Restless Legs Syndrome
10,358 members6,400 posts

Is this still a viable blog?

In scrolling through the posts, I have not seen a post newer than 4 years ago. Was wondering if it is no longer a viable blog. Hope it is, because I have the same problems with RLS as other.

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Very alive.

I suspect what has happened is that you came into the site , following a particular post from 4 years ago , and got trapped in that time warp.

Aren't you lucky you've managed to get out of it. And without a telephone box.!!!

You'll now be able to get all the up to date info to enable you to live a completely new life- and in this current time zone. 😅 (2024)😈

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Ummm.... Madlegs? I’m in 2018. 😆

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Ah! But she doesn't know that!!

We have six years to think up some good answers!😉

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Good point!😀

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Funny Girl!

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Hi Keitha,

Why not start a new thread and that way you will receive replies of help and advice. This is a very active forum with many new postings daily. We look forward to hearing more from you. :)

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To Keitha

And we are not all utterly mad. - maybe a bit giddy. But very serious.

And this is one of the best rls sites around.

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I’m still here

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Definitely still up and running with new stuff daily. I joined less than a year ago.

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Hi Keitha!

Sorry for the somewhat weird (and what could have been taken as disrespectful) first impression with me and Madlegs. As Madlegs says later on, we are actually very serious here. If you would allow, let’s start over. Hi, I’m Jessica. Nice to meet you. What can we help you with?

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Indeed we are indeed serious here, but also very sleep deprived and hence a little crazy. At least, I am - I think.

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Thanks. Same here, crazy and sleep deprived.

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Amen to that! I can’t remember when the last good night’s sleep was.

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Nice to meet you too. What can you do to help me? Find a solution to this RLS madness that will drive you crazy; drive you to drink; then to something more drastic. I have had RLS 50+ yrs. and did a good job of managing it until about 3 mos. ago. Then all h... broke loose. My symptoms are 100 X worse than before - symptoms during the day (never had before), leg cramps, foot cramps, etc. I walk the floor most nights, so I guess you could say I am sleep deprived. I have taken several prescribed medications, some herbal OTC medications. I am desperate. I found this website (www.rls.org) that has some interesting info. One being this thing called augmentation (had never heard of it). Unless you have access to a specialist in sleep disorders, your regular GP has no real knowledge of this problem, or they don't care, and not everyone had access to a specialist. Back to the augmentation, I think this is what has happened to me. My medication is making my RLS worse instead of better. But I don't know what to do about that - do I stop my prescribed medication or just cut back on the dosage? I can't self-prescribe another medication. If anyone has encountered this problem, any advice or info would be greatly appreciated. Now, about the mad vs. giddy, I can identify with both. If you can't have a little laugh and a lot of fun, life gets boring pretty quickly.

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HI KEITHA I can relate to augmentation its either two things,you've been on a to higher dose,( with all D/A you have to start out with the lowest dose possible)then work yourselves up to the correct dose in the case of repinarole its 1mg in the patch its 3mg or the medication has stopped working, in my case I got augmentation for both reasons, & trying to wean of it,that's another story. if you require any further advice on augmentation, please put augmentation in the search engine on healthunlocked & it will tell you all about it.other than that you can either send me a P/M & ask me a question about augmentation. take care X SUE

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I’m sorry for your plight. It’s pure Hell, isn’t it? I augmented on Pramipexole in 2015. Like you, I had no idea what this word was because the prescribing doctor was very nice (sarcasm) not tell me about it.

Would you be so kind as to tell us what meds. you’re on (not just RLS ones)?

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Was on Requip long enough to realize it was not working, along with Clonazapam. Then IM Dr put me on gabapentin. Had to keep increasing dosage to find a workable dose, but after some time I developed a balance problem, so that went out the window. Then came Mirapex (current med). Started out low dose. Not working. Doubled the dosage and that's when all h... broke loose. One of my major problems right now is having recently moved into this area, I have not found a Dr that's a good fit for me. I'm still searching, but now she's all I have. So my current med list: mirapex, zoloft, synthroid, prevastatin, clonazapam. I understand the zoloft might contribute to my RLS so I'm dropping it. Does anyone see a problem combination? Question - anyone have any experience with an OTC herbal supplement called Restavin? I have been using it for about a wk and it's working a little bit. Maybe with time it might do more. Thanks

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To Keitha .... most definitely unequivocal a resounding YES.

I use this forum at least three or four time/week and can honestly say, (without any hesitation whatsoever), that I would be lost without it. Yes it is extremely viable , this blog is definitely without question extremely useful on many levels.

