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Your experiences
We are looking for Ekbom Support Group members who are willing to tell their experiences of Restless Legs Syndrome. How it started. What remedies you have tried. How you cope. What medical support (if any) you have had. Ideally visitors to our site should see case histories which illustrate the various ramifications of the syndrome and perhaps allow them to relate their experiences to ours.
Your contribution could be anonymous or named perhaps even appearing with a photograph. Let us know if you are willing to help.
Don't feel up to the necessary authorship? We will knock it into shape if you wish.
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
You tell us what Restless Legs Syndrome (RLS) is like for you:
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different) Judith Tim Bettina Archives of Your Experiences
Dear Beverley
I have been a member of the Ekbom Support Group for about 8 years and have suffered from "The
Twitches" as my mother used to call it for at least 40 years - I am now in my 70's. My grandmother
also suffered from it and my sister does as well. I have tried countless "remedies" as suggested in
the very helpful newsletters, but with very little relief. Finally, when ropinerol
(Requip) was announced as available in the newsletter and before it was fully licenced for use for Restless Legs, I was
able to persuade my GP that I might try it. What a difference! I started initially on the lowest
dose and gradually increased it to 3 mg a day, one at tea-time (approx 4.00pm) one at about 8.30pm and
another on going to bed and have been on this dose for a couple of years. I also take Magnesium
and I now take two paracetamol at 6.00-7.00pm and two co-codamol effervescent when I go to bed.
I do know that Co-Codamol contains Paracetamol, but I only take them a minimum of four hours apart - not at the same time, so hopefully that makes it OK!
(Webmaster's note - please be very careful that you check the constituents of any medication and read and obey the instructions carefully - paracetamol is a particularly well know medication that is very near its dangerous dose in normal use.
Toxicity
further information here and here)
This regime seems to work very well in my case, though I will alter the times if I am going out to a
concert or theatre (which I was very reluctant to do for some years) or going on a long car journey. I
am now usually able to get to sleep quite quickly and am not often woken up with my twitchy feet.
Sally
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different) Judith Tim Bettina Archives of Your Experiences
Hi,
(writes Margaret)
I used to receive your newsletter, but haven't done so recently. I found it very informative.
(web
master note: they are produced twice a year-here
they are-and here is how to make sure you get
them).
I developed RLS 10 or more years ago (I'm 70 now) and it gradually got worse until I was pacing the
floor most nights, sometimes several times. I could usually get to sleep, but would invariably wake
up later with restless symptoms. Travelling any longish distance in a car was usually a painful
experience and I just about gave up going to concerts and the cinema. Life was becoming pretty
miserable. Then I went into hospital to have a hip replacement, and the pain of suffering RLS when
confined to bed was far worse than the pain of the hip operation. I can assure you that
co-codamol had absolutely no curative effect whatsoever!
I tried all the over the counter remedies such as folic acid, calcium, vitamins. I also avoided
caffeine. None of them were any help. In the end, I persuaded my GP to send me to see a
neurological consultant. He was a very understanding man and when I showed him a graph of the
frequency of the occurrence of my RLS he said that it was very typical of the syndrome. He
checked my ferritin levels, but they were normal, so he prescribed me a gradually increasing dose of
cabergoline, starting with ½ mg daily. When I had increased this to 2mg over a period of several
months, my symptoms virtually disappeared. I continued on this regime for a year or more.
Then I read somewhere that magnesium had been found to help in cases of RLS, so decided to give
it a try. I ordered it on line where it was also suggested it be used in conjunction with Butchers
Broom, so I thought that I might as well try that as well. I gradually reduced my dose of cabergoline
after I started taking the magnesium until I came off it altogether. Much to my
delight, I found that
the Restless Leg did not recur. It is not completely absent, I still get tingling
toes some evenings and, very occasionally, cannot get to sleep at night. However, it is tolerable and preferable to the potent prescription drug. I hope this
information may be of help to other readers - only sufferers of RLS can know just how
annoying this disease can be!
Sincerely,
Margaret
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi everyone,
Let me introduce myself: I'm Sue, 47yrs old, married, two grown kids (23yrs and 20yrs) and
totally frustrated! He he, no not with my hubby or my kids – well read on and you will perhaps
understand why!
I have only just been diagnosed with RLS; however I suspect I have had it for many years, but, due
to having serious spinal damage which causes chronic pain 24/7 and having taken Solpadol
Effervescent (codeine and Paracetamol 30/500mg 8 per day) for over ten years to try and cope with the pain, I suspect the medication has masked my RLS.
I have always had back problems stemming right back to when I was 12yrs old and diagnosed with
Scoliosis (curvature of the spine). That was corrected in 1973 and I had 20yrs of pain free, got
married, had kids and all things we humans do. Unfortunately in 1995 the rod that had been
inserted into my spine to correct the curvature 'pinged' out and I finally found
a Consultant who 'believed' me and he removed the rod. Once again I was pain free
and got back on with my life. Two years later I had a car crash – not my fault – honest – which permanently
damaged all my lumbar discs which in turn caused chronic pain not only in my lower back but referred pain in my
legs with chronic nerve pain 24/7. I was prescribed Solpadol Effervescent (30/500mg) and started taking
them, 8 per day. Then, and you ain't gonna believe this but yes, I had another
crash; honest I am a good driver and it was not my fault – this was a huge
Land Rover Discovery going into the back of me, which caused severe whiplash, narrowing of the spinal canal and disc damage, again resulting in
chronic nerve pain in the neck, severely restricted movement and referred pain into my shoulders
and arms/hands. I was already taking the maximum dose of Solpadol so basically I was told to go
away and get on with my life.
