HI EVERYONE,
I JUST ASKING THAT ALL MEMBERS OF THIS RLS SITE SUPPORT "OUR RESEARCH PROJECT" FOUND IN THE GENERAL TOPIC THREAD.
OUR FRIEND JUMPYOWL IS TRYING TO GET EVERYONE'S INPUT FOR A NEW QUESTIONAIRE TO BE USED AT A LATER DATE. THE INFORMATION WE SHARE WITH HIM, BE IT A QUESTION, AN IDEA, WILL HELP US ALL.
IF YOU WELCOME A NEWCOMER, PLEASE DIRECT THEM TO THE THREAD "ORP" AND AS THEM TO MAKE A SHORT COMMINT BASED SO THAT JUMPYOWL CAN FUTHER IN HIS WORK.
IF YOUR A MEMBER HERE PLEASE TRY TO ADD SOMETHING YOURSELF AS WELL.
THIS IS ALL AN ATTEMP TO FURTHER HELP FIGHT THIS FIGHT OURSELVES. WE ARE A QUICKLY GROWING POPULATION. WE HAVE THE CHANCE TO MAKE SOME CHANGES TOGETHER.
THANKS FOR YOU HELP.
NEW MEMBERS AND CURRENT MEMBERS PLEASE HELP
-
becatTX
list your bio's here
IF YOU WOULD LIKE YOU MAY LIST A SHORT BIO HERE TO FUTHER OUR NEW QUESTIONARE.......................
AGE
SEX
HEALTH PROBLEMS OTHER THAN rls
MEDICATIONS
ETC.
THIS WAY MAYBE JUMPYOWL CAN JUST HIT THIS THREAD WHILE HE'S WORKING ON THIS AND GET SOME IDEA IF THERE IS SOMETHING HE NEEDS TO ADD.
PLEASE DON'T STOP GIVING IDEAS THAT MIGHT HELP IN THE ORP THREAD OF THE GENERAL TOPICS THREAD.
THANKS IN ADVANCE FOR EVERYONE'S HELP............WE CAN FIGHT THIS TOGETHER. WE HAVE A BIGGER FIST WHEN WE STAND AS ONE.
AGE
SEX
HEALTH PROBLEMS OTHER THAN rls
MEDICATIONS
ETC.
THIS WAY MAYBE JUMPYOWL CAN JUST HIT THIS THREAD WHILE HE'S WORKING ON THIS AND GET SOME IDEA IF THERE IS SOMETHING HE NEEDS TO ADD.
PLEASE DON'T STOP GIVING IDEAS THAT MIGHT HELP IN THE ORP THREAD OF THE GENERAL TOPICS THREAD.
THANKS IN ADVANCE FOR EVERYONE'S HELP............WE CAN FIGHT THIS TOGETHER. WE HAVE A BIGGER FIST WHEN WE STAND AS ONE.
-
claradragon
- Posts: 93
- Joined: Wed Jul 21, 2004 5:15 am
- Location: kent,england UK
- Contact:
hi
think this is a good idea as there does seem to be a need for quick reference
here's mine
Age: 34
Sex: Female
Meds: neurontin-currently 300mg per day,tamazepam(restoril)30mg
Symptoms: Parathesia in both legs and arms mostly on the left and in the left side of torso(just about everywhere when it gets really bad)
Pain in my left arm,leg and torso
pain "points" that move from place to place
pins and needles
numbness
insomnia
nausea/vomiting
cramp
fatigue
frustration
can't sit still for more than a few minutes
hot/cold feet
muscle ripples/bubbling running through randomly
depression
low blood pressure
low B12 (300-400)
twitchy/wibbly wobbly
bangs/lights going off in my head when i try to settle to sleep complimented with major all over body twitch
crawlies in the ears
some times when i have slept i wake up in a very strange contorted position and extremely stiff(more so than usual)
it's like i'm quivering inside when i'm at rest...all trembly
vivid dreams-sometimes i have to check to make sure what is real and what was a dream
Is this what you were looking for?
