Hey guys! Im new to this forum and thought to seek some help! Im 20 years old and im pretty sure i have been dealing with RLS for majority of my life.its funny because it did not start out with my feet but rather with my wrist, i always had this constant urge of having to move my wrist, sometime unbearable temptations that would piss me off so bad if i did not move them. it has spread throughout my whole entire body now. Is it possible to have RLS in my toes?? if I dont move/flex my toes/ ankles/ calve/ neck i get very frustrated and it happens all through out the day, especially at night where it really interrupts my sleep.
Also, one more thing to add which is most interesting to me. I recently had a back injury that did get healed up, but it almost seemed like the injury caused RLS in my back... is that possible? same temptations that i have in my leg/wrist are now in my back.. I always thought it was from my injury causing it, but one day it honestly just hit me in my head and thought it can possibly be RLS in my back... Whenever i talk to a fellow peer about back pain they always were describing stuff that is not happening to my back. Ex. they would say they have huge muscle spasms that hurt like hell... i was always so confused when they say this because i have no spasms at all and no pain at all, just an urge i need to flex/move my back in certain ways... is it possible that its RLS???
Thank you, and sorry for this long post. so curious as ive been dealing with this for such a long time.
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Hey Madleg., The doctors tried giving me Tizanadine and repipone ( something along those lines) they also tried giving me other things. I refuse/d to take any medication that is not natural. I did lots of yoga which helped with my back injury ( which happened from wrestling)
Sorry to hear you are so young to have this miserable condition. Do a lot of research per the sites madlegs gave you and get a good neurologist. I have tried almost every medication (pramaxapole, gabapentin, ropinirole) and none of them work on me. I am taking klonopin .5 2 x a day and oxycodone 5mg 2x a day and this combo really helps me. Not perfect but the best meds for me so far. Doctors are not going to want to give you oxycodone, especially with the opioid addiction crisis going on right now, but it is really the one drug that does work. Also, I have read that back injuries might be one of the causes of RLS.
Hey Hoffie, such a horrible thing to have. It never crossed my mind that this can happen in other parts of my body. I didn't mind my wrist, although it was quite annoying. It bothered me when It came onto other parts of my body (back, calves, and ankle) especially when trying to work out and some days it's horrible at night I can't stay fell asleep. Knowing what pills and medication to lead to, I think I'm going to refuse to take anything they give me. If pills can help me, then I believe God has put something naturally on earth that can help it.
Thank you for taking your time. Sorry for the long post. Since its such a weird condition and almost seems "fake" i never really talked about it to anyone :/
Pls try this website rlcure.com which suggested that the problem was not the brain but the body being sick. It works on cutting out triggers and taking a range of supplements, vitamins and minerals. N hence all natural food n supplements ive rls too n been on trying this food remedy for 30 days n seen some improvement.
If you only want natural drugs/medicines then take a look at cannabis and kratom, particularly the Kratom as it works extremely well for RLS and many of us on here have/do use it.
Also get iron levels checked, (and look up gentle iron on the search at top right of page), and look about cutting crap out of the dies like sugar, caffeine, artificial sweeteners and alcohol.
As madlegs1 says check the sites they are very good.
I have pain issues with back, knees and ankle that aren't related to RLS but a whole host of pain that is when my whole body is at me. I have pain with my arms and torso spasming too, (although the pain is not from the spasms) and desperate pain in my legs.
Any of the opiates, bar tramadol I think, are all derived from opium so are all natural and very effective at treating RLS - I use Targinact which contains a potent opiate and get half decent management of the RLS.
On a final note, as we - humans are nature, (although many group nature and natural that is anything not man/man made), we developed out of this planet just as surely as a daisy or a duck-billed platypus and are part of nature and all the chemicals come from our planet and as such naturally produced by our developing species.
Hello and welcome btw, stick around a while - there is plenty of learning here - if you don't mind the odd loon hiding out
Hey Rafs. Thank you very much. I was looking into CBD oil. It's so weird. I been having these horrible episodes more and more. Just this week It happened 3 times where I didn't not sleep till 4-5am. It never use to happen this much. The only thing I can thing that can trigger is my caffeine intake which I reduced tremendously. I like to say I am a very healthy eater I am not sure what else in my diet can trigger it.
