Does any one else suffer from RLS all... - Restless Legs Syn...

Restless Legs Syndrome

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

91 Replies

Hi

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?

Si

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91 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

jean

nightdancer profile image
nightdancer

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 isrlshelp.org 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)

in reply to nightdancer

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.

nightdancer profile image
nightdancer in reply to

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. rlshelp.org 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.

Beffie98 profile image
Beffie98 in reply to nightdancer

Does the RLS make you feel like your gonna jump out of your skin?

nightdancer profile image
nightdancer in reply to Beffie98

yes, exactly. That is one way of putting it. That is a good way to describe it, and I also use the description of "electricity building up" and it finally "explodes" and that is MY personal urge to move, every 3 minutes when it is raging, and even constantly with no breaks for days. Then, for no reason, and I have kept journals for 28 yrs, RLS will quiet down and give some peace for a bit. Some people have gone into long remissions, and then bam! it is back. it is an evil syndrome to deal with. :)

wsp245 profile image
wsp245 in reply to nightdancer

Nightdancer; I finally found someone with the same issue. It's like someone stuck a taser in my chest! My doctor looks at me with the deer in the headlight look. Are there any studies out there on this symptom? What did you do about it.

Sjcarr profile image
Sjcarr in reply to

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.

ruokay87 profile image
ruokay87 in reply to Sjcarr

I have tried all medications to stop it. I even had my nerves and muscles checked out and those were fine.. I found by accident one time that Tramadol stop my RLS in its tracks. If I take anything over the counter it will cause my RLS to go wild. anyway, I had minor foot surgery on my foot in the doctors office. then he gives me sample packets of Tramadol and say it knock the RLS.. My RLS wont stop on its on.

frank1942 profile image
frank1942 in reply to ruokay87

hi guys I suffer the same tried all medications don't work,its so bad sometimes you could jump out of your skin, with me its go to move cant concentrate on TV or watch a film even work on the PC,I have to work until I drop or fall over,explain that to a doctor they don't believe you,some of the sleep medication they gave me sent me crazy, your mind wants to sleep but your body wont let you. you walk around like a zombie. last night went to bed at 10.30 completely exhausted but was walking around roughly about every hour, the wife asks you to settle down but you have to walk,ther is no pain as such unless you have had it you cant explain it, they say it could be sleep apnea but first you have to go to sleep, I could be in trouble for doing the gardening at 2.00 in the morning, sometimes that does help it keeps me moving, not sure were to go next maybe change doctors or see a specialist ,

Take care and good luck regards frank

cWRN profile image
cWRN in reply to

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.

ImpossiblySo profile image
ImpossiblySo in reply to cWRN

I'm dealing with this and it is the most agonizing painless thing I have ever experienced. My room mate says what's wrong. I say everything then they say what hurts I say nothing. SMH. I'm having full body anxiety attacks everyday now lasting for hrs on end. Omg I want to go to the e.r but they will just think I'm crazy. But I'm about to have a meltdown because I can't live like this forever

nightdancer profile image
nightdancer

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 ,

sal

BobM profile image
BobM

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!!

Kindest

Bob M

ruokay87 profile image
ruokay87 in reply to BobM

Tramadol stops mine immediately. Doctors make you lie to get them. They say oh that's a pain medication, its not for RLS. To have this is misery, then have the doctor act as if Im seeking drugs. Also, once the RLS starts up. You cant think anything else. your mind stays focused on your RLS and never stops.

Ruthenium profile image
Ruthenium

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.

evianfan profile image
evianfan

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...

addcrazy2thelist profile image
addcrazy2thelist in reply to evianfan

Thank goodness I'm not the only one who feels this way. It used to just be my legs now it's both my arms and I feel like if I could cut off my arms and legs it would be better. Punching my arms or pinching them actually feels good while this is happening. It only happens at night and not every night but when it does I can't sleep at all. I'm not normally like this and I don't ever have morbid thoughts like this until my arms joined in with my legs. I feel like I'm going crazy when this happens. What has worked with your issue?

