RLS and Fibromyalgia/CFS Combination
-
ViewsAskew
- Moderator
- Posts: 16581
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Lucky for me (I suppose) is that I am easily affected by it. BUt, that's also the problem. Just one cup of black tea two days in a row, and I go through a withdrawal headache the next day if I don't have it. Since I don't want or need it everyday, it just doesn't work for me very well.
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.
Cyndi, yeah, we will lovingly take that offer of another group leader in Texas.
I don't think too many understand how far "across town" can really be in Houston or Dallas. And your Houston group leader is such a dear lady. Helen was such a great help to me, as was Barbara in San Antonio.
Corrie, I'm sorry to hear that things are not working well. I was there last year and hoped and prayed it was the trama of surgery, you know, anything but an escalation! I hope your doc finds something of a cocktail that helps and soon.
I should have PMed or emailed you a long time ago, when my doc put me on Oxy, it was the extended release form and I really didn't do that well, without something to take inbetween it kicking in or running out. It did seem to lag on when it kicked in, in the form of fatigue the next day...UGh without the relief it should have provided.
You know I remember asking Jumpy (Cyndi he was our guru of research long ago.) if one day we would all end up with the same pill, the RLS pill.
RLS control, pain management, something to sleep and then something to wake up with......ok, maybe a night time/ daytime pill, so two.
He didn't seem to think it would go over in our commnuity, seems he is right. However, it does seem to fit our bill. My sister in law gets Provigil, she has MS and RLS as well. So many steroids that have bad side effects and the lack of real healing sleep, they let her take it.
She's offered me one before, on a trip I think.....I said no, as I was too frightened to try. It made me think of a huge dose of caffiene and that was not on my ok list.
You know a little sleep and for me some pain management and I can go a long way. No, I'm not totally a hostage to my home, but there are many days I am.
I wish we could get across to the docs that we need a real life, past just what we can do......CFS, MS, RLS, as many ssssss **** there are, you'd think giving someone a life back would be worth the effort. Now if our bodies would play nice that would help too.
Corrie, I have a "have to" thing on Wed and Fri. & Sat. this week. I will take you with me. Hockey game on Wed. UGH, the gore, but front row seats, with long time friends. I'll not take pictures there and will hold my drink, from what I have heard they slam those walls like bulls. I love hockey. It's just American football with weapons. LOL.
But Fri. and Sat. are or will be in part for you my dear.
Its a benefit my hubby and I are working for, Limbs For Life (an awesome charity that helps those in need of bionic limbs), and a grand ball on Sat. with masks and all. I will medicate well, so that I can fair well in the shoes, that go with the gown. And in my pocket or purse, I shall carry your name and take a few pictures. You can travel out with me darling! LOL All the while you think of me at home in front of this screen and in my fuzzy chenille robe.
Think good thoughts for me, I'll be trying to behave and not try to educate every doc there about RLS. LOL
Cyndi, if you need a letter for your paperwork to become a leader, let me know. I'd be honored to write one for you. And I sure hope you talked to Ruby, she does know her stuff.
OH, one thing about RLS vs Firbo pain, if you have pain, not that I can think you said or not, right now.
A long time, here on the board as many of us were in the new to RLS stage and asking tons of questions we did figure out one thing.
RLS pain is predictable and normally in the same places everytime. For me almost the same time of day to the minute, but it never moves around.
Fibro pain is moving and not on a schedule.
I'm not sure if that helps you, but I hope so.
Hugs
Lynne
I don't think too many understand how far "across town" can really be in Houston or Dallas. And your Houston group leader is such a dear lady. Helen was such a great help to me, as was Barbara in San Antonio.
Corrie, I'm sorry to hear that things are not working well. I was there last year and hoped and prayed it was the trama of surgery, you know, anything but an escalation! I hope your doc finds something of a cocktail that helps and soon.
I should have PMed or emailed you a long time ago, when my doc put me on Oxy, it was the extended release form and I really didn't do that well, without something to take inbetween it kicking in or running out. It did seem to lag on when it kicked in, in the form of fatigue the next day...UGh without the relief it should have provided.
You know I remember asking Jumpy (Cyndi he was our guru of research long ago.) if one day we would all end up with the same pill, the RLS pill.
RLS control, pain management, something to sleep and then something to wake up with......ok, maybe a night time/ daytime pill, so two.
He didn't seem to think it would go over in our commnuity, seems he is right. However, it does seem to fit our bill. My sister in law gets Provigil, she has MS and RLS as well. So many steroids that have bad side effects and the lack of real healing sleep, they let her take it.
