this should be fun

[gypsy49]

not sure what to make of this ..... Ministers to ask are yoou getting enough sleep bbc.co.uk/news/health-48972243

[Hidden]

Seen it on the news. We should be having 7/8 hrs sleep at night because of health issues which can arise from less sleep at night

Which means more visits to our GP ' s. Putting more strain on our NHS. My first reaction is. 🤣🤣🤣. My second reaction is 😪😪😪. If someone out there can ensure that they know of a fail safe way for people with RLS to sleep for 7/8hrs we would all love to know.

[gypsy49 in reply to Hidden]

your reaction was the same as mine lol and thinking the same putting more strain on the NHS we all know they're trying to kill it off , just been reading about it on the dailymail on line sounds like the government going to issue a guideline on how to sleep should be interesting lol reading some of the comments on there interesting .... I've left a comment but don't think it went up it does that sometimes . here you go see for yourself . dailymail.co.uk/news/articl...

[gypsy49 in reply to Hidden]

my comment on it has gone on

[Hidden]

I only skimmed this. I will not read it because articles like this cause me undue stress. They do not take into account those with RLS and other sleep disorders.

[funnyfennel in reply to Hidden]

I agree. I cannot watch all these sleep programmes/articles. As a dear friend remarked to me " You mean fidgeting !!" . No-one can believe the torment and limitations in our lives when we suffer from RLS. All the suggestions of pills and advice not to stress! Unfortunately when at the end of my tether through lack of sleep I sometimes snap.....doesn't help with my social life ! A

[Hidden in reply to funnyfennel]

They sure can’t! I’ve given up trying to explain to people what it’s like. Words don’t give justice to what it’s like.

[gypsy49 in reply to Hidden]

same here i gave up trying to explain to folk what RLS is because there's no words that'd help anyone understand what it is then they just think it affect the legs ggrrr

[Dogdoo in reply to gypsy49]

Same!

I try to explain to my mother.

She tells me i need to relax and it must be nerves.

Like, no, you do not understand.

I would literally amputate my legs tomorrow if it meant a total and complete cure.

[Hidden in reply to Dogdoo]

I've thought amputation might be a way to go but imagine the horror if you got phantom RLS!!! That would push me over the edge - especially if I got rid of my legs!

[Hidden in reply to Hidden]

OMG , augmentation, have to have my arms amputated too - at the neck!

[Dogdoo in reply to Hidden]

Same!

And you just know it would be 100% worse and we couldn't get up and pace and stretch.

I feel the rls would permeate a coma. Or death even. Creamation for me, legs first, just to be safe.Lol

[gypsy49 in reply to funnyfennel]

you ever got to that zone where you've not slept for day not a wink and you feel your not n your body you hear yourself talking to someone but not really there and come out with stuff that doesn't make any sense whats so ever the most awful feeling ever you have no control of your mind nor body .

[sweetiepye in reply to gypsy49]

This happens to me, it's so frustrating and embarrassing. I've never seen it mentioned before . I probably was so sleep deprived that I didn't notice it. Thank you for posting. Misery loves company . Pam

[gypsy49 in reply to sweetiepye]

I never notice just get told by friends wondering what the heck im talking about but do know the feeling it makes you feel which isn't nice being sleep deprived is only something anyone can understand when it happens to them no one else can explain it the way we do .

[Hidden in reply to gypsy49]

I often find myself in a conversation and what is going on in my head is not reflecting what is being talked about - conversation about a football game and in my head I am thinking of a farm or some other unrelated thing.

There is a stage I get to at times where it feels a bit like being stoned and there is what I can only describe as a floaty heaviness and insulation from the world. It tips over into a nasty wired feeling but it is lovely while it lasts.

[gypsy49 in reply to Hidden]

That's why i posted it because they don't take into account those with sleep disorders they always look into the easy options and cop outs .

[Hidden in reply to gypsy49]

Yep, I totally get it. Thanks for posting!

How are you doing, btw? Are you the one who I posted those pictures of the geyser to?

[gypsy49 in reply to Hidden]

I'm doing ok just not slept for two nights in a row that's twice this week Hows yourself?. think you mentioned pictures but nowt came up .

[Hidden in reply to gypsy49]

Oh, I’m so sorry! I hope it gets better for you! Just remember: this syndrome goes through waves (for me anyway). If you use the analogy of a tide (tide in=bad RLS, tide out=calmer RLS), the tide has to go out again eventually.

Other than a couple nights ago when I screamed at my husband to cut my unruly right arm off, I’m having a good stretch. My ferritin level is the highest it’s ever been at 94, so I have a strong suspicion that that’s why.

I posted those pictures on the forum in direct response to your post about an assessment you had. My motive in doing so was to give you an analogy of RLS that you could use to help get through to these people. I can bring up those posts again if you’d like.

