Its so frustrating when family members dont get it!!!!!!

Aaaggghhhh i love my family to bits i really do but why cant they belive what i am telking them abour how bad my rls is. They ask me how i am i tell them and i always get the same replys . Uve just got to relax juat lay in bed and relax dont thibk about it and it will go.!!!!! Just forget about it ....aaaaggghhhhhhh the worst is being told that they think its a mental thing to do with anxiety that its all in my head!!!!! It really upaets me cauae i know how i am feeling FEELING!!!!!i can feel it in my legs if i do get to skleep my legs actually wale me up!!!!! Its a physical thing and it is real!!!! I just hate trying to prove that to people. You cant just forget about it its such an uncomfortable very real and irratating feeling that i get everywhere not just my legs. I loveeeeeee my sleep and wouldnt deniy myslef it when i want it i just cant cause eveywheres twitchin so much . How can i make then understand!!!!!!!!!

41 Replies

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  • well for me , i showed them some of the things i found on the internet, made them sit and read it. but as my mum had it, and also my son, it was a bit easier to get across to them how bad it can be at times. My ex partner didnt believe how it affected me, so with him, i woke him up every time the rls woke me up, and i would stay in the bedroom and pace, so he could not sleep, so he suffered as much as me, :) well hes long gone and good riddance to him :)

    hope you find your solution soon.

    jean

  • well the crazy thing is my mum dad and brother all have this but very mildly i would say they feel it maybe once or twice a year and it so mild they can still sleep with it. i think they put it down to tiredness or something. they just dont seem to belive just how serious this is for me. i really think they think i am overreacting its so furstrating. why should i have to try and prove to my nearest and dearest that im really having a bad time with this!!! its bad enough trying to get my docter to understand let alone my family!!!!! :(

  • Show them the patient letters on rlshelp.org. there are 12 YEARS of people writing about their RS, and the doctor's answers, who is an RLS expert. Knowledge is power, so you need to do reserch, ask questons, and we will help.NEVER go to any site that promises to stop your RLS immediately. they are all thieves, because none of that stuff works; they are just going after desperate people.

    RLS has different levels of severity. My niece has it mild, I have it severe. The genes have been discovered that proves that lots of cases are inherited. That is prmary RLS, and if your relatives have it even slightly, that means the gene runs in your family. that is hard, proveable science that does prove that rLS is not all in your head. I don;t remember the last person who who told me to "just lay down and relax". I don't believe they are breathing at this time! :o) So, research and get your facts to present, stay away from scammers, and ask any question you want here. We have way more experience than we need at this thing! Oh, and secondary RLS means there is a findable underlying cause, like a low Ferritiin level (how your body stores iron) that could be your problem, but do not just start taking iron; you need a Ferritin level done (show how your body stores iron)

    And, tell, your relatives there are 5 medications approved for RLS in the US, and it is not all in our heads over here! And the patch is coming out on July 1st to make it 6 meds for an "imaginary" illness.

    I manage online support groups, one has people from 29 different countries, so it is not all their heads either.

  • My two sisters and two nieces, plus the oldest niece's kids and husband have RLS, so no one in my family is not going to "not get it". LOL We all suffer together! But, a helpful brochure would be good, as well as showing them web sites. Let us remember, that not ALL people have computers or internet access, so print versons of things that are seen on the internet is a very helpful awareness tool in the entire "awareness tool kit" :) (speaking about Daragh's "family brochure" post below) Obviously from posts around this site and everywhere there are people with RLS, LOTS of people do not understand RLS, and could care less. It is our job to make them care. IT is really frustrating, but when we get thru to someone, it sure feels good, doesn't it? Out of everyone, you would think familes would understand or at least have some empathy for people who are in obvious distress.

  • I may sound totally insensitive towards family members who don't 'get it', but they must be deaf and blind not to!

