STANDARD ANSWER

[Phogan]

Does anybody have a standard answer to this particular statement?

When speaking to a new acquaintance for the first time, the topic of health (or lack thereof), often rears it's ugly head.

Then you happen to mention that you suffer from chronic RLS .... with their reply been something along the lines of, 'Oh yeah, I have that too, but I just put up with it for a while and eventually it goes away'.

It's about this time that it eventually, (but not surprisingly), dawns on me that they are totally clueless and completely uneducated with having absolutely no thorough understanding of the torture that we, as chronic RLS suffererers,

are forced to deal with, thru no fault of our own, on a daily basis.

I have been seriously trying to figure out what the appropriate reply would be, but I have come up empty.

I am afraid that anything I was to say in reply could seriously come across as being extremely pompous and/or arrogant.

I am assuming that most of you guys have been presented with this particular circumstance as well. Your ideas and comments would be greatly appreciated.

Thank you

[MumofSam]

I’d ask them what their symptoms were. You’d be amazed how many people think they have RLS when they don’t. If they do, I’d just tell them how lucky they are that their symptoms go away by themselves, but unfortunately you and many other sufferers are left struggling with lack of sleep and the ability to just sit and relax. Tell them that sadly the condition typically gets worse the older you get, and say you hope that theirs doesn’t get worse or they’ll find out first hand what life is like for so many sufferers.

[Phogan in reply to MumofSam]

Yep ya spot on to what I've been saying

[Hidden]

I wouldn’t mention the RLS at all because you will just get angry inside when the other person doesn’t understand fully, you will dwell on it (or, at least, I would), and that would have a negative impact on how you work.

[Phogan in reply to Hidden]

Hi Jess .... I have decided on several occasions I have just taken the easy way out

and say that I have a form of Parkinson's.

[Hidden in reply to Phogan]

Yeah, ok. At least that is a condition people are more familar with. Isn’t that interesting, though?.... People tend to know the term Parkinsons but not RLS.

[LotteM]

Good issue paddy! Recently I have adopted the approach to say I have a chronic and progressive neurological disorder with a profound impact on my sleep and thereby - in my case - on my energy level. Usually that stops people in their tracks. And those that do ask inquisitve questions appear to be interested in learning what it is really like rather than learning the name and then dismiss ‘the whole thing’.

[Phogan in reply to LotteM]

OMG what a mouthful. I doubt that I could even pronounce that. But great come back thanks

[LotteM in reply to Phogan]

Sorry about that. I am sure you can find a wording that says the same thing but suits you better. It takes me usually three or more phrases, not the long and complex one I wrote ☺️. And in Dutch. But only a few people out there in Oz would understand you then. 🙃

[Hidden in reply to LotteM]

I like that response you have too. I have never found a decent answer. i just say i have horrible restless leg syndrome, it disrupts sleep and makes you feel exhausted. i always hate the sort of competitive 'who has the worst condition to deal with' sort of conversation as some folk just always want to be the worst and receive the most sympathy. i don't want sympathy, i just want it to go away! so i often just say nothing or just a brief comment. the only folk who really understand are fellow sufferers or close family who see it at close quarters. even then they can't really tune in when you start fidgeting though my daughter is dreading having inherited - so far no sign

[M_argi]

Hi, new here but what youre asking caught my eye, because I too get a little annoyed around the whole "so what have you got" scenario that's sprung on me in the supermarket from time to time , i used to get flustered and trip over my tongue , and always be left with the sense that the answer I gave wasn't fully understood or dismissed , as I grew confident ,i changed my answers , weighing up true interest from nosyness and now answer accordingly , for the nosy folk I had even rehearsed the attitude 😁to go with the answer ... so they ask "can you explain what it is exactly " to which I reply , yeah sure , let's grab a coffee I have a couple of hours spare "and they run , they can't get away fast enough .. I appreciate true concern of course.

[Hidden in reply to M_argi]

Love your answer!!!

BTW....welcome!

