I say let's take all these rag-tag boats, tie them together in a party barge and sail into the sunset. Hoist up a big mainsail, say adios to the people on shore (all those I want to say NO to), sit back and just let the troubles melt away. We can just let that barge float wherever it wants, knowing that wherever we land, it will be good.
So bring your favorite food, beverage, clothing and let's head for the open sea. No serious discussions allowed, just visit or stay quiet, but sit together as friends and people who care about each other. When the sun goes down, there will be a gorgeous full moon to guide our path.
What do you say?
Venting
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Rubyslipper
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Walking After Midnight
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I must have missed that picture. I'm sure he looked loverly in it. I for one WILL be wearing my new tiara with the genuine rhinestones and pearl drops. I want the sunset to reflect off of it.
Thanks for the well wishes, WAM. I know they come from the heart.
Thanks for the well wishes, WAM. I know they come from the heart.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
Ruby--
My wife always tells me I really suck at sympathizing, so I'll take the problem-solving tack instead...
Is it your RLS/FM that's affecting your typing, or your meds? I'm guessing if you hurt all the time, you must already have maxed out your meds or you'd have upped the dose to take care of it.
Your typing looks just like mine did when I used to chat online in college while intoxicated, or later in life when I'd chat while my ambien/sonata were kicking in. Sure looks like typing under the influence in some manner.
Is it possible your liver is loaded heavily enough that it can't clear all of your meds out, and you're getting progressively more altered?
My wife always tells me I really suck at sympathizing, so I'll take the problem-solving tack instead...
Is it your RLS/FM that's affecting your typing, or your meds? I'm guessing if you hurt all the time, you must already have maxed out your meds or you'd have upped the dose to take care of it.
Your typing looks just like mine did when I used to chat online in college while intoxicated, or later in life when I'd chat while my ambien/sonata were kicking in. Sure looks like typing under the influence in some manner.
Is it possible your liver is loaded heavily enough that it can't clear all of your meds out, and you're getting progressively more altered?
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.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I think you are very good at sympathizing, just in your own way. Actually the only medication I take is Mirapex and Klonopin (low doses)for the RLS. Occasionally I will take a Tramadol (1-2 times a week) for the pain but that's it. So I guess it's the medical problems causing the typos.
So far no doctor will prescribe any other pain meds and the Tramadol doesn't help much. If I take two pills instead of one, I get sick and very dizzy so I don't do that. I just can't imagine that I have too many medications floating around in my body. But that's a good suggestion.
I think I will try the food avoidance next. Try cutting out certain foods to see if that helps. Guess I'll be back to fish and brussel sprouts (but at least I have a good recipe for the sprouts now!)
So far no doctor will prescribe any other pain meds and the Tramadol doesn't help much. If I take two pills instead of one, I get sick and very dizzy so I don't do that. I just can't imagine that I have too many medications floating around in my body. But that's a good suggestion.
I think I will try the food avoidance next. Try cutting out certain foods to see if that helps. Guess I'll be back to fish and brussel sprouts (but at least I have a good recipe for the sprouts now!)
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
Yeah, I had the same reaction when I was taking tramadol. Taking extra made me sick and dizzy too, plus gave me a bad headache afterward. I avoided it.
You mention food... ever been checked for celiac disease? You only mentioned a couple of things you have in common with it, but maybe there's other stuff you haven't mentioned. Check into http://www.csaceliacs.org/celiac_symptoms.php if you haven't already.
Otherwise, I guess all I can do is hope your doctor visit goes well and he has better ideas...
You mention food... ever been checked for celiac disease? You only mentioned a couple of things you have in common with it, but maybe there's other stuff you haven't mentioned. Check into http://www.csaceliacs.org/celiac_symptoms.php if you haven't already.
Otherwise, I guess all I can do is hope your doctor visit goes well and he has better ideas...
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.
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
It's weird how fibro, IBS, autism, and a few other things seem to respond to diet. And wheat or gluten is often implicated.
It truly might be worth a try, Ruby. On the celiac forum I visit, they always tell people to NEVER eliminate gluten without a test. But, sometimes you can't get a test or the test is negative. It seems to me that when you feel as lousy as you do it's worth it to try anything that might work. I've done elimination diets a few times...while they were hard, they really did help me a LOT. On that same forum, there are many people who at one time were in unbelievable pain - one woman was in a wheelchair and she now out hiking just because she cut out gluten. She wasn't diagnosed as celiac, but cutting out the gluten changed her life.