Also, none of this odd/very annoying sensation causes pain. None at all. When I try describing this to family members/ peers they always give me this dumbfounded look. Lol
Hi and welcome to the forum. Was your back injury caused by a twist or a fall when wrestling? I am wondering if there is some remaining nerve or disc damage.
The pathways for RLS symptoms seem to travel through the spine (Central Nervous System). IF it was Ropinirole the doctor tried to give you this is a common Restless Legs med which works with dopamine in the brain. Tizanidine is a strong muscle relaxant.
Have you had an x-ray or scan to investigate the back injury?
I injured my back a year ago but never had an xray until 2 months ago where I couldn't handle the pain. Have 2 herniated discs and a stress fracture in my T11 T12.
A year ago when Is when it started in my leg and back, just around the time injured it. Again, it was very weird because yes I was having back pain but this RLS seemed like it traveled to my legs. I was so confused because there was absolutely no pain in my legs, just that very odd sensation of constantly having to flex and move them. So when the doctor said do you have pain in your legs and back I said yeah ( i didn't know how to describe this feeling at the time) so immediatly they thought it was Sciatica. Long story short, that was A year ago and I still have RLS in my legs and the most annoying my back. Seems to be getting worse and spreading.
I really don't think it's rls- much more likely , given your history, to be a neuropathic condition. Does Acetaminophen or Ibuprofen help at all? Just give them a try for a few days- separately - and only if your stomach is in good order with the Ibu.
The reason rls is related to trauma injury operations is that usually opiate painkillers are used post operatively - then when finished- leave us with rls as a withdrawal symptom. In my view.😎
Yes, it is frustrating when you try to describe the feelings. Unless people have them they can't understand. As Madlegs1 has said the RLS symptoms in your back probably have been brought on by painkillers. I imagine you haven't had lumbar punctures or similar?
As for the long-standing RLS, it certainly is possible to be in your legs, back, toes, shoulders etc. The non-drug remedies include Iron, Magnesium, a gluten free diet, tests for coeliac disease or SIBO. There are lots of posts on this site about supplements and diet.
The starting point would be a non-fasting serum ferritin blood test at the doctor's. But, importantly, are you moving freely? Do you have a brace to support your back? Is it worse since your yoga exercise? Your doctor is the best help for you as you go forward.
Hi Neil. Thanks for your reply. Ever since my back injury I have only taken 1 pill ( not the whole bottle, just 1 pill ) of Ropinrole ( don't know how to spell it exactly) I reacted very bad to it and thought I was going to die when I took it. I stopped taken and will never take a prescription drug again. Yoga definitely helps the Symptoms but only temporary and going into night time is when it flares up again. Also, like I have been trying to explain. I absolutely have no pain anymore in my back, legs or where ever. Just a RLS feeling. I think I'm going to go to a walk in urgent care and see what the Doc thinks. I honeslty would be somewhat relieved if i could get to the bottom of this. I will also go head and probably try out some CBD oil and see how it works.
Funny thing, once again I was talking to a Peer who had surgery about his back, I tried describing what was going on in my back, he gave me this weird look and was like "huh"
Hey guys, just a little update if you guys are interested. went to an urgent care and the Dr. was very friendly and understandable, also seemed like she hadn't had many people with RLS come to her. I Described to her all of my symptoms and she did a little physical examination with some questions. All of my answers related to RLS. She told me if I had any medications for it, I told her Ropinirole and told her I had a bad reaction. She wanted me to go the more natural way and not prescribe me any hard medications, she said to use some Melatonin before you sleep. She said it obviously wont cure or help it, but itll help you fall asleep. If my problems get worse or the melatonin doesn't work, then proceed to go to my primary who can see which medications work for me, I don't think ill be going that way I don't want any non-natural medications, only 20 years old and do not want to be taking pills my whole life...
Thank you everyone for there concern! such a great website and place to talk about this, really made me a little bit more happy that there are other people going through this! take care.
Doctors generally don't know beans about RLS. I think we have some posts here about melatonin, but in the meantime have good luck with your RLS and your back and if you need to come back, we will be pleased to meet you again.
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RLS I call restless body syndrome
Restless Toes syndrome 
Relief from Restless Leg Syndrome
How to distinguish RLS and Periodiic Limb Movements?
Restless legs syndrome
