Fustrated: When I try say rls to people... - Restless Legs Syn...

Restless Legs Syndrome

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larrylamb1973 profile image
21 Replies

When I try say rls to people they don't understand think u putting it on but I'm not think I a in my head does any one else have that too

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larrylamb1973 profile image
larrylamb1973
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21 Replies
Kaarina profile image
KaarinaAdministrator

Hi larrylamb,

Yes, you are not alone with that. It happens all too readily with quite a few other conditions too when there is nothing visible to show what is wrong. If you do not have your leg in plaster or a bandage on your wrist or using crutches, something they can see, people often do not seem to get it.

When it next happens, let these people know there is an RLS website and invite them to go and read up about it. rls-uk.org and that there is a very active RLS discussion forum as well and it is definitely not in your head..

Try not let these people get you down. :)

Joolsg profile image
Joolsg

Join the club larrylamb! If I had a pound for every person ( including my GP!!!!!) who says ""Yes, I get fidgety legs too" I'd be rich.

No one can quite understand what RLS is unless they have it.

Jools

in reply to Joolsg

Equating fidgety legs with RLS is like comparing a scratch to a laceration from a machete. Both are cuts in the skin but the similarity stops there!

It is quite insulting and frustrating that!

Pippins2 profile image
Pippins2

Yes that's usual I am afraid. When people say to me "oh I think I have that? I always ask "do you have to move your legs when it happens ?

If they hesitate and have to think about it I say "no you don't have restless legs lol

Pippins2 x

Rangers9 profile image
Rangers9

I am in total agreement with what you think about ppls thoughts they can't see it so they can't understand it no way to get ppl to understand the effects of the RLS Larrylamb I hope you are feeling better

Hi Larrylamb, if you look up the posts of Pippins2 you will find a wonderful description of RLS that she wrote awhile ago. It was a full and moving account of what RLS is to us. I printed it out and have shown it to people when asked about RLS.

Hopefully someone can provide a link to that post please, as I don't know how to.

Kaarina profile image
KaarinaAdministrator in reply to

Hi booklover,

Was this the posting by Pippins2?

healthunlocked.com/rlsuk/po...

in reply to Kaarina

Hi Kaarina, yes that was the one, I thought it was so emotive and informative.

I've shown the printout to a few people, I think it's helped them to at least have a little understanding of how bad RLS can be. I have a pretty understanding GP thank goodness, who at least is very open to my requests for various meds to try, when she read it she said "good grief I had no idea that it could be like that", she now has a copy of it in her medical book.

I appreciate your taking the time to find this posting, thanks for finding it. I had a quick look but was trying to cook a meal at the same time and my ability to multi-task is sadly waning !

cheers, Geri

Pippins2 profile image
Pippins2 in reply to

Oh my goodness i didnt know that your GP had a copy.I am pleased some good will come of it! Pipps x

Kaarina profile image
KaarinaAdministrator in reply to

LOL Know the feeling well, Geri, I am not always so good at multi-tasking these days either, but I was not cooking a meal at the same time as locating Pippins posting. :)

Graham3196 profile image
Graham3196

Be relaxed about it Larrylamb. Its hard for them to imagine what its like and they really mean no harm. However its important for your doctor and your boss to accept that you have a serious health problem. Good luck

Kaarina profile image
KaarinaAdministrator in reply to Graham3196

Hi Graham, not only larrylamb's doctor and boss, but above all, her family need to understand and accept that RLS can be a very debilitating condition. "Be relaxed about it" is easier said than done. :)

larrylamb1973 profile image
larrylamb1973 in reply to Kaarina

My family friends boyfriend and yes I'm female lol don't understand think I'm putting it on

Kaarina profile image
KaarinaAdministrator in reply to larrylamb1973

Hi larrylamb, good to hear from you. :) I have amended my posting now, from "him" to "her". ;)

in reply to Graham3196

You better watch yourself fella, this is a military zone. Just kidding ;)

Seriously though, there's been about two dozens replies to Ms. Lamb and I didn't see a single mention of ferrous bisglycinate or FODMAP. What's up with that?

in reply to

Speaking to Graham.

larrylamb1973 profile image
larrylamb1973 in reply to

Larry lamb female

in reply to larrylamb1973

Yes, I know, Howdy Ms. Lamb. Please consider taking ferrous bisglycinate ( I suggest Solgar's Gentle Iron 25mg from Amazon) on an EMPTY stomach about an hour before bed. It should be the first thing you take in the evening. If you are like many on here you will get immediate relief for one night and not need to take a pain med. You will also likely be able to reduce the other drugs you are taking. Greatly reduce them. If you like it after a night or two then please let your doctor know what you are doing so that he can monitor your iron stores. I assume you do not have an iron overload disorder such as hemochromatosis. Anyways, even if you do not get immediate relief the iron may help in the long run and is worth a trial run of several weeks with your doctor's permission. You see, we with RLS all have anemic brains, not really bodies. Our brains just can't store iron. By taking a highly bioavailable form of iron at night you are giving your brain some much needed iron when it needs it the most. By day there seems to be enough iron in our bloodstream such that we don't get symptoms but at night that iron level drops and we get symptoms.

Please also put Bganim1947 in the search box here in the upper right hand corner and read all of the related posts. Also put GillRLS in the search box and look for her post entitled "Amazing." She uses the word amazing with regard to the ferrous bisglycinate.

in reply to

Also please be aware that the following substances can make RLS much worse than it has to be: melatonin, antacids, antihistamines, antidepressants, HRT, the pill, metformin, statins, warfarin, calcium channel blockers. It might be easier just to tell us what meds (besides those for RLS) that you are on. Including vitamin supplements?

larrylamb1973 profile image
larrylamb1973 in reply to

Normal tablets that's it

Retren profile image
Retren

16AprilLarry Lamb 1973have had it in my head after eating bread made with bleached flour.I hope never to again.someone mentioned having addictive compulsions with her medication.Mirapex is a definite problem for this but the one that was mentioned it is possible for anything for different people other than listed side effects.

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