I had a converstion with my wife the other day about my life-long battle with RLS. She's very understanding, and helps any way she can. One thing I've made her promise me is that if I ever become incapacitated, such as after a stroke or an accident, she will make sure the treating physicians and nurses know that I suffer from severe RLS so they can treat me accordingly. My biggest fear is being stuck in a hospital bed and unable to communicate my suffering.
Just something for you to think about.
Ray
Make sure they know!
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ViewsAskew
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Ray, that is really important. Can you imagine being in a psych ward, for example, and having them strap your arms or legs??!!!! How horrible. Thanks for sharing that with us. I think I'll have a chat with my DH tonight.
Ann
Ann
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Rbaltes,
I posted to you in the other section as well and gave my advice to you there. However, forgot to mention something.
Medical alert cards can be downloaded and copied at the Southern California RLS website.
http://www.rlshelp.org/
I have seen this happen just this past year to my grandmother. She had a massive stroke and still the RLS was there. It was horrible to watch and I often moved her legs and scratched what I knew itched, as much as possible. Her creepy crawlies were always on the front of her scalp. Since she could not really talk to us (out loud) I'm glad I knew about it and knew about how it effected her. My blessing was to be with her for the last 16 days.
The only time it was not present was the last day or so of her life.
I hope I helped. I know you have with this post.
I, like Ann, thank you for posting this. It's something we all need to deal with.
I posted to you in the other section as well and gave my advice to you there. However, forgot to mention something.
Medical alert cards can be downloaded and copied at the Southern California RLS website.
http://www.rlshelp.org/
I have seen this happen just this past year to my grandmother. She had a massive stroke and still the RLS was there. It was horrible to watch and I often moved her legs and scratched what I knew itched, as much as possible. Her creepy crawlies were always on the front of her scalp. Since she could not really talk to us (out loud) I'm glad I knew about it and knew about how it effected her. My blessing was to be with her for the last 16 days.
The only time it was not present was the last day or so of her life.
I hope I helped. I know you have with this post.
I, like Ann, thank you for posting this. It's something we all need to deal with.
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Guest
To add my 2 cents worth, make sure the person in charge of your medical decisions knows what medications may make your RLS worse. I have needed and received a series of 9 steroid injections in my back, and the steroids send my legs into hell. I sit up all night kicking, stomping, and crying. I knew they were necessary, but if I were hospitalized for a severe asthma attack, for instance, and they hooked me up to an IV of some steroid, I'd tap dance 24/7. And no one would know why. That could get us a dose of tranquilizer, which, though we might sleep, would make the legs even worse for me!
And I thought when this all started several years ago--no big deal, just have to take my medication. Now I realize someone signed me up for another miserable disease that has a daily effect on my life.
And I thought when this all started several years ago--no big deal, just have to take my medication. Now I realize someone signed me up for another miserable disease that has a daily effect on my life.
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Penguinrocks
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whomever this person is guest, i think someone should hunt them down! I didn't sign up for this...or
It never looks the same as the brochure....
The pain is bad bad bad...and now, with no way to regulate any meds for me....i'm on my own.
Insurance won't cover aqua therapy...so no aqua therapy for me.
Ever been down that road that you don't know which fork to take? I think I slammed right into the tree in the middle of that fork....
Penguin
It never looks the same as the brochure....
The pain is bad bad bad...and now, with no way to regulate any meds for me....i'm on my own.
Insurance won't cover aqua therapy...so no aqua therapy for me.
Ever been down that road that you don't know which fork to take? I think I slammed right into the tree in the middle of that fork....
Penguin
Beware the Penguin
hello
Hi Miss Penguin,
I am so sorry to hear that the insurance will not cover the aqua therapy.
And are the pain meds out with no refill or are they just not working?
Either way, this is just stupid for them to keep you in this constant state of no help. If this comes down to money and the pain meds., there are tons of generics that are very cheap. Or is the doc not allowing refills? If it's the first, then you can price shop by calling local pharmacies or ask the doc for a cheaper med (generic). Something needs to give here for you.
I know that money does not grow on trees, but is it at all possible for you to join a fit club that offers a hot tub? Even a WMCA use to work with people about pricing. I think in the larger towns they might offer a hot tub. I know it's not aqua therapy but the over all heat is very helpful. Much different than the tub at home.
BTW, there will be no slamming into the tree.....you might be stuck in the road right now, but look at how far you've come. You've got all of us here and maybe together we can all look at this and help work it out.
My hugs, hope, and love to you Miss Penguin, you still rock.
I am so sorry to hear that the insurance will not cover the aqua therapy.
And are the pain meds out with no refill or are they just not working?
Either way, this is just stupid for them to keep you in this constant state of no help. If this comes down to money and the pain meds., there are tons of generics that are very cheap. Or is the doc not allowing refills? If it's the first, then you can price shop by calling local pharmacies or ask the doc for a cheaper med (generic). Something needs to give here for you.
I know that money does not grow on trees, but is it at all possible for you to join a fit club that offers a hot tub? Even a WMCA use to work with people about pricing. I think in the larger towns they might offer a hot tub. I know it's not aqua therapy but the over all heat is very helpful. Much different than the tub at home.
BTW, there will be no slamming into the tree.....you might be stuck in the road right now, but look at how far you've come. You've got all of us here and maybe together we can all look at this and help work it out.
My hugs, hope, and love to you Miss Penguin, you still rock.
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Penguinrocks
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Hi Ms. Be
The meds either don't work or they cause REALLY BAD side effects.
I know the cold isn't helping much and it's a whole 20 degrees this morning...
Snow storm on the way for Sat night into Sun so I'll be spending my day with the snow blower....
Anyhoo....enough complaining out of this penguin....you all have your own yuk to deal with....
Love you all so very much!
Penguin
The meds either don't work or they cause REALLY BAD side effects.
I know the cold isn't helping much and it's a whole 20 degrees this morning...
Snow storm on the way for Sat night into Sun so I'll be spending my day with the snow blower....
Anyhoo....enough complaining out of this penguin....you all have your own yuk to deal with....
Love you all so very much!
Penguin
Beware the Penguin
Hi Sweet Penguin
Now, this may be a totally stupid question, but did you ask your doctor to prescribe aqua therapy for you? My doc did for me. But, I know--even then--some insurance companies won't pay. Is there a local hospital which offers aqua therapy through a therapeutic center? That's the way it is here where I live. So, it's a lot cheaper. I figure if I throw enough up against the wall, maybe something will stick! There's got to be a way for you, Penguin! I know you are strapped for time with working and being a mom--so it's hard to be a detective, too. Wish I could come up there and help you...... In the meantime, like Miss B said, maybe someone will have an idea if we just keep thinking and talking about your situation.
Here's a
to start your day. And a wish that spring would come soon for you so you wouldn't have to shovel and/or blow snow!
Have a good day!
Jan
Now, this may be a totally stupid question, but did you ask your doctor to prescribe aqua therapy for you? My doc did for me. But, I know--even then--some insurance companies won't pay. Is there a local hospital which offers aqua therapy through a therapeutic center? That's the way it is here where I live. So, it's a lot cheaper. I figure if I throw enough up against the wall, maybe something will stick! There's got to be a way for you, Penguin! I know you are strapped for time with working and being a mom--so it's hard to be a detective, too. Wish I could come up there and help you...... In the meantime, like Miss B said, maybe someone will have an idea if we just keep thinking and talking about your situation.
Here's a
to start your day. And a wish that spring would come soon for you so you wouldn't have to shovel and/or blow snow!
Have a good day!
Jan
No one is alone who had friends.
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Penguinrocks
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Thanks Ray! In the rush and rubble of the RLS journey, this is something I had not considered. Dr. has meds to avoid etc in file... but we all know about files... This is something that Will and I need to discuss. Thanks again for a very important message!
Miss Penquin - so sorry that insurance will not pay for the aqua therapy. You certainly have had a rough patch ... The cold winter weather does not help. Let's put our minds together and send that snow my way! You need the sunshine and warmth, we could use the moisture!
((((BIG HUG)))))) ***********Positive Thoughts***********
Hazel
Miss Penquin - so sorry that insurance will not pay for the aqua therapy. You certainly have had a rough patch ... The cold winter weather does not help. Let's put our minds together and send that snow my way! You need the sunshine and warmth, we could use the moisture!
((((BIG HUG)))))) ***********Positive Thoughts***********
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
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Jenny
I, Jenny, am the "guest" of the post about medications to tell others will make your legs go goofy. I sign in, but it won't take my sign in! I got a comfirmation email when I registered Tuesday. It'll catch up to me. I'll disengage my cookies and it should be ok.
Listening to everyone talk here, you are so much like a community I belong to for peripheral neuropathy. For me, the Restless Leg and the PN are wrapped around each other--like one wasn't enough! The PN community finds the very worst part lack of treatment. Asking repeatedly for something to take the pain away for a few hours. We aren't asking for anything we don't qualify for by just being human. When my diabetic cat developed a painful condition, I helped her get rid of her pain. I'm not saying we should be euthanized, but any living creature should be given the dignity of pain relief.
My worst days and nights run into each other, with my legs kicking and stomping and the pain shooting through them. When I am that tired, and in that much pain, I have no quality of life. Another thing every living being deserves.
Guess you can tell I'm po'd at a medical system that doesn't take care of our needs. Sorry. Lack of sleep and pain make me irritable!
Jenny
Listening to everyone talk here, you are so much like a community I belong to for peripheral neuropathy. For me, the Restless Leg and the PN are wrapped around each other--like one wasn't enough! The PN community finds the very worst part lack of treatment. Asking repeatedly for something to take the pain away for a few hours. We aren't asking for anything we don't qualify for by just being human. When my diabetic cat developed a painful condition, I helped her get rid of her pain. I'm not saying we should be euthanized, but any living creature should be given the dignity of pain relief.
My worst days and nights run into each other, with my legs kicking and stomping and the pain shooting through them. When I am that tired, and in that much pain, I have no quality of life. Another thing every living being deserves.
Guess you can tell I'm po'd at a medical system that doesn't take care of our needs. Sorry. Lack of sleep and pain make me irritable!
Jenny
Dear Jenny,
You say it so well! So glad that you have joined us. Ms Becat is an active advocate for *Quality of Life* as are all of us ... you will find many people who have posted their Quality of Life statements....
What I realized when I first came to rls.org is that I had accepted a quality of life that the medical community had assigned to me and that was unacceptable! The support and education I found here empowered me. So glad you are a part of our community.
Hazel
You say it so well! So glad that you have joined us. Ms Becat is an active advocate for *Quality of Life* as are all of us ... you will find many people who have posted their Quality of Life statements....
What I realized when I first came to rls.org is that I had accepted a quality of life that the medical community had assigned to me and that was unacceptable! The support and education I found here empowered me. So glad you are a part of our community.
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
thank you Hazel!
I was just reading Jenny's post and was I was going to tell her about the Quality of life project.
Jenny this could work well for your PN group as well. I'll give you the link to our section here.
http://bb.rls.org/viewtopic.php?t=536
However, I based it on the thought that if you had 5 minutes to talk to the doctors, researchers, and heads of our foundation (not sure if PN has something like this) .....what would you tell them about your Quality of Life. It's a good thing to get a collection of them and send them into the groups you think might help you change the rules of practice.
As for the pain medications, I can tell you that many docs (as you know) don't like pain meds., addiction (lol if you need them for chornic pain then yes, call me addicted, if it makes you feel better.) and the war on drugs. Paper work and red tape for them.
However, a member from Seattle gave me something called a narco or pain contract. I think it might be helpful for many of us with pain to try with our docs.. Some states demand these contracts for refills or repeated prescriptions. If you'd like a copy just let me know. To offer one to a doc while addressing pain might be helpful for some, just to show that it's not a pill popping plan.
Thanks for sharing.
BTW, Miss Penguin........I love you and I'd gladly deal with any of yours anyday. I'm sorry your having a winter. Heck move to Texas it's been summer all year long. LOL Hugs and moonlight to ya.
I was just reading Jenny's post and was I was going to tell her about the Quality of life project.
Jenny this could work well for your PN group as well. I'll give you the link to our section here.
http://bb.rls.org/viewtopic.php?t=536
However, I based it on the thought that if you had 5 minutes to talk to the doctors, researchers, and heads of our foundation (not sure if PN has something like this) .....what would you tell them about your Quality of Life. It's a good thing to get a collection of them and send them into the groups you think might help you change the rules of practice.
As for the pain medications, I can tell you that many docs (as you know) don't like pain meds., addiction (lol if you need them for chornic pain then yes, call me addicted, if it makes you feel better.) and the war on drugs. Paper work and red tape for them.
However, a member from Seattle gave me something called a narco or pain contract. I think it might be helpful for many of us with pain to try with our docs.. Some states demand these contracts for refills or repeated prescriptions. If you'd like a copy just let me know. To offer one to a doc while addressing pain might be helpful for some, just to show that it's not a pill popping plan.
Thanks for sharing.
BTW, Miss Penguin........I love you and I'd gladly deal with any of yours anyday. I'm sorry your having a winter. Heck move to Texas it's been summer all year long. LOL Hugs and moonlight to ya.
Can't wait to sleep!-
Penguinrocks
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- Joined: Thu Mar 17, 2005 6:03 pm
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- Contact:
yes, I think I'll buy my winter home in Texas! lol!
Hazey, I'd love to change the jet stream so you can have the snow....
Yanno, even though the insurance won't pay...I still think I"m pretty lucky that my docs DO listen to me. and they really ARE trying to help me....but with no one really knowing how/what to do, they are at a loss as well.
I thank the moon and the stars that they shine on me the same time they're shining on you. Keeps me so close eventhough we're miles away...
I'm glad i made the move to say hello over 1 year ago....
I love you all so much
Penguin
Hazey, I'd love to change the jet stream so you can have the snow....
Yanno, even though the insurance won't pay...I still think I"m pretty lucky that my docs DO listen to me. and they really ARE trying to help me....but with no one really knowing how/what to do, they are at a loss as well.
I thank the moon and the stars that they shine on me the same time they're shining on you. Keeps me so close eventhough we're miles away...
I'm glad i made the move to say hello over 1 year ago....
I love you all so much
Penguin
Beware the Penguin