Hammyton profile image
Hammyton

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

Simon

gertlushbird profile image
gertlushbird

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.

Dannyc987 profile image
Dannyc987 in reply to gertlushbird

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

XxCooxX profile image
XxCooxX in reply to gertlushbird

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 back....plus 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 eyes...it can be a nightmare... im tired all day.. Im really finding it hard to cope with this.....

RLSer profile image
RLSer

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.

Babas profile image
Babas

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.

Babas profile image
Babas in reply to Babas

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.

in reply to Babas

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.

nightdancer profile image
nightdancer in reply to Babas

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 rlshelp.org :o)

ralph0226 profile image
ralph0226

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!

Rubylane25 profile image
Rubylane25

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.

tiredtiredtired profile image
tiredtiredtired in reply to Rubylane25

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.

marsha2306 profile image
marsha2306 in reply to tiredtiredtired

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.

marsha2306 profile image
marsha2306 in reply to tiredtiredtired

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

Marniefoy profile image
Marniefoy

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

in reply to Marniefoy

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?

Ambrosia profile image
Ambrosia

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.

SageinReno profile image
SageinReno

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.

in reply to SageinReno

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.

Retren profile image
Retren in reply to SageinReno

could have been gluten which bothers me a great deal.Plus bleached flour.

Weekatie78 profile image
Weekatie78

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.

eloiuse profile image
eloiuse

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.?

Glenis profile image
Glenis in reply to eloiuse

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 .

WarriorArnelle profile image
WarriorArnelle

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.

Dragonman68 profile image
Dragonman68

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

Cheers

Greg

tiredtiredtired profile image
tiredtiredtired

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.

bc3000 profile image
bc3000

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.

Regards,

xasper profile image
xasper

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).

Jennybbetw5 profile image
Jennybbetw5

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:)

ColleenAllen profile image
ColleenAllen

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 addition..ps 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

fidgettyme profile image
fidgettyme in reply to ColleenAllen

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.

Glenis profile image
Glenis in reply to fidgettyme

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

Matrix profile image
Matrix

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. 😇

CBDworksgreat profile image
CBDworksgreat in reply to Matrix

Hi Matrix, I’ve had RLS for as long as I can remember. I’ve always had it in my legs but in the last year or so it has moved to every part of my body, the worst is when it’s in my stomach/abdomen. It’s truly maddening, you want to hit the areas where it’s happening or just kick or break something. Your brain is begging you to go to sleep but your body says, NOT TONIGHT! It’s a battle that would drive many people insane. I know what your going through and it really can destroy your life or change who you are and that’s just not an acceptable way of life. Doctors don’t take this seriously at all, the only people who do are the people who have it. You can try to explain how it feels to someone who doesn’t have it but they will never have a true understanding of how awful it really is, if they’re lucky that is. I wouldn’t wish it on anyone. I thought I was going crazy until I found this blog because as I mentioned earlier I’ve only suffered from the leg portion until recently when it has spread throughout my whole body. I’m a 42 year old male in good shape and I’ve lived with this devil of a disease my entire life. RX meds are a joke and do more harm than good, especially gabapentin which has recently been linked to BRAIN SHRINKAGE!!!! Seriously, look it up! I know someone that has recently been diagnosed with brain shrinkage because of the gabapentin which will eventually lead to Alzheimer’s and dimencia. I can’t believe this awful poison is still available and approved by our wonderful FDA. So the reason I’m writing you is I can absolutely sympathize with what you’re going through. I also have anxiety and didn’t do well with benzos such as klonopin, Xanax etc. So I tried CBD oil for my anxiety which does take the edge off but accidentally discovered that within a few short minutes my restless leg and body, especially in my stomach, was completely gone almost instantly!!! I kid you not and no, I don’t smoke marijuana as I don’t like getting high but the CBD oil contains no THC. It is legal in all 50 states and has ZERO side effects! It can be purchased at many health food stores and online. Don’t buy it from Amazon, they only sell “hemp oil” which is not the same thing at all. Be sure to buy the full spectrum one and buy the strongest one being 500mg in a 15 mil. bottle, 1000mg in a 30 mil. and 2000mg in a 60 mil. bottle. A 60 mil. bottle will cost around $120 so it’s a bit pricey but as you know, you can’t put a price on relief from this maddening condition that most drs. think is a joke. It also has many other benefits such as helping with digestive conditions, eczema etc. I’ve had seasonal eczema, only during winter, where my hands would crack and bleed to the point my knuckles looked like I punched and broke several windows and it would not heal. Very painful! When I asked my dermatologist how to heal my knuckles, her response was to use actual “crazy glue” to seal the wounds which eventually worked but who the hell wants to deal with that along with steroid creams that if not used properly will eventually thin your skin which is irreversible. Since I’ve been using CBD oil regularly this is the first winter that I have no eczema condition and don’t even have to use hand lotion. If someone told me what I’m telling you, I probably wouldn’t believe it at first. But I’m telling you the truth and I hope other people will read this and see it work for themselves as well as you. CBD will not get you high, if it did I wouldn’t use it. But it has been a life saver for me as my whole body RLS was extreme along with digestive issues and eczema. Do some research if you’d like but don’t hesitate to try it yourself, it’s improved my quality of life with ZERO side effects and has helped with other health issues that had several drs. scratching their head. I was tired of hitting a brick wall every time I saw another specialist and tried some of the FDA approved poison that kills people every day. CBD is a natural substance and LEGAL without a script or a medical marijuana card. Good luck to you and whoever else reads this and please, give CBD oil a chance and you’ll know almost instantly if it’s going to work for you. I’ll bet it does!!! :)