Personally I would definitely feel somewhat alone. I thoroughly get much pleasure when I find myself to be in a position to assist someone, and also often find myself seeking support and advice.

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It is nice to know that you are not the only one up walking the floor night after night. Thank you. Looking forward to gaining new friends, and getting some valuable info.

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Actually, it's now the Dr. Sarnos 24/7 infomercial. Check out his youtube channel, buy his book, have his baby, give him all the folded potato chips. One time, I saw him stick a thorn in a lion's paw and the lion said "thank you!" He's completely changed my life. The government said I don't have to pay taxes anymore. And if you post about him constantly, he appears and gives you a free haircut.

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Is that good or bad? If he's completely changed your life, that could be a good or bad thing. If you have to have his baby, that a bad thing in spades.

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Wikid.!😆😈😨

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You can't have his baby, he died a year ago at 93.

Why so much anger? We are all desperate and in pain. Why criticise something that might just bring relief to someone else? There are many teachers and as many paths...

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Yes - It is still alive. I see posts every day, so I agree with Madlegs - just caught in a time loop - ha ha

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I feel all your pains... RLS is a real bummer.. augmention I mentioned this to my GP very recently after learning about it in here and with taking Pramiprozole yes Jess!!!! Well a look of puzzlement very swiftly welled up in her face and she just passed it by obviously she hadn't heard of it was very obvious.

I still take it 4 tiny tabs every evening doc says go back down to 2 daily but how do i do that when at times 4 isnt doing it?

So how on earth Jess in 2015 you managed to come of it how did you ever put up with the frustration of climbing the walls with RLS please tell please?

I was sat earlier here crying to myself as it drove me to distraction as i was very late in taking my dose so had to wait a few hours on it kicking in.

Keitha

I can relate also to leg cramps toe cramps shin cramps just waiting on the brain cramps next or perhaps thats already 24/7 going on who knows..i don't. But it's no fun walking the floor trying to ease them i fully relate.

At times you just have to sit or move in a direction and bang wallap their you are in cramp jumping up trying to elevate it before it strangles you.

I hope someone finds some answers from someone or somewhere if so please post on here asap please

Thank you

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I can relate to all your problems, even down to the crying I get so frustrated. You would think if they could put a man on the moon, they could find a cure for RLS. Maybe we should march on Washington and knock on a few doors.

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How did I manage?? One big answer: I haven’t the slightest clue. I almost didn’t. I don’t remember having any problems with the withdrawal itself; the real problem was the 7-month waiting list I was put on to see a sleep specialist. During this 7 months I now know that I augmented (I didn’t know it at the time since I wasn’t given the word «augmentation» until the 7 months was up, so I spent the entire time being scared out of my mind as to what was happening to me). I clearly remember replying «what’s that?» when given the word. She looked at me like «oh, shoot! You mean, no one told you?». My reaction was....well, let’s just say that the prescribing doctor was very lucky I was living on the other side of the Atlantic when all this went down. This specialist was the one who referred me to a neurologist and I was switched frpm Pramipexole to Neurontin. I was getting fed up with how long that was taking to work, so I was switched to the Neupro patch. I started at 1mg. I’m currently on 4mg and it is working well.

Well, that was probably more than you wanted to know. Sorry that your question incited this rant in me. I’m still pissed. And traumatized. 7 months of practically no sleep is not something you want to go through.

I have a slew of things I tried. Here are the ones I remember. I don’t use some of these anymore and some are new. Not everything works all the time, which is why I have several:

-knee high compression stockings for calming the movements

-hand held heated massager

-the hot tub and therapy pool (warm pool) at the nearby swimming pool.

-massage balls (ones with plastic «spikes»)

-an exercise band to «pump» my legs with

-lidocaine plus pain relieving liquid — a roll on used for desensitizing the nerves

-Magnilife’s Relaxing Leg Cream

-3 exercises in particular found halfway down this site:

healthline.com/health/restl...

-immersing my legs in warm water

-jet spray massage (an option on my shower head). I put the massager directly up to every inch of my legs.

-magnesium oil (works wonders on pain and helps a bit with the movements as well)

-Epsom salts bath

-Rife Frequencies (like binaural beats). Put «Rife Frequencies RLS» into youtube.

-my latest one (a week old): Wholetones Healing Frequency Music. There’s a neat story behind these that you can find at wholetones.com. This site wants you to purchase the music, but there are also free samples on youtube.