Thankfully, through my own determination to find some relief instead of 'putting up with and having
no life', in 2006 I found a Consultant specialising in Pain Management and he told me of a procedure that he was confident would hopefully either completely remove my nerve
pain in my neck, lumbar and referred nerve pain associated with it, or it would at least lessen it. I
had 4 diagnostic procedures done in 2007 and I decided I would come off Solpadol. Well it was a
living hell coming off codeine I can tell you. It took me 3 months with dreadful withdrawal
symptoms, including sweating profusely, shakes. cravings; it was awful but I managed it. However,
and finally, (sorry for the long windup to the RLS relevance), I noticed my legs, and in particular my
right leg started jumping. Then I noticed it was mainly when I was tired or trying to go to sleep. At first, I thought it was just another withdrawal symptom and hoped it would settle down once the
codeine was completely out of my system.
This did not happen of course. The two diagnostic procedures were a complete success and so I
am now in the process of having denervation procedures (burning the nerve roots that are causing
the pain) done - two on my neck and two on my lumbar spine. Hopefully these will be as successful
as the diagnostic procedures and finally I will be more or less pain free. Mind, now I am left with
RLS!
I just can not believe it! The more I think about my jumping legs I vaguely remember experiencing it
in my thirties. Interestingly and I don't know if it is something others have experienced, but I have
never had ticklish feet - much to my husband's annoyance! he he, but since the RLS has flared up
my feet cannot bear to be touched?
Anyway I went to my Doctor and thankfully she is understanding and actually suffers herself so did
not tell me I was being silly. She did tell me to go away and research RLS myself; saying she find
relief by sitting on the edge of her bath and running the cold shower over her legs - oh and cut out
the alcohol and caffeine! boohoo
So, here I am doing my research, coming across you and hoping I can get some advice from you
all. A lot of people on here recommend taking Magnesium, Bachs Flower Rescue Remedy and
Sleep Remedy, and other things. So approx 2 weeks ago I started taking Magnesium -250mg once
per day, and Bach Sleep Remedy at night (each time I wake up 3 or 4 times per night). I don't know
how long I have to take the Magnesium for before I see any improvement. I have found, by accident
as I do have to take Tramadol still for the nerve pain, that if I take one Tramadol 50mg an hour
before I go to bed, it helps and the legs stop jumping completely. But I do not want to take
Tramadol for ever and risk getting addicted to it.
The other major problem I have and again I don't know if it is associated with RLS, but I find I can
usually get to sleep but then 2 hours later I suddenly find myself awake; not by RLS but my brain is
going over lots of subjects either that I have done during that day, or in the past days, weeks and even further back. I am not stressed or anxious (other than finding help for RLS of course). I find it very difficult to get back to sleep. The Sleep Remedy works
sometimes but other times I have two hours sleep and then spend the rest of the night reading or
watching TV!
Of course the next day I am exhausted which of course flares the RLS. The other thing I have found
that helps the legs, but doesn't stop it altogether is Deep Freeze Gel. I massage it into my thigh
muscles in the morning and again at bedtime. It's like Deep Heat only freezing cold!
Sorry, I know this is very long, but I am desperate for help and advice/support! If anyone can shed
some light onto this condition and what they have found helpful please let me know. I know I am
very lucky to only just be experiencing RLS, but, having just found something that is giving me my life back after years of Chronic Pain, I don't want
something else - RLS to take over my life.
On a separate note, looking at the message board I notice not many people post anything and it is
usually ages before anyone sends anything on there. I know I am new to the group and I apologise
if I am stepping on anyone's toes but I know I would love to hear from other sufferers and get instant
feedback or have somewhere to vent off frustrations. I do know with my back conditions and chronic
pain, I have felt very lonely and isolated, and I suspect a lot of RLS sufferers probably feel the same
at times and it would be nice to help each other and sort of 'chat'.
Anyway like I said, I hope I haven't overstepped the mark.
Thanks for listening and hope to hear from someone sometime.
Kind regards Sue.
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi
Bev,
I came across your web site and thought I'd share with you (which you may wish to pass on to your
readers).
I suffered really badly with RLS, couldn't sleep some nights. A few months back
I changed my diet to a low GI ( glycemic index) diet, not for the legs, just for a better diet.
A few weeks into the diet and I noticed that I no longer suffered from RLS.
I have been on this diet for a few months now and whereas normally this time of year my legs are in quite severe pain,
I am not suffering.
So my prescription is a low GI diet.
I wanted to share this because when I first started suffering (a few years back) my doctor had no
solutions for me and I suffered in silence. Hopefully others may follow me and may benefit the
same.
Kind regards
Richard
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Sandra Writes
I have today read the article in the YOU magazine. I am 55 and have been a sufferer for more years than I can remember, but it has progressively got worse over the past five, I am now at the stage where I get very little sleep. I was interested to read about the new drug which is not yet under licence.
My GP here didn't seem particularly interested in my predicament when I mentioned it to her, but I am going to show this article to her, as it now
is beginning to affect my every day life, I am sure I don't need to tell you how it feels after weeks of hardly any sleep.
When we lived in Cornwall my GP there was more sympathetic and gave me an anti depressant but after one dose I was walking the floor all night it
made it worse. I am sure I am not anaemic as I had regular blood tests there as
I take bendrofluazide for blood pressure.
My mother was a terrible sufferer but she always got them during the day and if she went on a journey anywhere, she suffered from her 40's and died
last year aged 82.
I can't sit in a cinema or theatre, but travel isn't too bad, sleeping is my main problem.
I hope you can use this info on your web site.
Yours sincerely
Sandra
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Midge writes in response to Sandra's letter:
I've been reading other people's experiences, but there were no dates so I didn't know if the e-mails were recent until I read Sandra's e-mail. Someone at work gave me the article from You magazine (7th November 2004) because she knows that I suffer badly from RLS. I'm 58 years old and have had this condition since my teens. One GP said "Oh yes, my wife suffers too" and that was that!