think this is a good idea as there does seem to be a need for quick reference
here's mine
Age: 34
Sex: Female
Meds: neurontin-currently 300mg per day,tamazepam(restoril)30mg
Symptoms: Parathesia in both legs and arms mostly on the left and in the left side of torso(just about everywhere when it gets really bad)
Pain in my left arm,leg and torso
pain "points" that move from place to place
pins and needles
numbness
insomnia
nausea/vomiting
cramp
fatigue
frustration
can't sit still for more than a few minutes
hot/cold feet
muscle ripples/bubbling running through randomly
depression
low blood pressure
low B12 (300-400)
twitchy/wibbly wobbly
bangs/lights going off in my head when i try to settle to sleep complimented with major all over body twitch
crawlies in the ears
some times when i have slept i wake up in a very strange contorted position and extremely stiff(more so than usual)
it's like i'm quivering inside when i'm at rest...all trembly
vivid dreams-sometimes i have to check to make sure what is real and what was a dream
Is this what you were looking for?
Last edited by claradragon on Tue Aug 17, 2004 5:09 pm, edited 9 times in total.
-
becattx
Thank you
Yes, thats great. This may serve as a quick check for all until we can adjust the profile on the website. Hope everyone does the same.......
Becat:
40
female
MEDS: Mirapex 1-2mg daily, MiracleII water 3-4 oz daily, 1 mg Lorzepam evening,
10 mg Ambein,
vitamins: Mannatech and Flax seed daily, some Shaklee products
have my choice of pain meds, but rarely use them......darvocet, hydrocodone
Rls 40 years now/ self diagnosised
Rls related:
pain scale starts at 3 most days ends 7-9,10 during attacks
stiffness, muscle fatigue. itching and twitching.
effects arms, legs, back, hips and shoulder,,,,,,basically my whole body.
bouts of depression, I believe brought on by life events and RLS Hopelessness...hmmmmmmmmmm new phrase
other health probelems:
birth defect in stomach
10 years insomnia
uclers
deep bone pain, and pain in muscles
weight gain due to inactivity
headaches
constant yearn to crunch ice.
Becat:
40
female
MEDS: Mirapex 1-2mg daily, MiracleII water 3-4 oz daily, 1 mg Lorzepam evening,
10 mg Ambein,
vitamins: Mannatech and Flax seed daily, some Shaklee products
have my choice of pain meds, but rarely use them......darvocet, hydrocodone
Rls 40 years now/ self diagnosised
Rls related:
pain scale starts at 3 most days ends 7-9,10 during attacks
stiffness, muscle fatigue. itching and twitching.
effects arms, legs, back, hips and shoulder,,,,,,basically my whole body.
bouts of depression, I believe brought on by life events and RLS Hopelessness...hmmmmmmmmmm new phrase
other health probelems:
birth defect in stomach
10 years insomnia
uclers
deep bone pain, and pain in muscles
weight gain due to inactivity
headaches
constant yearn to crunch ice.
Very good Clara!
Please see my long and possibly confusing suggestions in the tunnel thread.
With your doctor's co-operation, try to achieve as follow:
Briefly, try to control paresthesia (formication). To do this, stop zopiclone, start dopamine agonist (Mirapex).
Control pain better, possibly with Ultram.
Control stress, possibly with lorazepam.
Sleep may just follow without further assistance, if still in need of it, possibly Sonata.
Thanks Clara!
With your doctor's co-operation, try to achieve as follow:
Briefly, try to control paresthesia (formication). To do this, stop zopiclone, start dopamine agonist (Mirapex).
Control pain better, possibly with Ultram.
Control stress, possibly with lorazepam.
Sleep may just follow without further assistance, if still in need of it, possibly Sonata.
Thanks Clara!
Jumpy Owl
-
Little Lamb
- Posts: 28
- Joined: Fri Jul 30, 2004 12:24 am
My Bio
Jan3213
Age 56
Meds: 1mg 2x daily; Clonazepam 2mg. 1x daily; I was recently prescribed Vicodin 500 MG every 8 hrs as needed for pain
Have had RLS approx. 20 years
Self diagnosed
Symptoms include: creepy-crawly feeling in both legs and arms after I go to bed at night; hot feet; sometimes inability to sit through a movie, ride in a car (for more than approx. 1/2 hour), sit in a chair at home for more than approx. 15 minutes (approximation); the only relief I would get (before getting the right combination of medication) would be to walk (sometimes (I would walk all night).