-upbeat music, especially «I Will Survive» by Gloria Gaynor, «Stronger (What Doesn’t Kill You)» by Kelly Clarkson, and my latest favorite «I’m Still Standing» by Taron Egerton

-Pineapple juice (acts as an inflammatory)

-other herbs that act as anti inflammatories like Tumeric and Valerian Root

-ORB sleep complex (time-release capsule containing melatonin, GABA, valerian, 5-HTP, L-Theanine, and B12)

-yoga

-weightlifting (or any anaerobic exercise for increasing muscle mass)

My RLS has calmed down considerably over the past month, which I firmly believe is due to recent changes in antidepressant dosaging (with having gotten off one completely!)

I hope this helps!

Take care,

Jessica

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Wow Jessica thats some mighty list of remedies you've tried.

I had Neurotin once but was for AO Atypical Ondontalgia phantom toothache its really the nerves are effected but it shows up as being very similar to toothache the Neurotin didnt work for it but I can't mind if it helped RLS as it's too long ago now.

Did you just stop the Pramiprozole in one fail swoop not weaning off? And did you have withdrawals?

I can't imagine how I would get off them i can't do without taking them i just can't bear it and when it develops into RBS i crack thats just way to much to contend with please tell how you stopped them?

I too have melatonin spray I use also Freeze spray I find cold helps better that heat. I've put myself on Iron liquid ive taken Magnesium none of it helped me.

Im going to ask my doc regarding that Neupro patch you mentioned. I was on a pain patch for prolapsed discs but it wasn't helping but again i can't mind if it helped RLS at the time.

I think this year mine have got more intense and also with the added RBS at times too that I've only started having this year but before i started Pramiprozole that started so no connection there.

Between that and leg cramps which i was on Quinnine for and was brilliant sure it was taken off. Plus sciatica in one leg and AO..lower back pain and Bipolar but that's well controlled with 3 different meds.

Days i just wanna curl up and bury my head. I've had RLS many many years now and being on my feet is only thing that eleviates it but tgen back pain kicks in. It's a vicious circle but at least it all not life threatening as some are so I'm thankful to God for small mercies as there for the grace of God go i.

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In regards to getting off Pramipexole: I honestly don’t remember.

If you don’t mind me prying a bit, what bipolar meds. are you on? (Am asking because I swear there is a connection between my getting off of Stavzor/Orfiril (Valproic Acid prescribed mainly for seizures, but also for mood disorders) and my improved condition).

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Sorry Jess for late reply have just lost my wee 10yr old Bella she was run over on caravan site where we were staying on she died in my arms on way to vet she could hardly breathe she was my chum only fairly small as was half Chihuahua and half Pomeranian loved her to bits.

Im on Lithium 600mg daily

Sertaline 150mg daily

Lamictal 100mg

I cant stop the lithium as its for bipolar the others are antidepressants to lift the down mood side.

So stopping or changing isnt an option for me as this combo has been keeping me on an even keel praise God having somewhat harder time at present because of my Bella.

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OMG, I am SO sorry to hear about Bella! How tragic. I can't even imagine the pain you are going through right now. I'm giving you lots of virtual support!!!!!!!!!!

BIG BIG BIG BIG BIG BIG hugs,

Jessica

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Jess, hope you are doing better. I've been through most of the approved meds for RLS. Started on the low dose Neupro patch yesterday. How long does it take to kick in? Yesterday was great. I thought I had died and gone to heaven. But right now I am back to square 1. I'm in hell again. It might not work until Dr increases dosage.

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Oh man, I’m so sorry! I was in hell again a couple nights ago. I attribute that to having made brownies that evening, then eating some (sugar overload). So, was there a change in routine for you on that evening?

The Neupro: I remember it kicking in pretty quickly. But I also remember it not taking long at all before asking the neurologist to increase my dose.

I got excited when I read that you live outside of Ft. Woth! I’m originally from Houston, but have been in Norway for the past 5 years due to my husband’s job. (one guess as to what kind of company he works for😀).

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Hi, it's quite a while since I have posted. My restless legs has been displaced by sciatica and I find I can't feel the discomfort from both at the same time. I am using Solpadol 30/500 and Lyrica for the pain but I try to keep meds to a minimum I skip doses sometimes and I find that when I do I can flare up restless legs that kicks in when the sciatica pain eases off. As I believe my restless legs was caused by suddenly stopping tramadol (prescribed for cracked ribs) I think certain meds have a permanent effect on the nervous system. I have Lyrica 25mg down to 5 doses a week and this seems to be keeping the restless under control. I take one solpadol daily plus paracetamol as I need it. I hope you find something works for you. I tried some of the suggestions on the site and found it helpful. Kind regards.

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