THERE HAS TO BE A REASON

I am not a religious person . I was born, raised and educated a Roman Catholic. Therefore I consider myself to be an extremely spiritual person and believe that there just has to be a reason why the Powers-To-Be from above have given me this hideous disease for a reason. I have decided it's educational. I am going to visit schools where there has to be children who are suffering. I will tell my story and advice that if they are experiencing similar sensations that they are not 'growing pains' or 'attention seeking' or not 'crying over spilt milk' and they are not 'whinging'.

They could be experiencing Restless Legs and to go home and request their folks research RLS on the net and to request their doctor to do same.

I understand the doctors are more acceptable and have more understanding of RLS than in my day, but there are also some that still feel it not to be a serious affliction. I to do something.

29 Replies

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  • I'll answer before raffs gets in!!!

    Who knows why rls is on the Earth? From your perspective it just may be proof positive that the Supreme Being either has a capricious nature or a very nasty one- or even that he has gone off on his holidays and left the other fellow in charge.

    Indeed - who knows???

    I'm agnostic on the question of God--- but when I die and he is there to meet me -- Then I will have quite a few pertinent questions to ask him. They are well known philosophical questions which have been debated for centuries - but never satisfactorily answered.

    Tashi!

  • What's agnostic?

  • One who doesn't believe in God = Agnostic.

  • Please let me rephrase my answer. (Darn, I knew I should have looked it up before spouting off the most simplistic of terms.) Per Webster's II Dictionary "One who disclaims any knowledge of God but does not deny the possibility of God's existence.) Whew...

  • Thanks!😈😇

  • An atheist is someone who doesn't believe in God, an agnostic is one who doesn't know. I'm agnostic with strong atheistic leanings. I went to a Roman Catholic convent school during the war. That education drove me to believe that if there is a God he is not "all merciful AND all powerful"

  • Yes, either he (or it or she or whatever) is not all powerful or not all good (from my perception).

  • Agreed

  • I am Jewish and also do not believe that God is all-merciful. My husband suffered thru illness after illness (heart, stroke, anoxic brain injury, two different cancers) before he died at 68 and I suffered right along with him during that entire multi year journey. After he died I began to have RLS myself out of the blue. Also cervical spine issues. I don't see anything merciful about all this.....

    Dealing with the RLS by myself has been extremely hard and I'm glad I have all of you to vent to so I don't feel so alone going through all this.

  • Can ya send the answers back down for us, so we know before we get up there, thats if i get to go up and not down. :P

  • IF there is a God he/she/they/it and me have some talking to do. Considering if there is a God and I am his/her/its/their creation I must be in and of God so I may need to have a sit down with myself then if perspective grants me the wisdom

    I used to question why me until I realised why not? We define ourselves in adversary I believe, and we all know how adverse things can be with chronic ill health. If you make your suffering for a reason it will be easier to bare. I was brought up with the every bang, knock and emotional devastation being met with the same phrase - "Offer it up!"(meaning offer your sufferings to God as a way of suffering for the greater good) Could never see that point and although see it now I don't subscribe so I look at my suffering as learning that way I am offering it up to wisdom :)

  • PS: That is only my opinion at that time and may not necessarily be what I believe in 5 minutes time :)

  • Very Nobel of you and good luck in your quest, although I can't help thinking that schools today prefer the scientific approach.

    Today is also your day, we must all do what it takes.

  • Atheist denies the existence of God- an untenable position.

    Agnostic- just doesn't know- is willing to believe real evidence- not Tooth fairy stuff.

    😎

  • I knew sooner or later someone was going to pick on the tooth fairy.

    I commend Phogan for being willing to look beyond his/her symptoms and the suffering it brings to ask the important question -- what can I learn from it, and why has it manifested in my life? Also that Phogan was willing to take this affliction an even greater step further to speak to others, specifically children, about this maddening condition that few people, including the medical profession know anything about.

    Most of us have suffered in silence through much of our lives. Everyone who takes the time to thoughtfully speak up, not to complain but explain to others, helps to unveil the ignorance and denial that surrounds this widespread condition.

    My only concern is that the backside of informing those who suffer to seek help will lead them to doctors, who will prescribe the only medications presently available like Ropinerole, which will help for a while, but eventually lead them into the horrendous suffering augmentation brings, with little help from the medical community to remedy it and absolutely no alternative medications available at present to truly help people manage RLS throughout their lifetimes.

    Isn't that the real problem? The research has not been adaquate enough to provide the pathway needed to develop a pharmaceutical treatment that can provide safe, long-term relief. We need to do both: Educate the public, the medical and pharmaceutical communities, as well as demand a new form of safe medication. Until that happens, we are all stuck suffering with no real long-term relief in sight. That's what really keeps me up at night!

  • Rls is a syndrome- and has many facets.

    There is no one answer to fit all.

    My concern would be that people would be inclined to go straight to the pharmaceutical answers before looking at more obvious routes.

    The very first one is to look at triggers- especially with children- raising agents-(biscuits etc) was a major trigger for my young self.

