People Think That Restless Leg Syndrome Is Something I Created Or Imagine, Just Because It's A Neurological Problem.
Have any of you have had been told by... - Restless Legs Syn...
Have any of you have had been told by friends or family that RLS it's only on your mind?
Written by
Rage85
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42 Replies
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We all get either a little of that or a whole lot of it...My family has accepted that
I have RLS but they can't understand why working the legs out or why a hot shower
isn't helping me..they have told me that I am in a bad habit of staying up late...doctors
have said the same to me...but there are a lot of doctors that are on board with
this (rls) and they believe us, treat us with medications, sometimes counseling and
they have their door open for us..I live in the USA where doctors work in the grocery store-
they set up their clinics in private spaces within the store..seems like there are a lot
of doctors to choose from...I've been told that it's not true that the UK has accessibility
to so many doctors..I do wish that they did. Doctors work in clinics/ hospitals as well over here. My point is that there are a ton of them.
I am imagining that work is a big problem with you and that mainly they are the ones
that think that you are making up the disease..many of us (me included) have been
ridiculed over my symptoms - especially when the description that comes to mind
is "it feels like bugs are crawling on the inside of my legs" or "I have to stay up walking
at night because my legs won't lay still" I can imagine from their view point that they
never heard of any such thing...I didn't either know that my symptoms had a name..
not until 2 yrs ago..I have medicine, it works very well but I have times when the
RLS symptoms break through the medicine schedule that I have.. That may be true
of many on this forum...
As I told you in Private Message, Have a look or two at rlshelp.org and then
come on back to get your questions answered. =)) and welcome to the forum. =)
That is why they have renamed it so that it is taken more seriously. I am a cancer survivor and in all honest I would rather have had cancer than suffer chronically with RLS.
That's a very brave thing to say Rublane25 and many people are going to admire you for it! I must admit in the past I have made statements like "at least if I had cancer I would be cured or die". They were the kind of thoughts I was having when at my lowest.
Who has severe RLS knows what it is and how bad it is.
In my opinion and experience triggers extreme deep Depresion with less than an hours sleep every night and working a full time job. This is no joke and not just in our minds
I can understand what you mean Rage85. I have even had comments from my family like "mum's mad woman disease". It's the most understood syndrome of all I think. When Fibromyalgia was first mentioned it was criticised as "all in the mind" but that is now well recognised. Here in the UK, certainly in my area, there is little understanding of RLS. I am the first patient my doctor has treated and she is being guided by me and thankfully the knowledge I have gained from this site. I can think of no worse thing to suffer with than RLS. Sleep deprivation leads to all sorts of other medical problems and at the top of that list I think is probably depression. I am a very happy person but after weeks of no more sleep than a couple of hours a night - I turned into a quivering wreck. Good luck and keep visiting this site, it has helped me immensely.
Just to say, that the name here in the UK, its still Restless Legs Syndrome, it hasnt been changed. Thought i would just mention that, so anyone reading that its been changed, would be confused to what that means. The RLS Foundation in the states have changed their name to WED Foundation.
cicek in reply to
I too am in the UK Elisse and was beginning to wonder if the name had been changed here. We are so behind the USA with this disease so it's nice to chat to the American people on here and get their help. We would be a long way behind with our information without them.
I agree with Elisse, RLS is the uk name and i realy hate the USA name wed !!,
Here in Canada it is called Willisekbom which I beleive is after the doctor who discovered it was a real syndrome
in reply to Rubylane25
Hi Rubylane25, yes you have the name change too in Canada. Willis Ekbom Disease is what it is called. Willis is after Thomas Willis who first noticed that people were flaying their arms and legs and couldnt sleep, that was back in the 1600's, Ekbom is after Karl Ekbom from Sweden, who gave it its name back in the 1940's.
Rubylane25 in reply to
I am glad it was changed because so many people think RLS is not a serious disease and we all know how negatively it can affect our lives. Maybe this is the beginning of others taking it seriously!