Other medical problems: I have irritable bowel syndrome; depression (partly from RLS--partly inherited (my mother's family is prone to depression)
Recently (the last 2 months), my legs have begun to hurt like arthritis. I can hardly walk in the morning. On a scale of 1-10, they are about a 6 when I get up for about 1 1/2 hours. Then, they improve to about a 2. Sometimes, I get cramps.
I have insomnia occasionally.
I believe that's about it.
Hope this is what you want!
Age 56
Meds: 1mg 2x daily; Clonazepam 2mg. 1x daily; I was recently prescribed Vicodin 500 MG every 8 hrs as needed for pain
Have had RLS approx. 20 years
Self diagnosed
Symptoms include: creepy-crawly feeling in both legs and arms after I go to bed at night; hot feet; sometimes inability to sit through a movie, ride in a car (for more than approx. 1/2 hour), sit in a chair at home for more than approx. 15 minutes (approximation); the only relief I would get (before getting the right combination of medication) would be to walk (sometimes (I would walk all night).
Other medical problems: I have irritable bowel syndrome; depression (partly from RLS--partly inherited (my mother's family is prone to depression)
Recently (the last 2 months), my legs have begun to hurt like arthritis. I can hardly walk in the morning. On a scale of 1-10, they are about a 6 when I get up for about 1 1/2 hours. Then, they improve to about a 2. Sometimes, I get cramps.
I have insomnia occasionally.
I believe that's about it.
Hope this is what you want!
-
cornelia
bacat:constant yearn to crunch ice
Becat, I just read that you yearn for crunching ice. I have read somewhere that it has something to do with your iron. Please check, may-be it will help RLS if you do something about it.
Corrie
Corrie
thank you
Hi Corrie,
Yes, I have always heard about the connection bewteen low iron and ice crunchers. However, I must report that my bloodwork came back today and I had great numbers on everything, except I need to cut some fat out of my diet.
But thank you for telling me just in case I did not know. I thought is was a good quirk to list. LOL
Yes, I have always heard about the connection bewteen low iron and ice crunchers. However, I must report that my bloodwork came back today and I had great numbers on everything, except I need to cut some fat out of my diet.
But thank you for telling me just in case I did not know. I thought is was a good quirk to list. LOL
Becat!
What was your ferritin level in microgram per milliliter? Mine was about 85.
We must be well-ferretinized!
We must be well-ferretinized!
Jumpy Owl
Becat,
I'm using your list as a model for my own.
Sole:
33
female
MEDS: Mirapex .5 mg in the AM or early afternoon and .5-1 mgs an hour before bed. 800-1660 mgs of Ibuprofin for body aches.
Rls 14 years now/ self diagnosised
Family RLS history: Father has RLS but has never been diagnosed and is taking no meds. I'm certain my 17 year old son has RLS as he reports all of the symptoms, at least three times a week. He had major growing pains as a young boy.
Rls related:
Pain scale starts at 1 most days ends 7-8.
Awaken many times at night from pain and vivid dreaming.
Stiffness, muscle fatigue, itching on my legs and feet, twitching.
Whole body sensitivies. Sensory sensitivities which are much worse during bad RLS periods e.g. light, sound, ....
Bouts of depression, I believe brought on by life events and RLS
Anxiety...Racing thoughts. Unable to turn my brain off.
Brain fog
Memory loss
Hopelessness
other health probelems:
Insomnia
Adult ADD
deep bone pain, and pain in muscles
Major weight gain due to inactivity and hypothyroidism- 100 lbs overweight
I'm using your list as a model for my own.
Sole:
33
female
MEDS: Mirapex .5 mg in the AM or early afternoon and .5-1 mgs an hour before bed. 800-1660 mgs of Ibuprofin for body aches.
