Ann, when reading again about your pains and Jan's and Penquinrocks's I must admit that mine is not as bad as yours. I have it only after 1800 and I am very, very lucky that most of the times I sleep about 7 hours. I go to bed with thrashing arm (not legs right now) and after 30 min. of thrashing they suddenly stop and I fall asleep. The Neurontin is wonderful for sleeping. I don't want to stop it. I agree with something you said in another thread that people with severe RLS nedd cocktails. Now, Requip didn't work on its own but adding Neurontin was a godsend. I have a life now, albeit living like a 80 year old (LOL). Don't know how long this cocktail will do the trick. I don't want to take Tramadol at night, because I need it badly during the day and I want to be very careful with the dose as I want to be long on it as it gives me some energy.
Well, following your progress ladies
Corrie
In incredible pain - what the ^%$@@!
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Penguinrocks
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I've been the recipient of Becat's Moon Gift, too
and isn't it wonderful, but let me give you another one-- Maybe not quite the same, but it has helped me also. The new group I belong to, the one CherBear is in with me, has told me the following: Don't compare your pain with anyone else's. Pain is pain. It isn't fair to you to compare. It isn't a contest. Chronic pain is horrible. It wears on the body and soul. Everyone's pain tolerance is different and that's okay. There will ALWAYS be someone who is worse off than you, but that doesn't mean you are not in pain.
These are not the exact words they used, or in the exact order, or not necessarily in the exact way they were used. But, I have felt tremendous guilt because so many of the people I have met are dealing with multiple conditions: Lupus, Rheumatoid Arthritis, Cancer, RLS, back problems, spine problems, things I cannot even pronounce or spell, MS. Many of these people have been housebound for years and are in wheelchairs. Can you imagine how I felt (and still feel) when I dare complain? But, you cannot imagine how compassionate these people are. Of course, they are no different than you are here. I guess what I'm saying is there are so many conditions, syndromes, etc. out there, it just makes me sick. I have no idea what I'm facing. It may be fibro, just like my former neuro said, or I may be facing something I didn't imagine, that I really don't want to think about right now. But, I know I've got the support of my cyber friends, which I WILL need. And, so do you, Penguin, and Ann, and Corrie, AND BECAT and Sara, and CherBear, and all of the rest of you on here. If I've learned nothing else, I've learned that we need each other and I appreciate all of you so much. I'm here for all of you any time. And I thank you Becat for sharing your MOON!
Love
Jannie
These are not the exact words they used, or in the exact order, or not necessarily in the exact way they were used. But, I have felt tremendous guilt because so many of the people I have met are dealing with multiple conditions: Lupus, Rheumatoid Arthritis, Cancer, RLS, back problems, spine problems, things I cannot even pronounce or spell, MS. Many of these people have been housebound for years and are in wheelchairs. Can you imagine how I felt (and still feel) when I dare complain? But, you cannot imagine how compassionate these people are. Of course, they are no different than you are here. I guess what I'm saying is there are so many conditions, syndromes, etc. out there, it just makes me sick. I have no idea what I'm facing. It may be fibro, just like my former neuro said, or I may be facing something I didn't imagine, that I really don't want to think about right now. But, I know I've got the support of my cyber friends, which I WILL need. And, so do you, Penguin, and Ann, and Corrie, AND BECAT and Sara, and CherBear, and all of the rest of you on here. If I've learned nothing else, I've learned that we need each other and I appreciate all of you so much. I'm here for all of you any time. And I thank you Becat for sharing your MOON!
Love
Jannie
No one is alone who had friends.
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ViewsAskew
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The pain is happily gone. I didn't figure it out for a few days, and by that time I had the chills, was vomiting, had a headache, and the shakes. It wasn't the Mirapex withdrawal, it was the Klonopin. By mistake, I stopped taking it when I started the methadone. I just looked at the bottle on the second night of the methadone and though, "Shoot, I don't need this anymore, it was to help the Mirapex and I'm not taking that." So I put it away.
