RLS and Augmentation
ฝัง
- เผยแพร่เมื่อ 10 ก.พ. 2016
- 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.
For more information please visit www.rls.org
'RLS and Augmentation' © RLS Foundation 2016
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"
Augmentation is the BIGGEST issue in my support groups! We NEED some more recent studies!
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
Its a old comment. But still like to reply and know how are you doing. I am also having rls for last 1 year. Started yoga and exercise. But it feels stress makes it worse. Sometimes i feel scared. With the things you listed does it help to contains the sensation? Or it is going worse over the period of time.
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.
so sorry. I relate. what's your ferritin number? should be 125-300 for rls patients
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.
This is an excellent video, it should be watched by all friends and family of RLS sufferers.
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.
yes you're not alone. I found some relief getting my ferritin above 125
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.
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.
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....
Thank you, your description of this condition, I think I have this.
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
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.
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.
Thank you!
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.
This might change my life finally after years of suffering.
Hi Mark! If you would like more information about Augmentation and RLS please email info@rls.org! We will get you taken care of!
It is very nice story
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
This condition is ruining my life, and finding hard to cope twisting and turning till I eventually fall asleep in the early hours. struggling with my work as I am so tired everyday, with no strength in my body.
Besides augmentation, I'm also worried so much about the complex evolution of having dopamine agonist:
will it worsen or introduce Parkinson's disease when I get older... since it impact the dopamine receptors...
(From my experience, no doctors can answer this question yet...)
had rls for 4 decades. a naturopath told me it was caused by a minor blood disorder. he took a sample and showed me the problem through the microscope. rouleaux and fibrins caused by body infections like tooth decay or diabetes. he said pine or oak tree bark or grape seed extract will stop rls. that's my fix. the gse is cheapest.
oh thats interesting. I've had some success with usnea/lichen and while it isn't tree bark, it does form are trees I'm told. How often do you take the GSE? Does your rls come back if you stop?
@@keke8880 , yes it does come back if i stop. ive never heard about usnea/lichen. it is probably the same sort of stuff as gse. i originally took pills that contained 4 or 5 different ingredients but through trial and error, found that gse was enough. and it is, by far, the cheapest.
Mine is bouts of leg movements, and a feeling of the muscle crushing the bone. Im lucky as it is not constant, though always some pain. I have found electro stimulation pads can give some relief.
I had a similar problem when taking painkillers for a couple of years for my RLS. When i stopped taking them the pain was almost unbearable for a couple of weeks.
Where is the research ?
Mines a ticklish feeling that literally drive me up the wall!
Mine is an "ache" that is only relieved by movement. If I try to resist the movement, I have an explosive uncontrollable spasm. I just got on Mirapex.
I'm 31 from India living in Oman and I have rls. Everything is true in this video. Can somebody help me, bcs this has made my life a living hell. I just got a good job where I could repair my damages but this rls is taking me back to destruction.
Hi Rezwan. Please email us at info@rls.org and we will be happy to help you and send you resources.
Best bet other than medical advice is to avoid anything that might make it worse. Google rls, use good judgment and you will find almost everything that makes it worse.
My only other advice would be to have your doctor give you opiates. Hard to get and very addictive both mentally and more so physically.
Best of luck I have it 24/7 so I feel your pain.
I've had this for 20 years, it sucks.lol
Yup. 😂😂😂
I been having RLS really bad for the last 20 years can't sleep at night
my legs and my arms and my shoulders start aching and starts going
crazy. i try everything from all kinds of nerve Medications to sleep
studies . the sleep studies found out that i have sleep apnea so now i
have to wear a CPAP every night for the rest of my life i just ture 60
years old ok now in order for me to go to sleep at night i have to take
a Percocet 5 mg did that for a year now iam taking two 5mg a night
with out the percocet there is no way i can go to sleep i would like to
get off the Percocets. the percocets are going to kill me or the RLS is
going to kill me i don't think i have a chance please some body help me.
Hi Tom! I'm so sorry to hear about your struggles with RLS. We have a multitude of resources on our website (www.rls.org), including a healthcare provider directory, a listing of RLS Quality Care Centers, and a network of support groups. We also have a few free publications that would be great to share with your healthcare provider! Feel free to email us at info@rls.org for additional information. You are not alone!
how are you doing now?
I have RLS and. It is in my legs and my arms too. I feel like screaming sometimes.
We stuffed people in a toaster and blasted them to the moon but we can't cure this? I have to go to bed between 8 and 9 because it hits at 10. Its never waked me but will not allow me to fall asleep. Feels like I either have to shake my legs or stretch them really hard.
How does one know if RLS or periodic leg movement. It was like my leg was listening to music on the radio and started moving around wo me . Is worse near computer. Will do a websearch for natural remedies for this and see if any feel might help. Dr tested my iron, was higher than ever been (usually anemic) and suggested a sleep study but figure if in a strange place will sleep even less than at home. At least not every day, is it related to night time twitches in calves?
rls is the irresistible urge to move your legs at rest. its not involuntary movement. involuntary movement could be PLMD but it's not rls.
@@keke8880 thank you. Have had both (possible PLMD when leg ) cramps. Do wonder if mineral imbalance or nerve problems.
I'm experiencing augmentation right now. I actually just requested my dosage of requip be increased by .5mg. Going to explore alternatives to that medicine now.
He forgot to mention cannabis as a medication for RLS... funny because it’s also the best
Hi Elyse, do you use medical cannabis for your RLS?
didn't work for me. It made my rls worse
Sharing PERSONAL experience in hopes it may help someone with similar RLS symptoms:
I have a moderate case of RLS In calves.
A YT video by a PHD, not MD, was a HUGE help for me. He said some causes of RLS are low potassium & dehydration & added that antacids block potassium absorption. Suggested using a HIGH dose potassium powder 1000mg. (Can find on Amazon)
Self findings: I must DRINK LOTS OF WATER, cannot take antacids. CBD based rub (roll on) relieves symptoms.
BEWARE of dopamine receptor agonist drug treatment!!! Unless you want to chance the potential loss of impulse control very REAL side effects. SERIOUSLY!
Horroble ! Threre is no awarness onnat desease ! Its so Bad.