Help design the new RLS-UK family/fri... - Restless Legs Syn...

Restless Legs Syndrome

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

Daragh
DaraghAdministrator

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

179 Replies
oldestnewest
Daragh
DaraghAdministrator

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

kingles
kingles in reply to Daragh

me too

Hidden
Hidden in reply to Daragh

me too

Hidden
Hidden in reply to Daragh

Me too

Hidden
Hidden in reply to Daragh

me too

Hidden
Hidden in reply to Hidden

me too

Daragh
DaraghAdministrator

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).

nightdancer
nightdancer in reply to Daragh

me, too

Hidden
Hidden in reply to Daragh

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.

Kaarina
KaarinaAdministrator in reply to Hidden

I agree, RLS is not a good description.

Ruthenium
Ruthenium in reply to Hidden

me too.

Hidden
Hidden in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

me too

nightdancer
nightdancer in reply to Hidden

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.

Hidden
Hidden in reply to nightdancer

me to

Tpebop
Tpebop in reply to Daragh

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!

gertlushbird
gertlushbird in reply to Daragh

100% yes!

Daragh
DaraghAdministrator

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

kingles
kingles in reply to Daragh

me too

Hidden
Hidden in reply to Daragh

Me too

Hidden
Hidden in reply to Daragh

me too many times

nightdancer
nightdancer in reply to Daragh

me, too

Hidden
Hidden in reply to nightdancer

me too

harecatcher
harecatcher in reply to Daragh

A big me too

alphalogan
alphalogan in reply to Daragh

Me too

arjay
arjay in reply to Daragh

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.

kingles
kingles in reply to nightdancer

I agree

me too.

Hidden
Hidden in reply to nightdancer

Me too

Hidden
Hidden in reply to nightdancer

me too

Hidden
Hidden in reply to Hidden

me to most definately

Hidden
Hidden in reply to nightdancer

me too

Hidden
Hidden in reply to Hidden

me to

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

kingles
kingles in reply to thedragon

true

Ruthenium
Ruthenium in reply to thedragon

me too.

Hidden
Hidden in reply to thedragon

me too

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

Hidden
Hidden in reply to nightdancer

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 :-)

Hidden
Hidden in reply to Rish

I agree

Hidden
Hidden in reply to Rish

me too

nightdancer
nightdancer in reply to Rish

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

Hidden
Hidden in reply to Rish

me to

gertlushbird
gertlushbird in reply to Rish

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!

arjay
arjay in reply to Rish

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 !!

Ruthenium
Ruthenium in reply to jumpylegs

me too.

Hidden
Hidden in reply to jumpylegs

Me too

Hidden
Hidden in reply to jumpylegs

me too

Hidden
Hidden in reply to jumpylegs

i agree

Hidden
Hidden in reply to Hidden

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.

bodicea
bodicea in reply to jumpylegs

Me too

arjay
arjay in reply to jumpylegs

me too

Hidden
Hidden

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

Daragh
DaraghAdministrator in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

Me too

Hidden
Hidden in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

me to

arjay
arjay in reply to Hidden

me too

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 !!

Daragh
DaraghAdministrator in reply to Rish

me too

Hidden
Hidden in reply to Rish

me to

Kaarina
KaarinaAdministrator

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

Ruthenium
Ruthenium in reply to Kaarina

Yes.

Hidden
Hidden in reply to Kaarina

I agree

Hidden
Hidden in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

true

Hidden
Hidden in reply to Kaarina

me to

harecatcher
harecatcher in reply to Kaarina

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.

Ruthenium
Ruthenium in reply to LeahK

Yes.

Hidden
Hidden in reply to LeahK

Me too

Hidden
Hidden in reply to LeahK

me too

Hidden
Hidden in reply to LeahK

i agree

nightdancer
nightdancer in reply to LeahK

agreed

Hidden
Hidden in reply to LeahK

me to

gertlushbird
gertlushbird in reply to LeahK

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

Kaarina
KaarinaAdministrator

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, .