Of course, the first thing anyone should do when stopping a med is ask their doctor. I just didn't think! Stopping a benzo can be very, very difficult and takes months of tapering to accomplish. I was able to start taking it again, following doctor's advice, and have a plan for tapering off of it. I'm not 100% yet, but I sure feel better than I did. And the hip, back and thigh pain is completely gone.
I'm embarassed to tell this story. If I didn't think it was important, I would have kept it to myself! Hopefully no one else will make the same mistake.
Ann
Of course, the first thing anyone should do when stopping a med is ask their doctor. I just didn't think! Stopping a benzo can be very, very difficult and takes months of tapering to accomplish. I was able to start taking it again, following doctor's advice, and have a plan for tapering off of it. I'm not 100% yet, but I sure feel better than I did. And the hip, back and thigh pain is completely gone.
I'm embarassed to tell this story. If I didn't think it was important, I would have kept it to myself! Hopefully no one else will make the same mistake.
Ann
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Kris
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My RLS is like this without Mirapex
My RLS is like this - constant - what I'd call severe pain - wakes me up, makes me CRY - without the mirapex. It wasn't always like this - but I had a severe injury to my foot - now have an osteochondral defect in one and severe nerve damage in it as well. Getting up, walking around is just not an option for me. THe RLS mutated - its crazy, its a lot of the afternoon and very bad in the evening.
The Mirapex has been a livesaver - I was almost totally disabled by the pain! It would HURT me to walk. Exercise actually makes mine worse. I'd try to stretch and rub it - massaging helped a bit, but darn you can't constantly rub yourself all the time.
I never got it in my Right hand, but my left hand has it. That hand was broken - I don't know if that affected it or not, but I have it very bad in my left hand. Its not carpal tunnel - its definitely the RLS. Typing a lot bothers it still. Its actually worse than my legs. I'm allways turning my arm upside down and stretching and rubbing it.
Drives me BONKERS. It HURTS.
The Mirapex has been a livesaver - I was almost totally disabled by the pain! It would HURT me to walk. Exercise actually makes mine worse. I'd try to stretch and rub it - massaging helped a bit, but darn you can't constantly rub yourself all the time.
I never got it in my Right hand, but my left hand has it. That hand was broken - I don't know if that affected it or not, but I have it very bad in my left hand. Its not carpal tunnel - its definitely the RLS. Typing a lot bothers it still. Its actually worse than my legs. I'm allways turning my arm upside down and stretching and rubbing it.
Drives me BONKERS. It HURTS.
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IanFraughton
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Hi girls,
Sorry to hear your all having a bad time with pain lately. Here's a big hug for all of you (((((((all of you))))))
I've been having a bad time with my legs too but I'm certain its all the biking I've been doing. Took myself off the Amitriptyline and started to feel better, realized I probably should of weaned myself off of it but didn't experience any side effects luckily.
I'm going to ask my doctor about Mirapex next time I make an appointment. Been taking oxazapam instead of Amitriptyline, which knocks me out but don't seem to go under deep enough although I must admit I feel a little more rested than I have in a long time. I wasn't dx them, my friend got them for me as I wanted to try different drugs for awhile to see if they would help, but I know my doc won't dx them for me so I will have to convince him that I need stronger sleep meds than he has been prescribing me. Been on Trazodone, Cloral Hydrate and Amitriptyline. Anyone got any suggestions for any others they been on.
Peace
Ian
Sorry to hear your all having a bad time with pain lately. Here's a big hug for all of you (((((((all of you))))))
I've been having a bad time with my legs too but I'm certain its all the biking I've been doing. Took myself off the Amitriptyline and started to feel better, realized I probably should of weaned myself off of it but didn't experience any side effects luckily.
I'm going to ask my doctor about Mirapex next time I make an appointment. Been taking oxazapam instead of Amitriptyline, which knocks me out but don't seem to go under deep enough although I must admit I feel a little more rested than I have in a long time. I wasn't dx them, my friend got them for me as I wanted to try different drugs for awhile to see if they would help, but I know my doc won't dx them for me so I will have to convince him that I need stronger sleep meds than he has been prescribing me. Been on Trazodone, Cloral Hydrate and Amitriptyline. Anyone got any suggestions for any others they been on.