She's offered me one before, on a trip I think.....I said no, as I was too frightened to try. It made me think of a huge dose of caffiene and that was not on my ok list.
You know a little sleep and for me some pain management and I can go a long way. No, I'm not totally a hostage to my home, but there are many days I am.
I wish we could get across to the docs that we need a real life, past just what we can do......CFS, MS, RLS, as many ssssss **** there are, you'd think giving someone a life back would be worth the effort. Now if our bodies would play nice that would help too.
Corrie, I have a "have to" thing on Wed and Fri. & Sat. this week. I will take you with me. Hockey game on Wed. UGH, the gore, but front row seats, with long time friends. I'll not take pictures there and will hold my drink, from what I have heard they slam those walls like bulls. I love hockey. It's just American football with weapons. LOL.
But Fri. and Sat. are or will be in part for you my dear.
Its a benefit my hubby and I are working for, Limbs For Life (an awesome charity that helps those in need of bionic limbs), and a grand ball on Sat. with masks and all. I will medicate well, so that I can fair well in the shoes, that go with the gown. And in my pocket or purse, I shall carry your name and take a few pictures. You can travel out with me darling! LOL All the while you think of me at home in front of this screen and in my fuzzy chenille robe.
Think good thoughts for me, I'll be trying to behave and not try to educate every doc there about RLS. LOL
Cyndi, if you need a letter for your paperwork to become a leader, let me know. I'd be honored to write one for you.
And I sure hope you talked to Ruby, she does know her stuff.
OH, one thing about RLS vs Firbo pain, if you have pain, not that I can think you said or not, right now.
A long time, here on the board as many of us were in the new to RLS stage and asking tons of questions we did figure out one thing.
RLS pain is predictable and normally in the same places everytime. For me almost the same time of day to the minute, but it never moves around.
Fibro pain is moving and not on a schedule.
I'm not sure if that helps you, but I hope so.
Hugs
Lynne
-
cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Lynne,
Thanks so much for your kinds words. I faxed my paperwork in to the RLS Foundation on Feb. 11th. I gave them my references, etc. I haven't heard from them yet . . . don't know how long it takes for them to get the references back. Then, don't know what they next step is. They said it takes approximately 6 weeks to complete the process. If I don't hear anything by the end of the week I'm going to give them a call. Thank you for your offer for a letter for me. If I need one, you will be the first person I ask.
I did PM Rubyslipper yesterday and she got right back to me. We messaged back and forth and then talked on the phone. It is so crazy, her medical history with FMS matches mine detail by detail. We even have the same medical supply vendor. I know I've found a good friend in her and she in me. Thanks so much for telling me about her . . . it was really nice to share information back and forth and know I'm not crazier than I thought I was.
This board is so awesome, I don't know what I ever did without it. And, I don't plan on finding out.
Well, going to the chat room . . . uh, oh, I'm late!
Take care,
Cyndi
Thanks so much for your kinds words. I faxed my paperwork in to the RLS Foundation on Feb. 11th. I gave them my references, etc. I haven't heard from them yet . . . don't know how long it takes for them to get the references back. Then, don't know what they next step is. They said it takes approximately 6 weeks to complete the process. If I don't hear anything by the end of the week I'm going to give them a call. Thank you for your offer for a letter for me. If I need one, you will be the first person I ask.
I did PM Rubyslipper yesterday and she got right back to me. We messaged back and forth and then talked on the phone. It is so crazy, her medical history with FMS matches mine detail by detail. We even have the same medical supply vendor. I know I've found a good friend in her and she in me. Thanks so much for telling me about her . . . it was really nice to share information back and forth and know I'm not crazier than I thought I was.
This board is so awesome, I don't know what I ever did without it. And, I don't plan on finding out.
Well, going to the chat room . . . uh, oh, I'm late!
Take care,
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.
Cyndi
I am SO glad you got in touch with Ruby. I knew you'd love her! She's so great, so free to give of herself--to share what's she's learned---and so willing to help others. I get the strong impression you are the same kind of gal, Cyndi.
I hope everything works out for you!
Hugs
Jan
I am SO glad you got in touch with Ruby. I knew you'd love her! She's so great, so free to give of herself--to share what's she's learned---and so willing to help others. I get the strong impression you are the same kind of gal, Cyndi.
I hope everything works out for you!
Hugs
Jan
No one is alone who had friends.
Caffeine is really something that really sets my rls off. I am ok if I take it in the morning but after 4 or 5 pm lookout
Now today (and no caffeine) I was at the dentist getting my teeth cleaned and when she was finished cleaning I was waiting for the dentist to come in and check things out and all of a sudden the ole legs started. It was wierd maybe laying for that length of time and then we went to dinner tonight with some friends and at the end of dinner I felt my legs starting to go and then I got up to leave and they were fine. What a wierd thing this rls is.