    I was diagnosed well over 30 years ago, and have been married to the same man even longer. We haven't shared a bed since shortly after the diagnosis, as it was not fair for him to be assaulted by my legs all night long and then have to go to work the next day without any rest. That was the first and most obvious way that he began to understand what RLS symptoms are like. So, if you are sharing a bed with your spouse or significant other, they get it!

    We also spend almost every evening sitting together in the same room. During those evenings, when I've experienced augmentation on one of the many drugs I've been prescribed for RLS over all these years, or was working my way up to an effective dosage, and my legs were making me miserable, it was impossible for him not to notice my legs jerking and jumping like they were on elastic bands being manipulated by a sadist, or me moaning, groaning, and/or sobbing in utter agony and frustration, wondering how much worse it could be if I had them amputated!

    Anyone regularly spending evenings in the same room with someone with RLS will get it! If they don't, they are intentional ignoring you, or they are suffering from something much worse (although short of a drunken or drug-induced stupor, or coma, I can't fathom what would be worse than uncontrolled sever RLS).

    That being said, I feel it is every bit as frustrating to read the countless posts by RlS sufferers whose doctors don't get it! And for all of you, if your doctor refuses to educate himself, then you MUST be proactive - either take him literature from RLS.org, AND go over it with him, or ask to be referred to a neurologist that is familiar with RLS and has treated patients. You should do your own research to find those neurologists, and speak with their offices to be sure you won't be wasting your time and money. I am in the USA, and realize many reading this are across the pond, but we have the same challenges. Hopefully, we'll have the same solutions!

  • RLS-UK have recently redesigned our information booklet for patients but this thread has given me an idea to also do one for family members so that those living with RLS can pass the leaflet to them.

    Please leave this with me!!

  • that sounds wicked!!!!!! i think it would really help everyone who has trouble getting family members to understand :)

  • great idea Daragh, hope you can carry it through, :)

  • Why Daragh? We were recently talking about costs of running the charity side and to increase costs by producing another brochure based on a handful of posts could be seen as a knee jerk reaction to a problem that may not exist in any serious numbers?

    Bob M

  • In my experience and I have suffered with RLS for years and was diagnosed some years ago (and have since found that several members of my family suffer from RLS and they have the same issues) trying to make people understand how debilitating this condition is, whether extended family or employers is very difficult. I don't happen to have a visible impairment and so, it is to all intents and purposes it is a hidden condition.

    A leaflet which explains the torture (and it is torture to be deprived of sleep ) that many of us go through, in clear and simple terms I feel would be invaluable and extremely helpful for many of us. The reason I joined RLS-UK was to be supported and to support other sufferers.

  • We are all in the same position, are you saying a leaflet no matter how well worded will be more powerful to your family than your actual suffering?

    Plus explanations of RLS exist in many versions all over the web, so it will be reinventing the wheel?

    The charity has limited funds and must spend the money where it will get the best results. I dont feel this is a good spend, your own experience must be a stronger witness than a piece of paper, that's all I am saying.

    It will almost certainly be produced so I wouldn't worry.

  • I have a very wide circle of friends, family and acquaintances, not all see my private suffering and indeed many cannot possibly understand as they are not the ones affected by this. Are you saying that no one anywhere should produce informative literature ? Are you claiming that informative literature has no value ?

    We are all entitled to our opinions of course, and your opinion is as valid as the next persons, however, my understanding is that the charity has a duty to increase awareness of the condition and that is what they are endeavouring to do as far as I can see.

    In fact, this initiative appears to be designed to do just that and from reading the other posts, it seems to have support from all but yourself so far and so as a fully paid up member of RLS-UK/ESA, I hope they do produce an informative leaflet for friends, family and employers....and the sooner the better.

  • I am saying its all ready out there!!

    Why spend money ding the same thing, because I assume you have tried all the current written methods and they have failed?

    Please explain your comment about fully paid up member of the charity?

  • Certainly, my comment about being a fully paid up member of the charity means just that.