    Also all the inappropriate medications that are routinely prescribed for common childish ailments- Phenergan?? Calpol??

    Colourings in drinks and even childrens meds is a huge trigger situation.

    Toothpaste- check out SLS.

    Now you've really got me going and I've hardly started.

    Grrrrrrrrrr😈👹👹👹👹

  • Hi Madlegs,

    Had a good few days whilst on holiday ( my daughter reckons it is all the walking we did) but now I'm home and making sure I'm walking, my legs are dreadful.

    I've opened a new toothpaste. That would not have occurred to me without your post. I'll check it out.

  • Maybe, if enough people join (only £15) more funding would be available for research!

    There must be thousands or even millions of sufferers worldwide? Surely the power of many can move this forward!

    I've joined in the uk today.

    rls-uk.org/membership/

  • Funding will always be the problem for researching to find a med thats just for RLS. and because we know how everyone reacts differently to the meds we do have available, i doubt they would ever come up with a med that fits us all.

  • I've had this since I was 6 and to be honest I'm glad these chemicals wasn't around then. School children don't need the medication and all the crap it brings until they've finished studying but that's just my opinion. Definitely worth making them aware but do warn them of the downside of taking meds

  • Yes, imagine the scenario of being given pramipexole at the age of 6! I doubt any decent doctor would give it to a child, but the possibility gives me the shivers!

  • NO doctor would put a child on pramipexole or any other of the meds we take. The only med that could be given a child is Gabapentin as that is given to kids who have seizures. Treating little ones is hard and you need a very experienced doctor who knows what they are doing regarding kids.

  • 100% agree. I would hate to imagine children on heavy medication like we are. But one of the most difficult parts of this disease when I was a child (and for that matter, as an adult) was the fact that I thought no-one cared. That I was alone in this fight and had to deal with it in silence. They might receive some understanding instead of abuse from their teachers for not being able to concentrate, not being able to learn (albeit with high IQs). And maybe, when they fall asleep in class, punishment would not be a consequence.

    As lifestyle is now regarded to increase the intensity of RLS and if it could be caught in the very early stages in the untainted bodies of children before the alcohol, cigarettes and drugs got introduced into their system, maybe there could be a positive outcome.

  • I agree with the awareness part but I'm glad I never knew about clonazepam or any other chemicals at a young age. I think the drugs become as bad as the RLS so let's make them aware but encourage special diets and stretching exercises before any meds

  • July24Phogan good for you but to answer your query Why me -The Reverend Peabody of Boston US would have replied why not.Blame genetics blame modern diets it makes no difference you are certainly not alone I thought I was for many years and was astounded when people started to surface not too lon g ago as everyone else thought the same thing.There are probably millions of us all over the world and it is quite intimidating to think that so far there is no one answer to the scourge Take comfort in the fact that as we speak and deal with the condition others are stoiclally facing their days and nights.Enjoy your time with the schools one is always learning from the young.

  • What is the reason for any disease that many suffer from. I am sure there are plenty out there suffering with many diseases and asking..why me. I have had trauma's in my life so...why me.

  • I believe in God, but am, at this time, very angry with Him. I would never end my life, but, mornings like I had yesterday and, I have wished He would just beam me up. Firstly, I am enough of a character, so, I don't need any more. Secondly, I did not ask Him for patience. I know better than that. I am grateful, however, that the pain ends before I leave for the Senior Center. I think that I've just about decided that the joy of eating things containing sugar is just not worth the pain I go through the next day. I have such a short term memory for things like that, but my recent pain may just stop my sugar addiction. I can only hope.

  • Growing pains. I know a child who was suffering growing pains in the legs. After lots of doctors dismissed it as whinging and something children just have to put up with I found a pediatrician who said it was the muscles being too strong for the new bones so the surface of the bone was tearing off and being pulled up into the muscle where it hurt. The little shavings of bone were damaging the muscle. I rack my brain but I cant remember if they had a treatment for it. I think she was so old by the time we had a diagnosis that she was about to grow out of it. She suffered a lot of pain that no-one would help her with.

    So if a doctor tells you "its JUST growing pains" please strike him with a spare flash of lightning and say "Do your homework"

    Graham

  • Hi Phogan, Perusing older posts and this one caught my eye. I was educated in a catholic boarding school, went to catholic college and nursing school and over the years have evolved into what I hopeis a spiritual person. I've taken meaningful concepts form other religions and let most of the catholicism go my the wayside. I call myself a 'recovering catholic' . The most important conclusion for me is that I can talk directly to God without going thru so many of his 'middle-men' here on earth. (Priests, bishops, and other catholic hierarchy. Although I DO LOVE the new Pope Francis. Anyway the point here is that when I have ny rls pain, I slide back into my 'little girl catholic thinking- about hell etc (Lots of catholic guilt surfaces and I get afraid. Anyone else feel this way? My family wasn't catholic and I was a convert. My mother just thought the catholic schools had a good education. They did but they sure left me with a lot of 'baggage' (surfaces when I don't feel well.) Burma

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