Help design the new RLS-UK family/friend/employer booklet

Hi all

As mentioned previously on this forum, I am looking to create an advice booklet for families, friends, employers of those living with RLS. Not sure yet if employers will be a completely separate one - will have to see how much content I have etc.

The brief booklet will be available to RLS-UK members.

If you are happy to, I would appreciate if you could jot down a line on what you would want your family, friends, or employer to understand about RLS. For example, for my part...

- I would want my family to understand why I am tired all the time.

- I want my employer to know that if I call in to work and say I have been up all night and cannot come into work that I'm not taking a 'sickie' (have only had to do this twice thankfully).

- I would want my family to understand that it's not funny, that it's painful and there are times when I have beaten my legs so hard that I bruised myself.

Things that would make my life alot easier and I ask you to do:

1) Please respond by filling in one of the Comment boxes below.

2) Please only provide ONE COMMENT per reply so we can build up a thread as I have done below.

3) Please start your comment with the word Friend:, Family: or Employer:, again as per my example below.

4) Please can we minimise discussion within this particular blog as it will make the extraction of your thoughts much easier.

5) If you share a particular sentiment and agree with a comment please hit the 'Reply to this' button and say 'me too'. This will help indicate what are the most common thoughts.

6) Please try to keep your sentences short and to the point. This point is particularly important!!!!

Hope this all makes sense.

Thank you to anyone who helps.

Daragh, Chair RLS-UK

rls-uk.org

178 Replies

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  • Family: I would want my family to understand why I am tired all the time.

  • me too

  • me too

  • Me too

  • me too

  • me too

  • Employer: I want my employer to know that if I call in to work and say I have been up all night and cannot come into work that I'm not taking a 'sickie' (have only had to do this twice thankfully).

  • me, too

  • Employer: I want a term or a name for RLS that doesn't make it sound so trivial that you are embarassed to talk about it, and that explains the sleeplessness.

  • I agree, RLS is not a good description.

  • me too.

  • me too

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  • The official name whether we like it or not, is Willis Ekbom Disease in the US/Ekbom Syndrome in the UK. That alone causes problems becaus ethen you have to go into the whole "who are they" scenario.What I used to tell people is that I have a sleep disorder combined with a movement disorder that makes it impossible to sleep some nights.

  • that is what I told people at work. Anyone else I will go into as much detail about RLS as possible.

  • me to

  • I think we need to deal with this with a two-pronged approach. Firstly: keep it nice and simple, i.e. an employee with RLS suffers from a condition which means they have severe involuntary leg movements. This can mean that their sleep is often disturbed leading to tiredness at work the following day. RLS can be treated but unfortunately the side-effects of the medicines used cause tiredness. An understanding and supportive management attitude would be welcome. The second way is to state that RLS is a condition covered by Equality legislation and therefore it is against the law to discriminate against a RLS sufferer. Assessments should be caried out to establish the risks and reasonable changes to the employee's work should be undertaken where possible. People more clued up than me can fill in the gaps with proper details...

  • Me too!

  • 100% yes!

  • Family: I would want my family to understand that it's not funny, that it's painful and there are times when I have beaten my legs so hard that I bruised myself

  • me too

  • Me too

  • me too many times

  • me, too

  • me too

  • A big me too

  • Me too

  • me too

  • Family/Employers and Friends- Never tell a person with RLS it is all in their heads. Sleep deprivation kills. RLS in and of itself will not kill you, but all the problems it causes may kill you.

  • I agree

  • me too.

  • Me too

  • me too

  • me to most definately

  • me too

  • me to

  • Is like people to know that relaxing and thinking about nice places DOESN'T help

  • true

  • me too.

  • me too

  • I agree. Visualization of of nice things are not going to stop a raging attack.

  • me to

  • Symptoms tend to come on most when you are relaxing, that is the most frustrating thing.

  • Family and employers.... When I am tired and been up all night and my legs kick of through the day I am snappy and moody and it's because I am annoyed with myself and worn out! Also being told to walk and walk and to stop thinking about it does not help especially when they say eventually I will tire myself out and fall asleep...... Hello it does not work like that! But in a better words please :-)

  • I agree

  • me too

  • explanation needed of exactly what long term sleep deprivation can do to your brain and body, so agree

  • me to

  • The more tired I am the worse my symptoms can become. Therefore one night of hell like tonight can have a knock on effect over several days and weeks until it settles down again. The worse its is the less I can relax and the more irritable I become!

  • I agree

  • Family/Employers/Friends: I'd like everyone to know that I am not being a Drama Queen when I have to stand up and move about regardless of where I may be. I am not making a show, I am traumatised !!

  • me too.

  • Me too

  • me too

  • i agree

  • me to

  • me too

  • 100% agree. I try to avoid standing up so as to not make a fuss (Particularly in situations when I am with people I do not know or in a professional environment) and this often makes the symptoms worse.