    I joined RLS-UK/ESA a few years ago and pay my membership fee every year and as I am paid up to date, ergo I am a fully paid up member of that charity.

    I certainly don't have the time to research all the current written methods and besides, I have every faith in my GP and my consultant to work with me to keep my RLS under reasonable control.

    What works for me or you or anyone else may not work for another person anyway, that is the curse of this condition.

    I still believe we have a long way to go in getting people to understand how we suffer. Informative leaflets are just one way but I believe they have a place and I wait with baited breath to see what Daragh and RLS-UK/ESA can produce.

  • Dont see the point of this post at all? I asked why you made a point of being a paid up member of the charity? And we were discussing a document not GP support!! Interesting to note that because you cant find the time to look the charity should print something for you!!! Great use of the charity's time and money

    Now do you want to announce your connection to Daragh or are you actually Daragh?

  • This is a forum for people who want to post about RLS issues is it not ? and as such I was simply using this to post my views, the fact that you don't agree with them is your problem, certainly not mine.

    You use the term "we" as though you speak for other people on the forum and I'm sure that you don't.

    I apologise to other forum posters that this exchange has degenerated into a silly argument and so im sure most of you will no doubt be pleased to know that I am not going to pursue this pointless negative conversation and further even if replied to.

    Formthe record, I am not Daragh, and I think you realise that and are simply being antagonistic, I'm sure you can argue with yourself without any interaction from me or anyone else.

  • GOSH!!

    We (you & I) were having a debate, an exchange of views which is what a forum is about, why is my disagreeing with you ';...my problem......' that appears to say that a point of view that differs from yours is not normal ie. problematic?

    OK dont pursue that's fine you were running out of any debating points anyway.

    I dont know who you are, I use my real name and actual picture, you use a screen name and no picture so I was curious and what's wrong with that?

    Have a great day

    Regards

    Bob M

  • ok, im not getting involved with any argument going on here, but ive been looking back on things on the forum ( not feeling to good, so im browsing ok, :) ) and i admit to being a bit perplexed as to why anyone is against a leaflet being printed ? i will say im all for it though, especialy as not all people have a computer, so therefor a leaflet is a good way of them finding out about rls, this forum, and any other info about groups, and treatment. Before i had my pc, a friend used to look things up for me, as i have never seen any leaflets anywhere that i could get information and help from. So then i saved and got my first pc, BUT it gets me thinking that theres more than one way to get info out there isnt there?? and i think leaflets and as many posters as we can get out into the public domain has got to be good. One thing i do myself though, i take copies of our groups when i go to see my neurologists, ive got talking, as you do, to a few other patients in the clinics, and some are not aware of support groups at all so thats just my way of trying to help, but if leaflets were printed i would gladly leave then at the clinic for others to see that they can join and support each other, is that not what we want, help for all, not just the ones who have access to a pc ???

  • Niah177

    Not against a leaflet, my argument is that what are the charity going to produce that doesn't already exist? Money is very limited and I feel every £ spent should be looked at in many ways before it is.

    As you may note from LARKLEGS, the issue there is this user hasn't time to look up the info that is out there already, now I dont think that is a good way to spend money helping people that are too lazy to find out themselves?

    This is the LARKLEGS paragraph I refer to:

    ============

    I certainly don't have the time to research all the current written methods and besides, I have every faith in my GP and my consultant to work with me to keep my RLS under reasonable control.

    ============

    Niah177

    Is that what you want your £10 and many others £10's spent on? If it is then fine.........but I bet you dont really support spending money on the laziness or complacency of others???

    So if the charity produce a piece that is not already available then I am in full support, if they just do the same thing again, then I say the money is better spent elsewhere.