I’m just about to leave for the day, but will post them this evening if you’d like. Just let me know.🙂

[gypsy49 in reply to Hidden]

Blimmy my ferritin level was 2 it's now 22 and my neuro says that's normal thankfully i've no one here to snap at lol although wish i did have someone even if it's to talk with but life is such....

ohhhhhh i didn't seem it on my last post don't know why but i remember i did look so aye you could bring it up again hopefully i'll see this time lol ,

it's gone 2am and im still awake i can't remember now if this is the 2nd night or the 3rd night of no sleep ggrr but i am hopeful i'll get some at some point .

Hope you got some sleep x

[Hidden in reply to gypsy49]

Well, at least it’s going in the right direction!🙂

Hey, snap all you want! That’s what we’re here for!

I’ll find those two posts for you (my pictures are in 2 different posts that will appear on the live feed).

[Hidden in reply to gypsy49]

Hi,

I’m just wondering if you were able to see my two pictures? They are on the main board, but, since it’s live, posts go down really quickly. If you haven’t seen them yet, you can either scroll down the board or click on my username to access my profile and see them there. The posts are easy to spot since your name is in the title.🙂

Take care,

[Jelbea in reply to Hidden]

Dear Sails. Sorry to hear these reports upset you. They used to upset me but now they just make me mad!! Try not to worry. I am 77 and since my thirties I have had so little sleep - often weeks a a time with only 2/3 hours and often no sleep at all. These reports always say your life will be shorter. As I said I’m 77 and still going. It’s on a par with “if you do not eat this or drink that or walk 10,000 steps daily, etc you are doomed. I think Manerva might agree with me on this. So just ignore the silly nonsense!!!! Love sent your way

[Hidden in reply to Jelbea]

Thanks for your kind words! It’s fine; I’m not letting it get to me.

Another person in her 70s?! Yikes! I’m surrounded by them! (Please don’t take this the wrong way; it’s meant to be lighthearted. I’ve actually always gotten along better with older people than with people my own age (I’m 38)! )

[Parminter in reply to Hidden]

I agree, Sails.

My own worst memory of RLS-Stress from an external source was when South Africa's most famous public medical man, a renowned Professor from our most prestigious medical school, was asked a question about Restless Legs Syndrome on a respected public television health show.

Through his laughter he answered that it did not exist, and that it was just neurosis and hypochondria. Then he went on laughing, he nearly fell off his chair.

I remember feeling that the walls were closing in on me, and that there would never, ever, be any help forthcoming. What hope could there be from a local GP when a famous Professor said I was just a ludicrous neurotic. I can still see the TV screen in my mind.

We get a lot of this, don't we?

But it did demonstrate to me how the diminishing of our condition gets handed down through medical schools, from one Professor to the next. Few medical men do original research, and few keep up to date through extensive reading. So ignorance is handed down through medical DNA.

But on the bright side, after decades of suffering, it was one of the factors that convinced me that we had to do it for ourselves to fill all the yawning gaps in medical education.

[Hidden in reply to Parminter]

That is AWFUL!!!! I don’t know what’s wrong with people who can say that. Pure ignorance, I guess. No, you know what it is: the fear of the unknown. I’m so sorry you had to witness that.

Here’s one of my stresses from an external source: I stopped treatment with my psychiatrist some months ago. A week after stopping I received his “summary of treatment” in the mail. I don’t know if you remember, but under my old username I described an arm attack I had while in his office and how that was treated. He refers to that attack in his summary. Although it was interesting to read how an outsider views an episode of RLS, he includes what we had been talking about just prior to that attack. Although he could be right in his assessment that it was the stressful topic which set my arm off, he doesn’t know that for sure (Heck, even I don’t know that for sure!). Yes, we had been talking about something stressful right before, but I’d done that with him before without an episode. He implies that stress (and only stress) is what did it. If that’s true, I should’ve had an attack after reading that — dang, what’s wrong with my limbs, selective stress?? The only thing I could think of to calm me down was to say to myself, “he figured it out. To make him feel good, he ‘closed’ the case. Never mind that it might be more complicated than that; he was presented with a problem and found a solution that would satisfy him.”

I wonder when our suffering will ever be taken seriously?

[Parminter in reply to Hidden]

That is even more awful, Sails. And to have it in writing that you are even more of a Nut Job!

Horrid. I'm afraid it is part of why I mistrust psychiatrists so much.

You're the nail, they are the hammer, and they are stuffed with very blinkered knowledge which renders them quite unable to imagine anything else. So you get squeezed willy-nilly into the current boxes.

It's not in the Book, Babes, it's not in the Book!

Crikeycrikeycrikey.

[Hidden in reply to Parminter]

You are so right. It’s not in the books! Also, I was a nail that didn’t fit. We are all nails that don’t fit into the healthcare system.