Sandra says that iron tablets have not helped her and that she has had blood tests that show no iron deficiency; however, I was a blood donor for a few years and was assured I was not then anaemic, but I still found iron tablets (and they must be the ferrous sulphate, not the mild ones at the herbal counter) a great help. (Webmaster's notes:1) It is quite possible to suffer toxic effects of too much iron - follow this link. 2) Ferritin levels in the blood are usually regarded as a possible restless legs indicator - follow this link and this one). I have not been taking the iron tablets for awhile and I got so tired with lack of sleep lately that I could not think straight, so did not go back on the tablets. I was seeing my GP about something else and he knew about my RLS. He told me a few months ago to see him about now as there were developments in the treatment of RLS. He has put me on 1mg Cabaser (cabergoline tablets used in the treatment of Parkinson's Disease) to be taken at bedtime. The discomfort of RLS disappeared but I am suffering so much from periodic limb movements at night that I am exhausted during the day. I am going to stop the Cabaser as I feel so bad with exhaustion and difficulty trying to concentrate on my work. I will go back to my GP and ask for the tests as in Chris' letter to see if it will work for me. I know that last year I was so tired with lack of sleep due to RLS that I seriously thought about giving up my job, but remembered the iron tablets and they made a difference in that the symptoms lessened to an extent that I could bear them.
Incidentally I found it does not help getting up and walking about because it just
prolongs the agony. Apart from other remedies one that helps is to get up, get a cup of
tea and slice of bread and butter and take them back to bed to have whilst I read a
Snoopy book!! Needless to say I also move out of our double bed and go to the spare
bedroom to finish the night.
Midge
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi Eileen,
I am male and thirty years old. I first noticed that there was a problem about 2-3
years ago, usually after a night, where I had drunk alcohol and I awoke early with a
restless sensation in my legs. I just put this down to the drink and as it was only on
rare occasions it didn’t seem to bother me.
Over the past 12 months though I was getting this strange feeling more often, sometimes up to 3-4 nights a week. It would always be in both legs and it would be
either in my calf muscles or my ankles. I just had to move my legs to get rid of the
feeling. I went to my doctor who was most unsympathetic with me and the matter was
left. He said that people my age don’t get restless legs.
Since then the problem has got much worse with it affecting me virtually every night.
Normally around about 4 or 5am I would wake with this feeling and not be able to sleep
again.
At around April of this year I started to develop twitches, mainly in my legs but also
rarely in my arms. This would be 24 hours a day and occur around every 10 minutes or
so. It would only happen if I was still (lying in bed or at the office desk). I decided to
see a private neurologist after a recommendation from a friend’s uncle who was a
doctor. I was prescribed Clonazepam and referred for an EEG and MRI scan. The
clonazepam initially started to help me sleep but didn’t stop me waking up most nights
with restless legs. The tests came back showing there was nothing abnormal in them.
I am now seeing a specialist on the NHS and she has given me clonazepam and Mirapexin
(pramipexole). The twitches have reduced in number but are still there most days at some stage when I am relaxing. The restless legs are no better and seem to be
even worse. I am starting to suffer quite badly from not being able to sleep and am tired
most days.
I have another appointment soon and am thinking of asking for Requip as a lot of people
on this site seem to recommend it.
I did have problems as a child in my legs at night that I was told was growing pains. (bones growing faster than my muscles). I
can't remember if this was the same feeling to what I’m getting now. I also don’t know if the twitches I get today are connected to the
restless legs. I have tried various remedies like hot baths, tensing muscles etc but none
of them seem to work.
Kind regards
Andrew
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi Eileen,
I'm 51and I don't know exactly how long I've been suffering with restless legs, it
has come on gradually over the last five years. My sister suffers and so does my mother, so I presume it's hereditary.
It has become far more severe over the last year.
As I was doing a lot of physical work I put it down to that but now after a few months rest it is still as bad as the work. My arms ache a lot now too, my joints generally are the worst, when I do sleep my husband says I'm always moving and kicking out.
I do seem to have good and bad patches though. I wonder if this is hormonal? I have not seen a doctor, they have not been able to help my sister and she has tried
everything. I try to get on with life as normal but like many of your members there are
times when I feel very tired, this leads to a general feeling of being run down.
I try to stick to a good diet, plenty of fish, nuts, vegetables and fruit, not too much caffeine or salt. I also drink my own sage tea [just pour boiling water on to the sage leaves]. I find this helps as does lavender mixed with it, maybe that's because I drink it instead of coffee, who knows?
I think, for me, the main problem is the lack of knowledge and there being no magic cure. I feel
it is something in the brain, like too much energy [or such like], probably that is why
some drugs work because they suppress this.
It was good to find your website. I hope for everyone's sake a reason is found, if not a
cure.
I wish the very best to all fellow sufferers.
kindest regards
Nikki
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi
Eileen, (emails Ralph)
I have partly enjoyed the empathy and partly despaired for the future while reading
some of the experiences of other RLS sufferers. I looked at your website this morning
to see if anyone had any experience of:" Restless legs Cured …..Drug free solution” from
http://www.restlesslegscure.com
as it seems rather too good to be true. (Webmaster's
note: As others have mentioned this "cure" to us it is worth
mentioning that it almost certainly is too good to be true. I am only
going on memory and impressions but I followed the discussion of another
group about this ebook a good while back. From what I remember some
rather scathing remarks were made about the whole enterprise and there was a
hint that the cure involved not taking salt). ( Further note added
14/11/04. If you follow this
link there is a recent message which tells a lot about this miracle. If
you are not a member of Yahoo groups you might need to sign up to
Yahoo Groups to see this information).
I’m 47, male and living in North Kent. I’ve had RLS in my legs and sometimes my
shoulders to varying degrees since I was a teenager although I didn’t know what it
was called, I thought that I was unique and I didn’t ask for help because it didn’t
disturb my sleep. It was only a problem if seated, especially in a small uncomfortable seat like in
the back of a car or a cinema.