    Kindest

    Bob M

  • well, for me personally, i didnt find anything "out there" Bob, and my doctor wouldnt entertain any treatment for me, i went to the library and searched,but everything was out of date, thats one of the reasons i got i friend to look it up on their pc for me, and also the main reason i got a pc for myself, so im sorry Bob but i really dont think it is all out there already, and i think ever little helps, and as for my member fees being used for this leaflet i have no objections to it, if it helps one person im happy with it, also im sure that it will be researched and looked into very well before its finally decided what goes in the leaflet, and maybe we will get to add to it, or see it first so we can comment or give ideas for it. As for other members being lazy to look things up, well ive just explained the problems i had, and i cant comment on their research or lack of it. One thing i will say, ive had most of my help and support from Donna and Irene, since i found them, and quite a bit of new info from this site also, so im happy with what they do for us, and i have been a paid up member for around 5 years now

  • That's fine Niah177

    I have no objection to you thinking that way, I have stated I believe the brochure will be produced.

    Surely I am allowed to put my, alternative view point on the forum?

    I would welcome something new and 'break thru' in describing RLS.

    Kindest

    Bob

    PS:

    I am surprised you say its not out there, you are a good web user and many sites have detailed explanations of RLS, from medical thru to knowledgeable and willing lay people.

  • ooo, no im not, your allways teasing me about my lack of knowledge on the pc, but ive enrolled in an IT class now, heaven help my teacher, shes got grey hair allready !!!...lmao

    and yes we are all allowed an opinion, , and we certainly use the chance to voice then dont we :) :P

  • Good idea Daragh, We see alot of posts where family and friends just dont understand, even doctors..!!

    But to have information for family to read might help those who find the people who are the closes to them just dont believe what they go through.

    Also, perplexed, do what niah177 has said, show info from the net, or even show them this forum, let them read just what we all go through..

    That could open their eyes...

  • i will try that weather they will look at it is is another question. if that dosnt work i will print it all out and sit with them and make sure they read it. i got to do something there my family i need them to get it. so that i can ring them or talk to them without feeling like they think i am rambelling on again.........

  • fingers crossed for you :)

  • Perplexed, please ensure you are a member of the charity so I can forward this to you when it's done. Please can you also send me your name and address and I will liaise with our membership coordinator to ensure you get the new leaflet. I hope to get it done in the next week.

    I recently received what I took to be a very harsh email from a regular user of this forum who questioned the value of the RLS-UK charity and what they would get for their £10 membership fee. They argued that the forum (which I worked with HealthUnlocked to make live) was free so why should they pay for membership...

    Well this is a perfect example (and there are many, many more) of why people should join us. We will put together the information sheet/booklet but there are costs in printing and posting which membership fees contribute towards. We will use email where possible but many of our older members prefer traditional printed material and we would never force them to adopt something with which they may be uncomdortable so we honour their request for printed versions of our documents.

    Hopefully this is a good example of why RLS-UK should continue and why we rely on members and membership fees to continue our work...

  • I am joining as a member and i urge others to do aswell its only 10£ a year and if it helps the cause in any way shape or form then bring it on :) thanku rlsuk_chair i will deffo send u my details thankyou very much. Also im feeling pretty mad at the moment cause i have been trying to spread the word about this orginization and rls in genral i printed out copys of the poster and asked if i could put one up in my doctors they didnt seem very intrested they have to ask the board first???? Crazyness i had the same response in my pharmancy only they added a few sniggers and laughs aswell !!!! I am really stuggling to understand why when people can plainly see what an effect its having on ur life they dont get it. Or belive it. Its so infurating,!!!!!!!

  • This is why we all have to set aside time for awareness work. Those of us who have been in perplexed's place, and felt that overwhelming frustration should think of at least a few things to do. My favorite thing is write-in email campaigns when it is appropriate. LIke on blogs or web sites that question the seriousness ot legitimacy of RLS. Believe me it works! :o) We had a United States congressman laugh and make jokes about RLS 3 yrs ago, and he did hear from a lot of us from my groups, and the USA RLS Foundation. We got a letter of apology, after one of my group members

    went to his office in Washington after hundreds of emails and letters had been sent. Now, that was a big awareness project with a good end! :o)

  • Oh yes, i remember that campaign well....It certainly made him take notice of what he flippantly said about RLS.!!

