLS are doing. I'm not a researcher or anything, just a daily sufferer myself. Here is a little survey, with my answers:

Meds used over 24 hours: 5-9 grams of kratom taken in 1 gram doses
Side Effects: Have to watch for constipation
Breakthrough time: Good days: less than an hour. Bad days: 2-4 hours
Hours of sleep during the night: Good nights: 6-8 hours. Bad nights: 2-4 hours
Percent of good days/nights to bad days/nights: Good about 70% Bad: 30%
Naps: Usually about 1/2 hour. More if I didn't sleep well at night.
Working full time? No Part time? No
Quality of Life: Very good, on the whole, esp. since I'm retired and can nap when I need to.

Anyone else? I'd love to hear from you.

Mary

Rustsmith
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Re: Daily Sufferers: How are we Doing?

Postby Rustsmith » Thu Jul 23, 2015 6:54 pm

Okay, here are my answers:

Meds used over 24 hours: 4 mg Neupro patch, 1200mg gabapentin 30 min. before bedtime
Side Effects: Slight Irritation of skin under patch
Breakthrough time: Good days: none, Moderate days: in hands all day long, Bad days: in Hands and total body symptoms 30 minutes after going to bed
Hours of sleep during the night: Good nights: 4 hours Bad nights 1.5-2 hrs
Percent of good days/nights to bad days/nights: Currently increasing bad, 30% in last week, was about 10%
Naps: Usually about 10 min. to 1/2 hour on good days, following bad nights: need 2 or 3, but often cannot fit them in
Working full time? No Part time? Yes, but I set the schedule most of the time
Quality of Life: Good, on the whole. The status quo cannot continue and it appears the next stage of augmentation has started. Cumulative lack of sleep over last year is starting to catch up with me.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Daily Sufferers: How are we Doing?

Postby ViewsAskew » Fri Jul 24, 2015 4:23 am

Meds used over 24 hours: 5 days a week: 5 mg methadone and .125 mg pramipexole, 2 days a week, 25-30 mg methadone
Side Effects: too many to list - I hate pramipexole....side effects from difficulty orgasming, bizarre thoughts in my head, waking up and being unable to sleep, difficulty with body temperature regulation, difficulty concentrating and sometimes difficulty using my brain
Breakthrough time: Good days: none. Average: 5 to 20 minutes Bad days: up to four or five hours
Hours of sleep during the night: Good nights: 9 hours. Bad nights: none to 3-4 broken hours
Percent of good days/nights to bad days/nights: Good about 40% Average: 40% Bad: 20%
Naps: rarely - if all is good, I do not need them, if bad, I cannot take them
Working full time? Unable to work most of the time; occasionally take some part-time consulting work and am a volunteer
Quality of Life: Poor to moderate; my tendency is to say it's good - and it is compared to what it used to be. But compared to someone without a chronic disorder, it's not very good
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
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Re: Daily Sufferers: How are we Doing?

Postby Polar Bear » Fri Jul 24, 2015 8:11 am

Meds used for RLS over 24 hours: 4mg ropinerole, 2 x 100 SR Tramadol, 3 (or 4) cocodamol 30/50. zopiclone 7.5mg.
Side Effects: I usually say none that I am aware of from these medications. Possibly low libido (but that might be because of just not quite reaching orgasm).
Breakthrough time: About 3 hours daily, When waking up in the morning, and as a medication dose wears off. Evenings can be difficult.
Hours of sleep during the night: Good night, around 4 Broken. On a bad night maybe 2, occasionally I can go 2 nights without sleeping.
Percent of good days/nights to bad days/nights: Days are medicated 24/7 and are moderate with breakthrough. All much the same.
Nights - None of them are good. 70% poor, 30% very bad.
Naps: None
Working: No - Retired. Part-time - a volunteer on this site, and about 4 hours weekly on other part-time work.
Quality of Life: Could be very restrictive if I give in - Limited somewhat because of lack of sleep and little energy. (and fibromyalgia). However to outward appearances I am whoopy-do and on the ball, never sit down etc. I just work around whatever each day presents.
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

Sunnyboy
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Re: Daily Sufferers: How are we Doing?