About seven years ago while taking a small cocktail of prescribed medication for panic
attacks following a nasty car crash, I hadn’t noticed that the RLS had abated. I
eventually reduced and finally stopped that medication, and the RLS returned with a vengeance. It
was my psychiatrist who identified the condition but said that none of the drugs I had
taken would have helped the RLS, which we proved by me taking them again without
success. I have since discovered that mental activity really helps my RLS and I now think
that the abatement of the RLS symptoms at that time were probably because my mind
was at a heightened alertness with the panic attacks.
Once I knew what it was called I researched RLS and found an American website (which
no longer exists) that listed many RLS medications. I tried Sinemet, which I thought was
miraculous for a short time, but I had to keep increasing the dose until I couldn’t
increase it any more. I had read about Requip which was very new but had scored some
good results with RLS so I persuaded my GP (who knew nothing of RLS) to prescribe it.
At the change over from Sinemet to Requip I felt like I was being electrocuted for a
couple of days but the Requip settled it down and until a month ago I was taking .5mg
every 2.5 hours during the day and 2mg before bed and the RLS was completely controlled.
Last month the RLS became dramatically worse, all day long, and is not controlled by
taking 6mg Requip daily, at which level I sometimes feel a bit drowsy. Simultaneously I
have developed Carpal Tunnel Syndrome in both hands, and numbness and pain in my
lower back and legs. The former is definitely caused by a constriction of the nerves, and
the latter could be. I suspect a swelling of the nerves, possibly due to an infection
picked up when I severed a nerve in my leg in an accident in June 2004. My GP is not
very interested though, and was visibly relieved when I suggested consulting a neurologist, for which I have an appointment in December. I’m not sleeping much at the
moment so I’m a bit of a zombie and RLS is so bad that I am not sure that I will be safe
to drive a car if it gets any worse!
Generally, (until last month) I have found that tiredness is the main antagonist of RLS. If
I can get enough sleep I am OK (with the Requip). Which presents a bit of a chicken and
egg problem. I am now caffeine free without any improvement. Alcohol is not a problem, I
tried abstaining with no noticeable improvement. However if I have had a lot to drink
at a party say, I sleep but my legs leap about (I’m told when I discover my wife asleep on
the sofa) and I am very tired the next day, consequently the RLS is worse then.
I was interested to learn that some other sufferers had gained relief from tensing their
legs until the muscles cramped. I remember doing that many years ago and it worked
well, I’ll try it again.
Best wishes to you and your website
Ralph
Judith lives in the SE of England and writes:
Dear Eileen,
I became a member of your support group about March or April 2002 after experiencing
restless legs syndrome quite badly following the onset of work related stress. My RLS was
exacerbated by the anti-depressants I had been prescribed and through your support
group my prescription was adjusted. My RLS took over 6 months to reduce in impact and
I still had the restless legs at night including the on going twitching by the time I was fit
enough to return to work. As my stress levels improved my twitching in, not only both
my legs, but both my arms, lessened to some degree but did not go away.
Quite by chance, a few months ago, a leaflet from Magnopulse came with my Sunday newspapers, which advertised a natural way to relieve a variety of ailments including restless legs. I must admit I was sceptical at the time, but my husband encouraged me to purchase the LegCare wraps at £29 each (special offer). As he said, what had I got to lose. So I bought two!
Inside the leg wraps are magnets and from the first night I wore them my
restless legs including the twitching subsided, I feel like I have won the lottery! I had also
noticed on your website that another sufferer has also recommended the same product.
I am more than happy for you to edit and include my comments on your web site.
If it can work for me, it just may help other sufferers. You only need to buy the product once,
there are no side affects and, as my husband said, what have you got to lose. I would be interested to know how many other sufferers have reported that this product
has helped their RLS.
Thank you for the excellent work you and your colleagues have been undertaking on our
behalf.
Judith
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Ronnie makes the following contribution:
Hi Eileen,
I was attending an appointment at my doctors recently and saw a notice asking for volunteers to help with research into restless leg syndrome. I must admit the first thing I did was have a little chuckle to myself at the idea of this being a health condition, it came as a great surprise thought that I was not the only one! I have been almost driven crazy at times by this 'curse' and I have never spoken to the doctors because I thought they might not understand. So although I would not wish RLS on anyone, I am glad that it is a recognised illness.
We bought a sofa with recliners at either end, I have found raising my legs does help a bit, but at 47 years and 15 stone I must look a real
sight because of some of the shapes I take up when trying to get some comfort. Also the discomfort makes me agitated and I talk too much, becoming a
nuisance to the rest of my family. The same thing happens when I am in bed.
As I have had this condition for as long as I can remember, I have become used to getting up very early in the mornings and have regular walks during the night.
If I can I will relate as much as I can to you in regard to what happens and when. Three years ago I had a bit of a breakdown because of stress, the
counsellor who I visited was a genius, after a few sessions on how I felt he began to teach me how to
relax. This in all honesty, is the key to everything, very few people know what 'true'
relaxation is! Therefore my best advice to anyone suffering from RLS is to seek relaxation counselling and most importantly to deal with the frustration of slow progress while they learn how to become good at doing absolutely nothing for a short time each and every day. My 15 minutes is spent with God and is working very well.
What happens when my legs become restless? I feel like the blood is boiling. I often get pins and needles. They itch. They can become uncontrollable.
When do my legs become restless? Evenings when I sit down to rest. Night time when I go to bed. If I have to sit for a period of time, as a passenger in the car, train, bus etc (not generally while driving).
Conditions when my legs become restless! Too much heat in room. When my joints are in some pain (I get pains in my hands and fingers). Over tired. Mind still too active/ not really relaxing. Long period of inactivity.