Hidden
Hidden in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

Me too

Hidden
Hidden in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

me to

gertlushbird
gertlushbird in reply to Kaarina

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

Kaarina
KaarinaAdministrator

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

Ruthenium
Ruthenium in reply to Kaarina

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

Daragh
DaraghAdministrator in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

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

Hidden
Hidden in reply to Kaarina

me too

nightdancer
nightdancer in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

me to

dottyeel
dottyeel in reply to Hidden

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!

gertlushbird
gertlushbird in reply to Kaarina

Yes defiantly things I avoid!

Kaarina
KaarinaAdministrator

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

Hidden
Hidden in reply to Kaarina

me too

nightdancer
nightdancer in reply to Kaarina

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)

gertlushbird
gertlushbird in reply to Kaarina

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!

Kaarina
KaarinaAdministrator

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.

Ruthenium
Ruthenium in reply to Kaarina

me too.

Hidden
Hidden in reply to Kaarina

me to, most definately

Hidden
Hidden in reply to Kaarina

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

Hidden
Hidden in reply to Kaarina

me to

Hidden
Hidden

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!!!!

Hidden
Hidden in reply to Hidden

I agree

Hidden
Hidden in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

me to

Hidden
Hidden in reply to Hidden

me to most def.

secret_dancer
secret_dancer in reply to Hidden

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.

Hidden
Hidden in reply to Ruthenium

I feel the same

Hidden
Hidden in reply to Ruthenium

me too

Hidden
Hidden in reply to Ruthenium

me to

Hidden
Hidden

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!

Daragh
DaraghAdministrator in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

me to !!!!

Hidden
Hidden in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

me to

gertlushbird
gertlushbird in reply to Hidden

....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:-)

Hidden
Hidden in reply to Darcy

I agree

Hidden
Hidden in reply to Darcy

me too

Hidden
Hidden in reply to Darcy

I agree

amethystcat
amethystcat in reply to Darcy

I agree

Hidden
Hidden in reply to Darcy

me to

harecatcher
harecatcher in reply to Darcy

me too

Kaarina
KaarinaAdministrator

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.

Hidden
Hidden in reply to Kaarina

I so agree!!!!!!

Hidden
Hidden in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

me too!

Hidden
Hidden in reply to Kaarina

me to

Kaarina
KaarinaAdministrator

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.

Daragh
DaraghAdministrator in reply to Kaarina

me too

Hidden
Hidden in reply to Kaarina

I agree

Hidden
Hidden in reply to Kaarina

mine too

Hidden
Hidden in reply to Kaarina

me to

Hidden
Hidden in reply to Kaarina

me to

harecatcher
harecatcher in reply to Kaarina

me too

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

Kaarina
KaarinaAdministrator in reply to Tpebop

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

Hidden
Hidden in reply to Kaarina

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

Hidden
Hidden in reply to Kaarina

I agree

gertlushbird
gertlushbird in reply to Tpebop

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.

Hidden
Hidden

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.

Hidden
Hidden

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!!!!!!

Hidden
Hidden in reply to Hidden

me too

Hidden
Hidden in reply to Hidden

totally agree

Hidden
Hidden in reply to Hidden

me to

harecatcher
harecatcher in reply to Hidden

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!

Hidden
Hidden in reply to Rish

Me Too

Hidden
Hidden in reply to Rish

me to

Hidden
Hidden

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.

Hidden
Hidden in reply to Hidden

me to

Hidden
Hidden

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)

nightdancer
nightdancer in reply to Hidden

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.

Hidden
Hidden in reply to nightdancer

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

Hidden
Hidden in reply to Hidden

I agree

Hidden
Hidden in reply to Hidden

I agree

Kaarina
KaarinaAdministrator

Hi Gypsy :)

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

Kaarina :)

Hidden
Hidden in reply to 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.

Hidden
Hidden in reply to nightdancer

totally agree

Hidden
Hidden in reply to Hidden

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!

Me too.

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