Postby Sunnyboy » Tue Jul 28, 2015 3:50 am

I am 73 and have had RLS for 8.5 years. My neurologist and I have tried just about every RLS drug available and they all resulted in augmentation. We even tried 2 iron IVs. So....now I am us ing Oxycontin CR 12HR20 MG,2 tabs twice a day or Vicodin5-250
2 tabs twice a day as needed, and Ambien 5 take 2 ar bedtime. If I don't take Ambien I don't sleep. Some times I go for 2 nights without sleep if I don't take Ambien. Even with these drugs I am in pain. Sometimes I wake up with RLS and sometimes I go to bed having RLS in legs and arms and chest. I have a condition in the butt muscles called" pitiformis". I go to PT for that as it is VERY painful and in the same area as an RLS trigger. Last week my pain level was a 10 and I wound up in my neuologist's office. He gave me an Rx called Butorphanol Tartrate--a nasal solotion. He called his "escape medicine". It was supposed to put me out but I had a delayed reaction ( and it did do the trick) but didn't work for 4 hours and then I just conked out for 4 hours. I would say that my quality of life is poor due to pain. I was a very happy person until RLS started. Now, I'm pretty depressed--that goes along with age sometimes I think.

jul2873
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Re: Daily Sufferers: How are we Doing?

Postby jul2873 » Wed Jul 29, 2015 4:00 pm

Oh wow, Sunnyboy. I'm sorry that you're having such a horrible time!

Polar Bear
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Re: Daily Sufferers: How are we Doing?

Postby Polar Bear » Wed Jul 29, 2015 5:53 pm

Sunnyboy - not all medications available for treatment of RLS will cause augmentation.
Have you tried the anti seizure medications, the Lyrica/Gabapentin?

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Well done getting off the medication that was causing your augmention. It would be interesting to hear how you coped with doing this.
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

Sunnyboy
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Re: Daily Sufferers: How are we Doing?

Postby Sunnyboy » Sat Aug 01, 2015 2:40 pm

Jul2873----Thanks for your empathy and loving care. It's just what I needed.
Polar Bear----Yes, I tried the anti seizure meds( Gabapentin.) I will order the book you suggested---second edition. Yes---I had my ferritin level tested and was told that it was normal. I will ask to have it tested again and will ask for the actual level this time! Getting off the med that was causing augmentation caused severe RLS.I appreciate both of you taking the time to read my post and to reply. Thanks so much!

Polar Bear
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Re: Daily Sufferers: How are we Doing?

Postby Polar Bear » Sat Aug 01, 2015 4:16 pm

Yes, it would be a good idea to have your ferritin retested. You need to know your actual level. :thumbup:
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

badnights
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Re: Daily Sufferers: How are we Doing?

Postby badnights » Sun Aug 30, 2015 8:31 am

Meds used over 24 hours: 9 (or 12)mg hydromorph contin, 3.25mg zopiclone, 100mg modafinil, +/- 75mg Lyrica, +/- 1 10/25 levo-carbidopa
Side Effects: hyperalertness in the night, difficulty "orgasming", possibly other things
Breakthrough time: almost always. Meds keep it bearable. On a typical day standing up most of the time at work and at home, I will experience symptoms AM and PM about 8-10 hrs.
Hours of sleep during the night: currently 4-5, ranging from so fractured as to be useless to restful and glorious
Percent of good days/nights to bad days/nights: 50-50 these days
Naps: 0 to 3 naps, 0-10 minutes each (some are unsuccessful due to symptoms), sometimes a single longer nap of 30-90 minutes but those almot always wake me up with symptoms
Working full time? Yes Part time? Yes also - a paid job a few hours per month and a couple of volunteer activities.
Quality of Life: Low to moderate. Same as Ann, it was so bad before that it seems better now, but I get memories of my past life like breaths of fresh air and I know, oh I know, my QoL was sooooo much better then. Not sure if that counts, though, since I'm a totally different person now!
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.