It might be wheat for you. It might be something else - for my mom it was dairy. And, it might not be any food at all. To me, it does seem like a reasonable thing to try, though. It's certainly not harder than not being able to walk up those stairs.
It truly might be worth a try, Ruby. On the celiac forum I visit, they always tell people to NEVER eliminate gluten without a test. But, sometimes you can't get a test or the test is negative. It seems to me that when you feel as lousy as you do it's worth it to try anything that might work. I've done elimination diets a few times...while they were hard, they really did help me a LOT. On that same forum, there are many people who at one time were in unbelievable pain - one woman was in a wheelchair and she now out hiking just because she cut out gluten. She wasn't diagnosed as celiac, but cutting out the gluten changed her life.
It might be wheat for you. It might be something else - for my mom it was dairy. And, it might not be any food at all. To me, it does seem like a reasonable thing to try, though. It's certainly not harder than not being able to walk up those stairs.
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.
Forgive me Ruby, but I know you are not offered the help you really need. Makes me ready to rev up the broom and fly around your docs house. 
I can tell you that I was ONCE, I said once WAM, lol, a yes girl. You asked I said yes.
After so many years of RLS and no help with it, I had to really learn to stop myself. For all the good reasons for myself.
I did worry about the "other moms" looking down on me, it was a small community that we traveled, while our kids were in school.
Anyway, I had to say no, just for me. I'd likely be the only one working for several teachers at a time, or taking on jobs that someone else didn't get done, whatever.
Ruby, it's not easy the first couple of times, and make your list of what is really important, and only the top 3 get your time. You need to take care of you.
I'm so glad that most of what you do, is for you. But with all you have going, it's ok to just show up to the event and enjoy.
My love and the moon for you.
Lynne
I can tell you that I was ONCE, I said once WAM, lol, a yes girl. You asked I said yes.
After so many years of RLS and no help with it, I had to really learn to stop myself. For all the good reasons for myself.
I did worry about the "other moms" looking down on me, it was a small community that we traveled, while our kids were in school.
Anyway, I had to say no, just for me. I'd likely be the only one working for several teachers at a time, or taking on jobs that someone else didn't get done, whatever.
Ruby, it's not easy the first couple of times, and make your list of what is really important, and only the top 3 get your time. You need to take care of you.
I'm so glad that most of what you do, is for you. But with all you have going, it's ok to just show up to the event and enjoy.
My love and the moon for you.
Lynne
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ViewsAskew
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- Location: Los Angeles
I was a yes girl once, too. I still want to be at times, mostly because it's fun and interesting to do all these things. But, I can't be. Besides, you've done enough (and so has Lynne and probably me) to cover for half the world. Let them do something for awhile.
One thing I learned when I learned the word, "NO," was that it takes about 50 tries the first few times. See, people don't believe you. Either they know that you ALWAYS cave in....or you still have the invisible sign turned to the ON position. YOu know, the sign that others read on your face that says, "Ask me. I always say Yes."
I had to first get through the people who expected the Yesses. That was really, really, really hard. I had to sit them down, finally, and say, "Please do not ask me anymore. I know you have needs, but so do I. I cannot help you." And, then they would ask again, at which point I had to say, "SusieQ, please help me. I said I couldn't help you. Why are you asking me again?" Then I would get the sob story about how no one else did, or how great I was, or whatever. And, I had to stand firm. I particularly had to learn to let go of the secret rush of adrenaline I got from being sooooooo darned special and important. A rush I didn't admit to myself for a long time.
During this time, I was involved in a little 12 step program. I came across this concept about how I wasn't God...or a god. It's this self-importance concept that I struggled with. I initially rebelled against it. But, for me, the truth was that my actions were that I was responsible for everyone (and everything) else - I had to save them. But, what made me think I was so important that I would be in charge of everyone else? And, how important did I think I was that the world couldn't get along without me helping them out?
That may or may not apply to anyone else, but it surely did to me. I've learned that it's OK to apply the same rules of forgiveness to myself that I apply to others. I'd not expect ANYONE to live by the rules I made myself live by. I set myself up to an expectation that wasn't realistic. It was so hard to see the paradox that in doing so, I'd also set myself up as the most important person in my world. Yet, if you'd ask me, I'd have said I wasn't important at all.