My
ideas on possible causes. I believe RLS may have a lot to do with the activities of ones' brain, particularly relating to the generation of electricity created by the
impulses from our brain to the nerve ends, it may be possible that if our brain is still too
active when we think we are relaxing, it is still generating to much electrical signalling to the nerves, which has to
escape to ground and may use the legs to do this? Sufferers of RLS may also be aware that they generate what seems to be rather high levels of static electricity?
Things that relieve some of the condition for me. Most importantly, the practice of relaxation. No nylon clothing. Cooler temperatures when relaxing, but not cold (Room temp 20-25
degrees). Lightweight bedclothes/ no nylon types. Wearing nice comfy socks, only on the nights RLS is bad, this reduces the very annoying rubbing of my feet together. A little set of head phones and some music if I cannot get to sleep.
Reduced salt intake. Cod liver oil. Any arthritis relief methods. Working hard at not letting this frustrating condition win.
If anyone would like to hear some of my relaxation methods, I would be
happy to have my email address shared with them.
God bless
Ronnie, Bangor North Wales
Karen writes from New Jersey but was in Northamptonshire in March 2004.
About 7 years ago I saw a
pamphlet in the Workman's' Health office that was entitled Restless Legs Syndrome. It seemed as if I had been reborn just then. I
finally knew what was keeping me awake all night.
You ladies might understand the sensation of wearing stockings when you haven't had a chance to shave your legs for quite a while. Well that is how mine had started when I was in my late 20s. Now at age 42, I have Ekbom's in both legs, both arms, and now maybe my neck? The symptoms are very severe and involve the demand that I move my ankles, toes, and upper legs constantly. If I try to resist, it's like holding my breath. Eventually, it just explodes and moves against my will. I get these during long period of sitting or at bedtime.
The only way for me to fall asleep at night is to take ambien, it's pleasant, but it knocks
me out for a solid 8 hours. I don't even hear the baby cry or phone ring I am sleeping so
deeply. I have no problem falling asleep in the daytime so far for an hour or two nap, but that's
not practical with a 15 month old.
Testing for
anaemia and other dietary deficiencies has born nothing out. I think I have the inherited
form of the disease. I remember my mom staying up all night watching TV or she'd go out late and do her shopping. My Grandma took a sleeping
aide all her life from 20 years old on to the day she died. My Mom and Grandma never
talked about why they didn't sleep. They just considered themselves night
owls.
I now have a 22 year old son and a 15 month old daughter. My son has trouble with night times now. I hope by the time Maggie is ready for hers that there will be a cure. If Ekbom's intensifies with each generation, it hurts my heart to think that she will live like a vampire. Half dead during the day from lack of sleep and wandering the earth looking for odd remedies by night.
Karen in New Jersey, USA but in Corby, Northants in March!
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
David contacted Eileen Gill
with a request for help:
Hi, my name is David and I suffer with restless leg syndrome. Well I'm 99% sure its that.
Suffer really is the operative word, for 5 or 6 years now or maybe longer. In that time
I've seen my doctor 3 or 4 times with it but he's clueless. just says that there
is nothing he can prescribe. He gave me quinine tablets once but no joy.
I've bought books and tried the things suggested from that to no avail. I
don't get it every night. I can go weeks without any bother but when it gets on a roll it is really bad.
I get out of bed after 15 minutes or so, when I'm sure it won't subside.
I get up for work at 5.15am for work every morning . It is now 2.30am so you can
imagine I'm in a bit of a state. It is so frustrating I'm getting palpitations, sometimes
I even feel like thumping my leg or legs.
Any suggestions to help would be greatly appreciated. Are there any specialists of RLS out there that I could contact? Looking forward to your reply.
David.
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi Eileen,
I have been suffering from RLS since I was a small boy. I am now 45. I first
remember the symptoms whilst sitting at a sight and sound concert at Hampton Court.
I just couldn’t settle my legs and fidgeted throughout the evening, much to my parent’s
annoyance. It has been a constant companion since then! I only realised a few years
ago that others suffered. I envy those who can travel long distances by plane, train or
car and sleep through the journey. If I try to sleep, I probably manage half an hour of
dozing before the symptoms kick in and then that’s it, nightmare journey. I flew to
Hong Kong once and spent most of the journey standing at the back of the plane outside the toilets!
The worst possible time seems to be when I am tired and I feel sure that alcohol doesn’t
help. Sleeping throughout the night is a rarity. It doesn’t hurt and I don’t particularly
have any describable feelings, I just have this irresistible urge to stand up and move my
legs. I don’t suffer anywhere else on my body. Recently I went to see an osteopath
for back pain and I mentioned it to him. He seemed to remember reading an article
where a sufferer had turned to a gluten free diet, which had solved the problem or at
least helped to reduce the restlessness.
Recently, I have felt that the restlessness is becoming more frequent, but I have never
kept a diary of times and dates, so can’t confirm this. Andrew
Jim wrote to the Ekbom Support group:
As a 75 year young sufferer of restless legs for several years my GP put me onto your organisation. I have read all I can find with considerable interest. I take 2Omg Seroxtat and l5OOmg Glucosamine daily. (Webmaster note: Click here for GlaxoSmithKline corporate web site - search for "Seroxtat")
I am a retired forester and still love walking. I have suffered, and I am convinced as a quite separate issue to RLS, from muscular 'jumps' every 11 - 15 seconds under the left surface of my left leg when I lie down in bed. This is after doing something during the day that has aggravated a 45 year old injury to my lumber spine resulting in a 'slipped disk'. Lifting, carrying or most often sitting in a poorly supportive chair/car seat is a guarantee to trigger this off. It lasts for about 5 hours after which I can get some sleep. A blow up camping pillow is my constant companion wherever I go (in pub, church or chapel as they say) and mildly inflated according to what I need to sit on. I could not sit on a bench without a back rest for more than a few seconds without triggering the spasms later in the day/night, or risk travelling in a 'strange' car without my personal and variable support. Expensive medically recommended supports are of little use to me. I am in a 'live with it' situation and have been for 40 odd years and I cope very well.