Sunnyboy
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Re: Daily Sufferers: How are we Doing?

Postby Sunnyboy » Mon Sep 21, 2015 6:31 am

In answer to Polar Bear in August: Yes, I had my ferritin tested level and it was in the area "normal" for us daily suffers. Yes, I tried gabapentin but not Lycra because of the side affects--like death. I also tried the skin patch and it worked well until I had augmentation. My neurologist is Pat Hogan DO in Tacoma, WA ---one of the doctors listed by RLS. I have been going to him for about 15 years; first for migraines and then and now for RLS. He tells me that of all his RLS patients I have the worst case. He suggested that I write my story and send it to someone in the RLS community. I'm not sure how or where to accomplish this. Please let me know if I may do this.
Hope all on this forum have an improvement or a lessening of symptoms this week.
Sonnyboy

badnights
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Re: Daily Sufferers: How are we Doing?

Postby badnights » Tue Oct 06, 2015 12:43 am

Sunnyboy, the RLS Foundation has a blog and a newsletter called Nightwalkers. If you sent your story to someone at the Foundation, saying you were interested in sharing it via one or both of those routes, they could make it happen.

If you go to http://www.willis-ekbom.org/, at the top of there is a menu choice called About the Foundation. In there is a Contact Us link, with email addresses. It's a pretty small organization, so it doesn't much matter who you send to, it will be forwarded to the right person.

Also there is a link at the bottom of any page (in the dark blue bar) to the Foundation Blog. You can see what it's like there.
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.

sleepdancer2
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Re: Daily Sufferers: How are we Doing?

Postby sleepdancer2 » Tue Oct 06, 2015 10:19 am

I was hesitant to post to this thread - guess it's something similar to survivor's guilt. Then I thought of the many years of utter misery and figured I do have a place here. So here we go.
Meds: None for my limb movements. On blood pressure and blood sugar meds. Take supplements.
Other Treatments: TENS Unit
Side Effects: None
Breakthrough time: Just before sleep
Hours of sleep during the night: Good nights: 7-9 hours. Bad nights: 4-5 hours of restless semi-sleep then 2-3 good hours.
(My worst night now is better than my best night "back then".)
Percent of good days/nights to bad days/nights: Good 80% Bad: 20% (often my own fault - daggone that coffee)
Naps: Most days at least one nap seemingly unrelated to sleep the previous night.
Working full time? No Part time? No
Quality of Life: Compared to who I was before this condition, I'd say poor. Compared to me at my worst 5 years ago, I'm happy to be where I am. It's all relative.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: Daily Sufferers: How are we Doing?

Postby ViewsAskew » Wed Oct 07, 2015 3:49 am

sleepdancer2 wrote:Quality of Life: Compared to who I was before this condition, I'd say poor. Compared to me at my worst 5 years ago, I'm happy to be where I am. It's all relative.


I second that!
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.

pab628
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Joined: Mon Jun 11, 2012 3:43 pm

Re: Daily Sufferers: How are we Doing?

Postby pab628 » Mon Oct 12, 2015 7:33 pm

I can have symptoms anytime (every day). I was on 3 1/2 mg Ropinerole and managed to decrease 1/2 mg. So, now I take 3 mg spread out over day and 1 mg. Clonzepam at bedtime. If I keep busy during the day, I don't have too much trouble. Always some trouble at night. But, most of the time if I try to relax or sit too long, RLS rears it's ugly head. In April my neurologist told me to take 2 (325 mg) Iron tablets even though Ferritin is 209, Serum 50 (normal 40-150) and Saturation 20 % (normal 15-55). I got afraid of taking 2 because I'm having such muscle pain and burning (feeling) feet). In some ways the pain has replaced the irresistible need to move legs (and rub arms,). I have my 6 month checkup on Friday with my neurologist and have a list of questions. I could go down some more on the Ropinerole dosage, but, after my experience with the first 1/2 mg...frankly, I'm scared. Sleep: Good night would be 7 hours with one interruption. Bad night is anywhere from 4-5 hours to 7 with several interrutions and a wrestling match with the mattress.


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