Rls 14 years now/ self diagnosised
Family RLS history: Father has RLS but has never been diagnosed and is taking no meds. I'm certain my 17 year old son has RLS as he reports all of the symptoms, at least three times a week. He had major growing pains as a young boy.
Rls related:
Pain scale starts at 1 most days ends 7-8.
Awaken many times at night from pain and vivid dreaming.
Stiffness, muscle fatigue, itching on my legs and feet, twitching.
Whole body sensitivies. Sensory sensitivities which are much worse during bad RLS periods e.g. light, sound, ....
Bouts of depression, I believe brought on by life events and RLS
Anxiety...Racing thoughts. Unable to turn my brain off.
Brain fog
Memory loss
Hopelessness
other health probelems:
Insomnia
Adult ADD
deep bone pain, and pain in muscles
Major weight gain due to inactivity and hypothyroidism- 100 lbs overweight
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
this is going well.
Jumpy I'm will get a copy of the bloodwork next week for you, think everything was great.
And BTW everyone is giving great information here. Lets keep trying to get everyone else in this boat.
Thanks to all that have posted.
And BTW everyone is giving great information here. Lets keep trying to get everyone else in this boat.
Thanks to all that have posted.
-
Twitchy Canadian
- Posts: 10
- Joined: Wed Aug 04, 2004 9:27 pm
- Location: Ontario, Canada
Might as well introduce myself this way!
Hi all,
I have to say....this site is a god-send!
I'm new to all this and am finding it very informative. So, here goes:
AGE: 36
SEX: female
MEDS: Mirapex .5-.75mg at dinner. Clonazepam .5mg at bed. Oral iron supplements 1-2x day
Symptoms started about 5-6 years ago but I was not diagnosed until 8 months ago during a sleep study. Never heard of RLS prior to this. I've also been diagnosed with having severe sleep apnea. I still haven't found out if one is related to the other tho.
My RLS is most likely genetic as I remember my mother (passed away in 2000) always walking the floors at night and complaining of jumpy legs.
I describe it the same way:
creepy-crawlies
bugs under the skin
involuntary leg kicks (my husband has the bruises to prove it)
can't get to sleep
morning stiffness
overall grumpiness (he'll atest to that too)
Hope this helps your study. As I'm sure all of us are aware, ANYTHING to help get closer to a cure!
I have to say....this site is a god-send!
I'm new to all this and am finding it very informative. So, here goes:
AGE: 36
SEX: female
MEDS: Mirapex .5-.75mg at dinner. Clonazepam .5mg at bed. Oral iron supplements 1-2x day
Symptoms started about 5-6 years ago but I was not diagnosed until 8 months ago during a sleep study. Never heard of RLS prior to this. I've also been diagnosed with having severe sleep apnea. I still haven't found out if one is related to the other tho.
My RLS is most likely genetic as I remember my mother (passed away in 2000) always walking the floors at night and complaining of jumpy legs.
I describe it the same way:
creepy-crawlies
bugs under the skin
involuntary leg kicks (my husband has the bruises to prove it)
can't get to sleep
morning stiffness
overall grumpiness (he'll atest to that too)
Hope this helps your study. As I'm sure all of us are aware, ANYTHING to help get closer to a cure!
welcome
Welcome Twitchy,
You did a fine job with the information. I, too, have gotten it from family......both sides, mom and dad.
LOL had to giggle, you said...... my husband has the bruises to prove it.
I'm in a horrible attack right now, and darn near beat the snot out of my hubby the other night. Glad I woke up before he did, I moved to the couch.
LOL LOL LOL
the strangest things just make me laugh.
Anyway, welcome, read and get to know us, we're a good bunch.
You did a fine job with the information. I, too, have gotten it from family......both sides, mom and dad.
LOL had to giggle, you said...... my husband has the bruises to prove it.
I'm in a horrible attack right now, and darn near beat the snot out of my hubby the other night. Glad I woke up before he did, I moved to the couch.
LOL LOL LOL
the strangest things just make me laugh.
Anyway, welcome, read and get to know us, we're a good bunch.