I am fortunate that I can still lead an active life although I now have to restrict my walking to the contour paths. I have always been aware that my calf muscles when relaxed appear to 'bubble' with no apparent feeling at all. I have put this down simply to too much playing football in earlier days and relaxing muscles. I take little notice beyond a curiosity.
However, in recent years, and I am convinced as a quite separate symptom from either of the above, I have experienced dual involuntary movement in both legs soon after going to bed. This is persistent and sufficient enough to prevent sleep. Occasionally both legs would jump alarmingly in unison from the hips down.
Hitherto the only remedy I could find was to get up, sit in my very comfortable and supportive chair (see above), with a hot water bottle under my calves, with my legs outstretched and turn on the television to try to occupy the mind. Reading was an insufficient distraction from wafting and or counting the seconds for the next jump. The jumpy legs would occur simultaneously but at irregular intervals (about 5 - 20 seconds). Usually the leg movement would fade after about a couple of hours or so but would return if I tried to go back to bed too soon. On bad occasions lying in a hot bath would be helpful and usually relieved the discomfort and disturbance to sleep.
Rather than take to herbal or GP advised medication (I am trying hard without much success to get off the Seroxtat) I have kept a mental diary for over a month now of what I had eaten or drunk during the day's) before a disturbed night. By then RLS was becoming too frequent to discount. My unprofessional thinking is that in my case the problem relates to blood circulation itself disturbed by digestion.
I have always suffered from cold feet. So I re-read your Ekbom literature.
I have been a non smoker for 50 years and only an occasional drinker. I have always avoided strong coffee after 6 o'clock in the evening (guaranteed to keep me awake with or without 'jumpy legs') Just over a month ago my wife and I switched to mild decaffeinated tea and coffee. Chocolate drinks are out. We have also both tried to reduce sugar intake, my wife being advised she may be a borderline case of diabetes and both conscious about weight and our knee joints in the future.
The main finding relates to alcohol. Hitherto I could always enjoy a pint (seldom more) of a local brew when out walking or travelling and an occasional 'can' at home. I seldom went to a pub just for a drink and seldom drank spirits. I reluctantly put aside my favourite Pastis in the occasional evening. I could also enjoy usually a red wine with a meal. (I had noticed many years ago that a very cheap red wine would cause red blotches to my behind the day after!. I was not alarmed!) So very reluctantly (especially over Christmas) I have abstained for just over a month now.
Guess what? I have not had a reoccurrence of RLS since commencing what I call 'avoidance action'. Rather than taking any form of medication which I feel can only act on the symptoms, have I discovered a very 'personal' remedy to what I acknowledge is a relatively mild form of RLS? If so whoopee!
I shall continue with my remedy for a couple of months more then I shall have a Pastis and a glass (or two) of red wine and see what happens!
Should any of this be of interest to the Ekbom Group please feel free to use it. If not try the waste paper bin!
Best Wishes
Jim
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Hi Eileen
My name, as you can probably tell from the email address, is Gary.
I've been a sufferer of Restless legs for some 12 years now. I started at a young age, for the condition,
27 I'm now 39.
At first I didn't have a clue what it was and regarded it as somewhat of an annoyance. But
after about 5 years I went to a doctor about it, the local GP. He referred me to
the
local hospital in Plymouth where I was living at the time. I saw the neurosurgeon and he
didn't really have a clue what it was either. He thought it was mild epilepsy, and had
me on a variety of drugs. All of which cured the restless legs, but made me a complete
zombie for the following day's). Therefore I decided the cure was worse than the
illness and stopped the drugs. Until fairly recently I had no idea what it was.
About 4 years ago, when the symptoms were really bad, (I get it in both legs, both arms and
occasionally in my torso - it can start in either leg then, if I don't get up, it will go
up into my arm and then I have to get up, otherwise it goes to my torso and that's really
not nice.) I went to my local GP again, and again I was referred to the local hospital, I've now
moved to Romford. After running a number of tests, it wasn't epilepsy at all but the
consultant still couldn't give it a name. Until a young consultant saw me and he said it
was Restless Legs, but there was not really a lot he could do for me. Therefore I've come
up with some strategies to cope with it :-
1. Take off shoes around the house (sounds obvious I know), walk on cold tiles even go outside. In other words cool your feet down. This helps at least delay the start of the itching inside your leg.
2. Walk around, at least put all your weight on leg while sitting or standing (again
obvious).
3. Avoid fizzy drinks (Coke/Fanta etc.) at anytime. These are the ones you won't like and are not recommended.
4. Symptoms do get a lot worse with alcohol, so if you do have a drink, drink a lot or don't
drink at all.
5. I gave up smoking. This made my legs worse. I started smoking again (not for restless legs)
when I was offered a cigar in the pub. Therefore I'm still at the cigar smoking phase.
And guess what? It works. It relieves the legs and even the hot feet for about
an hour, therefore if I have a cigar just before I go to bed I get a good 6-7 hours. Which makes a pleasant
change from the usual 3-4 hours.
I also find it extremely difficult to wake up in the mornings and I am always tired in the
afternoons.
Hope you find this anyway useful
Best Regards
Gary
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Good Morning...
My name is
Rikki Montoro and I live in Pennsylvania, U.S. of America. I am 38 years old
and I have suffered from Restless Leg Syndrome since I was a small child - I don't ever
remember not having it. Car trips, plane trips, watching television, sleeping at night,
anything that required sitting for more than 20 minutes at a time was agony for me. Until
two years ago I never realized there was even a name for what I was suffering. I fully
believed it was all in my head and that if I just ignored it, it would go away. My mother
was the first person to become aware, when I was a small child, that something was
actually "wrong" and that I wasn't just an extremely fidgety child. But seeking medical
help never occurred to her. Just as it never occurred to me to seek it as I got older. I
tried all the basic remedies...stretching, walking, diet changes...and drastic temporary
remedies...sitting in tubs of ice...and the "old wives tales"...putting a bar of soap under my
mattress. All attempts failed.
