Does any one else suffer from RLS all over their body?


I’ve recently joined this website and wanted to ask if anyone suffers similar symptoms to mine. My RLS has come on so quickly and covers most of my body I wanted to see if others have experienced similar progression of RLS?

I’m a 32 year old male who less than 12 months ago had no symptoms of RLS at all. I considered myself in good health, was really sporty and exercised most days. I always had a well-balanced diet and a really good sleep pattern. No one in my family has RLS, I don’t remember suffering growing pains as a child and have never been on antidepressants.

This time last year my wife and I had just completed a road trip holiday across America over four weeks. I drove for 100’s of miles every day and did loads of hiking in some of the best National Parks and didn’t have any symptoms of RLS. I have never been one of those people who had to get out of the car and stretch my legs, or suffered problems sitting down for long periods of time.

My life has completely changed in less than a year when I first started to notice strange burning, itching, and tingling sensations in my legs. The sensations started in both legs, mainly between my knees and ankles, where my skin would feel hypersensitive. All sensations seem to be exaggerated from touch to temperature. I knew something was wrong straight away and went to the local GP but they put it down to stress because of my job in Sales.

Over the last 10 months the sensations have headed north and are now in my arms, my back, across my chest and stomach. As the sensations got worse I started to get insomnia, so that now I can’t sleep without medication. The sensations in my body are constant and tend to get worse in the afternoon. I also get deep muscle burn in my legs where if I get up quickly its feels as though the muscles in my legs tear. I also suffer fatigue in the afternoons and have headaches most days and am now suffering bouts of depression.

I had real trouble getting my local GPs to take my symptoms seriously so eventually saw a neurologist privately who diagnosed me with RLS.

I have tried many different medications, dietary changes, vitamin supplements, herbal remedies and nothing has improved my situation. I’ve had blood tests to check my Ferritin level, which is higher than average. I’ve also checked and I don’t have diabetes.

I have searched the internet and have read about people with symptoms like mine but they all seem to be suffering some other illnesses and worry this is a precursor to something more serious.

RLS covers so many different symptoms and affects people in so many different ways; it’s hard to know what truly RLS is.

I really would like to know if any one suffers similar symptoms as I do and if they appeared as quickly as they have with me?


57 Replies

  • hi, Firstly im sorry to hear how you are and that you had to join us here, in my case its just in my legs, im lucky there, one person i know who has it allover like you, is Nightdancer she in the directory here, so maybe you could send her a message, shes really good with the info, helped me so much when i first met her on these sites, and im sure she would be able help you


  • HI, and welcome to our group. Lots of people have "full body RLS". I know for me and lots of others that it does "travel", also. It can start in one arm, move to the shoulder blade, then to the legs, hips or thighs/shins, too. It is beyond miserable. I have been moderating support groups fr rLS for 15 yrs, and know people with RLs in 29 different countries, and there are people everywhere that have RLS all over. I am glad you fund a good neurologist. a great place for great information is Look for the treatment page and find the list of "Drugs and Foods to Avoid". This web site is the very best one for information that is always updated. You may actually see something you have not tried. It is a US web site, but RLS is universal. :o)

  • Hi Nightdancer. I hope you are still on this site. I have a sensation of internal vibrations. It started with simply a couple of nerves "jumping" in my feet. About 6 months ago the internal vibration feeling started in my left foot, then moved to my right foot and then one night the vibrations rapidly moved up my body to just under my breasts. The internal vibrations continue. I've had a Nerve Conduction study and they found a little weakness in my lower legs. I've been on Gabapentin, started at 1 pill 3 times a day until I was up to 3 pills 3 times a day. They have not been much help, not to mention I'm so tired from them. This week my GP put me on Neupro. Within 3 hours of placing the patch, my back started itching, then my breathing became very labored. I have an Epipen and had my Grandson run for it, by the time he got it back to me , I had ripped off the patch. Within a couple of minutes, Without the Epipen, the itching stopped and I could breathe again. My face was red and I felt weak and not quite myself. I took my BP (thinking it was either low or high) and it was normal. I have COPD, am allergic (anaphylaxis) to Penicillin, all Moxifloxacins and Morphine. I have reactions but not anaphylaxis to Bactrim and Keflex. I have a Dr. appt next Thursday but ran across this site so I wanted to know if anyone else has experienced the same reaction to Neupro as I did. Is there something safer for RLS if indeed that's what I have. I only have the extremely annoying internal vibrations and nerves jumping in my feet. I don't have burning or pins and needles sensations.