Not sure any of that made any sense. It took lots of meetings before I "got" what I was doing to myself....and others....with my behavior. By posting this, I am not saying this applies to anyone else here - just saying what happened to me.
One thing I learned when I learned the word, "NO," was that it takes about 50 tries the first few times. See, people don't believe you. Either they know that you ALWAYS cave in....or you still have the invisible sign turned to the ON position. YOu know, the sign that others read on your face that says, "Ask me. I always say Yes."
I had to first get through the people who expected the Yesses. That was really, really, really hard. I had to sit them down, finally, and say, "Please do not ask me anymore. I know you have needs, but so do I. I cannot help you." And, then they would ask again, at which point I had to say, "SusieQ, please help me. I said I couldn't help you. Why are you asking me again?" Then I would get the sob story about how no one else did, or how great I was, or whatever. And, I had to stand firm. I particularly had to learn to let go of the secret rush of adrenaline I got from being sooooooo darned special and important. A rush I didn't admit to myself for a long time.
During this time, I was involved in a little 12 step program. I came across this concept about how I wasn't God...or a god. It's this self-importance concept that I struggled with. I initially rebelled against it. But, for me, the truth was that my actions were that I was responsible for everyone (and everything) else - I had to save them. But, what made me think I was so important that I would be in charge of everyone else? And, how important did I think I was that the world couldn't get along without me helping them out?
That may or may not apply to anyone else, but it surely did to me. I've learned that it's OK to apply the same rules of forgiveness to myself that I apply to others. I'd not expect ANYONE to live by the rules I made myself live by. I set myself up to an expectation that wasn't realistic. It was so hard to see the paradox that in doing so, I'd also set myself up as the most important person in my world. Yet, if you'd ask me, I'd have said I wasn't important at all.
Not sure any of that made any sense. It took lots of meetings before I "got" what I was doing to myself....and others....with my behavior. By posting this, I am not saying this applies to anyone else here - just saying what happened to me.
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.
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maxietobias
- Posts: 22
- Joined: Sat Feb 23, 2008 11:46 pm
- Location: Washington State
Being in a funk
What a great group this is!! I don't have fibro---I have Polymyalgia Rheumatica---what a mouthful. I also have sleep apnea and have to use a c-pap machine!l So here I am wearing the mask and then I wake up with RLS--off comes the mask as I pace around the house--and on and on through the night!! I have other health problems that interfere with the quality of life but I won't go into that now. I just want Ruby and Lyndarae to know that I feel the same way sometimes. We all are in this together. How great to have this group to come to. Other people don't understand because we may look just fine and Restlesslegs sounds so benign Hope you are feeling better soon.
Ruth
Ruth
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I agree, this is a wonderful group. That's why I stick around.
About the food, I'm going to check into this more and try eliminating just one thing at a time, the first being soda, the second being wheat. Ann has given me information about celiac disease before and while I don't think I have that, I do think cutting out certain foods may make a difference. Something to talk about with the new doc.
You are all so right about learning to say no. First, I'm afraid people won't like me anymore if I don't say yes. Second, Ann it was really brave of you to write that about that "god-type" feeling because that is also where I am coming from. Why do I feel that no one else can do the job? Why do I need to feel so important? Good questions that I need to find answers to.
Now tell me what Polymyalgia Rheumatica is. I use a CPAP machine too, have for a couple of years and still hate it. So many people in a world of hurt...Thanks for being here for me.
About the food, I'm going to check into this more and try eliminating just one thing at a time, the first being soda, the second being wheat. Ann has given me information about celiac disease before and while I don't think I have that, I do think cutting out certain foods may make a difference. Something to talk about with the new doc.
You are all so right about learning to say no. First, I'm afraid people won't like me anymore if I don't say yes. Second, Ann it was really brave of you to write that about that "god-type" feeling because that is also where I am coming from. Why do I feel that no one else can do the job? Why do I need to feel so important? Good questions that I need to find answers to.
Now tell me what Polymyalgia Rheumatica is. I use a CPAP machine too, have for a couple of years and still hate it. So many people in a world of hurt...Thanks for being here for me.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
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cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Oh, Ruby, I am so there with you girlfriend! I hate that your fibro is acting up so bad right now. There is nothing like it when you are so consumed by the fibro issues alone, but add the rls and any other issues and it is just the pits big time!
Knowing you have to get out of bed for work and kids and life is the hardest part of the fibro flareups for me. I just get comfortable (everything is relative here) and I'll be if it isn't time to join the real world again. It's so hard knowing so many people are relying on you in so many different areas of your life and not wanting to let them down. I really think the "I'm the one who needs to do this" syndrome comes from us knowing that we cannot operate at a hundred percent and just know people aren't going to understand so we just buck up and do it anyway and suffer major later.
I wasn't a "yes girl" until after I was blessed with the complications of fibro. I was thinking back to when I used to say no to people and find I had no problem in doing so until I felt I was letting them down in other areas by not being able to do certain things anymore. Just a personal note on the height my "yes girl" days. I've learned to say no to people now, but it is still hard on me to do so.
I am using my cpap machine at night and absolutely hate it. It wouldn't be so bad, as Ruth said, if we didn't have to pull the mask off to walk the floors, then put the mask back on to go to sleep, then pulll the mask off, etc. Traveling with the cpap on airplanes is also a royal pain.
Ruth, a long time ago before my diagnosis settled down into fibro, I was told I had mixed-connective-tissue-disease -- parts of multiple muscle diseases, but not all of any of them. One of the "parts" was polymyalgia (without the rheumatica). I remember the headaches best. They were really hard for me to handle. Fibro also can cause headaches that aren't much fun to go through. With fibro and poly both being muscle disorders, you have a pretty good understanding of what us fibro-maniacs go through. Although, the rheumatica part of your poly is much worse.
I find it amazing that so many of these disorders/diseases seem to accompany each other into our otherwise perfect lifestyles.
I guess if we have one . . . what's one more, right? Wrong!
Well, this has turned into a chapter in a book and that's not what I intended for it to be. Ruby take care of yourself and let us know what the doc tells you -- you've deinitely got to get in sooner. Ruth, it's great having you here and postiing. I hope I get to know you better through the board.
Love and hugs,
Cyndi
Knowing you have to get out of bed for work and kids and life is the hardest part of the fibro flareups for me. I just get comfortable (everything is relative here) and I'll be if it isn't time to join the real world again. It's so hard knowing so many people are relying on you in so many different areas of your life and not wanting to let them down. I really think the "I'm the one who needs to do this" syndrome comes from us knowing that we cannot operate at a hundred percent and just know people aren't going to understand so we just buck up and do it anyway and suffer major later.
I wasn't a "yes girl" until after I was blessed with the complications of fibro. I was thinking back to when I used to say no to people and find I had no problem in doing so until I felt I was letting them down in other areas by not being able to do certain things anymore. Just a personal note on the height my "yes girl" days. I've learned to say no to people now, but it is still hard on me to do so.
I am using my cpap machine at night and absolutely hate it. It wouldn't be so bad, as Ruth said, if we didn't have to pull the mask off to walk the floors, then put the mask back on to go to sleep, then pulll the mask off, etc. Traveling with the cpap on airplanes is also a royal pain.
Ruth, a long time ago before my diagnosis settled down into fibro, I was told I had mixed-connective-tissue-disease -- parts of multiple muscle diseases, but not all of any of them. One of the "parts" was polymyalgia (without the rheumatica). I remember the headaches best. They were really hard for me to handle. Fibro also can cause headaches that aren't much fun to go through. With fibro and poly both being muscle disorders, you have a pretty good understanding of what us fibro-maniacs go through. Although, the rheumatica part of your poly is much worse.
I find it amazing that so many of these disorders/diseases seem to accompany each other into our otherwise perfect lifestyles.
I guess if we have one . . . what's one more, right? Wrong!
Well, this has turned into a chapter in a book and that's not what I intended for it to be. Ruby take care of yourself and let us know what the doc tells you -- you've deinitely got to get in sooner. Ruth, it's great having you here and postiing. I hope I get to know you better through the board.
Love and hugs,
Cyndi
Even when we are by ourselves, we are never truly alone.
My motto: It's MY pitty-party and I'll vent if I want to.
My motto: It's MY pitty-party and I'll vent if I want to.
Hi Ruth and welcome to this group. You have found a wonderful and supportive group. I do not have polymyalgis Rheumatica and cannot give any input on that; however I do have rls and have had it for over 20+ yrs so can related to that
You may want to go to the forum New To RLS as there is a good sticky post called "Managing RLS. There is an excellent article from the Mayo Clinic Algorithm. It is definitely well worth reading. Another good site is www.rlshelp.org Also reading alot of the other posts is very helpful as there is a fountain of knowledge and just one someone may say just the right thing that you are looking for.
We chat every Monday night at 7pm az. time and it would be either 8 or 9pm depending on where you live. I hope that you join us as we learn from each other and we are there to support and educate each other as much as possible.
Again, welcome and please keep us posted on how you are doing. We really do care.
You may want to go to the forum New To RLS as there is a good sticky post called "Managing RLS. There is an excellent article from the Mayo Clinic Algorithm. It is definitely well worth reading. Another good site is www.rlshelp.org Also reading alot of the other posts is very helpful as there is a fountain of knowledge and just one someone may say just the right thing that you are looking for.
We chat every Monday night at 7pm az. time and it would be either 8 or 9pm depending on where you live. I hope that you join us as we learn from each other and we are there to support and educate each other as much as possible.
Again, welcome and please keep us posted on how you are doing. We really do care.
Charlene
Taking one day at a time
Taking one day at a time
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maxietobias
- Posts: 22
- Joined: Sat Feb 23, 2008 11:46 pm
- Location: Washington State
Happy to have found this group
I have had RLS for many years and have been on Mirapex. I started out taking one .5 tablet and now I am to the maximum allowed. I take 2 tablets 3 times a day and it is working. However I've been reading that this is called augmentation and is not a good thing! I haven't seen my neurologist for 3 years so tomorrow I will call for an appointment. If this dose fails---yikes!! I have RLS in my arms as well as legs. And I have it all the time, not just at night. Polymyalgia Rheumatica--PMR is "pain in many muscles". Mine is in hips and thighs mostly. The problem many of us have is that we have all these other conditions to cope with and then we have RLS on top of it. I have diabetes, sleep apnea, osteoarthritis,high blood pressure, increased cholesterol--etc. etc. Sometimes they all act up at once--Grrr.
Ruth
Ruth
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cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Ruth, did you say the mirapex is working? If so, then you may not be augmenting on it. I started at .25 mg and stayed there or a year and a half. Then my legs started earlier in the evenings, my doctor upped my dosage to .5 mg. I was at that level or about 4 months and my legs started doing the early evenings thing again.
My doctor had told me that I could keep upping my dose until I reached a maximum of 3 mg a day. I had started to take another .25 mg during the day as my symptoms kept getting earlier and earlier. Then I found this web site and learned about augmenting. See, even though I was upping my dosage of mirapex my symptoms remained. In fact, they got worse. Until, now, I have rls 24/7 and average about 6-8 severe episodes a day.
Of course, the optimum goal should be to never augment. Hopefully you are not doing so now and can avoid it in the future. It is a good idea to make the appointment with your neurologist as you should have regular contact with a physician who follows your care. The main reason is that if you do have an issue or problem, you don't have to worry about bringing the physician up to date, and your records are complete in the event there is an emergency.
Like you, I have multiple issues with my health, including sleep apnea, diabetes, cervical and lumbar herniated discs, fibromyalgia, and rls. We seem to have more than one of these in common. I hope you are able to pick out what you need from my rambling here.
Let us know how you are doing and what your doctor says.
Cyndi
My doctor had told me that I could keep upping my dose until I reached a maximum of 3 mg a day. I had started to take another .25 mg during the day as my symptoms kept getting earlier and earlier. Then I found this web site and learned about augmenting. See, even though I was upping my dosage of mirapex my symptoms remained. In fact, they got worse. Until, now, I have rls 24/7 and average about 6-8 severe episodes a day.
Of course, the optimum goal should be to never augment. Hopefully you are not doing so now and can avoid it in the future. It is a good idea to make the appointment with your neurologist as you should have regular contact with a physician who follows your care. The main reason is that if you do have an issue or problem, you don't have to worry about bringing the physician up to date, and your records are complete in the event there is an emergency.
Like you, I have multiple issues with my health, including sleep apnea, diabetes, cervical and lumbar herniated discs, fibromyalgia, and rls. We seem to have more than one of these in common. I hope you are able to pick out what you need from my rambling here.
Let us know how you are doing and what your doctor says.
Cyndi
Even when we are by ourselves, we are never truly alone.
My motto: It's MY pitty-party and I'll vent if I want to.
My motto: It's MY pitty-party and I'll vent if I want to.