Finally, last year, I was at my neurologists' office (I also suffer from a seizure disorder and
so was in for my visit) and he happened to notice that I kept swinging my legs while he
was talking with me. He joked about how I must be anxious for the exam to be over and
I sheepishly confessed to the "in my head" sensation in my legs. He immediately put my
mind at ease that restless legs was indeed real and, in some cases, treatable. He put me
on a very low dose of a drug called Mirapex - the same drug used to help patients with
Parkinson's. The result was instantaneous with my first dose. I took it early evening
(just before the time when my symptoms started getting their worst) and for the first time
in my life I sat down with my family and watched a two-hour film on television and not
once did I have to get up to stretch my legs. I was amazed. But it didn't stop there.
That night was the first night I slept the whole way through and had the first restful nights'
sleep (and hence, so did my poor husband) in all my 37 years of living.
I've been using the drug ever since (it's been about 6 months now) and my life has
changed drastically. I usually take a small dose in the evenings around 7 pm and it lasts
me all through the night. If I find I'm going on a long car trip (over 20 minutes) during
the day, or going to be sitting watching television or sitting for any length of time I will
take a dose in the morning. It's a miracle. No more ice baths, sleepless nights, missing
TV shows. LIFE IS WONDERFUL!!
Rikki
I am 50 years old and have 'officially' suffered from RLS for about 5 years, although for a few years before that the same complaint I suffered from was unnamed by doctors. Historically I have tried doctors who, largely, do not seem to be able to help. I have asked about drugs but my doctor will not prescribe what he classes as 'Parkinson type ' drugs due to the potential side effects (although reading many accounts on this site this seems not to be the case).
I find that I suffer most if I sit for a while, when I relax in front of the telly at night and of course at bedtime and I get symptoms in both legs and arms. It seems to get worse in cycles of about 2 weeks at a time. The biggest problem for me is the lack of sleep although I do find that if I can get to sleep then RLS does not wake me and if I do wake, then I do not suffer the symptoms. Getting to sleep is the problem. So I have tried cooling my legs and arms with cold water before bed and exercising legs and arms till the muscles are exhausted. These work for me as long as I can get to sleep before the cooling or exercise wear off. If not then I have to do it again.
I have tried diazepam and herbal sleep remedies, but these don't help me get to sleep. They probably help me sleep more soundly once asleep but knock me out the day after so are not weekday remedies. I have tried tablets of iron, zinc, magnesium, St Johns Wort, Devils Claw, Chinese medicine, massage, hypnotherapy, all to no avail. I have just had to learn to live with it.
Recently I
have been getting lots of pain in my elbows as well. I had assumed this to be tennis elbow but
it wasn't responding to any treatment for this. Interestingly I have read a few accounts on the site where RLS sufferers also have joint
pain. Then 4 weeks ago I was talking to two different friends who had different problems. One
was having joint problems, one leg problems that sounded very RLS like but he had not
been diagnosed as such. The friend with the joint problem had started taking daily
glucosamine tablets and these had helped him greatly. The friend with the leg 'problem'
had stopped drinking milk and he had found that this helped him greatly too. I started
both straight away. I bought glucosamine tablets (£8 for a year supply from the Internet)
and started taking them. I also stopped drinking milk which is a real blow for me as it is
my favourite drink / food. Four weeks later and my elbows are much better and my RLS
symptoms are greatly reduced to the point where I can usually fall asleep easily now. The
difficulty I have is knowing which 'treatment' has helped. So I continue with both.
Losing milk is a very small price to pay for sleep. I hope this lasts.
Eileen, please feel free to pass this on to fellow sufferers
Please however do not disclose my e-mail address, but I am happy to be contacted through the group addresses.
- Roger
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Dear
(Eileen) Gill
I was ( not sure if I still am!) a member of the support group - I used to
received newsletters from you.
(Webmaster's
note - anyone else wondering if they are still a member can check this out as
follows: When you receive the newsletter it can be regarded as confirming
your membership. It will have your membership number in the top left hand
corner of the envelope and you are requested to send a new envelope for the next
newsletter - details here. If you do
not send an envelope we cannot sent you a newsletter and you stop being a formal
member - but we are delighted if you look at this web site from time to time.
The envelope you send for the next newsletter tells us you want to remain a
member and keeps you in touch. There are no other subscriptions).
Recently, after surgery, the hospital prescribed me with co-codamol tablets for
pain relief. I took two one night, and to my absolute delight, after suffering with
RLS for over 20+ years and getting about 2-3 hrs sleep a night, I had an almost full
nights' sleep.
(Webmaster's note - Co-codamol is a prescription compound analgesic available as 8/500 (8 mg Codeine and 500mg paracetamol and a 30/500 formulation - codeine receives a mention on our page for remedies: detail ))
My doctor has continued to prescribe the co-codamol for my RLS and I can honestly say that, at the present time, it is like a 'miracle', and I am getting not only hours of sleep, but quality sleep as well.
I wrote and told Dr Chaudhuri at Kings College Hospital about this, but have not heard back from him. I am going to write to the consultant I saw at Ashford & St Peters Hospital, and have written to some 'RLS pen pals' but thought you might like to add this information to your website. I am aware that not everyone would benefit, as I have tried many many 'cures' over the years and, apart from Cabergoline, which I had to stop taking when we began trying for a baby, nothing else has helped me.
I really hope that others who suffer with RLS as I do, may find that trying co-codamol will offer them some relief.