[M_argi in reply to Hidden]

Hi and thank you , good to find people that truly understand x

[Narcis]

Perhaps an amswer is that we have an illness called Willis-Ekbom which is a serious neurological disorder. No mention to RLS

[LoisTonya]

Hi Phogan,

I say “ I have Willis Ekbom disease. It causes restless legs which get worse as the day progresses so I can only sit down in the morning.

[Phogan in reply to LoisTonya]

Ahh good one

[Lash65 in reply to LoisTonya]

Never heard of Willis Ekbom disease. Yeah I imagine that would shut most people up.

[Graham3196]

Don't let others worry you. Just say you have a problem sleeping if you have to say anything. They will assume you take ten minutes to fall asleep and forget all about it.

Your biggger problem is explaining to your employer and you need to get a certificate from your doctor explaining that you're sleepy during the day because you have a serious medical problem.

Good Luck

Graham

[Phogan in reply to Graham3196]

Oh thank you so much for your concern, but I have been unable to work because of RLS since 2002. I manage to exist on a disability support pension.

[Hidden in reply to Graham3196]

It's hard not to be bothered by what others say though unless you have a very thick skin. I was on holiday a couple of years ago with a group of folk where of course it is highlighted how little energy you have compared to most others. Someone who is a good friend decided she should spend the day with me rather than the more active ones. I would have been happy on my own. After a walk I wanted to sit down for ages and would have slept if I could. She said 'I didn't realise you were so lazy! .......... oh how I wish I had the energy of others. I tried not to feel hurt!

[Lash65]

RLS has the same image problem as CFS. It sounds so benign. If you tell people you have Chronic Fatigue Syndrome, they might say something maddening as "Everybody gets tired." Grrrr. Unless you really have it, you have no idea of the seriousness of it.

As for what to say, I don't know. Whenever I get that kind of response I usually stop talking about it because it's too involved to explain. I've been maligned for so many years by even doctors that it just isn't worth my energy anymore. Know what I mean?

[jvanw918]

Yes, 1000 times yes. Honestly I can’t blame others when I almost feel this way myself - how is this so debilitating when it is stupid restless leg?? I think people are trying to help and I think it’s a common issue with any illness. I have a friend who during cancer treatments would get the ‘oh my (insert family member) did this and now they are cured.’ I don’t often bring it up for this reason but it’s hard to ask for help when you need it if you can’t explain why you even need it.

[Hidden in reply to jvanw918]

I have a very hoarse voice which on some days is just a whisper. My voice can't be captured on any automated phone system and I have a good friend who helps me with important calls where leaving a message might be required. Anyway, when a stranger hears my voice (grocery store, whatever) they often say something like "Oh, I know just how you feel I had the flu last month. I guess they are trying to be nice and think I have a cold. I don't . My voice is this way from 8 weeks of daily radiation from larynx cancer in 1984. My voice was pretty normal,though husky, for many years, but as I've gotten older my vocal cords are not as strong. I know they mean well but it gets old and some days it makes me grumpy. I now just say, "No. You DON'T know how I feel." They usually don't take the conversation any further. I have learned something from this experience over time that I never gave any thought to before. And that is I no longer draw attention to by mentioning someone's disability unless they mention it first. I no longer assume I know what someone's illness is about. I guess you can tell this is still a sticking point for me. Thanks for listening. irina1975

[jvanw918 in reply to Hidden]

The good news is you know how it feels to be on the receiving end of such rhetoric and can be one less person in the universe doing it! I really think most people just don’t know what to say. I have been known to lose it and snap back too. It’s hard to be patient with people when you’re already at the end of your tether as it is.

[Hidden in reply to jvanw918]

You're right. And I think there has been a lesson here the Universe is trying to teach me. (I can be a stubborn learner!LOL) I've always had strong opinions and not always been shy about expressing them. A wise friend told me years ago when I was very angry about my voice, "Maybe the message here for you is that God gave you 2 ears and one mouth." A very good point but I still haven't completely learned that everything that pops into my brain doesn't have to come out of my mouth!!! And your point re people don't always know what to say is true. We all say inane things at times-including me. One of my favorites is when viewing a body in the funeral home a frequent comment is "She looks like she's sleeping!" No, she doesn't.