  • With all of your allergies, and I know how it is because I have a lot of allergies to meds, I do not want to suggest anything, with your COPD, and the allergy to the Neupro tells me you probably should not be taking dopamine meds, it was not just itching from the patch itself, but having to use the Epipen that is enough to tell me that you have a severe allergy. All I can do at this point, is to tell you to go over the lists of meds and classes of meds listed on the web site I listed in another comment. go to the treatment page and check out the meds to USE and the ones to avoid. There is no one med that works for everyone and with all you issues...........You are allergic to Morphine? What about other pain meds? I wish I could give better advice in this case, but you really have to get thru this with your doctors because you have so many things going on at once.. Pins and needles and burning are not part of RLS, they are part of peripheral neuropathy. That "urge to move" is the diagnostic criteria for RLS, simplified but still that is it.

  • Hi nanato3 -

    I have tried many different medications for restless leg. Some worked at first, but with side effects, and some not at all. Gamapentin originally worked for me but eventually the side effects made me stop. The patch, Nue-something? didnt help at all, and also gave me odd sensations. I was then given Requib by my neurologist which helped, but if I didnt take it religiously, or if there were any other variables such as caffeine intake or dozing too early in the evening it didnt fully work. If took an additional pill it made me very nauseous. I finally found what I feel is a very good solution - requib extended release. It comes in 3 diff mgs and while i still have issues (im writing this at 3am), its given me the best quality of life so far re RLS.

  • Mine too has escalated but not to any burning pins or needles. I feel like I want to jump out of my body. Like internal anxiety. It is the weirdest feeling not to be able to stop the constant movement. I am going to do some research on a Web MD and if no real answers heading for the university hospital to see if they have someone who treats this. If I find anything I will share. My best to you all.

  • sorry for typos. I am extremely sleep deprived, even for me. Hoping for a better night tonight!

  • Hi Si , welcome to the site where you can actually moan and everyone knows what your on about ,

    you say you have it all over your body wonder does it feel like a bad dose of flu but not in the joints but muscles hurts like hell at the touch even walking,

    The site Nightdancer put on here is a great one for info seems there's different degrees of RLS everyone's different but suffers the same guess we're all looking for answers ,


  • Hi

    I get RLS all,over, didn't at first and it grew slowly and its as bad in my arms as it is in my legs. Really caught me out when it first started happening!

    Find a meds package that works for you and stick to it, find a Dr that understands or who is willing to learn with you about RLS. Dont under estimate the benefit of pain killers!!


    Bob M

  • I have nights when my body aches and throbs all over, but thank god that doesn't happen too often. Mostly, it is my legs that ache and drive me crazy. I have been in healthcare for many years and think firstly that you need a new doctor, one who really listens to the whole picture. You have many and varied symptoms and it sounds like the road trip put you completely out of balance. BTW, the only thing besides compression stockings (sexy) and elevation that has helped my legs has been increased magnesium in the form of an oil that I spray on for quick absorption. Find a new and better doctor, please. In the meantime, I'll keep you in my thoughts.

  • arms, legs and neck/head - to be honest it's when my arms & shoulder go that I really really hate it...I feel like I want to rip the muscle out of my arm to make it stop...

  • Hi, like you I have only recently joined the site because I seek answers as well to this dreadful condition that we all seem to have. I'm still 'experimenting' with different solutions. It seems that there is no one relief for all of us and, as Bob M above says, find the meds that suit you and stick to them. All the very best.

  • Hi all,

    Thank you for your comments; I take some solace in the fact that others are experiencing similar symptoms as me. I am having a hard time coming to terms with the fact I have this disease, especially as it covered my body so rapidly. I will take all your comments on board and will hopefully find a level of treatment that I can live with.

    Many thanks


  • Hiya

    Sorry to hear you have it so bad. I too only recently found this site.

    I have had it in my legs since early teens but never really knew what it was. It got progressively worse and more disruptive. I thought I suffered from night terrors as I used to sleep walk and scream in my sleep. For the sake of my partner I had this investigated in a sleep clinic and found it was RLS that was causing this.

    Was such a relief to find out the real cause for what I always called twitchy legs. I have been getting it in my arms and shoulders in the last year or so. It usually occurs in the opposing arm and leg but when all four limbs get going thats when it really drives me insane and makes me want to reach for a hacksaw!!!

    I have been prescribed the Neupro patch and have 2 to wear over 24 hours. This works most of the time but when it doesnt it comes back with a vengance and there is no sleep at all, just pacing around all night. I find I cant sit or lay down for more than a few minutes and standing is the only solution.

    I hope you find some form of help with it soon.

  • That's exactly what I'm going through tonight and am very close to a chainsaw being started lol

  • Hi Guys......I,ve just found this site. I,ve been reading what alot of you have been saying..I thought i was going mad...I have RLS.. just got on with it, didnt tell anyone for years. I spoke to my daughter the other day, told her about this, but ive now got this through my whole body. I cant settle anywhere...I move my legs, i get in and out of bed.I turn round on the bed .I get up, walk about. Nothing seems to help...after reading that im not the only one, makes me smile Thank goodness, im not going mad....It drives me insane.. im already on Morphine patch 100....Tramadol 100.slow release. This is for pain in my other medication.... i also suffer from, when im relaxing, my body jumps. Is this related to RLS?.Ive also got sleep apnea. I wear a breathing mask most nights(should be every night) Believe me, with kicking my legs, jumping in and out of bed. Twerling around my bed, kicking my quilt on off on off, streching my arms and legs. wearing a breathing mask, some nights can be about as much fun as sticking pins in my can be a nightmare... im tired all day.. Im really finding it hard to cope with this.....

  • I'm new to this site but not to RLS. The RLS symptoms you describe as in your legs, arms and back are much like mine. It can happen any time of day or night, asleep or awake, and does not descriminate when or where. When RLS attacks my legs, I can hardly walk with my legs violently jerking. In my arms I cannot hold anything because my muscles act on their own.

    Ripping the muscule out sounds like a pretty good description of a remedy but save that for later.

    Percocets work but I do not recommend them due to too many reasons to list.

    The fentanyl patch along w/ a 30mg er morphine twice a day has allowed me to function fairly normal.

  • I too have had rls for about 25 years although I didn't know at first what it was. Itoo have tried everything except prescription medication. Anyone have side effects ? And does it make psoriasis worsen.

  • Also I too spend many nights just wandering around. It can also come on when I am at the theatre or cinema and has ruined a few nights out.

  • Hi Babas

    I would really recommend you speak to your GP about your symptoms as sleep deprivation can really damage your health long term. There is a good chance that the drugs you get prescribed will have side effects but the ability to get regular sleep is the most import thing.

  • Eventually, you have to get the sleep deprivation treated. You cannot make up for all that lost sleep lost. I have bever heard of RLS worsening or affecting RLS in any way. RLS is neurological in nature. Sleep deprivation and lack of quality of life kills, so I would not put off trying some treatment indefinitely. There are side effects to everything, even an aspirin, so everyone here has experienced side effects from something,. That was a pretty broad question, if you are referring to all RLS approved meds. check out the treatment page on :o)

  • I've been a sufferer for about 10 years now, but the intensity and severity has increased SIGNIFICANTLY the past 3 years, I now suffer throughout the day, and my meds don't always help. And yes, the pain has engulfed most of my body!

  • Hi

    Sorry to hear what you are going through. I live in Canada and definitely suffer with RLS all over the body. It originated in one leg from knee to ankle and eventually spread. Now I get it all over, have had it for years. You could try mirapex, requip, pramapexole and sometimes gabapentin works for some people. Also be aware because the first three drugs can cause cumulus ice behaviour especially with gambling, alcohol and sexual addictions. It doesn't happen to everyone but it does happen.currently I am involved in a class action law suit here in Canada as I became addicted to gambling. Be aware because prior to mirapex I had never gambled In my life. I also have been on fentanyl patch 25mg that you put on every 72 hours. It works very well. It is a synthetic opiate so not sure if your country will allow it. However it does also sound like you could have fibromyalgia. A friend of mine has it and your symptoms sound very familiar to his. With that he developed chronic fatique syndrome. Fentanyl works very well for him. Anyway maybe you could ask your doctor if it could be that and not RLS. I hope you find some answers. Believe me RLS is so frustrating and many doctors don't even take it seriously.

  • This is an anecdotal account of my experience with gabapentin, which I would not recommend to anyone.

    Gabapentin is a failed children's epilepsy medication, now used as a sleep aid.

