RLS LIFE: Drugs, Side Effects & Everything Else
-
Polar Bear
- Moderator
- Posts: 8823
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Nadia, glad you had a successful trip. Excellent news.
Betty
Betty
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
-
cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Hey all
First up ... the flight to Brisbane ... takes just over an hour. I've been having no troubles of late (apart from the occasional rogue thunderstorm)and decided to take 1 x 0.5mg Ropinirole tablet one hour before my flight. My plan worked. Legs were fine, I slept on the plane ... and ... it's the FIRST TIME in FOUR YEARS that i've WALKED off the plane UNAIDED!!! Every flight previously, I've been assisted off either with a walking stick or in a wheelchair.
The flight home was the pretty much the same although I was payin for doin a long stint of "window shopping" and took 2 x panadeine forte along with 1 x 0.5mg Ropinirole before boarding the plane. Troy was so happy to see me walk off the plane ... unaided!
Visit with my sleep doc went exceptionally well. It's been two years since I started seeing her and last week was the FIRST TIME she'd EVER seen me walk through her office door WITHOUT a walking stick! That in itself was a milestone.
It'd been ten long months since I'd seen her and she wanted to know what I'd been up to. Took her through everything from go to woe (even the 8 month thumb saga!). I cringed a bit when I said that i'd done a bit of experimenting, but surprisingly, she said "well, whatever it is, it's working ... so tell me about it!"
We went through what I'm on, what dosages, times, backup plans; the lot ... and at the end of the session she was more than happy to sign off my "experiment" as being a permanent medical regime (... that is ... until ... my brain decides otherwise lol).
What am I on?
Morning 9:00am - 9:30am
- 1 x 10mg Lexapro (NOT for my RLS ... to keep my anxiety under control)
- 1 x Womens Multi Vitamin & Mineral Tablet
- 1 x Womens Iron Plus (she was surprised at this, but I explained that I had changed the brand of contraceptive pill I was on and had been experiencing horrid cramps, so gave the extra iron a go and it seems to be working. N.B. all my iron tests have always come back well within the normal range, but it doesn't hurt to have that bit extra in there!)
Evening 7:00pm - 7:30pm
- 2 x Codeine/Paracetamol 500mg/30mg tablets (the paracetamol issue was something I DID want to discuss, particularly with long term use. She understood my concerns and as it states on the box, 8 tablets/day is the safe recommended dosage. I only take 2 tablets/day, and maybe an extra 2 here and there for an unexpected attack or a migraine, etc which she was happy with. I DID also mention my new GP nearly going where my old GP went with the "drug addict" label. After I'd explained the whole process of actually finding a GP who wouldn't report me to the cops, she said she would include in her letter to him that she has signed off on my daily regime; he is to prescribe the tablets when they are requested; and if he has a problem with that, to take it up with her ... 'nuff said! I've also started a list, which is stuck to the fridge, of any extra tablets that I take e.g. today my chest siezed up like it did when I was rushed to hospital a couple of weeks ago, and I took 2 C/P and noted it, date, time, reason, on my list. That way my caboose is covered. Sucks, but sometimes ya gotta do wat ya gotta do!)
- 1 x 100mcg Thyroxine (for my thyroid; FINALLY had my 2nd blood test done on Friday just gone and am waiting for the results)
- 1 x Contraceptive Pill (dunno why I bother taking it right now. My useless thyroid has screwed up my "monthlies" so bad they don't even match what I'm taking
)
- 1 x Inner Health Plus
Bedtime (10:00pm - 10:30pm
- 1 OR 1 & 1/2 x 2mg Clonazepam (depends on how dopey I am from the previous night)
- 2 x 50mg Amitriptyline (my brain's "off switch")
Yes, I know some of you are looking back through that list and wondering ... "How the heck???" ... Well, the short answer is ... "I don't know!" All I know is that this particular "cocktail" has been working its wonders for over six months now ... and for me, thats a personal best!
For those who are new or relatively new to the board and are wondering why all the excitement ... well ... I have 100% pure chronic primary refractory RLS (no PLMD) ... one neuro had me overdosing on sinemet AND gabapentin ... AT THE SAME TIME! I'm on medications that 99% of RLS patients cant touch ... and cant explain why ... but as the saying goes, "if it ain't broke, don't fix it". I threw about the idea of doing a total DETOX off of EVERYTHING to start from scratch ... and did it. I've wanted to off myself so many times i've lost count. It's been a very long, very hard road, and there are members of this board, this family, whose unconditional love and support, have kept me going, even when I couldn't see the light at the end of the tunnel. I'm so far away from some of the most special people in my life and I wish I could hug every single one of them.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now that I've got all that out, I can finish with this.
I came home from my trip on a REAL high ... Only to be brought back down to earth with an awful, disappointing, betrayal-filled thud ...
I want to talk about it, but dont know who to talk to or where to start, and every time I think about what's happened and happening, I just cry.
It's not to do with Troy and I, we're fine. It's something one of the girls has done ... and she doesn't realise the gravity of the situation, the trail of betrayal and disappointment she's plowing, the severe and utterly devastating consequenses that may eventuate ...
I wish "Murphy" and "The Big Bloke" would just get off my case and give us a break!!!
Sorry to end it that way.
Love n hugs to all
First up ... the flight to Brisbane ... takes just over an hour. I've been having no troubles of late (apart from the occasional rogue thunderstorm)and decided to take 1 x 0.5mg Ropinirole tablet one hour before my flight. My plan worked. Legs were fine, I slept on the plane ... and ... it's the FIRST TIME in FOUR YEARS that i've WALKED off the plane UNAIDED!!! Every flight previously, I've been assisted off either with a walking stick or in a wheelchair.
The flight home was the pretty much the same although I was payin for doin a long stint of "window shopping" and took 2 x panadeine forte along with 1 x 0.5mg Ropinirole before boarding the plane. Troy was so happy to see me walk off the plane ... unaided!
Visit with my sleep doc went exceptionally well. It's been two years since I started seeing her and last week was the FIRST TIME she'd EVER seen me walk through her office door WITHOUT a walking stick! That in itself was a milestone.
It'd been ten long months since I'd seen her and she wanted to know what I'd been up to. Took her through everything from go to woe (even the 8 month thumb saga!). I cringed a bit when I said that i'd done a bit of experimenting, but surprisingly, she said "well, whatever it is, it's working ... so tell me about it!"
We went through what I'm on, what dosages, times, backup plans; the lot ... and at the end of the session she was more than happy to sign off my "experiment" as being a permanent medical regime (... that is ... until ... my brain decides otherwise lol).
What am I on?
Morning 9:00am - 9:30am
- 1 x 10mg Lexapro (NOT for my RLS ... to keep my anxiety under control)
- 1 x Womens Multi Vitamin & Mineral Tablet
- 1 x Womens Iron Plus (she was surprised at this, but I explained that I had changed the brand of contraceptive pill I was on and had been experiencing horrid cramps, so gave the extra iron a go and it seems to be working. N.B. all my iron tests have always come back well within the normal range, but it doesn't hurt to have that bit extra in there!)
Evening 7:00pm - 7:30pm
- 2 x Codeine/Paracetamol 500mg/30mg tablets (the paracetamol issue was something I DID want to discuss, particularly with long term use. She understood my concerns and as it states on the box, 8 tablets/day is the safe recommended dosage. I only take 2 tablets/day, and maybe an extra 2 here and there for an unexpected attack or a migraine, etc which she was happy with. I DID also mention my new GP nearly going where my old GP went with the "drug addict" label. After I'd explained the whole process of actually finding a GP who wouldn't report me to the cops, she said she would include in her letter to him that she has signed off on my daily regime; he is to prescribe the tablets when they are requested; and if he has a problem with that, to take it up with her ... 'nuff said! I've also started a list, which is stuck to the fridge, of any extra tablets that I take e.g. today my chest siezed up like it did when I was rushed to hospital a couple of weeks ago, and I took 2 C/P and noted it, date, time, reason, on my list. That way my caboose is covered. Sucks, but sometimes ya gotta do wat ya gotta do!)
- 1 x 100mcg Thyroxine (for my thyroid; FINALLY had my 2nd blood test done on Friday just gone and am waiting for the results)
- 1 x Contraceptive Pill (dunno why I bother taking it right now. My useless thyroid has screwed up my "monthlies" so bad they don't even match what I'm taking
)
- 1 x Inner Health Plus
Bedtime (10:00pm - 10:30pm
- 1 OR 1 & 1/2 x 2mg Clonazepam (depends on how dopey I am from the previous night)
- 2 x 50mg Amitriptyline (my brain's "off switch")
Yes, I know some of you are looking back through that list and wondering ... "How the heck???" ... Well, the short answer is ... "I don't know!" All I know is that this particular "cocktail" has been working its wonders for over six months now ... and for me, thats a personal best!
For those who are new or relatively new to the board and are wondering why all the excitement ... well ... I have 100% pure chronic primary refractory RLS (no PLMD) ... one neuro had me overdosing on sinemet AND gabapentin ... AT THE SAME TIME! I'm on medications that 99% of RLS patients cant touch ... and cant explain why ... but as the saying goes, "if it ain't broke, don't fix it". I threw about the idea of doing a total DETOX off of EVERYTHING to start from scratch ... and did it. I've wanted to off myself so many times i've lost count. It's been a very long, very hard road, and there are members of this board, this family, whose unconditional love and support, have kept me going, even when I couldn't see the light at the end of the tunnel. I'm so far away from some of the most special people in my life and I wish I could hug every single one of them.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now that I've got all that out, I can finish with this.
I came home from my trip on a REAL high ... Only to be brought back down to earth with an awful, disappointing, betrayal-filled thud ...
I want to talk about it, but dont know who to talk to or where to start, and every time I think about what's happened and happening, I just cry.
It's not to do with Troy and I, we're fine. It's something one of the girls has done ... and she doesn't realise the gravity of the situation, the trail of betrayal and disappointment she's plowing, the severe and utterly devastating consequenses that may eventuate ...
I wish "Murphy" and "The Big Bloke" would just get off my case and give us a break!!!
Sorry to end it that way.
Love n hugs 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!!!
Oh My Aussie Warrior, what an awesome visit with the RLS doc. Good Deal my dear.
I'm proud that your plan about the plane flights went well, and yes, how proud I am for you that you did it all on your on two legs. They are good legs!
I have to love your RLS doc or sleep doc for offering to add a letter to the new GP. That is a doc looking out for her patients and it's worth the travel for that sorta help, for sure.
About the cramping, (sorry guys, men). I suffered for the first 3-4 days for years and years. Your going to laugh at me, but just try soemthing for me.
You know that soap trick everyone wants to work for RLS, well it is the best cramping cure I have ever used. As I won't be anymore, I can still tell you that it works.
Small hotel sixe bar, right on your skin, just under your belly button, tape it if you have to or just wear a tighter pant to hold it in place. I swear they should go away in a matter of minutes, if not sooner.
I know it sounds totally crazy and if it does not work, ok, but just try.
I had the perfect little size bar and kept it for almost a year, before it broke. I use a bar of soap of strained mucles or cramping. Works almost 99% of the time for me.
I know that for RLS, not so much of anything, but for cramps, babe it's right on!
Email me my friend, I'll help if I can, listen and support if I have no good ideas. Kids are just human without the life experience to push them in a positive direction sometimes. I found out early that they make choices for some of the strangest reasons. I'm sure I did plenty of that, as well.
But I hope it calms soon.
Your doing a great job, Nadia, your not only hanging in there, sounds like your winnig a few! Wonderful my drear.
Hugs and the moon is full of love for you,
Lynne
I'm proud that your plan about the plane flights went well, and yes, how proud I am for you that you did it all on your on two legs. They are good legs!
I have to love your RLS doc or sleep doc for offering to add a letter to the new GP. That is a doc looking out for her patients and it's worth the travel for that sorta help, for sure.
About the cramping, (sorry guys, men). I suffered for the first 3-4 days for years and years. Your going to laugh at me, but just try soemthing for me.
You know that soap trick everyone wants to work for RLS, well it is the best cramping cure I have ever used. As I won't be anymore, I can still tell you that it works.
Small hotel sixe bar, right on your skin, just under your belly button, tape it if you have to or just wear a tighter pant to hold it in place. I swear they should go away in a matter of minutes, if not sooner.
I know it sounds totally crazy and if it does not work, ok, but just try.
I had the perfect little size bar and kept it for almost a year, before it broke. I use a bar of soap of strained mucles or cramping. Works almost 99% of the time for me.
I know that for RLS, not so much of anything, but for cramps, babe it's right on!
Email me my friend, I'll help if I can, listen and support if I have no good ideas. Kids are just human without the life experience to push them in a positive direction sometimes. I found out early that they make choices for some of the strangest reasons. I'm sure I did plenty of that, as well.
But I hope it calms soon.
Your doing a great job, Nadia, your not only hanging in there, sounds like your winnig a few! Wonderful my drear.
Hugs and the moon is full of love for you,
Lynne
Lynne my dear, you know i've tried some crazy things (Detox springs to mind almost instantaniously lol) ... so your suggestion of soap is not so out of the ordinary for me.
If I didn't live so far away, I'd still be having craniosacral therapy and meditation sessions every week.
You know I need "grounding" ... just mellow out sitting under a tree in the gardens ... something not everyone understands.
I have a collection of little soaps courtesy of various hotels and will certainly give it a go ... and let you know the results (that is ... if "they" bother even turning up this month ...
)
Love ... hugs ... and sweet moonbeams to you my dear friend
If I didn't live so far away, I'd still be having craniosacral therapy and meditation sessions every week.
You know I need "grounding" ... just mellow out sitting under a tree in the gardens ... something not everyone understands.
I have a collection of little soaps courtesy of various hotels and will certainly give it a go ... and let you know the results (that is ... if "they" bother even turning up this month ...
)
Love ... hugs ... and sweet moonbeams to you my dear friend
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!!!
your detox was no crazier an idea than my quitting oxy ER overnight!
Better to be a bit crazy and open than to be in a bind!
Moonbeams right back to you my Aussie dear!
Oh, and yes, with a good book, the right meds., and among the gardens! I would quietly join you, LOL, who's kiddin' who here? We'd nto crack open a book at all. LOL
Love Lynne
Better to be a bit crazy and open than to be in a bind!
Moonbeams right back to you my Aussie dear!
Oh, and yes, with a good book, the right meds., and among the gardens! I would quietly join you, LOL, who's kiddin' who here? We'd nto crack open a book at all. LOL
Love Lynne
Hehehe ... we'd probably get thrown outta the gardens by the curators for disturbing the peace! That WUD be fun!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Rang my Gatekeeper just before to ask if the results of my thyroid tests had come back. They had ... and they're normal.
GRRRR ... I can guarantee that if I'd had a test three weeks ago when my "monthlies" were outta whack and so was I ... it would've been through the roof!
I hate that!
You KNOW there's something wrong, but they "have to wait the full six weeks" ... bugga the six weeks next time.
**Sigh**
What does one have to do to get a test done when you KNOW that something aint right, right then and there??? Next time I might check myself into the dang hospital and stay there.
Patience ... patience ... patience ... patience ... patience ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Rang my Gatekeeper just before to ask if the results of my thyroid tests had come back. They had ... and they're normal.
GRRRR ... I can guarantee that if I'd had a test three weeks ago when my "monthlies" were outta whack and so was I ... it would've been through the roof!
I hate that!
You KNOW there's something wrong, but they "have to wait the full six weeks" ... bugga the six weeks next time.
**Sigh**
What does one have to do to get a test done when you KNOW that something aint right, right then and there??? Next time I might check myself into the dang hospital and stay there.
Patience ... patience ... patience ... patience ... patience ...
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!!!
Saw a report on a tv program the other night regarding addictive and compulsive actions resulting from the use of DA's.
They mentioned Parkinson's mainly. I watched the whole thing. At the end I was in tears. A LOT of things that have happened since I was first "officially" diagnosed in mid 2003 suddenly all fell in to place and made sense.
Compulsive shopping tops my list ... followed by a bit of gambling (i.e. lottery tickets) ... they mentioned other addictions that I related to as well.
I know the studies have been done or are being done. I've seen the topics pop up around the boards here, but it never clicked ... until now.
I feel utterly ashamed of myself.
That's all i'm saying on that topic for now.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On a different matter ... you can add to my "list" ... Fibromyalgia.
Again ... it's been a culmination of information, memories and current things just falling into place and making sense all at the one time.
Yes, it's inherited.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Going to see my physio this afternoon. Hope I don't burst into tears on the poor bloke. I ache from head to toe ... hair to toenails ... but i'm so tense right now as a result of various circumstances here, that i'm right out of whack and despite the level of pain I know i'm going to cop, my physio is right now, the only way I can get my physical body back into "alingnment" (for want of a better word), so I can continue to function.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No, I don't know how the hell I'm going to convince my Sleep Doc AND my GateKeeper that I really DO have Fibro ... think I'll just have to do up a "connect the dots" thingamybob ... "flowchart" (that's the word I was lookin for lol ... see ... brain fog!!!!) to help tell my story.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What's the saying??? .... "God only gives the biggest challenges to those he knows will able to handle it" ... well ... I'm prayin for a bit of a break between all these challenges right now ... I'm worn out!
They mentioned Parkinson's mainly. I watched the whole thing. At the end I was in tears. A LOT of things that have happened since I was first "officially" diagnosed in mid 2003 suddenly all fell in to place and made sense.
Compulsive shopping tops my list ... followed by a bit of gambling (i.e. lottery tickets) ... they mentioned other addictions that I related to as well.
I know the studies have been done or are being done. I've seen the topics pop up around the boards here, but it never clicked ... until now.
I feel utterly ashamed of myself.
That's all i'm saying on that topic for now.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On a different matter ... you can add to my "list" ... Fibromyalgia.
Again ... it's been a culmination of information, memories and current things just falling into place and making sense all at the one time.
Yes, it's inherited.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Going to see my physio this afternoon. Hope I don't burst into tears on the poor bloke. I ache from head to toe ... hair to toenails ... but i'm so tense right now as a result of various circumstances here, that i'm right out of whack and despite the level of pain I know i'm going to cop, my physio is right now, the only way I can get my physical body back into "alingnment" (for want of a better word), so I can continue to function.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No, I don't know how the hell I'm going to convince my Sleep Doc AND my GateKeeper that I really DO have Fibro ... think I'll just have to do up a "connect the dots" thingamybob ... "flowchart" (that's the word I was lookin for lol ... see ... brain fog!!!!) to help tell my story.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What's the saying??? .... "God only gives the biggest challenges to those he knows will able to handle it" ... well ... I'm prayin for a bit of a break between all these challenges right now ... I'm worn out!
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!!!
My Sweet Nadia,
Ok, one thing at a time, oh wait that does not fit with us! come on a little smile for me? 
Honey I have been up most of the past 4 days now, 3 more days til refill time and can't watse one pill, but they almsot all feel wasted when it's not working. Anyway, If I make little to no sense, love me through it. LOL
I had to get my refill from the doc''s office today (thankfully he has one in my own town now). I slept a solid hour and 35-45 minutes last night and just stayed up til I could drive to the office.
Nope didn't want to, but I needed a face to face with someone. My doc's assit. came out and kindly talked to me. I was so numb (well that feeling if you have been up for days, you know, kinda numb and tunnel vision feeling). Did not even waste time on make up or hair, let them see me in with the dark circles and pasty white from sleep deprivation. i couldnt' have freaked out, and it was a great thing.
I have no idea how far it will take me, but I admitted that I was near self medication and that freaked me out enough to ask for help. It seems to have made a good impact on my own image and on the doc.. I got back honest, thoughtful, and caring questions. AnD, I think maybe help will be on it's way.
My point in telling you this? Because I know that looking back I felt the same way about my shopping or whatever, during my time with Mirapex. But I would not take anything for it. I had to remember that jumpy taught us all to be careful about meds....Know them, know the side effects, realize what might be going on with your meds and your body.
Now tell me just how you are responsible (in full) for everything that has been done up to the point you read those facts about the DAs. You might have known like I did, but it never struck me that I had any problems.
There are things in life that have the ability to take over and take control. You have had more than your share of things going on and trying hard to just live normal as possible. Right? Yeah maybe some money not well spent, but have a giant garage sale. And then lets get our Aussie mate with the heart the size of the country you live in, better, healing, and with a bit of help........I see that you could be the warrior we see in you.
That does not mean that you should not come here and vent, you should. I do, many of us do. It helps me to do so.
But don't line these chickens up for counting just yet, it's added stress, and that you do not need.
Yup I'm with you about having "another invisble disorder, disfunction, dis whatever". I'm in the same spot and even trying to find someone to say, "here, go this way or look here" seems impossible right now.
I am so sorry that you think Fibro is what it is, but I think we have a few of our memebrs that could help you understand the treatments and the disorder as well. I'm still sorry about that one.
What is a Physio? Like a chripractor? I need a good popping as well, but can't lay on my tummy like I need to for the spot in my back that just nags.
But we both know it is not! We have faced the lions before and won. I can't think we both won't again.
I'm so glad I logged on before my prayers, the moon wil be full. Not only for comfort, but for the simple fact that God shows what the purpose is or where the path lightens up a bit. Everything is possible through God in my life, I wil pray the same or more for you tonight, my friend.
I'm hugging you as tight as I can through the computer. As you read this know that I've have put my heart on the screen and it's full of peaceful wishes for you.
And, when your worn out, do what you can well, and ask for help for some of the other, and some can simply be ignored until it's time has come to be dealt with.
Deep breaths, and huge hugs to you,
Lynne
Ok, one thing at a time, oh wait that does not fit with us!
come on a little smile for me?
Honey I have been up most of the past 4 days now, 3 more days til refill time and can't watse one pill, but they almsot all feel wasted when it's not working. Anyway, If I make little to no sense, love me through it. LOL
I had to get my refill from the doc''s office today (thankfully he has one in my own town now). I slept a solid hour and 35-45 minutes last night and just stayed up til I could drive to the office.
Nope didn't want to, but I needed a face to face with someone. My doc's assit. came out and kindly talked to me. I was so numb (well that feeling if you have been up for days, you know, kinda numb and tunnel vision feeling). Did not even waste time on make up or hair, let them see me in with the dark circles and pasty white from sleep deprivation. i couldnt' have freaked out, and it was a great thing.
I have no idea how far it will take me, but I admitted that I was near self medication and that freaked me out enough to ask for help. It seems to have made a good impact on my own image and on the doc.. I got back honest, thoughtful, and caring questions. AnD, I think maybe help will be on it's way.
My point in telling you this? Because I know that looking back I felt the same way about my shopping or whatever, during my time with Mirapex. But I would not take anything for it. I had to remember that jumpy taught us all to be careful about meds....Know them, know the side effects, realize what might be going on with your meds and your body.
Now tell me just how you are responsible (in full) for everything that has been done up to the point you read those facts about the DAs. You might have known like I did, but it never struck me that I had any problems.
There are things in life that have the ability to take over and take control. You have had more than your share of things going on and trying hard to just live normal as possible. Right? Yeah maybe some money not well spent, but have a giant garage sale. And then lets get our Aussie mate with the heart the size of the country you live in, better, healing, and with a bit of help........I see that you could be the warrior we see in you.
That does not mean that you should not come here and vent, you should. I do, many of us do. It helps me to do so.
But don't line these chickens up for counting just yet, it's added stress, and that you do not need.
Yup I'm with you about having "another invisble disorder, disfunction, dis whatever". I'm in the same spot and even trying to find someone to say, "here, go this way or look here" seems impossible right now.
I am so sorry that you think Fibro is what it is, but I think we have a few of our memebrs that could help you understand the treatments and the disorder as well. I'm still sorry about that one.
What is a Physio? Like a chripractor? I need a good popping as well, but can't lay on my tummy like I need to for the spot in my back that just nags.
But we both know it is not! We have faced the lions before and won. I can't think we both won't again.
I'm so glad I logged on before my prayers, the moon wil be full. Not only for comfort, but for the simple fact that God shows what the purpose is or where the path lightens up a bit. Everything is possible through God in my life, I wil pray the same or more for you tonight, my friend.
I'm hugging you as tight as I can through the computer. As you read this know that I've have put my heart on the screen and it's full of peaceful wishes for you.
And, when your worn out, do what you can well, and ask for help for some of the other, and some can simply be ignored until it's time has come to be dealt with.
Deep breaths, and huge hugs to you,
Lynne
-
Polar Bear
- Moderator
- Posts: 8823
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
As lynne says, sounds like you do have a lion to face, I reckon you can do it. There is a strong spirit there.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
My dear sweet Nadia,
Girlfriend, I hurt for you and send you many, many big bear hugs and support.
I'm one of those fibro-maniacs (my joke) Lynne referred to in her post. My fibromyalgia is extremely bad right now so I have not been on the computer much at all. I find that when I've read a post and want to comment/share/etc. I don't have the energy to do so. But, sweetie, you are a priority for me and I have to help you with the fibro issue and your doctor.
While there is no blood test or diagnostic medical test to say, "yes, she definitely has fibromyaligia, just look at her 'something' level." Fibro is elusive as rls is in that respect. But, take heart, Nadia - there is a diagnostic tool your docor can use!
At the end of this post I will list some very good web sites on fibromyalgia. Look specifically for the 18 "trigger points" and their location on your body. You don't need all of the trigger points to be active in your body for you to be diagnosed with fibro. I started years ago (14) with 12 of the trigger points -- I now have all 18. I know . . . I'm soooooo darn special!
The really funny (strange or humorous) thing is that a lot of the meds given for rls are also used for fibro. I used to take neurontin for my fibro and since found out it is for rls too. Also, Lyrica was just approved for fibro not that long ago but the dosage is different for fibro than it is for rls. I currently take 600 mg of Lyrica.
On the other side of the coin - some of the things you can take for fibro you should NOT take for rls. This is a bummer for most fibro-maniac and rls-er combo challenged. I am lucky and do not react to caffeine and some muscle relaxes like most rls-ers do. To bring me out of my last fibro attack my neuro gave me another med, Dolgic. It is a combination of tylenol, caffeine and a muscle relaxer. I take this at the first sign of a fibro migraine.
The thing about fibro pain is that it doesn't respond to "normal" tylenol or ibuprofen or I would own the companies! There are a lot of meds out there a doctor can choose from for the different symptoms of fibro. Like rls, it's trial and error and everyone is different.
I'm of the belief that each disease/disorder/whatever should have one protocol that works on everyone so we can just get on with what's important. Oh, that this were so.
Like Lynne, I can get through anything with God guiding my way. He is my Rock and my Comforter. I pray you will find comfort and strength in the coming days, my friend.
I know I've rambled on and on, just trying to pack it all in for you girlfriend. Okay . . . here are the links I promised you. Go to them and read and print out what you can to take to your doctor when you go. Print especially the trigger point diagram. Let me know how you are doing and what the doctor says. I'll be there with you at the docs - you know the obstinate friend ready to give the doc a big Texas "what for" if he don't do right by you!
Love and hugs,
Cyn
Mayo Clinic link on fibro symptoms and diagnosis http://www.mayoclinic.com/health/fibromyalgia/DS00079
The American College of Rheumatology
http://www.rheumatology.org/public/fact ... _new.asp#4
Fibromyalgia Network
www.fmnetnews.com
National Institute of Arthritis and Musculoskeletal and Skin Diseases
http://www.niams.nih.gov/hi/topics/fibr ... ibrofs.htm
National Fibromyalgia Association
www.fmaware.org
National Fibromyalgia Partnership, Inc.
www.fmpartnership.org
The American Fibromyalgia Syndrome Association, Inc.
www.afsafund.org
Girlfriend, I hurt for you and send you many, many big bear hugs and support.
I'm one of those fibro-maniacs (my joke) Lynne referred to in her post. My fibromyalgia is extremely bad right now so I have not been on the computer much at all. I find that when I've read a post and want to comment/share/etc. I don't have the energy to do so. But, sweetie, you are a priority for me and I have to help you with the fibro issue and your doctor.
While there is no blood test or diagnostic medical test to say, "yes, she definitely has fibromyaligia, just look at her 'something' level." Fibro is elusive as rls is in that respect. But, take heart, Nadia - there is a diagnostic tool your docor can use!
At the end of this post I will list some very good web sites on fibromyalgia. Look specifically for the 18 "trigger points" and their location on your body. You don't need all of the trigger points to be active in your body for you to be diagnosed with fibro. I started years ago (14) with 12 of the trigger points -- I now have all 18. I know . . . I'm soooooo darn special!
The really funny (strange or humorous) thing is that a lot of the meds given for rls are also used for fibro. I used to take neurontin for my fibro and since found out it is for rls too. Also, Lyrica was just approved for fibro not that long ago but the dosage is different for fibro than it is for rls. I currently take 600 mg of Lyrica.
On the other side of the coin - some of the things you can take for fibro you should NOT take for rls. This is a bummer for most fibro-maniac and rls-er combo challenged. I am lucky and do not react to caffeine and some muscle relaxes like most rls-ers do. To bring me out of my last fibro attack my neuro gave me another med, Dolgic. It is a combination of tylenol, caffeine and a muscle relaxer. I take this at the first sign of a fibro migraine.
The thing about fibro pain is that it doesn't respond to "normal" tylenol or ibuprofen or I would own the companies!
There are a lot of meds out there a doctor can choose from for the different symptoms of fibro. Like rls, it's trial and error and everyone is different.
I'm of the belief that each disease/disorder/whatever should have one protocol that works on everyone so we can just get on with what's important. Oh, that this were so.
Like Lynne, I can get through anything with God guiding my way. He is my Rock and my Comforter. I pray you will find comfort and strength in the coming days, my friend.
I know I've rambled on and on, just trying to pack it all in for you girlfriend. Okay . . . here are the links I promised you. Go to them and read and print out what you can to take to your doctor when you go. Print especially the trigger point diagram. Let me know how you are doing and what the doctor says. I'll be there with you at the docs - you know the obstinate friend ready to give the doc a big Texas "what for" if he don't do right by you!
Love and hugs,
Cyn
Mayo Clinic link on fibro symptoms and diagnosis http://www.mayoclinic.com/health/fibromyalgia/DS00079
The American College of Rheumatology
http://www.rheumatology.org/public/fact ... _new.asp#4
Fibromyalgia Network
www.fmnetnews.com
National Institute of Arthritis and Musculoskeletal and Skin Diseases
http://www.niams.nih.gov/hi/topics/fibr ... ibrofs.htm
National Fibromyalgia Association
www.fmaware.org
National Fibromyalgia Partnership, Inc.
www.fmpartnership.org
The American Fibromyalgia Syndrome Association, Inc.
www.afsafund.org
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.
Hey Nadia....
Doggone it!!! I hate to hear about the fibro. I was diagnosed with that, myself, several years ago--but, it turned out to be six herniated discs instead. I really hate to hear about your dx.
You have been through so much. But, I think I've told you this before---you are such a strong young woman (with an old soul!). That's probably little comfort right now. But, as all of your friends above have said, you have such a strength. You have fought so many battles in your young life. I wish I could snap my fingers and make it all go away. I would in a second!
Words seem empty right now. I'm just sad for you. You are a little battle scarred by now, but you've still got a lot of fight in you. I just know it!!!
In the meantime, we'll all take turns rowing YOUR boat, okay? I'm sending you a huge cyber hug, wishing I could give you one in person. Maybe one day, huh? Just remember you are loved by many and we're all here to help you.
Much love
Jan
Doggone it!!! I hate to hear about the fibro. I was diagnosed with that, myself, several years ago--but, it turned out to be six herniated discs instead. I really hate to hear about your dx.
You have been through so much. But, I think I've told you this before---you are such a strong young woman (with an old soul!). That's probably little comfort right now. But, as all of your friends above have said, you have such a strength. You have fought so many battles in your young life. I wish I could snap my fingers and make it all go away. I would in a second!
Words seem empty right now. I'm just sad for you. You are a little battle scarred by now, but you've still got a lot of fight in you. I just know it!!!
In the meantime, we'll all take turns rowing YOUR boat, okay? I'm sending you a huge cyber hug, wishing I could give you one in person. Maybe one day, huh? Just remember you are loved by many and we're all here to help you.
Much love
Jan
No one is alone who had friends.
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ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I've only a minute before my head bobs into the keyboard and I fall fast asleep....
I can't think of a thing to say that hasn't been said and probably better than I could have said it. So, ditto.
I can imagine how hurt you must be over your daughter's actions, whatever they were....those are incredibly hard moments for any parent. While I am not in your shoes and can't know how you feel, you've got my empathy.
I can't think of a thing to say that hasn't been said and probably better than I could have said it. So, ditto.
I can imagine how hurt you must be over your daughter's actions, whatever they were....those are incredibly hard moments for any parent. While I am not in your shoes and can't know how you feel, you've got my empathy.
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.