Yours sincerely, Sharon
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
BIG HELLO.
I am a gent aged 53 I have RLS. This has caused me to cut short holidays abroad
and even come home after midnight from weekends away with my wife. I have haunted the internet for information on treatment on this
matter.
I found two treatments that help me. One is taking iron tablets and the other is DIHYDROCODEINE this is for the pain. (Webmaster's note - iron supplements (scroll to Toxicity) can be toxic (as well as constipating) so be careful and ask for a doctor's advice - a blood test for ferritin levels would be a useful starting point - the opiates (see 3. Under "Management") have been known as a possible remedy for some time but again great care is needed and constipation can be involved here too). They work well for me and may be of help to someone else.
My doctor gave me your site this afternoon and it was a relief to know that there are other people out there who also have the same problem as me. Now if only we had the cure that helped every one. BIG THANK YOU ALL.
Tony.
P.S. keep up the
good work.
Mr. B. writes:
Thank you for sending me the information regarding RLS and possible causes.
When I read that part where it was suggested that a low blood count could be one possibility, I made an appointment to see the doctor and, following a check-up, my blood count was only "11", which is low enough to be anaemic.
The doctor said we needed to know why I was losing blood, so I was sent for further tests and they found cancer in my bowel and I was weeping blood. Fortunately, it was discovered at an early stage. I was quickly called for an operation to remove the tumour and I am now in a recovery period. You can see how fortunate I was to catch the cancer early.
Although a low blood count does not mean there is cancer of some sort, it certainly does no harm to have it checked out. Please publish this, as it could save a life."
(Eileen Gill comments: Iron deficiency is usually diagnosed by decreased amount of red blood cells, with haemoglobin levels of below 14 for men and 12 for women, measured with a complete blood count. For RLS, there is usually a more sensitive test, the serum ferritin level. For patients with results below 18 , iron therapy is very beneficial for relieving RLS symptoms. Dr. Richard Allen is going to speak on the subject of ' Iron and RLS ', at the RLS October 2005 meeting).
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
I have had restless legs syndrome on and off for 20 yrs. Years ago my dad was prescribed quinine sulphate for Ekbom Syndrome. When I mentioned it to my doctor he didn't know what I was talking about and wouldn't prescribe anything for me. I decided to try a glass of tonic water at bedtime to see if the quinine in it would work for my symptoms, (and it has). Now I don't know if it is all in my mind , but at the moment it has really quelled the jumps. I hope maybe it will help someone else troubled by this uncomfortable condition. Judith
I found your website tonight and I am so glad that I did. For as long as I can remember I have rocked like a baby when trying to go to sleep at night, not because it soothes me, but because I feel I must. Years ago I would get the "I HAVE TO MOVE MY LEGS" twice a month or so.
Then I had a motorbike accident and damaged my back and because of that I was prescribed pain killers CO-CODAMOL 30/500. I have been on these for the last ten years or so and in the last four years heavily taking them and quite often taking more than recommended. About two months ago I found out that they were addictive, well I knew that but no one ever told me so I couldn't be hooked, could I? So now I have stopped taking them almost cold turkey for the last month and my restless legs have come back with a vengeance, However on the two times that I took the painkillers I had no problems sleeping at all. On the nights that I don't take them I have now resorted to the spare bedroom so as not to disturb my wife.
I now know that I am not the only person in the world doing this so maybe there is some relief somewhere. From experience the CO-CODAMOL does work but is not recommended due to side effects and addiction, however maybe a paracetamol at night will help as one of your letters suggests.
As for me I am now going to try the one banana a day and see if I have any joy with that. The weird thing is since I have been on the computer tonight my legs have been playing me up maybe its because I now know that there is a problem. For the record I am 34, a non smoker, average tea drinker with moderate alcohol intake.
I would be willing to try trials if needs be.
I now have to go and make up with my wife because I snapped at her because I felt embarrassed with her reading this email as I was typing it.
TIM, BERKSHIRE, UK
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Bettina
tells us of a natural remedy:
Hello,
I believe that there is a natural cure for the Restless Leg Syndrome and I would like to
let as many people know about it as possible, because it made such a difference in my life.
During my first pregnancy I had it really bad, it took me a long time to figure out what it
was and that it actually had a name. For me it was the arms and it drives you crazy.....
Then when I got pregnant the 2nd time it came right back and I just couldn't imagine to
deal with it again for 9 months, so I tried Bach Rescue Remedy and to my amazement I fell
asleep. The next night there were nothing so I wasn't really sure what to think, then the
3rd night it started again, so I took the Rescue Remedy and the same thing happened. So
if I took Rescue Remedy every 2nd night there would be nothing. But then I decided
to take the Rescue Remedy 4 times a day for 2 weeks, guess what? I went through the
pregnancy without any problems, the RLS was gone.
Around the same time I had got on all newsgroups asking for help, and I got an e-mail from
a gentleman in Singapore telling me that he had found a product that should be helping and
he was expecting it in the mail and he would let me know if it worked. I told him
about the Rescue Remedy and that my RLS was gone, he got very excited and said that he
would try too. After a few weeks I got an e-mail from him telling me that his had gone
away too, he didn't even try the other product.
There is a new product from Bach with the same ingredients as the Rescue Remedy, plus
one more ingredients and here is the web site that has some info on Rescue Sleep:
www.bachrescuesleep.com
Sincerely,
Bettina
Web
master's note: You will find exactly the same story here
in, perhaps, a more commercial context. Bettina's email address is given (here)
should you want to get in touch. Let us know what sucess you have with the
product.
Sally Margaret Sue Richard Sandra Midge Andrew Nikki Ralph Judith Ronnie Karen David Andrew Jim Gary Rikki Roger Sharon Tony Mr. B. (a different)Judith Tim Bettina Archives of Your Experiences
Editors Note:
