To those of you who have had rls
for a very longggggggg time how
has your legs been?
Im sooooooo frightened and
worried about the future of my
legs.
gill
About the Future
About the Future
Hi all
To those of you who have had rls
for a very longggggggg time how
has your legs been?
Im sooooooo frightened and
worried about the future of my
legs.
gill
To those of you who have had rls
for a very longggggggg time how
has your legs been?
Im sooooooo frightened and
worried about the future of my
legs.
gill
Hi gill, How ya doin, kid! Mmmm how's the legs doin? Overall, about the same to perhaps better but more important I have been getting a bit more sleep. However, as I write this the legs are agoin and don't think sleep will come early this day.
Guess it's very easy to think and worry about the future. All kinds of good reasons why we shouldn't but we probably all still do. Still, I try to be as optimistic and as positive as I can, as much as I can, and as often as I can. I try to gain strength from Lynne and many others who hang on to so much life despite the struggle. Lots of those stories here, so lots of hope too. Doesn't mean I'm against whining or letting it all hang out as I think that's all part of what keeps us sane, helps us from falling into the deep abyss, and what makes us human. Hopefully, new meds and treatments will make for a brighter future. In the meantime, let's just hang on to each other. Tight! Tomorrow will be ok gill. Best wishes.
M.
Guess it's very easy to think and worry about the future. All kinds of good reasons why we shouldn't but we probably all still do. Still, I try to be as optimistic and as positive as I can, as much as I can, and as often as I can. I try to gain strength from Lynne and many others who hang on to so much life despite the struggle. Lots of those stories here, so lots of hope too. Doesn't mean I'm against whining or letting it all hang out as I think that's all part of what keeps us sane, helps us from falling into the deep abyss, and what makes us human. Hopefully, new meds and treatments will make for a brighter future. In the meantime, let's just hang on to each other. Tight! Tomorrow will be ok gill. Best wishes.
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
(((((((((Mark)))))))) you heart just speaks so honestly. It's so truthful in so many ways. (sighs)
Gill, I had to grieve about having RLS. Grieve the lack of knowledge, the stigma of medicatioons still gets to me, the trial and error stage where hope seems a fading dream. That feeling that comes over you when people you love, you cared about how they see you, say "oh, but you don't look sick?" Here's you trying to explain, calmly. .............that stuff gets to me, hard some days.
I openly grieved and not only here. I did it publically more than once. I grieved who I thought I wanted badly to be as I aged as a mother, a wife, a daughter, sister, friend,...............human that who lived in a body that did not fight back, when there should be no fight to think of.
I cried for the mother my 2 boys did not get. The sleepy in pain mom was sure to mess so much up, but tried so hard. They are good boys and I think with potential. Good mannered, handome, doing something with a direction. How blessed can that get?
I grieved about the time and the intimacy I lost as a wife. The RLS, the insomnia, the chronic pain, it changes people after awhile without asking if it's ok. Again, what a great guy I have been given a life with that cares and helps. How lucky am I?
Pain and RLS do not define me, unless I believe it comes for a greater good. You doing an article in minor magazine about RLS? It controls my life. But it is what it is in the end.
You morn off and on. You have to remember that our brains have lask of sleep, making it harder to see things together, fitting in a natural way, maybe calmer as well. The world does not look gray when your able to sleep, heal. You can find that joy again, but part of that is choice.
Im old and jaded a bit I supposed, but for me it comes down to two choices:
1. Deal with what you can. Take a break if you need to. Say no to the things that are not helpful. By that, coffee, alcohol, invatations (some, you need to live a real life!)
Now it becomes one of those things in life that just "IS WHAT IT I !"
And as a friend mentioned recently, "be kind to yourself."
You'll finally get mad, totally torked off. Your first reaction will be to fight back. That's healing, and a alot of sleep included.
Your other choice is to give up and not do a thing about it.
I sincerely thing that you fit into the last statement. I believe there might be a fighter in you. That someone that wants to know for sure life can and will go on. It will be ok, Gill, it can.
RLS is a working, constant for many here, livable, doable, when treated proeperly, That may change in time, but trial and errors give us great knowledge and incouragepeople to research for themselves.
It's ok that it seems overwheling, but you get to a point when it's matter of fact with a bit larger impact.
Life is still worth fighting for, the hope and the means are there.
Lynne
Gill, I had to grieve about having RLS. Grieve the lack of knowledge, the stigma of medicatioons still gets to me, the trial and error stage where hope seems a fading dream. That feeling that comes over you when people you love, you cared about how they see you, say "oh, but you don't look sick?" Here's you trying to explain, calmly. .............that stuff gets to me, hard some days.
I openly grieved and not only here. I did it publically more than once. I grieved who I thought I wanted badly to be as I aged as a mother, a wife, a daughter, sister, friend,...............human that who lived in a body that did not fight back, when there should be no fight to think of.
I cried for the mother my 2 boys did not get. The sleepy in pain mom was sure to mess so much up, but tried so hard. They are good boys and I think with potential. Good mannered, handome, doing something with a direction. How blessed can that get?
I grieved about the time and the intimacy I lost as a wife. The RLS, the insomnia, the chronic pain, it changes people after awhile without asking if it's ok. Again, what a great guy I have been given a life with that cares and helps. How lucky am I?
Pain and RLS do not define me, unless I believe it comes for a greater good. You doing an article in minor magazine about RLS? It controls my life. But it is what it is in the end.
You morn off and on. You have to remember that our brains have lask of sleep, making it harder to see things together, fitting in a natural way, maybe calmer as well. The world does not look gray when your able to sleep, heal. You can find that joy again, but part of that is choice.
Im old and jaded a bit I supposed, but for me it comes down to two choices:
1. Deal with what you can. Take a break if you need to. Say no to the things that are not helpful. By that, coffee, alcohol, invatations (some, you need to live a real life!)
Now it becomes one of those things in life that just "IS WHAT IT I !"
And as a friend mentioned recently, "be kind to yourself."
You'll finally get mad, totally torked off. Your first reaction will be to fight back. That's healing, and a alot of sleep included.
Your other choice is to give up and not do a thing about it.
I sincerely thing that you fit into the last statement. I believe there might be a fighter in you. That someone that wants to know for sure life can and will go on. It will be ok, Gill, it can.
RLS is a working, constant for many here, livable, doable, when treated proeperly, That may change in time, but trial and errors give us great knowledge and incouragepeople to research for themselves.
It's ok that it seems overwheling, but you get to a point when it's matter of fact with a bit larger impact.
Life is still worth fighting for, the hope and the means are there.
Lynne
Hey Gill
I have started writing something to you several times, then--it just didn't sound like I wanted it to. So, I didn't hit the "submit" button. Now that I've read the messages you've received, I'm going to try to write what's on my heart, as well.
Lynne and I have talked about this so many times. We've grieved together (and apart) because, as she told you, we're not who we thought we'd be. Lynne is a lot younger than I am. Strange, because we are such close friends. But, she's almost 20 years younger than me. So, we are at different stages of our lives. But, I think of her and think how blessed I was when I was her age. My RLS wasn't nearly as bad as hers is right now (or as bad as mine is now).
However, years of getting little or no sleep--and I mean years--have taken their toll on my body. I believe there's a direct correlation between my lack of sleep due to RLS and the fact that I have had so many health problems in the last 5 years. That, and all of the strong medication I've been on for 20 years.
I used to be a worrier, Gill. I'm not so much, anymore. Maybe that comes with age. Maybe I've just decided, in the back of my mind, that "it is what it is." I'm not going to tell you not to worry. You can't help it.
There is a grieving period you go through when you know you have a chronic illness or condition and you reach that defining moment when you realize that you won't be who you thought you'd be. I have an 80 year old neighbor lady. I am 60. My neighbor can do so much more than I can. I look at her, and bless her heart, I am jealous of her. Just a few years ago, I was able to climb a ladder to wash windows or reach something; and not have to ask for help to do ordinary things like cleaning my bathtub. Now, there are days when I feel like I'm the 80 yr. old and she's the 6o yr. old.
But, you know what? Life offers no guarantees, anyway. If I didn't have RLS (or back problems or Diabetes), I might have something worse. I'm not saying that to make you feel bad, either. RLS is horrible!!! I wouldn't wish it on my worst enemy.
But, Gill, don't let RLS or anything (or anyone) steal your joy!!! That's what I've decided. I'm not going to let RLS (or whatever other thing I might have) OR anyone steal my joy! I might give in temporarily, but not for long! You have this one life, Gill. Live it, honey. Don't let RLS steal YOUR JOY! Grieve--cry, kick, scream. It's NOT fair! But, it is what it is, Gill. You have RLS. You AREN'T RLS, you just HAVE RLS. You are still Gill--deep inside, you are still Gill.
Hang in there, honey. Nights are bad, I know that. But, the sun will rise in the morning.
Hugs
Jan
I have started writing something to you several times, then--it just didn't sound like I wanted it to. So, I didn't hit the "submit" button. Now that I've read the messages you've received, I'm going to try to write what's on my heart, as well.
Lynne and I have talked about this so many times. We've grieved together (and apart) because, as she told you, we're not who we thought we'd be. Lynne is a lot younger than I am. Strange, because we are such close friends. But, she's almost 20 years younger than me. So, we are at different stages of our lives. But, I think of her and think how blessed I was when I was her age. My RLS wasn't nearly as bad as hers is right now (or as bad as mine is now).
However, years of getting little or no sleep--and I mean years--have taken their toll on my body. I believe there's a direct correlation between my lack of sleep due to RLS and the fact that I have had so many health problems in the last 5 years. That, and all of the strong medication I've been on for 20 years.
I used to be a worrier, Gill. I'm not so much, anymore. Maybe that comes with age. Maybe I've just decided, in the back of my mind, that "it is what it is." I'm not going to tell you not to worry. You can't help it.
There is a grieving period you go through when you know you have a chronic illness or condition and you reach that defining moment when you realize that you won't be who you thought you'd be. I have an 80 year old neighbor lady. I am 60. My neighbor can do so much more than I can. I look at her, and bless her heart, I am jealous of her. Just a few years ago, I was able to climb a ladder to wash windows or reach something; and not have to ask for help to do ordinary things like cleaning my bathtub. Now, there are days when I feel like I'm the 80 yr. old and she's the 6o yr. old.
But, you know what? Life offers no guarantees, anyway. If I didn't have RLS (or back problems or Diabetes), I might have something worse. I'm not saying that to make you feel bad, either. RLS is horrible!!! I wouldn't wish it on my worst enemy.
But, Gill, don't let RLS or anything (or anyone) steal your joy!!! That's what I've decided. I'm not going to let RLS (or whatever other thing I might have) OR anyone steal my joy! I might give in temporarily, but not for long! You have this one life, Gill. Live it, honey. Don't let RLS steal YOUR JOY! Grieve--cry, kick, scream. It's NOT fair! But, it is what it is, Gill. You have RLS. You AREN'T RLS, you just HAVE RLS. You are still Gill--deep inside, you are still Gill.
Hang in there, honey. Nights are bad, I know that. But, the sun will rise in the morning.
Hugs
Jan
No one is alone who had friends.
-
cornelia
Gil,
I think the stages of grieving apply to RLS as with any other major health issue a person goes through. I forget the exact arrangement of grief structure, but I started out getting good and angry. I was mad at all my doctors, mad at my legs (I wanted to get rid of them), and mad that on top of other health issues that creeped into my older age that this one visited on me for no reason. Then I went through denial. I did not believe I had RLS. After lots of wasted money on tests, researching other possibilities, I finally accepted my lot in life. The good thing, though, is I got good medicine right away. The medical community where I live is very good, they pegged me from the start, and were not afraid to give me opiates. This took RLS off the top of the list of my worries, and stuck it where it belongs, on the back burner in someone else's kitchen.
As for the long-term view, I don't worry about RLS anymore. It comes and goes, is aggravated by standing too long and by cold weather, but I know what's going on and I'm used to it. I do have some thoughts about what it does to some people's legs, however. The muscles keep contracting, that puts so much pressure on the the bones, that I wonder if part of the reason I hobble is because of RLS. Even so, I am at the age where it doesn't matter too much to me. Kind of like trading looks for wisdom, a feeling of contentment replaces energetic youth, and I gladly say "I am sick" and let others carry my packages for me.
The best advice I can give you is to get medication that will stop the pain. Good drugs are the best line of defense against RLS. You must either work with your doctor or a diferent one or go to a neurologist to get significantly better pain medication than what you have now. This is where you should put your focus, on getting better help. The drug you are taking IS NOT WORKING, else you would not be here pleading for assistance. Plead with your doctor, it is okay to stand up for yourself in his office, and tell him what you need. It is okay to cry in front of him as you carefully recount a couple stories about how the suffering is ruining your life. Gil, some people take MORPHINE for this condition! That's how bad it can be. Morphine is one step away from heroin, and yet people who take it for RLS and other medical conditions live normal lives.
Educate yourself online about RLS, learn a little more about it, print out a couple respected reports on its effects and treatment, and GIVE IT to your physician. The doctor group I see rotates their staff every couple years, and I gave a whole book to my new gerontologist. This is because I have no doubt that in time, the RLS will progress, and I will need stronger drugs.
Like all illnesses, it is very reassuring to have a doctor on your side who fully understands and is cooperative of your condition and who can answer your questions. Good treatment is also a major component of helping people learn to live with all sorts of illnesses. Your treatment has been poor, I am angry for you, and I hope you will take some of what I say and put some sort of plan of action together, because let me tell you, once you get the right medication, your attitude will improve dramatically.
GG
I think the stages of grieving apply to RLS as with any other major health issue a person goes through. I forget the exact arrangement of grief structure, but I started out getting good and angry. I was mad at all my doctors, mad at my legs (I wanted to get rid of them), and mad that on top of other health issues that creeped into my older age that this one visited on me for no reason. Then I went through denial. I did not believe I had RLS. After lots of wasted money on tests, researching other possibilities, I finally accepted my lot in life. The good thing, though, is I got good medicine right away. The medical community where I live is very good, they pegged me from the start, and were not afraid to give me opiates. This took RLS off the top of the list of my worries, and stuck it where it belongs, on the back burner in someone else's kitchen.
As for the long-term view, I don't worry about RLS anymore. It comes and goes, is aggravated by standing too long and by cold weather, but I know what's going on and I'm used to it. I do have some thoughts about what it does to some people's legs, however. The muscles keep contracting, that puts so much pressure on the the bones, that I wonder if part of the reason I hobble is because of RLS. Even so, I am at the age where it doesn't matter too much to me. Kind of like trading looks for wisdom, a feeling of contentment replaces energetic youth, and I gladly say "I am sick" and let others carry my packages for me.
The best advice I can give you is to get medication that will stop the pain. Good drugs are the best line of defense against RLS. You must either work with your doctor or a diferent one or go to a neurologist to get significantly better pain medication than what you have now. This is where you should put your focus, on getting better help. The drug you are taking IS NOT WORKING, else you would not be here pleading for assistance. Plead with your doctor, it is okay to stand up for yourself in his office, and tell him what you need. It is okay to cry in front of him as you carefully recount a couple stories about how the suffering is ruining your life. Gil, some people take MORPHINE for this condition! That's how bad it can be. Morphine is one step away from heroin, and yet people who take it for RLS and other medical conditions live normal lives.
Educate yourself online about RLS, learn a little more about it, print out a couple respected reports on its effects and treatment, and GIVE IT to your physician. The doctor group I see rotates their staff every couple years, and I gave a whole book to my new gerontologist. This is because I have no doubt that in time, the RLS will progress, and I will need stronger drugs.
Like all illnesses, it is very reassuring to have a doctor on your side who fully understands and is cooperative of your condition and who can answer your questions. Good treatment is also a major component of helping people learn to live with all sorts of illnesses. Your treatment has been poor, I am angry for you, and I hope you will take some of what I say and put some sort of plan of action together, because let me tell you, once you get the right medication, your attitude will improve dramatically.
GG
Hi Gill You certainly received some awesome information from these members. I myself have had rls for over 20 yrs and right now they are under control and thankful for that.
One thing to remember is try not to get stressed over things (I know it is easier said then done) but it does trigger the rls and if you have any type of caffeine try to elminate it or take it earlier in the morning so it does not effect your rls.
This is a miserable disorder and/or disease but if you can find the right meds no matter what and it works then I would continue. Remember what works for someone else may not work for you so please be sure that you talk to your dr and find a happy medium to give you the relief that you so much deserve.
Gill we are all pulling for you and we have all walked down that lonely road so you are not alone.
One thing to remember is try not to get stressed over things (I know it is easier said then done) but it does trigger the rls and if you have any type of caffeine try to elminate it or take it earlier in the morning so it does not effect your rls.
This is a miserable disorder and/or disease but if you can find the right meds no matter what and it works then I would continue. Remember what works for someone else may not work for you so please be sure that you talk to your dr and find a happy medium to give you the relief that you so much deserve.
Gill we are all pulling for you and we have all walked down that lonely road so you are not alone.
Charlene
Taking one day at a time
Taking one day at a time
Hi Guys
Geez thanks for your kind replies they
have been awesom im not too worried
now about the future.
Recently bought myself a tens machine
over here in UK its for massage/pain
relief you can use in your own home.
So lets see how it goes. Am still on the
pain killers though for my Arthiritis the
rls doesnt help the Arthiritis I have in
my knees and ankles plus top half of
my body i e neck left shoulder and
back and of course that is where I have
Neuralgia and the pain from that goes
to my right breast oh geez if its not one
thing 12 others.....lol.
Thanks again guys maybe see you in
chat sometime.
love to all
gill (UK)
Geez thanks for your kind replies they
have been awesom im not too worried
now about the future.
Recently bought myself a tens machine
over here in UK its for massage/pain
relief you can use in your own home.
So lets see how it goes. Am still on the
pain killers though for my Arthiritis the
rls doesnt help the Arthiritis I have in
my knees and ankles plus top half of
my body i e neck left shoulder and
back and of course that is where I have
Neuralgia and the pain from that goes
to my right breast oh geez if its not one
thing 12 others.....lol.
Thanks again guys maybe see you in
chat sometime.
love to all
gill (UK)
I couldn't be more proud right now, what awesome, thoughtful, sharing and caring responses this thread holds.
We honestly do learn best from one another and I'm proud that you are all here, sharing your hearts and helping those that follow with all you've learned.
I love this family.
My heart is swollen with pride and just sheer joy right now.
Awesome.
Lynne
We honestly do learn best from one another and I'm proud that you are all here, sharing your hearts and helping those that follow with all you've learned.
I love this family.
My heart is swollen with pride and just sheer joy right now.
Awesome.
Lynne
gill, just to let u know about me....my comments r usually short and to the point unless i am mad and then i can get long winded.....but i do feel your pain literally, you can ask becat about me. lol my legs r giving me a fit tonight! i do hope u get to feeling better!
tazz
tazz
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Gill--
It does get worrisome sometimes. I'm still in the moderate stage of RLS. Once in a while, lately, my legs will hurt, or I'll start twitching, which aren't usual for my case, and they scare me really badly when they happen. Who knows if they're here to stay? Life with those symptoms all the time sounds really bad. So far, I'm lucky and they usually only last one night.
Of course, the flip side of "things could get worse," is that "things aren't as bad as they could be." All we can do is take what we can get and make the most of it while we've got it. We should be honest with ourselves, and grieve for what we've lost, but we can't get wound up in it, or we lose even more. Easier said than done, of course, but we do know that stress only makes RLS worse, so it's fair to say.
Perhaps my outlook would be a lot gloomier if I were in a more advanced, or even refractory, state. I hope not. I'll have to deal with it if/when it happens. Meanwhile, I just try to keep my mind on other things. It's too easy to get consumed with it.
My wife has a saying inherited from her family and probably from many others: Sufficient unto the day is the evil thereof. I always think it's a bit archaic in wording, but the sentiment that the evil of a day to come is more than enough, and that there's no good reason to make it worse by causing yourself pain through worry, is a good one. Again, easier said than done. But I try.
It does get worrisome sometimes. I'm still in the moderate stage of RLS. Once in a while, lately, my legs will hurt, or I'll start twitching, which aren't usual for my case, and they scare me really badly when they happen. Who knows if they're here to stay? Life with those symptoms all the time sounds really bad. So far, I'm lucky and they usually only last one night.
Of course, the flip side of "things could get worse," is that "things aren't as bad as they could be." All we can do is take what we can get and make the most of it while we've got it. We should be honest with ourselves, and grieve for what we've lost, but we can't get wound up in it, or we lose even more. Easier said than done, of course, but we do know that stress only makes RLS worse, so it's fair to say.
Perhaps my outlook would be a lot gloomier if I were in a more advanced, or even refractory, state. I hope not. I'll have to deal with it if/when it happens. Meanwhile, I just try to keep my mind on other things. It's too easy to get consumed with it.
My wife has a saying inherited from her family and probably from many others: Sufficient unto the day is the evil thereof. I always think it's a bit archaic in wording, but the sentiment that the evil of a day to come is more than enough, and that there's no good reason to make it worse by causing yourself pain through worry, is a good one. Again, easier said than done. But I try.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.