[TheDoDahMan]

Perhaps it's best to say we have a "condition" that only allows us to get x hours of sleep most days, and that has been running us ragged for the past x years.

[Kayakcarole]

I have heard of some women having RLS symptoms during pregnancy that do go away. Also, my husband had it for a short time after a knee replacement and said those helpful words: “ If this is what you have honey, it’s horrible!” Amen.

[Phogan in reply to Kayakcarole]

Before I was diagnosed with RLS at age 48, I seriously thought I was the only person in the world suffering from this torturous affliction. I almost went insane with my first pregnancy, the symptoms doubled in intensity.

Then BINGO .... the second she was born it disappeared totally 100% gone. To say I almost died and went to heaven would be small change. 5 years of total bliss until I fell pregnant again. And it returned, again with double intensity. As soon as my son was born it was gone. I weaned my son after 18 months and again it returned.

This time I could not handle having no sleep, I had a husband and two children to look after plus two step kids, I HAD to sleep.

I went to a doctor and I did not tell her any of the symptoms of restless legs (as it turned out, in hindsight I should have. She was the one doctor who would've understood). I just told her I had bad insomnia. and that started my 30 years of sleeping pills.

My best friend has just finished her first pregnancy. She had no idea what RLS was all about only from what I have told her. BUT, she found out with her pregnancy. ('And you've had this since childhood .... how on earth are you still alive')

Now her baby is born so has the restless legs.

[Kayakcarole in reply to Phogan]

I also had the rls double in intensity while pregnant. During My first pregnancy in the late 70’s it was so terrible that I stood up in a corner doing word search puzzles late into the night until I almost fell asleep on my feet before going to bed. I also took high amounts of folic acid because I read it might help. But since both my parents had rls I knew what it was. I am finally finding relief with Low Dose Naltrexone after weaning off Pramipexole.

[Phogan in reply to Kayakcarole]

Amen

[jvanw918 in reply to Phogan]

Same. Exactly actually - I have two step kids full time and two of my own. The third trimester was total hell with both pregnancies. It really didn’t go away ever though it wasn’t as intense after they were born. I honestly wanted drugs during birth for no other reason than to get some relief from my legs! Actual birth was a walk in the park compared to the non stop pain and sleeplessness. My youngest is 3 now and here I am replying to this at 5 am after not sleeping all night. Mine as familial too so i’m screwed.

[Phogan in reply to jvanw918]

I have heard a few reasons as to why our symptoms double in intensity while pregnant, but does anybody actually know why?

[Hidden in reply to Kayakcarole]

Hi K, Your husband is a KEEPER! Congratulations.

[M_argi]

I think I may have overstepped myself in a recent answer to a non sympathetic shit head (excuse the language) who was incessantly going on on about everyone being a 'bit' tired every now n then... when asking me what was 'wrong' with me .

I said "oh I have an illness that drives me to the bitter end ,but there isn't an end , a bit like your 'ignorance' thst never seems to end either !! " 😜😜

I was about to add that it must be quite difficult being so ignorant ,understanding people... but they walked away.

[Hidden in reply to M_argi]

I love it. Most of the time I try to be nice but sometimes we just have to let people know when they have overstepped our boundaries. I went through a time where I gained a lot of weight and someone ( I don't think they were trying to be helpful) said very bluntly "You're fat." My response was "You're right. But I can lose the weight faster than you can develop social skills." BTW I've lost the weight and they are still going around offending people. Not proud of this ability but sarcastic 'comebacks' come easily to me. The hard part is not always letting them pop out of my mouth. Age helps!

[Phogan in reply to Hidden]

Proud of you

[Hidden in reply to Phogan]

Thanks, P. LOL.

[Parminter]

Say that you have Willis-Ekbom Disease, and that it is a progressive neurological disorder that interferes profoundly with sleep, and therefore with all aspects of daily life, to the point where many sufferers have committed suicide, Then stop talking.