Peace
Ian
I call my pacing the "Waltz of the Damned". Anyone care to dance...?
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Kris
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MY RLS, when unmedicated, feels like a deep ache - like cold broken bones sometimes. It used to make me cry at night. I thought I had sciatica, because a lot of times it would burn down my leg from my hip,and my butt would hurt.
I think - don't know - but I'm pretty sure I have primary RLS, but also it has become worse with neuropathy in my left foot and lower leg. It mutated when I spent too much time in a cast and got very painful, but I didn't even know what RLS was.
The mirapex works! But yes - RLS pain can be very bad - as bad as a broken bone I'd say, but worse in a way because you don't know what is going on, it is better in the morning then gets worse and worse until you are waking up crying if you CAN go to sleep.
It had to be my RLS though, the Mirapex works like a charm.
I think - don't know - but I'm pretty sure I have primary RLS, but also it has become worse with neuropathy in my left foot and lower leg. It mutated when I spent too much time in a cast and got very painful, but I didn't even know what RLS was.
The mirapex works! But yes - RLS pain can be very bad - as bad as a broken bone I'd say, but worse in a way because you don't know what is going on, it is better in the morning then gets worse and worse until you are waking up crying if you CAN go to sleep.
It had to be my RLS though, the Mirapex works like a charm.
Hi Kris
Hi Kris,
I'm sorry that you had to go through that. But I am so glad to hear someone else say it about the time in a cast.
I was a milder RLSer up until 1995 when I broke my leg/ankle/foot. I have often thought that changed my RLS life forever.
I was able to handle the pain of the broken bones far better with cal/mag and vitamin C. never like pain medications.
But somewhere down the line both legs hurt so badly, like you, I just cried. Never slept. Lived to snuggle up to heating pads, fireplaces, hot baths.......
It was like a button was pushed and I never went back to mild.
Crazy to hear someone else say that. '
Thank you for your post.
I'm sorry that you had to go through that. But I am so glad to hear someone else say it about the time in a cast.
I was a milder RLSer up until 1995 when I broke my leg/ankle/foot. I have often thought that changed my RLS life forever.
I was able to handle the pain of the broken bones far better with cal/mag and vitamin C. never like pain medications.
But somewhere down the line both legs hurt so badly, like you, I just cried. Never slept. Lived to snuggle up to heating pads, fireplaces, hot baths.......
It was like a button was pushed and I never went back to mild.
Crazy to hear someone else say that. '
Thank you for your post.
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Kris
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Mine was so bad, I once went to ER at 1 am. I thought I had bone cancer. Of course, they didn't do a darn thing for me. My blood pressure, usually fine - was 180/110. That was all pain.
I went to the doctor the next morning, totally exhausted and looking haggard. She gave me darvocet and I got some sleep.
It took me close to another year to be diagnoised and put on mirapex. It was a very rough year.
I went to the doctor the next morning, totally exhausted and looking haggard. She gave me darvocet and I got some sleep.
It took me close to another year to be diagnoised and put on mirapex. It was a very rough year.
Ann,
I'm glad you figured out what was causing your pain. It is bad enough to be in pain, yet another thing to live with uncertainty of what is causing it. I have never heard of FM attacking that quickly. It's been my experience that FM kind of sneaks up on its victims. I do want to warn all of you who have chronic conditions. With the FM I usedd to joke that I would probably die from something that I was attributing to being "just FM." People with chronic conditions can not take anything for granted. If you are in pain, get help. If you develop what seems to be a new or heightened symptom, find out what it is.
A couple weeks ago, I thought I just had "another migraine." It wasn't. I had a cerebral hemmorhage. I still don't know what caused it. There was too much blood to see on the MRI whether there is a tumor beneath the pool of blood. I'll have further tests around the first of the month.