Hi think its called that here in th uk but it still goes under the name of rls i visited the pysio last year at the doctors and she asked me what restless leg was can u believe that i honestly believe that nobody takes this serious they should live with the pain for a day
in reply to cicek
Yes, we do play catch up here compared to the USA, most of the medications are developed by American drug companies. And research is mostly done over there too. Altho not much is going on with either of those at the moment.
in reply to
the doctors that I see here still call it rls. at least my doctors do. I am
a usa'er.
in reply to
Thats because not many doctors like the name Yikes, and wont use it. This is the reaction that i see on other sites.
in reply to
This site taught at least one doctor a whole lot about RLS..
it's my primary doctor who read on it..when he saw me for
RLS, he told me that he needed to study up on it..I gave him
the HU website. He's treating 5 generations of my family including my own kids, grandchild so he knows that it's likely
one of my kids will have it as well..or my grandkids..My niece is pregnant just now and she is seeing my doctor for rls...poor girl is getting nothing but relaxation classes..body massage..You guys and girls know that it takes more than that but at least she is being heard by the doctor.
didn't no that the name had been changed but the top & bottom of it is still the same whether you want to call it RLS or WED its still a nightmare to have to put up with it. wish someone could come up with a med, I have tried everything that's going even been to see a neurologist & she's referred me to see someone else because she's either not bothered or she doesn't understand the symptoms.
So sorry to hear that Connie. You must be feeling desperate and that's just not what you wanted to hear. Just shows the lack of interest in this awful thing. If a neurologist doesn't know that I'm not sure who would!!
thanks for your reply just nice to no there's someone out there that knows what were talking about because you don't get nowhere with your GPS just seem to think its all in your head & it will all go away, (just having a moan so fed up) .
in reply to connie50
Connie..Your doctor is just going to have to get with the program. Mine sent me to counciling not once but twice..
he thought that I had some mental issues when I told him that
I felt like I had bugs inside my legs..I never get that sensation
anymore so maybe the counseling did me some good but the
urge to walk and move my legs is so overpowering that it will
always need some kind of medicine to stop it. I am willing to
bet that almost half of the people on this forum has questioned their own sanity after being told they are "nuts" by others.
I was passed around from doctor to doctor as well..it was expensive and time consuming to get nowhere..Others did the same thing. If you are on no medicine, then I would be upset with your doctor..you are on medicine, right Connie? Is it helping you at all?
cicek in reply to
Well said Yikes! I don't tell many people about my RLS, not even all of my family understand. I am frequently told "why don't you put a good movie on the TV, sit and watch that and you will soon fall asleep". If only I could SIT!!!!!
That's the whole point isn't it, being exhausted and having to walk around.