Now today (and no caffeine) I was at the dentist getting my teeth cleaned and when she was finished cleaning I was waiting for the dentist to come in and check things out and all of a sudden the ole legs started. It was wierd maybe laying for that length of time and then we went to dinner tonight with some friends and at the end of dinner I felt my legs starting to go and then I got up to leave and they were fine. What a wierd thing this rls is.
Charlene
Taking one day at a time
Taking one day at a time
-
cornelia
Hi becat, thanks for your words adressed to me, hope you are a bit better, but well, if that is really going to happen with us?
I'm still on a low dose of Oxy, but doubt very much if it will help if I take more. In the beginning it was so nice. For the first time in years my hubby and I could sleep very close to each other. Before we slept both on the rim(?) of the bed, as far away s possible from each other because my arms could hit him real hard. I see that my circadian rythm is changing: it is of no use if I go to bed before 0300. After that I sleep until 9-ish, an hour later than before. Am I tired the next day? No. Sleepy? No. But my RLS is bad during the day. If I add 0.25 mg Requip, I sleep at 0200 but with a better quality and with less RLS during the day. Anyway: will go on with experimenting. a lifelong battle.
About fibro: I think that dr B recommends Lyrica for it, as it helps RLS as well.
I'm going to do some household chores, it's morning here and I hope that all of you in the USA are sleeping soundly now.
Corie
I'm still on a low dose of Oxy, but doubt very much if it will help if I take more. In the beginning it was so nice. For the first time in years my hubby and I could sleep very close to each other. Before we slept both on the rim(?) of the bed, as far away s possible from each other because my arms could hit him real hard. I see that my circadian rythm is changing: it is of no use if I go to bed before 0300. After that I sleep until 9-ish, an hour later than before. Am I tired the next day? No. Sleepy? No. But my RLS is bad during the day. If I add 0.25 mg Requip, I sleep at 0200 but with a better quality and with less RLS during the day. Anyway: will go on with experimenting. a lifelong battle.
About fibro: I think that dr B recommends Lyrica for it, as it helps RLS as well.
I'm going to do some household chores, it's morning here and I hope that all of you in the USA are sleeping soundly now.
Corie
-
The Artist in the Mirror
- Posts: 15
- Joined: Sat Aug 09, 2008 8:50 pm
- Location: east coast
- Contact:
My thumb's in the combination pie as well.
I was diagnosed with CFS back in 2004 and have figured that the aches and pains that have been slowly creeping into my life are due to an inheritance of dear Fibro.
I DONT have PLMD ... which for a lot of people is hard to understand. I just have good old refractory RLS.
This past week has been one full of stress and pain and ultimately a very long stint of RLS that I could not get control of for a number of days. As a result, the Fibro/CFS kicked in as well, and then just to top my week off, I scored the flu ... again.
My current job (I work in a bookstore) has me on my feet for anywhere between 4 and 6 hours, 4 days a week. At first, the pain in my legs and hips was almost unbearable until a friend came to my aid with a pair of industrial insoles for my shoes. Wow ... it was like walking on air! Have had very few problems with leg/hip pain since and it's just my back and shoulders that play up now.
So, yeah, RLS, CFS and Fibro certainly go hand in hand around here.
It was either Cyndi who posted a heap of links about Fibro on my thread; which I'm still working my way through when I get time ... feel free to check out the links she posted here
I'll shuddup now.
Love to all
I was diagnosed with CFS back in 2004 and have figured that the aches and pains that have been slowly creeping into my life are due to an inheritance of dear Fibro.
I DONT have PLMD ... which for a lot of people is hard to understand. I just have good old refractory RLS.
This past week has been one full of stress and pain and ultimately a very long stint of RLS that I could not get control of for a number of days. As a result, the Fibro/CFS kicked in as well, and then just to top my week off, I scored the flu ... again.
My current job (I work in a bookstore) has me on my feet for anywhere between 4 and 6 hours, 4 days a week. At first, the pain in my legs and hips was almost unbearable until a friend came to my aid with a pair of industrial insoles for my shoes. Wow ... it was like walking on air! Have had very few problems with leg/hip pain since and it's just my back and shoulders that play up now.
So, yeah, RLS, CFS and Fibro certainly go hand in hand around here.
It was either Cyndi who posted a heap of links about Fibro on my thread; which I'm still working my way through when I get time ... feel free to check out the links she posted here
I'll shuddup now.
Love to all
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!