  • I hope we soon hear when the tv programme is going to be shown on the BBC which will be showing people who have RLS and how it effects their lives and how they have to deal with it...

    Something i did about 2 years ago was i got in touch with a breakfast morning tv programme asking if they could do a piece on RLS, as it never seems to get any air time anywhere about it..here in the UK.

    A few weeks later they did exactly that, i missed it but my daughter just caught the tail end of it and phoned to tell me.

    That is a really good way of getting media coverage and letting people know just how serious RLS is.

    Its something that we can do for ourselves by e-mailing your local tv channel and asking....no.. make your words stronger than that but of course politely if they would do a piece on RLS....even the national breakfast programmes like i did...

  • Hi perplexed

    I have given up saying that I have RLS, it sounds so stupid and I am fed up of the silly looks etc. So if forced I use the syndrome name, which of course escapes me as I write!! But it sounds so much more serious, of course in turn you sometimes have to explain it anyway!!!

    Those close to me and see the effect, well I dont have the issue with.

    Kindest

    Bob M

  • Willis-Ekbom disease Bob ?, Yes i use that one myself sometimes, works better, you get all tjhe understanding in the world with that one!!, mainly because they never heard of it, and it confuses them, or they wont admit they havent heard of it pffffff

    jean

  • Amen chuckles :)

  • Ooooo, dont get me started on the name thingy...For me, it will always be RLS, its what everyone has got to know after years of getting through to people just what it is... I would rather tell people i have a sleep disorder, then when they ask what, i tell them...

  • Good post Elisse

  • ooo, Bob you have come out of hibernation at last :)

  • When I wrote to rlshelp.org, an answer came back from one of the doctors the very next day. It was very helpful to say the least! I then printed the questions i had asked along with the Dr. answer and showed it to the family. Suddenly they understood! It does help to have inform. in print.

    At the same time it was suggested that I buy two books re RLS. One for myself and family and one written especially for doctors. These books are written by three doctors who specilize in RLS (see rlshelp.org). I ordered them both from Amazon.ca. Well worth the money I think. So far I have not had the courage to lend the 'clinical' one to my doctor but one day I will! It may help others.

    Evidently I am the only patient with severe RLS in my doctors clinic. So he tells me.

  • Dr. B. it the best there is for asking about RLS and the medications when you are stuck on where to go next.

    I am sure he doesnt have a social life because he always answers usually by the day, including weekends...lol...

    Yes, i think you have to be very brave to take a book into your doctor and ask him/her to read it that gives them all they need to know about RLS.

    I guess it depends on the doctor, whether they are open to a patient giving them info to read, or you have a one that would bristle at the thought.!!

  • My doctor tells me I am the only patients with RLS in the practice. In fact, I was the one who asked him to prescribe Ropinirole for me which, thankfully, he did. That was six years ago and it worked quite well until three months ago. From reading all the blogs, etc. I asked to be put on Neupro and that worked well for a month but the side effects were horrible. I felt wide awake, with loads of energy, all the time. When I got to bed I would just lie there and eventually the RLS would start, so I came off Neupro and went back on Ropinirole. It's working again at night but during the day I have to keep on the go as I refuse to take any medication during the day. That might change when I go on holiday. I have to be able to sunbathe and get some Vitamin C after the dreadful year we have had so far.

  • same herE, im the only one !! or so he says, but my doctor is now being fairly ok with helping me, and sorting my meds out, only thing with him, he keeps wanting me to take antidepressants, no thanks im not depressed !! im just sick of RLS

  • My partner walked out on me, telling me I was lazy. I have an autistic son to care for, with the prospect of spinal surgery on the horizon, so I move on. I get so fed up with people who don't understand, and why the onus is always on us sufferers to justify our lifestyle.. I have to work to keep a roof over our heads. For tuppence I would jack it all in to make my boy well. Life isn't so simple.So we cope.

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