RLS and Augmentation

Restless Legs Syndrome (RLS) Foundation presents 'RLS and Augmentation'.

Stories from those who have suffered with augmentation, and information from Quality Care Center certified RLS expert physicians.

Augmentation is defined as the worsening of RLS symptoms that occurs after starting a medication to treat RLS.

'RLS and Augmentation' © RLS Foundation 2016

[sammie]

Augmentation is the BIGGEST issue in my support groups! We NEED some more recent studies!

[karmaxxl]

I have suffered with RLS for 20 yrs, my Mother did as well. I've taken magnesium and iron (no help) I have been prescribed a drug "pramapraxole" for ten yrs and kept having the dose increased, until I realized that taking the medication long term had made my RLS worse causing a condition called "augmentation". I've stopped medication and my RLS has moved into my upper body and happens 24 hrs a day. My personal and social life is greatly affected. I have to accept this, I've bought a Homedics massager and take baths with Epsom salts and use CBD oil with a low dose of THC to help me sleep, afternoon naps help and I got a rescue dog to keep me company through the long nights. Don't give up! Keep trying until you find some "small solutions for you"

[fionnmaccumhaill]

Hopefully this will help People.
I have had RLS since I was 10. I am in my 30s now.
Things that help.
1) Take Iron
2) Excercise everyday if you can.
3) Drink lots of water.
4) No Coffee/limit caffeine
5) Limit alcohol
6) Stress also brings it on for sure
7) Go to bed at the same time every night
8) Also anti histamines make it worse. So do many SSRIs.
Hope this helps.
Giving up coffee was huge for me, taking iron and excercise

[krisyriley]

Thank you for this video. I feel so alone. Have had RLS since I was 16 and then after the birth of my daughter at 20 it became a daily occurrence. After many trials of meds I augmented and eneded up having it all over my entire body, all day, all night. It's constant but worst at night. Its been 13 years now of a whole body experience. Pure torture that no one understands.

[edwinderknight]

I have RLS. I have never ever experience anything like this. It fells like something is crawling in my leg. My muscles tightens up. I shake he whole bed trying to get relief. It is a awful feeling. It drains me and makes me really tired. I am so glad to see this video. Maybe now people can understand what RLS sufferers go through.

[clarestrange]

This is an excellent video, it should be watched by all friends and family of RLS sufferers.

[danielshin]

Thanks for the precious information! I am 50 years old Asian (South Korean) Male. I didn't' know that I had an RLS for 30 years old. I thought I have a bizarre experience. Now, I feel much better that I know what I have been experiencing and I am not alone.

[Squared]

It can be horrific. There are times I just want to chop my legs off. The sensations are not pain, but they are extremely unpleasant in a way that can be utterly overwhelming. You just want to cry. As I write, both hips are 'on fire'. And I've no idea if the meds I took 3 hours ago will either stop this or I'll have to take more or take some codeine pain medicine.

[aahsigh]

7:38 please consider the environmenta factors. I recently stumbled upon a similar one called weather headache pains. That too is caused by environmental factors on patients who have no pre-existing conditions ofcourse.

[Pejohnson]

One thing I found very interesting, which I didn't previously know, is that RLS is most common in northern Europeans. I'm half Norwegian and half Scottish. My father had it, though I don't believe he ever took medication. I've greatly appreciated all of the information provided by the RLS Foundation, and the support they offer to all of us who suffer from the disease.

[ButtercupCreationz]