    I took it for 2 months as a trial for my sleep issues (exacerbated by my raging RLS). In that two months I fell asleep quickly, but did not stay asleep. The medication is like a tranquilizer, it makes you groggy, drowsy, and ultimately "sleepy" but doesn't deliver the necessary and therapeutic benefits of real sleep.

    I awoke - and I use the term "awoke" loosely - frequently, throughout the night, disoriented, extremely groggy, and unable to properly wake myself up. It was scary, and unnerving. It felt like I was stuck in a dream, or had been drugged.

    I would wake in the morning very groggy and would have trouble thinking straight for much of the day.

    I abandoned this treatment as soon as the trial was over. I will take my tired semi alert self over the groggy drugged up slug gabapentin was making me.

  • Disagree wholeheartedly. Gabapentin is widely used for peripheral neuropathy as well as RLS. I have taken it since last October with absolutely no side effects and it has controlled my RLS wonderfully. Not everyone has the same reactions to the same medicines. There are no medicines that are perfect solutions for everyone.

  • How many mg. of gabapentin did they have you take? Maybe the dose was too high.

  • Hi,

    I just spent an entire night awake suffering from all over body insomnia. It is awful, and all of the stretching and movement you do to combat this, just makes you achy in the morning. So now I lay here with legs that are still quaking and restless arms. I'm on Pramipexole for legs but it just seems to make the symptoms worse. I worked out last night hoping it would afford me a good night's sleep, but no such luck. I think working out at night make

    my symptoms worse. As a rule, I have about three sleepless nights in a row? What have you ytu

  • Hi Marniefoy, yes working out close to bedtime can for many people make restless legs worse so best avoided . Sometimes the Pramipexole can make things worse too.What does are you on and how long have you been taking them?

  • Hello all, I have been suffering from all over body RLS for many years now. I couldn't find anything to help relieve the pain until my doctor put me on Trama-Dol for arthritis in my knee.(I am 45) I am now able to sit and sleep without pain and it's such a relief after so many years of not knowing what was going on. I never thought a pain killer for arthritis would work but fortunately it does. However I wish I could find something other than having to take pills.

    I am glad that I have finally found a site with others that understand what I have been going through as well.

    Thank you for allowing me to join.

  • I have this really bad. It would keep me awake for hours, and it's always worse when I'm super tired. Recently I decided to do a paleo type diet after watching the movie "The Perfect Human Diet". After I cut out 98% of processed foods including MOST wheat products, it's completely gone. I was out with friends a few days ago and they all ordered pizza, I had not brought my own meal, not thinking I was going out for very long. I was super hungry so I had a couple slices (a thick crust with lots of dough). After I returned home and went to bed, BINGO, it started up again, it seemed really bad this time. Maybe that was because for several weeks I didn't experience it. But, I got back onto my no processed foods program and wa-laa... GONE. I hope this helps someone.

  • It's funny that you mentioned food. I've noticed the vibrations move further up my body and intensify after eating. I actually went to the ER one night because it got so bad. My daughter swears by Paleo but I'm the first to admit, my eating habits aren't good. Bread and fatty foods are my downfall. Not to mention, sweet tea. I may have to rethink my meal plan.

  • Try drinking a tea with magnesium at night, my RLS is only on my legs and the tea made a huge difference for me, it balances out your calcium.

    Get it at the health food store, ask for a night time tea w magnesium

    Good luck

  • What I find helps with the restless feeling when you feel the need to constantly move your legs or arms is massaging, elevation and stretching with the help of advil. First massage whatever is bugging you by starting closer to your torso out towards your hands and/or feet. Then stretch it out to relax your muscles even more. When your legs have this feeling, lie down on your back, put your butt up against the wall as best as you can and let your legs rest on the wall. When you arms have this feeling, lie down on your back, and grab something that is above your head, like a head board and keep your arms elevated too. You'll know your doing it right when you get a numbing sensation in your arms or legs. Keep this up for another 5 -10 min when you notice the numbing. When you bring your legs down, you'll get a relaxing sensation. Trust me, this feels good and I can instantly fall back asleep or get back to work. If you want to speed up the process, take some advil or Tylenol so you are able to relax. I hope this helps.

  • I get rls over my whole body. It occurs when I am tired its the most frustrating and crazed feeling to have and not be able to do anything about it. Does any one get it up the back of there neck and into there head.?

  • I get it all over my body but like u into my head and it's almost like u have got to be scratching all the while driving me mad at last made a doctors app wash my hair every day .

  • I've had similar symptoms for years. Mine started in elementary school. I was told they were growing pains or fibromayalgia. No one understooday when I said it didn't hurt, but it felt like my muscles were constantly tense. I would stretch, but the tense, tingly feeling came back the second I stop stretching.

    I'm now almost 24, and am still dealing with the same issues. I have the urge to move my legs constantly every night, sometimes for hours before I can finally sleep. Most nights, the symptoms move into my arms, neck, back, and shoulders. Anywhereven there's a muscle, I often feel symptoms there.

    This happens every night, and they come on suddenly and then don't go away.

  • Sorry to hear you are suffering from this horrible disease.. I have just joined and have had RLS for 10 years now and it moved to my other body parts from my legs 2 years ago... When you say in your back... Do you mean lower back or spine? Mine is in my neck and spine and driving me crazy! I have been taking Magnesium and it has been working. I have also been diagnosed with Fibromyalgia and probably Sarcoidosis but haven't got a positive biopsy to confirm. ( had 3 already and that's enough for me)

    For the muscle and joint pain I am taking Tramadol slow release and I think that has held off the RLS as when I miss a tablet the RLS comes back. for my fatigue there is nothing that helps.. Out of the muscle and joint pain, fatigue and depression... the worst would be the RLS.., especially now it is in my spine.. Looks like another trip to my Neurologist. Anyway that's my whinge lol

    Hope you all find some relief and get your quality of life back



  • I've been taking Sifrol aka Pramipexol since I was 18 - I'm now 29. It immediately relieved my RLS symptoms. I highly recommend this treatment route.

    I'm a highly active, healthy young adult who sleeps like a neurotic guard dog. It's exhausting. If it wasn't for Sifrol, I'd be a zombie.

    I began on 0.25mg and am now at 1mg nightly. The sad reality is I'll continue to build up a tolerance to this somewhat serious parkinson's medication, but without it I'd never sleep.

    I have, however, found that on the odd occasion where the RLS spreads and takes over my arms, shoulders, and hands, that the meds are rendered near useless and I end up having to take 2 or 3 times my dosage to make it stop.

    I've tried magnesium, and all the other natural sleep aids with no success or relief.

    Additionally, a lot of exercise/hiking can actually increase the prevalence of symptoms - so that's fun!

    If you haven't already, do a sleep clinic session, get a good doctor who will work through your medication options.

  • Hello Si,

    Did you ever find info on your symptoms above. I see this was from 4 yrs ago. I have similar sudden symptoms and similar age/lifestyle.


  • You describe that your illness started after visiting several national parks. Your symptoms say: Lyme disease, possibly with other tick-borne infections too, such as bartonella. You don't necessarily have to have noticed the tick bite or any red spot. Please go to a 'Lyme literate' doctor, i e one who specialises in this and follows the ILADS guidelines. The mainstream doctors don't take Lyme disease serious enough and use insufficient tests. I notice your original post is four years old, but you are not likely to get better without treatment, only worse. RLS is obviously just a symptom, not a cause. (Not saying that everybody with rls has Lyme, but many probably have. It depends on the symptoms and overall picture).

  • I just going to maybe answer some questions people had on here about having RLS all over there body! I went to my dr. A few weeks ago and I told him about mine and my back spasms and I was told it was due to me having factor 5 lieden and that can cause me to have RLS and fibromyalgia and I also have pseudotumor cerebri and ADD and going through all that at once is very hard to manage but if you get checked for any of those and any are positive than maybe that's why your having your RLS all over or you can find some different answers for me, lol I'm only 25 yr. Old female with 3 boys ranging from 8yrs to 2yrs old and I was diagnosed with all this 2 1/2 weeks before Christmas in 2012 with the pseudotumor and I got diagnosed with factor 5 lieden when I was pregnant with my 3rd. Baby and they found 2 blood clots, 1 in my left thigh and my left lung and I was on blood thinners till after he was born and thought it was due to pregnancy so I was on the meds till jan. 1st 2014 cause I got rushed to the emergency room and they gave me all the pain meds they could put in a person my size and still in the worst pain ever I was falling asleep I was so drugged up and waking up every so many mins screaming in pain and they tell me I started bleeding out after my 3dr. C section in 2013 and developed a hematoma the size of 2 I.V. bags so they put a drain tube in for a week and nothing worked so I had to be cut back open to remove it and the dr. Said your lucky your still alive cause it was starting to rhine or get infected and I was put on antibiotics and went home and I went to a good dr. Who rechecked me for everything in Oct. 2015 and he said your lucky your still alive today cause with factor 5 most people don't make it when there not on blood thinners and so now I'm back on them but the kind there trying to recall and that's a scary thing so if anybody has any answers for me It will be so appreciated and I hope I helped some people going through what I'm going through!! Sorry I told my story when I was trying to help some one else but I need some answers to cause neurologist look at me like I'm crazy when I tell them what I've been through like they can't believe I've been through all of this:( hope everyone has a great day:)

  • I do and I am awake with it now, for me it's an intense agitation within my body..yes the legs are bad but I have to stretch my arms like a crazy woman too to try and relieve sensations coursing through my upper half too..almost like oalpatations and tickling (the absolutely not funny tickling). I just have to continually flex my calves shoulders and arms and then I get cramp to add to the joy. Oh yes and itching is the recent I am otherwise pretty well as far as I know. I need to go back to bed now but wanted to offer support through parallels. Hope you are OK :) colleen

  • Hi ColleenAllen   So sorry you are having such a bad time.  This chimes with me - the horrible crawly sensations in arms and legs and recently also chest and abdomen,  oh and the itching and cramp.   The sleep deprivation is making me forgetful and clumsy.   I can't recommend a treatment as I've been putting off going to my G.P. as I already take several medications for severe arthritis.   I do hope you find the info.  and experiences of other sufferers on this site helpful.

  • That's exactly my symptoms with the ittichiness as well that's the worst didn't realise so many people suffered x

  • Hi hidden well I have it all over too and it's horrible . The only thing that works for me is pain killers and tabs for trigeminal neuralgia nerve pain It takes days to come out of and can come back as quick as a wink . I hate it , it's ruining my life . I also have fibromyalgia and several other things , but I do know that it's common for people with fibro , had it all weekend and again today . I'm so sorry your suffering with this and remember as soon as it starts get out of bed and walk up and down , also stretching excersise . If you find anything that works could you pm me please

    Thanks good luck with it. 😇

  • I also struggle with this whole body RLS and just recently noticed the Mirapex isn't functioning as well as it used to.  On a side note, I'm having other issues looked at right now and was curious if you've had some of these tests done too.

    You mention the Ferritin test, but what is your iron level and iron saturation?  If these are low, which mine are extremely low and probably part of my problem, that also contributes to it and its severity.  The other thing is, have you had your thyroid checked?  I'm going through testing right now and I'm fairly certain this has been driving my recent declines in health overall.  Just thought I'd throw those out there in case they've been overlooked as well.

  • I have had it 40 ish years on legs, 4 years ago started with in my arms shoulders all upper body really, I take amitriptylene at night, have recently had 4 sessions of acupuncture and it has worked it is marvellous.

  • Hi. I've been suffering since I was about 10 years old. I thought this was just growing pains but today I realized I might have Restless Leg Syndrome but sadly, it affects my whole body the same as you. My aching lasts for a few hours, maybe 5 but once I'm walking or doing something, it doesn't do anything thankfully.

  • Lyme disease was mentioned to you. I think that is possible. I would look into parasites in general. I also got extreme rls very quickly at age 31. It included other parts of my body as well. Turns out I had a parasite, Liver Flukes. This was the cause of my rls, restless body, and my high anxiety. I would encourage most people with bad rls to do a very thorough parasite cleanse or 2 and see if it helps. Keep in mind, some parasites, including liver flukes, will not be eradicated by standard parasite cleanses. However, these cleanses will likely kill some of the parasites and alert you to the fact that a parasite is an issue for you. you may then have to move on to additional treatment. good luck!

  • I have had RLS for years in my legs. The all over body feeling started a little over 3 years ago. I truly believe it started from a failed hernia umbilical surgery. Imagine having a knife pushed through your stomach every second of your life. So I realize now for me it was caused by a traumatic event. Sadly, both the stomach and all over RLS feeling has no cure. I take Hydromorphone for my stomach, Valium and muscle relaxers. Does nothing to help either issue.

    I have a theory. When we think about this uncomfortable feeling all the time, it just spins in our head. It becomes a vicious cycle. It brings on a feeling of anxiety for me. That is why many people get Amitriptyline. It is an anti-anxiety pill. It doesn't mean you have Anxiety as everyone is different. But it does act as a sedative. Calms down the spinning and the nervousness we feel.

    I am trying not to think about the pain and replace the thought with "Breathe". It is the same as Meditation. Pain is hard to ignore, but with some proper treatment and a change in our thought process it might work. Again, this is my theory.

    I truly wish everyone all the best. It is a daily struggle for all of us. All I know is, we have to try something that goes along with the medication. Best of luck.


    Have it all over. No meds 4 two days. Away from home losing my mind. Can barely type bc i have 2 keep moving

  • There must be a doctor wherever you are so go and ask for a prescription

    The way the system works now they can log into your medical notes from anywhere in the UK

    If you are abroad you can normally buy meds from pharmacy.

    I bought Mirapex from pharmacy in Spain

    Hope you get sorted out

    Pipps x

  • Godsgiftmykids. Did you forget to take your meds with you..? What meds do you normally take. ? Its hard to sleep when we forget our meds, i can only suggest hot baths as hot as you can stand it. Lots of stretching, see if you can buy from a chemist some menthol spray, or rub, the menthol can numb your legs for a little while. OTC you can get some co-codamol, if you live in the UK. they MIGHT help a bit.

  • I am on this site learning about RLS. I am now having periods of just having my whole body unable to stay still and it is keeping me up nights. Has an RN for over 50 years, and by no means am I qualified to give treatment advice for this but your symptoms sound like a little more then RLS. I am a huge believer in getting second and third opinions. They saved both my husband's life and mine. I don't know where you live but I have found that large university teaching hospitals have the best resources. Do not know your insurance status but that is where I would go next. If you don't have ins that will allow this then the next step might be internal medicine or neurologist. When I go to a new doctor I check first where they attended medical school, residency and if they are board certified. I have not read enough info yet to see if these symptoms can accompany RLS. Regardless, you are not being treated if your quality of life is impacted to this extent. Hope this helps some. My best tobyou.

  • Hello everybody!

    I have RLS symptoms ( all the symptoms) since few years, first I thought it is overtired from work. Then few months later same thing happened, but it was at the weekend, no work. Since then it comes and goes even daytime. In the last few months I am out of work relaxed and the symptoms coming more often day or night doesn't matter. Yesterday I had very low blood pressure all day, even my monitor could not measure it, and beside I get a migraine. At the afternoon I fell a sleep, beside my laptop, slept over an hour. Unusual for me, never sleep daytime. In the evening I went to sleep after 10 pm, after 2 min. I started to have strange feeling in my legs, had some cramps, spasms, itchy skin, pain in joints, then it was moving all around, and all over my body. I was tossing, turning, getting so irritated, after 1 and half hour I had to get up. Soon as I walked few seconds I was started to feel better. I knew I cant stay up all night, so I took 1 pill which is was for muscle pain, it is makes you relaxed, sleepy. After a while I was feeling very sleepy, so I went back to sleep with no problem. Soon as I wake up at the morning (6am) righted down my symptoms and I found out I might have RLS. Next step will be go to the doctor, but I get an appointment for the end of June. Anybody have any advice how to deal with it until my doctors appointment? I don't really want to take muscle pain pills, it is makes me sleepy, dizzy.



  • I have RLS also fibromyalgia. Really though days and nights passed till now but dealt with RLS in some ways.

    - Drinking bone broth is really working. But, after drinking it, you are smelling like bone broth :)

    - Drinking soda and eating banana may reduce the twitching, pain, and restleness feel.

    - I'm exercising at least 4-5 days of a week with a freeletics program. Exercises has advantages and disadvantages on RLS. I think advantages is more than disadvantages.

    - Do not live a fast sex life. Ejaculating is triggering the symptoms. Try to keep away from intercourse and masturbation for one week. At most, one or two time in a week. Just try it.

    - Stress is a too harmfull for RLS patients. Using medicines makes you addicted and stressful day by day. Rid off medicenes, start the exircise, sleep in regular times if you can. You have to eat healtly foods. Do not consume sugar, flour, coffeine and alcohol.

    Work on lists and turn back your sweet sleeps.

  • I didn't get RLS until I was 63 years old! At first it was only my legs but after a year it extended to my hands.

You may also like...