in reply to cicek
Not a soul understands why I keep my feet planted on the ground and drape my top half
of my body over the bed -my knees dig into
the side of the mattress..sounds crazy but
on those nights, that's what it takes for me
to sleep..I have fallen a few times but I have
soft pillows on the floor to catch me. I am
in the guest bedroom alone when I must sleep
like this..it makes my husband so angry at me for sleeping away from him..he just doesn't get that part of rls..My son in-law is a computer geek..he puts networks in for large companies..he's the best at what he does..but anyway, he has us on a wireless network now..so at least I can travel around the house to use my laptop, or use my desktop...I do not ever sit in one spot to work..my job is working on my computer everyday 7 to 10 hours..I have a lot of mobility since Scott did that for us. =) I am work ready all the time thanks to him. haha. =)
connie50 in reply to
hi yikes yes im taking 3mg repinarole but I think its stopped working tried upping my dose to 4mg but all that did was make me even sleepier (fall a sleep about 8ish EVERY NIGHT) but then im up all night if I don't take my meds at around 6.30pm my legs send me barmy its catch 22 im in
in reply to connie50
So it's either take it at 630pm and go to sleep or you wait until 9pm and then your legs are at the worst..Have you tried 3mg at 630pm and then 2mg at 830pm? I do know what you mean about taking the medicine and suddenly you can't stand it - you have to go to bed and miss out on whatever is going on..been there so many times Connie..I think that I am so messed up with my sleep that I may as well do shift work/swing shift...If I sleep in, my family gets upset with me..Gosh they can get on my nerves. I love everyone of them but I dislike their telling me that I need to stay in bed at night. I could Connie, actually sleep 4am to 11 am and live my life easily..I do have to get up and work..some of my work comes in at 5am and it's due by noon or an hour later if they slip something in...that would be my very best sleeping time..I exhaust myself pacing, cleaning, cooking in the night...and the smell wakes my family up sometimes...I just can't win..but anyway, there is pramipexole for you to try yet...or narcotics..and maybe a short trial of narcotics or Lunesta (sleeping pills) could give you a night of sleep so you can find your bearings and function will help...there are some days when I am so tempted to start in with marijuana...the more I read up on it, the more good it does for the body..and the less damage it will do long-term..I wish that it was legal here where I live..Gosh, I hope you get some sleep when you finish up work...at least 5 good solid hours will make you feel so much better..If you need to talk..bug me anytime or any of us..Take care of yourself..=))
Sorry to heat you are suffering so much Connie, and sorry you are not getting the help needed from your doctor or neuro. My doctor definately doesnt think its all in my head, i do know i am lucky to have a doctor who understands, as many seem not to.
just received another letter from the hospital informing me I have an appointment to see another neuro (this is not while next year) how am I suppose to cope with this dreadful RLS like I said previously no one seems bothered just fob her of &she will go away.(sorry about the moaning)
My doctor knew nothing about it Connie but she listened to me and took advice from someone else and was really understanding. Not been referred to a Neurologist yet but she said he would first ask if I had tried all the available meds. I am starting to struggle with Requip XL 4mg so when I finally get back to the UK will probably ask to change to Pramipexole. There are some good doctors out there in the UK. Have you tried a different practice? There are also clinics which specialise in RLS. Don't worry about moaning - I have been there plenty of tines and I know how you feel. Is RLS quite new to you?
hi cicek I have suffered with this dreaded RLS for 2yrs or more literary tried everything going like I said seeing a neuro now (when it suits) been on this site before but been very quiet just put up with it but know the meds im on (repinarole 3mg) I think they have stopped working tried upping the repinarole to 4mg but it makes no difference just makes me fall asleep sooner rather than later
in reply to connie50
Your news is actually good news..it gives you a chance to switch up
medications..if 4mg is not working for you, its probably time for you to
try another route..that is a pretty hefty dose that you are on..Can you
just call the hospital and ask to switch it up and also for tramadol at
the very least - or a sleeping pill?? It is sounding like it's been very hard on
you to get little sleep..I feel bad for you because it seems like it would
take a lot of courage to ask the doctor for a new prescription..As Cicek
asked, can you find another doctor or is that the one and only? I know
that I am overwhelming you with questions..my memory isn't that great
that I can remember what you have been taking or tried...It would be
so great if next to the connie50 post there would be a little label that
said what meds you are on..
Wow, that is no way to try and sleep. Thankfully mine has never been that intense. There are nights when I have trouble falling asleep, or will be awoken by twitching. For sure my wife has it the worse. She wakes up repeatedly from the bed shaking when I twitch or kick my legs. However I will say that by 11:00pm, I am so tired, it would take a lot to keep me awake. Lying on my stomach always gets me to sleep. If I lay on my back, my legs go nuts.
in reply to
It's terrible, I know. So both of you have rls? It's probably not
a fun day around your house when the two of you have been up.