I have had restless leg syndrome since I got pregnant at age 18. It is pure torture. I use to tell my therapist that I feel like I want to reach in with something very sharp and pull the nerve out of my leg so that I may get some relief.
I also have degenerative disk disease & herniated disk for as long as I can remember. I’ve got some ruptured disk as well and had to have spine surgery in 2004 when I was 35. But that was a big fail. They’ve tried everything available from steroid injections, physical therapy, dye put in the nerves, spinal ablation surgery. I’ve also had a neuro-stimulator put in and then it moved around in there and vibrating in my stomach so they had to go back in and move it back but that didn’t work either so they eventually had to go back in and take it out.
Honestly I’ve had so many things done to my back & spine that I can’t even remember them all until I look at my records or ask my Drs.
But the pain I have in my legs is so intense and horrible when I sit still, try to sleep or even ride in a car. that now I’m on morphine to be able to get any sleep but even taking up to 3 doses in an 10 hour time frame, I still can’t get the pain to ease off most nights. I have this RLS almost every night and I usually only get about 1-3 hours of sleep before I have to get up and just to get that much sleep I’m usually standing on the side of my bed, bending over at the waist and laying my head and upper body on the bed trying to get sleep but keeping pressure on my legs so they don’t kick & jerk like they do. I’m so exhausted all the time and I can’t get anything done due to exhaustion & having no energy and I have no real quality of life. If I sit down during the day my legs start tingling and twitching to where I have to get up. I can’t rest during the day because of the tingling, itchy, jerking & twitching. So I’m always trying to figure out what to try or do about it. I’ve been on all kinds of medication that I just want to find the answer or find something that helps me. If you know anything about strong narcotics like methadone, morphine & roxycodone, then you know the side effects are horrible!! In the last 2 weeks I have started taking restless leg pm and it has actually started to work. So it helps your legs stop jerking and tingling and it helps you fall asleep but for me I’m awake again before the hour is up. I know a few people who this works great for so I was hoping that it would be the miracle cure for me too. But because all the back problems that I have, I’ll probably still be taking strong narcotics when I die and me being on morphine, I’ll probably die way before my time.
If you are interested in trying the restless legs pm, I can give you the link I have. It does work and it’s not expensive but because my RLS is so bad, I have to take it all night long.
There are just a few fantastic reviews shy of 20, 000 with a rating of 4.3 stars. I will not take anything without researching and reading the reviews first. I hope this helps someone else who suffers from this horrific disease. I’m praying everyday that someone finds a cure for all of us who suffer from RLS.
Please help.

[sharoncharlup]

Right now I have a fairly mild form of RLS, and it is terrible. I remember my mother having it, and just very much hope that it ends with me....

[AH-cymd]

I was a fidgety kid. I remember my mom getting very irritated with me, grabbing my legs, and hissing “sit still!” I was unable to explain that it was almost painful to try to not move, to stop fidgeting.

It wasn’t until decades later, after treatment for psychiatric illness, that the nighttime rls started. And now added in is post menopausal hot flashes. Sleeping is a precious commodity.

[paulcookies]

Thank you, your description of this condition, I think I have this.

[genx]

Thank you for this informative video, especially the part about augmentation. This wan't so widely known about when I experienced it. Excellent video. - aka sleepdancer

[coyotezee]

I have mild symptoms, but I describe it as similar to an itch, that is similar as a non-painful sensation in a particular body spot that is very distracting, like a itch is. An itch is relieved by scratching it. RLS symptoms are relieved by moving the body part with the sensation. But like a persistent itch, the sensation immediately returns. If one is trying to sleep, it can become impossible to drop off while having to move one or both legs every few seconds. Growing up, my mother had the same symptoms. We called it "the jumps". It was much later in life that I learned it was a medically identified condition.

[leintjecusmano]

Hello, I am an 73yo Australian female, a long time sufferer of RLS and it is genetic in my family as most of my sisters and brothers are affected by this horrible disease. I am on Sifrol and experiencing augmentation and concerned that my GP will increase my dosage. I am frustrated by the lack of knowledge about RLS in Australian GPs, so I was mpressed with the information gained in you video and I am wondering whether there is a branch of your foundation here in Australia. Failing that, is it possible for a non-US citizen to join your foundation? If so what is your email address, I need help. Thank you Leintje Cusmano

[mhalusic]

Thank you for this video introducing what RLS and augmentation are. It's definitely an important issue that more doctors and patients need to be aware of. Personally, I would have liked to have learned a little more about how augmentation works in the brain and other relevant details (e.g. the idea that drug doses that are low by FDA standards are too high when considering the risk of augmentation). Also, some of the analogies are a bit tortured.

[markj.]

This might change my life finally after years of suffering.

[aahsigh]

This question will help, and here it goes.Does dry air affect RLS symptoms at the HS hour? My answer is yes and obviously a strong yes if you have no pre-existing conditions. I just made a breakthrough in that the house temperature or thermo system or unit is different in that it includes an extra option included in the control panel setting to adjust the indoor humidity level too. Older versions are auto, so there no freedom to have a  hands no experience but within required specification. My RLS setting comfort 💖 zone was 55 percent on the control panel at naptime but I wake up and return it back or lower back again to below 45 percent during the day time threshold. The new class do not use water to per se and use a different configuration away from the water indepent stand alone humidifiers from online or shops etc mold or which may cause complications to individuals with pre- existing conditions like legionares disease or chest conditions. The house unit is safe with different configuration works, especially during the frigid cold, and the indoor air is dry in the summer nights. RLS has been an issue with me, but this thermo setting worked. No RLS and so far youtube channels don't get  in any thread it goes to show doctors have nothing to give as of this century so please investigate because my comments are lost in the thread at the youtube platform. People need to know since they deserve the news.