Elf
I'm glad you figured out what was causing your pain. It is bad enough to be in pain, yet another thing to live with uncertainty of what is causing it. I have never heard of FM attacking that quickly. It's been my experience that FM kind of sneaks up on its victims. I do want to warn all of you who have chronic conditions. With the FM I usedd to joke that I would probably die from something that I was attributing to being "just FM." People with chronic conditions can not take anything for granted. If you are in pain, get help. If you develop what seems to be a new or heightened symptom, find out what it is.
A couple weeks ago, I thought I just had "another migraine." It wasn't. I had a cerebral hemmorhage. I still don't know what caused it. There was too much blood to see on the MRI whether there is a tumor beneath the pool of blood. I'll have further tests around the first of the month.
Elf
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ViewsAskew
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Elf,
I was very lucky. Not only did I figure out what it was, but there was a relatively easy fix. Thank you for your insights; I'm sure that they will help many of us in the future. I know that sometimes I start to feel like the boy who cried 'wolf!" My DH even more so; his celiac disease has caused some strange symptoms that are never identified. He's been in the emergency room three times thinking he's having a heart attack. It's always 'nothing.' Each time you feel less sure about going as you're certain it's 'nothing.' But, as you have said, you should always go and never assume.
What have they told you so far about the hemorrage, i.e. likely causes, prognosis, etc.? The waiting can be miserable. I hope you are least feeling well in the wake of it and wish you the best of outcomes.
Ann
I was very lucky. Not only did I figure out what it was, but there was a relatively easy fix. Thank you for your insights; I'm sure that they will help many of us in the future. I know that sometimes I start to feel like the boy who cried 'wolf!" My DH even more so; his celiac disease has caused some strange symptoms that are never identified. He's been in the emergency room three times thinking he's having a heart attack. It's always 'nothing.' Each time you feel less sure about going as you're certain it's 'nothing.' But, as you have said, you should always go and never assume.
What have they told you so far about the hemorrage, i.e. likely causes, prognosis, etc.? The waiting can be miserable. I hope you are least feeling well in the wake of it and wish you the best of outcomes.
Ann
Good to see you
Hi Ann, Hi Elfrieda........
Elfrieda, it's good to see your name. Your always missed.
I'm sorry to here about the cerebral hemmorhage.
My Gosh, I would have probably blown it off as a bad miagrane as well.
I will certainly keep you in my thoughts and prayers.
Please do let us know how things are going.
Live it with no regrets, Right?
Elfrieda, it's good to see your name. Your always missed.
I'm sorry to here about the cerebral hemmorhage.
My Gosh, I would have probably blown it off as a bad miagrane as well.
I will certainly keep you in my thoughts and prayers.
Please do let us know how things are going.
Live it with no regrets, Right?
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Guest
Ann,
We won't know until I can have more tests after the blood has been reabsorbed. It could be a tumor, could have been a weak vessel or just a fluke. I am terribly weak. I've been restless and anxious. I'm on anti-anxiety meds now. I HATE PILLS!! I can't do much. I had intended to teach a summer class, but I can't do that. I'm not one to give in much to my illnesses. I've had FM for years and just toughed in out until recently. I'm having trouble admitting that I am not invincible. I am lucky to have good friends and a great husband. I'll bounce back eventually. It's just taking me longer than it usually does this time.
I know what you mean about feeling like crying wolf. It is hard to know, but then there's that old saw about better safe than sorry.
ELF
We won't know until I can have more tests after the blood has been reabsorbed. It could be a tumor, could have been a weak vessel or just a fluke. I am terribly weak. I've been restless and anxious. I'm on anti-anxiety meds now. I HATE PILLS!! I can't do much. I had intended to teach a summer class, but I can't do that. I'm not one to give in much to my illnesses. I've had FM for years and just toughed in out until recently. I'm having trouble admitting that I am not invincible. I am lucky to have good friends and a great husband. I'll bounce back eventually. It's just taking me longer than it usually does this time.
I know what you mean about feeling like crying wolf. It is hard to know, but then there's that old saw about better safe than sorry.
ELF
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Kris
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