  • Me too

  • me too

  • friends... id like my friends to know, im not doing it for attention, im doing it because i cant stop it

  • me too

  • Me too

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  • me too

  • me to

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  • Friends .... I wish you would understand that when I say I can not drink alcohol because it makes my legs worse that I am not chickening out and using an excuse but I am the one who will suffer and not enjoy it !!

  • me too

  • me to

  • Family/Employer/Friends .... The symptoms are not at all trivial and are not in my imagination, they are very real.

  • Yes.

  • I agree

  • me too

  • true

  • me to

  • me too

  • Everyone: imagine the most annoying repetitive thing happening to you and yu cannot stop it. No amount of tiredness, walking, medication and taking it off my mind will ever stop this pain. It is incredibly painful and annoying. This is RLS.

  • Yes.

  • Me too

  • me too

  • i agree

  • agreed

  • me to

  • Maybe relate it to being poked every five minutes repeatedly over several hours??

  • Family/Employer/FriendsThe lack of sleep as a result of the symptoms plays havoc with my life and those around me ie in making decisions, planning in advance, .

  • me too

  • Me too

  • me too

  • me to

  • 100% Yes! Limits the ability to think straight and concentrate on even the simplest if tasks.

  • Family/Employer/Friends ...my symptoms as a result of RLS make long journeys, cinema/theatre outings, meetings in the workplace hell at times.

  • me too. Plane flights are so bad, I've felt like jumping out!

  • me too

  • me to, cant remember the last time i went on holiday

  • me too

  • me too

  • me to

  • Employer - Please be time aware when scheduling meetings.

    3 hour meetings, especially those starting after lunch are HELL. I'm not bored, I'm not 'dis-engaging', I'm not being disrespectful. I am in pain, hurting and I need to move, not to be told to 'sit still and enagage in the meeting'.

  • Me too!

  • Yes defiantly things I avoid!

  • Family/Employer/Friends ....Driving can be dangerous due to overtiredness due to lack of sleep due to my symptoms.

  • me too

  • yes, drowsy driving is an epidemic. Saw a test where they tested sleep deprived people, and people who had a few drinks. Sleep deprived people sometimes scored worse than someone with an illegal alcohol level behind the wheel (on a closed driving track, of course) ;o)

  • The thought of driving actually scares me at times. The sleepiness is unavoidable and very frustrating. As the meds we use also can cause drowsiness and mine (Neupro) recommends that you do not drive, there seems to be no escape from this!

  • Family/Employer/Friends .... please refrain from trying to be helpful and suggesting ideas as to what I should do, to be "cured". If I knew what to do, I would most certainly do it and tell the whole world.

  • me too.

  • me to, most definately

  • me too fed-up with everyones "I know what you can do" or "have you tried"

  • me to

  • shouldn't that be Family/Employers/Friends/Doctors

    Don't tell me to go for a long walk before bed it doesn't work just makes it worst if it did work i'd do it,

    Doctor/ believe me it's not in my mind that im not sleeping because i have something on my mind and need antidepressants that makes it worst!!!!

  • I agree

  • me too

  • me to

  • me to most def.

  • totally agree about the doctor! I think we should do a leaflet for the GPs. (including - relaxation, warm bath, de-stressing DOES NOT help)

  • I want my family to understand that when I cannot stay up and watch tv or a movie with them, it is not because I don't want to. Being isolated from my family because I am uncomfortable is depressing.

  • I feel the same

  • me too

  • me to

  • Family and Friends, I would like you to understand that my lack of enthusiasm when it comes to planning outings and travels is due to RLS, not indifference!

  • me too

  • me to !!!!

  • me too

  • me to

  • ....and lack of sleep!

  • Employer and Family:

    RLS (Exboms Syndrome) is a condition (neurological) that means your arms, legs and other areas are affected by a need to keep moving, stretch,

    and massage the affected areas.It has been described as itchy,electric shocks, and jerking. It causes lack of sleep and a general felling of tirednes, which is exacerbated by side effects of medication. It has been known that the stretching is so severe as to actually cause muscle damage. (I have damaged my arms several times)

    Bit more than a short sentence I know but it's worth saying:-)

  • I agree

  • me too

  • I agree

  • I agree

  • me to

  • me too

  • Family and Friends ... when I am impatient, lethargic, not listening, tetchy, it is because of lack of sleep due to the RLS symtoms not you.

  • I so agree!!!!!!

  • me too

  • me too!

  • me to

  • Family, Friends and Employer . Imagine you could not sit/lie still, relax or sleep for any length of time, on a daily basis.

    This is my life.

  • me too

  • I agree

  • mine too

  • me to

  • me to

  • me too

  • Employer: if people don't like RLS in the leaflet to employers, why not use "Ekbom Syndrome"?

  • Ekbom Syndrome does sound "better" than RLS. Anything does! Surely the next question is "What is that? Restless Leg Syndrome.......those words again.