[Hidden in reply to Hidden]

I tend to think it's the other way round. It's not me that doesn't fit into the healthcare system, it's the healthcare system that doesn't fit me in.

[Hidden in reply to Hidden]

That’s even better! Thanks, Manerva!🙂

[Hidden]

Great! thanks for posting this - a good opportunity to rant and rave about politicians!

Ministers, especially ones of a certain political ideiology will, I believe, make us more and more responsible for our own health. We MUST eat healthy food, we MUST sleep 7 hours a night.

In line with this ideology, It is our patriotic duty to do so!

If you can't afford to eat healthy food or manage 7 hours a night, you should feel guilty for placing an unnecessary burden on our NHS. In fact, as Samuel Butler wrote in his book "Erewhon" (1872), people who allow themselves to become ill should be put in prison.

This will probably become even more so when we leave the European Union and become a part of the United States.

It was only a little rant.

[Pam34 in reply to Hidden]

But all true unfortunately.

[gypsy49 in reply to Hidden]

They know nothing about sleep disorders did you notice there was no mention of sleep disorders seems to be pointing at folk not looking after themselves or rather the Gov just plucking things out the air as usual and putting more strain on our NHS (we all know there're trying to get rid of NHS and sell to American companies ) as to the MUST sleep 7hr many folk dont get that specially if they're working a couple hours from their workplace or work and have very young children that don't sleep a full night but again no mention of sleep disorders lol oh gawd we'd be put in prison for life if it followed what Erewhon said lol mind youwe'd get 3 hot meals a day and no charge for heating haha!

I get what your saying on th last part not good with both them standing in for PM sadly is worrying both clowns .

[Dogdoo]

I'm sick of doctors not prescribing meds that are effective because of addiction fears.

I'm seeing a neurologist this month and want to ask for methadone.

I was on pain management previously and my rls was in complete remission.

Since going off 8 months ago, its the worst ever.

I know my dr will say no. I live un the u.s. where we have an 'opiate crisis'.

Benzos help with sleep. Or ambien' etc.

Nope. You might get addicted.

Instead we're allowed to suffee immensely. Depression, anxiey, lost work, lost sleep, lost sanity. That's okay though.

[Carlief in reply to Dogdoo]

Watch Root Cause documentary. It’s caused by the dental work done on your teeth!! I’m going next week get shit taken out bye rls!!

[Hidden]

Am I the only one to see this as good? Its only advice on how much sleep we roughly need, there is no way they can demand we get 8 hours a night, although if they could enforce it I would be delighted.

Maybe when we are seen at the GP and we have had maybe 8 hours sleep in a week they can be more understanding and might work harder at a solution. Also it can highlight to the public at large how much we are suffering with sleep deprivation compared to them and they might have a little more compassion and understanding of the damaging effects of our condition.

[Hidden in reply to Hidden]

You're right, that it could potentially improve things for some people. I'm just dubious about the motivation behind it. It is primarily about saving money, which isn't necessarily a bad thing as long as it's cost saving not cost cutting.

There are things, I'm aware of, that generally the public don't get to know which demonstrate that the healthcare organisations operationalising such guidelines can be overzealous.

E.g. a few years ago I discovered that a certain medication was blacklisted, (GPs are not allowed to prescribe it) because it was judged "no more effective" than the alternatives. It is actually more effective in some respects and the evidence they based this decision on was frankly crap. They were quite open about the fact that it was significantly more expensive than the alternatives.

More controversial, (also in the interests of cost saving), the same medicines management group placed restrictions on infertility treatment.

I didn't think that either of these two cases had any effect on health professionals compassion.

It will be interesting to see what the government intend to do to enable people to sleep better, if anything, (even generally, never mind in relation to RLS). The cost of that might he greater than the cost to the NHS due to the consequences of poor sleep.

Successive governments, probably since 1948, have pledged to tackle health inequalities which largely derive from economic inequalities and yet it gets worse. Possibly because some of those in government are possibly part of the cause of inequalities.

Unfortunately, although I'd like to, you can't ultimately separate health issues from political issues. More unfortunately, neither's going to improve for the"common person" as long as country's continue to become increasingly right wing and thanks to misguided interpretations of "democracy" the common people appear to be deluded into voting for their own worsening demise.

That was a longer rant. Sorry.

[Sara_2611]

I saw a programme about that & they showed a woman who said she daren't sleep at night because if she does she wakes up screaming because she claims she can see a bloke she describes as being in Victorian black clothing at the foot of her bed -thats really weird

I need my sleep & grateful that when Im not ill I sleep well because I have epilepsy & need at least 8 hours kip

[Battleground]

I find the most problem with the people that are supposed to love and believe in you that don't believe that you can actually go for days and days without sleep. You still have to function and make the best of it but don't feel supported.