Some people need to cuddle up with their partner to go to sleep,
most sleep better all alone..that's the case for me...What did cut
down on the legs and arm jerks and the kicking for me was the
introduction of the body pillows..I can prop them around me and
hug that pillow so I won't jump awake..Some people like the weighted
blankets..I almost need one of those to sit still enough to watch television
or to sit down with the family to relax..Lots of people can lay on their
stomach and hook their feet onto the end of the mattress..I can't
do that, I am a side sleeper..and my neck gets kinked up if I sleep
on my stomach..So Simperb, welcome to this forum..here comes
the dreaded questions for you...What drugs are you using, if any
to control the symptoms of rls? How long have you had rls and
did you try anything that worked for a little while and then quit?
Did your wife try medicines? How are you coping with rls?
Simpurb, spend about 15 mins or more on the following website..it's got
a ton of information on treatments, symptoms.. all aspecs of rls..
Here's the site..click on it and you will be there..from there, choose a category
on the left side of the screen..after reading some of that information, come on
back to ask questions, make comments or to read up on how people are coping
with RLS symptoms..Nice to meet you on this site..your wife may want to look
on this site as well..
in reply to
You will have to send me the website name. I cannot see it from your post. Nice to meet you as well, and thanks for the information. I will check it out tonight.
KaarinaAdministrator
Hi Rage85
You are right in that some friends, family and some GPs dare say that RLS is in your mind. This happens with other symptoms too. To the patient they are very, very real and certainly not in their imagination. Quite often if others cannot "see" what is wrong with you many just cannot begin to understand or even wish to do so.
Kaarina
Hi yeah i get that feeling that my family think its all in my head i hate the way they dont understand how tired i feel and the tablets i take that the doctors give me just simply knock me out or leave me feeling like a zombie
Hello all
I want to know if I have RLS/WED. My symptoms are as below:
1-If in day time i try to take a nap, i suddenly awake up and feel that my thigh mussels need light massage. I feel that something is crawling in my thigh mussels. Sometimes my thigh mussel become hard so my kids keep rolling my thigh.
2-I cant avoid my legs from moving, stretching.
3- mostly this problem happens when i want to sleep in night time.
4- i noticed it effect more bad if i pass my sleep time.
5-My father 65 years old has almost similar problem since his childhood and myself having this problem from my childhood.
6- my two brothers also have same problem .
7- once i had blood test n iron was deficient. Dr advised to take multivitamin. It helped me for short time.
8-i noticed that when i m on bed and i feel that sleep is away from me, i feel that now i will have leg mussels problem. Then i start feeling.
9- the only treatment o do, that i lay down on hard mattress, make a roll of stiffed cloth and i lay over my stomach down, then i role my thighs over that roll. My mussels get massage n most of the times i can sleep.
10- I noticed that when i have work pressure, business tension, next day meeting, or upset, i face this problem more often.
11- sometimes nothing works out when i had severe attack then my wife treats me. Crawling her fingers on my body gently for 15 to 30 mnts, and i forget issue with my legs.
12- i have similar problem in traveling, taking rest in office sofa sometimes, watching tv etc.
--------------
I m in Kuwait and doctors here just ignore, they just give pain killer or massage cream.
Can anyone help if i really have RLS symptoms?
Thanks
Shahzad
+965 90026275
Hi Shahzad, I'm not sure if anyone else has replied to you, but to me it does sound as though you have RLS. I suggest you show your doctor some of the great information that can be found on the web. If you look back at the early messages in this chain you will find a website Yikes has recommended, or you could go to rls-uk.org for more UK information. I hope you find some help soon.
They wouldn't say that if they had ever experienced it.
Hi, l haven't been posting for a while. l was eventually prescribed iron pills and they are helping. l also took the advice from someone on the site, sorry but i can't find the post, she said she tried lying in the feotal position for a few minutes, it stretches your nerve endings i think she said, well i have tried it a few times and it has worked for me. lf you can do as soon as you
feel rls starting it works better. l thought anything is worth trying and it doesn't cost anything or involve anther visit to he doctor.
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