Matrix profile image
Matrix in reply to CBDworksgreat

Hi thanks for that and I’m so happy you have found something that works for you .I too used to have just the legs when I was a young girl but then it started full body and its misery ,I also have exceama and leaky gut so it sounds very similar to you .I also have lots of different conditions too.Thanks again love and hugs 🤗🦋

Stressjunkie profile image
Stressjunkie

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.

dormarpor profile image
dormarpor

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.

KaleyT profile image
KaleyT

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.

Mattw profile image
Mattw

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.

Godsgiftmykids profile image
Godsgiftmykids

LOSING MY MIND!

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

Pippins2 profile image
Pippins2 in reply to Godsgiftmykids

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.

cWRN profile image
cWRN

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.

DoraM profile image
DoraM

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.

Thanx

Dora

at441 profile image
at441

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.

Faithatthebeach profile image
Faithatthebeach in reply to at441

After 20 years of diabetic peripheral neuropathy ( damaged nerves), and central nervous system damage, severe RLS began. My symptoms are like some of you. I get RLS through my entire body and a horrible feeling of being stuck in my body unable to get out. I tossed and rolled around on the floor crying and pleading for help, and for 10 years doctors have tried every drug and tactic mentioned in this community. However l finally got relief with opiates, and it literally went away. I have been taking morphine or oxycontin daily for 5 years and l strongly disagree with at441 that taking these meds causes drug addiction. You may develop a physical dependence on the dosage of certain meds but unless you have the psychological problem, " addictive personality", there is no reason that drugs for pain make people drug addicts. In fact an interesting phenomenon happens where the opiates know to go to the nerve root of the pain and not cause euphoria. But without pain the drugs make you high. As a psychologist, l am not a drug pusher, but if talking about physiological diseases isn't going to work, l suggest finding a pain management doctor for effective help. There is no reason to be tortured every night and day when there's something to prevent it, as the people taking the tramadol have discovered. My deepest empathy to all of you suffering from this torturous RLS disease🙏

marsha2306 profile image
marsha2306

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.

sharonedillo profile image
sharonedillo

I know all to well what you are talking about. I've been dealing with this for 6 months now. My oldest sister (63) just started in this misery. Which I take Lyrica for mine. If I miss a day of taking my meds. I certainly pay dearly for it.

APOSTLEDON profile image
APOSTLEDON

Hi. Si..YES..I ORIGINALLY FIRST CAME ABOUT WITH RLS IN 1983 WHEN WE WERE ON A MISSIONARY TRIP IN MEXICO WITH A FRIEND OF OURS..WE WERE IN HIS CAR FOR OVER 4 HRS. WITHOUT GETTING OUT AND I FELT LIKE I COULD PUSH MY FEET THROUGH THE FLOOR BOARD...THAT QUIT FOR A SEASON..AND WASN'T BOTHERED BY IT FOR YEARS...THEN AROUND 1990 OR SO I SLIPPED A DISC IN MY LOWER BACK AND SINCE THEN I HAVE RLS CONSTANTLY...BUT IT WAS ALWAYS IN MY RIGHT LEG ONLY...THEN ON OCTOBER 18, 2017 I SUFFERED A TERRIBLE ACCIDENT IN MY HOME WHEREIN I FELL AND CAUGHT MY LEFT ARM IN THE END OF MY BED BETWEEN THE BOARD AND SPRINGS..KNOCKED MYSELF OUT DURING THE FALL AND WAS OUT FOR 2 1/2 HRS..FINALLY CAME TO AND NOTICED MY ARM STUCK AND COULDN'T PULL IT OUT...I WAS IN THAT POSITION WHERIN MY ARM WAS SO PINCHED THAT I COULD NOT MOVE IT, AND WHEN I TRIED THERE WAS SO MUCH OF A PAIN I HOLLERED OUT..BUT THERE ARE NO NEIGHBORS AROUND TO HEAR ME HOLLER...I WAS IN THAT POSITION FOR 9 1/2 HRS..I LOST MY VOICE..AND THE ONLY THING THAT SAVED ME WAS GOD'S MERCY...I WAS SUPPOSED TO GO ON A TRIP WITH MY FRIEND THE NEXT DAY..I WAS SUPPOSED TO LEAVE MY PUPPIES WITH A FRIEND DOWN THE STREET AND I WAD TO LEAVE AROUND 7:00 A.M., WHEN I DIDN'T SHOW UP SHE CAME DOWN AND SHE HEARD ME SCREAMING OUT..SHE CALLED EMERGENCY..BUT THAT LEFT MY LEFT ARM WHEREIN I CAN'T USE IT, (( IT'S BEEN 10 MONTHS ))..BUT NOW THE RLS IS ALL OVER MY BODY...I'VE TRIED HORSE CHESTNUTS..BUT THE ONLY THING THAT WORKS IT METHODONE..AND I HATE TO RELY ON THAT BECAUSE THEY SAY IT IS SO ADDICTIVE...I ONLY TAKE IT WHEN I CAN'T SLEEP..SORRY Si...

APOSTLEDON profile image
APOSTLEDON

HI AGAIN..I FAILED TO MENTION THAT LAST NIGHT WAS THE FIRST NIGHT I ACTUALLY WANTED TO GET OUT OF THIS WORLD...I PONDERED ALL THE IF'S, WHEN'S, WHO'S AND WHY WOULD HE DO THAT? BUT REALLY, IF YOU TELL SOMEONE ABOUT THIS ( I'M 80 YRS.OLD ) AND HAVE HAD A WONDERFUL LIFE TOGETHER WITH MY WIFE WHO PASSED ON, ON MARCH 31, 2010 WE WERE MARRIED 55 YRS...AND I HAD SUFFERED A BACK INJURY EARLY IN MY LIFE BUT ALL IN ALL I HAVE HAD A GOOD LIFE UNTIL THIS "DEMON" RLS, JUMPED MY BODY...ESPECIALLY LAST NIGHT. I HAD GOTTEN UP ABOUT 20 TIMES ( not exagerated ) I WAS LAYING THERE AND IT FELT LIKE I COULD JUMP OUT OF BED FLEX MY ARMS LEGS ETC..I HAVE TRIED GEGAPETIN AND I DON'T THINK IT WORKS FOR ME, IT MAKES ME DROSEY AND SOMETIMES CAN FALL ASLEEP, BUT VERY SHORTLY I'M UP AND WALKING, WATCHING TV SCREAMING TO MYSELF WONDERING IF THERE ARE ANY OTHERS THAT HAVE IT THIS BAD...I'VE LITERALLY HAD ABOUT 15 HRS. SLEEP IN 8 DAYS...I FEEL LIKE A ZOMBY..I'VE GOT ANOTHER APPT. WITH FD NEXT WEEK AUGUST 14TH MAYBE HE HAS SOME GOOD NEWS FOR ME..Thanks folks I hope all can have a beautiful day today and GOD BLESS ALL

Stirkrazy profile image
Stirkrazy

I've had RLS for as long as I can remember, but until a few years ago, it didn't impede my life very much. Then I noticed that the creepy crawly feeling was starting to really bother me when I relaxed in the evening, and worse when I wanted to sleep. I was able to relieve it a bit by drinking tonic water that has Quinine in it. My dad had really bad RLS and he was able to get Quinine tablets and that relieved it. My RLS disappeared completely in the spring of this year when I developed my 4th spinal compression fracture, and was put on various pain and muscle relaxant meds. I no longer take them, except on a few occasions, and not only has the RLS reappeared, but it now envelopes my entire body! I want to scream out in frustration. This is a new development in the past week, and so far, the tonic water doesn't help... maybe I should had gin ha ha ha! I'm going to see my GP, who had once told me that she could prescribe Quinine tablets. I need something, because I desperately need a decent sleep!

Soma_1 profile image
Soma_1

are you still around? sound similar to me? Let me know if you want to email?

Hishoney profile image
Hishoney

I don’t have wrestless Leg syndrome. I have wrestless body syndrome. I don’t have it all the time, but about every four weeks or so. My first account of this was around Thanksgiving of last year. I didn’t have another event till last month. Now it was again last night. They seem to be getting closer than the first time. I’m 71 years old and disabled.

I have never felt anything like that in my life. I didn’t even know there was such a thing as a whole body syndrome. The feeling was that I didn’t have any control of it at all. It started with one leg, and the next thing I knew I was into the center of it again. It takes over my whole body and I cannot sleep. I’ve tried, but end up throwing off the covers and having to sit up, only to have it still all over. I feel like crying. It’s so frustrating. Since this is a new thing for me, I have no idea what causes it or how to stop it. I’ve never had anything like this before, and I’ve been around quite a long time now.

Retren profile image
Retren

his honey My word what a nightmare! My advice for what it is worth is to make a list of all the medications you take plus list each meal and what you are eating. So many things can trigger this awful condition .Then look on this site for postings that tell you the many items which are not advised for RLS bearing in mind we are all different and what is a problem for one person is not necessarily one for another. you don,t mention wether you take anything to treat this or if you see a doctor who is if not you need to get help to obtain any relief. 7 Feb 2018.

Lizzie108 profile image
Lizzie108

Hiya how are you doing yes last night whenever I woke up my whole body would stretch and not just my legs!

I have Kalm tablets 2 before bed and 2 more if can’t get back to sleep

I also try and walk an hour most days as I want to lose weight so that I can come off blood pressure tablets and I am seeing my doctor for the first time this week about it to see what else can be done about it

Liz x

Lizzie108 profile image
Lizzie108

yeah my whole body has started to stretch now as I have just woken up but I am still in the middle of sleeping, I lift my arms up lol x

alps779 profile image
alps779

Hidden, I too have RLS all over my body. I've had it for awhile and have been calling it RBS. Not only all over body; it also affects my breathing. I call it distressed breathing. When the condition is subsiding I can feel my breathing start to relax first.

I've been able to directly link RBS to my diabetes, however. Symptoms occur after eating more carbs or sugars than I should be ingesting. It used to only happen at night but, the last couple years it can happen any time of the day or night. Night time is definitely the most uncomfortable and inconvenient. Hmm I too have high Ferritin though.

My Provider also refused to take me serious so, I've had to treat it myself. I take Diazapam for anxiety and Oxycodone for chronic pain. I accidentally discovered the Diazapam can greatly reduce the time of suffering. I then discovered if I also took an Oxycodone at the same time the symptoms are knocked down even quicker.

Recently my Provider discontinued the Oxycodone because of the political pressure, and my insulin because I had a good A1C. This increased the frequency of my RBS to everyday! However, I still have the Diazapam which, has been a blessing and I talked the Provider into starting the insulin again. Good luck Hidden it's not a fun thing to deal with!

Meow55 profile image
Meow55

Hi there,

Im pretty new to this issue as ive recently been prescribed antidepressants, but one thing i have been using, especially on my back when its really unbearable, was icy hot. Smear that all around and lay down and its been doing the trick so far! Hope this helps

ruokay87 profile image
ruokay87

I am 66 and have rls from the age of early twenties til now. only now it is full blown. its like something attack my nervous system. for the past few years I been taking Tramadol 50mg. This stuff knocks the RLS in its tracks. I cant take any medicines over the counter. that's what aggravates it. My rls is between my knees and ankles. it can jump from one leg to the other or jump from legs to the arms. I took a regular Tylenol and in a short time it had hit my system and didnt let up for two and a half days later when I got more tramadol. within the hour I had it under control. I couldnt sit stand or lie down.. Im a heavy person and all I could do is walk. it I stop walking my leg would jump out from under me..laying down I would roll until I got up. when my mom died, she couldnt die in peace because of her RLS. Her pressure got down to six and she couldnt die in peace because of the rls. daddy rubbed her legs while she faded from earth. when I have it as bad as this last time. I start thinking what I can do to commit suicide. feels like someone my daughter has it at times. She takes a small bit of childred Dimeatape. seems this attacks more at night unless its full blown. It also seems women has it more than men. Although my one brother had it. I dont know the right spelling of it but I think the ciatica nerve has something to do with it. more and more people are getting this these days. we all must have something in common causing it. if you try explaining it to a doctor, they think you are nuts. maybe its additives or preservatives in foods causing it..I do know one thing. It has something to do with the nervous system. Im so happy I found this site for RLS.

Lady_Thorcon profile image
Lady_Thorcon

To get an idea of what symptom goes to what, look up "Central Sensitization Syndrome" which is an umbrella term for about a dozen issues with overlapping symptoms including RLS. I have RLS mostly in my chest, so it screws with the electrical signals to my heart... fun. Fibromyalgia, RLS, and some other unexpected ones are included. I have used low levels (7.5/325) vicodin to keep it under mostly under control. (Well, I did until politicians needed a platform so decided to "control" drug addict issues by taking the meds away from the people who get them legally. If they could take them away from those that use them ILLEGALLY, there wouldn't be a drug issue to control, so I guess it makes sense to a politician.) Just saying so you are aware of problems getting vicodin. If you get it, and it works for you and you have multiple attacks a day, cut them in half and take them as soon as you catch the attack coming on. It helps. Good luck.

samtyson22 profile image
samtyson22

I have horrible episodes of RLS all over and I get very irritable and mean when I am having an episode I am on medication for it but here lately it doesn't seem to be helping I don't know if it's my diet or I need my medication adjusted

Kaarina profile image
KaarinaAdministrator in reply to samtyson22

What medication are you taking samtyson and what dosage?

agentile0217 profile image
agentile0217

Yes I have your exact same symptoms. Yes the Drs. look at me like I'm from Mars. I bought some over the counter stuff that really isn't working. That being said I have cancer and am on numerous drugs many of which have so many side effects I am clueless how to get help. I am now going find out some how to treat this condition because I'm beginning to not like night time and many afternoons. This came on slowly than bang, everyday for the last month I get very little sleep because I can't even do computer because I have to stay moving.

keekeemarie79 profile image
keekeemarie79

I have suffered occasional RLS but suddenly I’m experiencing symptoms to similar to. RLS traveling up my back and now into my shoulders. It doesn’t happen every night but last night was one of the worst. I got up from bed and stretched and tried some yoga moves nothing relieved it. It’s more mid back. I had 2 hours sleep last night and hosting a dinner later. This is affecting my life and yet no one I know has experienced this.

I’ve spoken to my GP who prescribed Lyrica and tramadol . I’ve been taking B12 and magnesium

Has anyone found relief? I’m waiting for a referral to a Neurologist.

I’m thinking of acupuncture.

I’ve suffered from insomnia for months and totally exhausted. Every physician wants to prescribe more meds.

Any advice would be most appreciated.

vipscl profile image
vipscl

Hi I posted this to a whole new thread called “Tramadol and Restless Anything (Abdomen, Legs, All Over, etc)” but I wanted to post to this as well, since there are so many posts here already. In case you want to reply to my post, that would be cool as well.

Here is my post link: healthunlocked.com/rlsuk/po...

Thank God others have found the drug, Tramadol to be helpful. I have had restless abdomen since I was 17 years of age and it had really caused me to go nuts sometimes to the point where I want to “jump out of my own skin.” I am 40 now and this is just getting ridiculous. Throughout the time I have had this, my family asks me what it feels like and all I can say is that it feels like an “empty” feeling or “fluttering” or “butterfly” feeling. I cannot fully describe it. I have gone to a cheif gastroenterologist at one of the best medical centers and he wanted to put me on Prozac. What?! I’m not depressed or crazy. Then they said that this is anxiety, but does anxiety wake you up in the middle of the night multiple times per week? I have visited 4 different gastroenterologists and all of then say that this is in my head. “No, it is not. I assure you that it is not in my head.” I have put Vick’s Vaporub, Biofreeze, and Ben-gay on my abdomen to see if I can trick the symptoms to be concentrated elsewhere, but it didn’t work. I have tried a sublingual spray that is supposed to cause nerves in the abdomen to slow down but that didn’t work either. So far, Tramadol or any sort of narcotic seems to work the best, but who wants to be on those drugs for too long? I tried Kratom and it stopped all of the symptoms for 3 days straight! Not sure how or why, but it worked. But the taste is so terrible, so I didn’t stick with it. Anyway, do any of you get that type of restless feeling when you are bored or in a situation where you feel uncomfortable or where you want to just leave a conversation? That happens to me. Also, when I drink beer or have champagne my symptoms go wild and my abdomen bloats to the size of a pregnant woman. I have not had beer in 10 years. I’ve switched to hard cider and that doesn’t cause any symptoms. I can drink hard liquor without any symptoms. I keep hearing that pramipixole is helpful. I might try it, but I am afraid of the side effects. I hope some help will be found soon. Thanks for listening to me on this matter.

Eilidh-May profile image
Eilidh-May

Oh how I sympathise. I too have all-over RLS, (but mine is linked to MS and neck cancer radiotherapy.) Opoids such as codeine and diazepam relieve temporarilly but the withdrawal from those is..RLS. ...so not a lot of. help! But even temporary relief is something. Hope you find solution. Most people have no idea what RLS is. They think it is just 'restlessness' and can't understand the involuntary aspect or think it is all in the mind.' All th very best Eilidh-May

Violet-muse profile image
Violet-muse

For me it’s pretty much just my spine and it’s discomfort that definitely gets worse when I’m feeling anxious. The discomfort I experience is what I can only describe as that feeling you get when you really need to just stretch it all out. Shivers in a manner of speaking I guess. But all the time. It’s so tiring. I’ve had it all my life.

Alliemmcc123 profile image
Alliemmcc123

I have all of those symptoms as well. I suspect hydration has something to do with worsening it because whenever I am dehydrated or drink alcohol at night it’s worse. It also gets worse from meds that help relax. Such as ambien and muscle relaxers. So far the best help is melatonin and trazadone and sleeping on my stomach when I wake up and it doesn’t go away. Good luck.

I have had RLS symptoms since my early 30's, I am now 86. I do have it in my arms at times. However I also have diabetes and because of that there is nephropathy. The nephropathy irritates the RLS, and I wonder if you do not have something else going on, that has not as yet been diagnosed. brunthrush.

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