  • why legs when most of us it's should be Muscles ,agree should be Ekbom Syndrome

  • I agree

  • I agree. Calling it RLS can sometimes, to the unaware, sound like you are a bit fidgety. People seem to take it more seriously once it has a more official sounding name. I tend to tell people I have a neurological disorder and not give it its RLS name.

  • Partner..... Please understand when im having a really bad rls time i am not me im sleep deprived emotional angry.snappy . Im hurting and its not my fault. I hate how it effects are lifes as much as you do. But its here and its real. If i could get rid of it right now i would its just not that easy.

  • Family....... Rls is causing me severe mental and phisical torture. Im not overreacting. What i feel is very real and has an extremely negitive effect on my quailty of life. Sometimes i really have reached my limit. And feel like i cant go on. Thats not imaginary or something that can be fixed by relaxing:!!!!!!! Its a serious medical problem!!!!!!

  • me too

  • totally agree

  • me to

  • me too

  • Ekbom syndrome is a much better word it sounds more important than restless legs as I have found when telling people in the passed and how I describe it is it's torture and like Epilepsy in my legs and arms!

  • Me Too

  • me to

  • family and friends. Willis ekbom syndrome also known as RLS is a chronic progressive disease, and there has yet to be found a cause or cure. It is clinically challenging, and personally devastating. Evenings are the worst time, so when I cannot baby sit I am not being lazy.

    It is very hard to plan ahead, I never know how I will be from one day to the next.

    The constant pain and fatigue I feel are very real, and even though I put a brave face on it and try not to give in, I very likely am feeling awful a lot of the time.

  • me to

  • Friends, Don't keep on and on at me to try sleeping pills and other things when you don't know what your on about and when asked if you'd like a web site so you can read about RLS then turn round and say no thanks to me that's Pure Ignorance ggrrrrr!!! hmm.... that's what i got this morning after no sleep for couple nights (i walked away so bloody angry)

  • Pure ignorance when someone will give you crap about something they don't know anything about, but feel the need to tell you how to fix it. I think we have all been there on some level. When I was working, I shoved my boss's face into the conputer screen and made him watch a few videos and read uup on rlshelp.org. He did finally understand it, but it was yrs of trying to convince him I was not nuts. :o) I do not blame you for being angry.

  • I agree I didn,t tell work - just got on with it to avoid being laughted at!

  • I agree

  • I agree

  • Hi Gypsy :)

    Hmmmm, methinks it may be time to give the axe to some of your friends ....;)

    Kaarina :)

  • hey Kaarina :) you could be right .... to say the least i felt so angry at how a friend/neighbour could be so ignorant she always passing comments on my not sleeping lost count of the amount of times i've tried telling her so thought it would be a good idea for her to read but then she doesn't lol oh well guess there are going to be some folk like that ,

    sal :)

  • For Everyone PLUS doctors- Sleep deprivation brings on depression. It is sad when the conclusion is jumped to that we are depressed so that is why we are not sleeping. It is genaerally the opposite. How can you help but be depressed when your life is so turned upside down by a disease that never goes away, and does not let you even rest your mind? Too many people are taking antidepressants because the doctor assumes (not always) that they are not sleeping because they are depressed, not the other way around, and then the meds they prescribe for depression generally make RLS worse. Not all, but a LOT. That is a very strong point that should be made.

  • totally agree

  • I agree

  • totally agree

  • 100% agree

  • Employer (family/friends) - Listen to me when I state I can not drive back from afternoon/late meetings. Not because I'm tired but because I don't have control over my legs and they randomly twitch and jerk on the gas and brake peddles!

  • Employer/Friends/family - Even once you have understood (accepted) Ekbom Syndrome please always remember that nothing is written in concrete - each individual's expereince is unique. Not everyone will experience everything. The symptoms can also change over a person's life.

  • Employer/Family/Friends

    I get respite from my ES by going to bed and laying down, the opposite of many sufferers. However that doesn't mean I don't have ES (diagnosed by GP) and I do in fact have massive sleep disturbance due to the PLMS (diagnosed at sleep clinic).

  • Employer/Family/Friends - Generally the symptoms of ES get worse over time. That means that you need to be thinking forwards, thinking and planning how you (and of course the sufferer) are going to cope when things get harder to deal with. There is no point having an employer being adaptable at work for a few months and then sliding back to old ways - The sufferer is always going to need extra assistance/understanding/flexibility.

    How much time it takes for the syndrome to progress and get worse is unique to each sufferer and like everything else with this syndrome there are exceptions where the syndrome remains the same in a person for a lifetime.

  • Family, Friends and Employer - There is no point having an *early night* to catch up on sleep! sometimes I fear going to bed because I know once I'm still, my legs start jerking around and having major spasms keeping me awake.

    Imagine having Parkinsons tremors when you're exhausted and want to sleep, and being scared in case it isn't just ES :-(

    Physically, socially and emotionally ES sucks!

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