. What is your plasma ferritin level? Before and/or after you started to take iron supplement? What type of supplement do you take? 
NEW MEMBERS AND CURRENT MEMBERS PLEASE HELP
Hello!
Welcome Twitchy and thanks for the info! . What is your plasma ferritin level? Before and/or after you started to take iron supplement? What type of supplement do you take?
. What is your plasma ferritin level? Before and/or after you started to take iron supplement? What type of supplement do you take? Jumpy Owl
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Twitchy Canadian
- Posts: 10
- Joined: Wed Aug 04, 2004 9:27 pm
- Location: Ontario, Canada
Hi Jumpy,
I've not had my levels checked yet, altho my GP suggested I do a couple months ago. I put him off at that time. (don't ask me why)
But I'll be seeing him again soon and ask for the test. I did not realize until after I found this site that iron levels were so important and revelant. I talked to my pharmasist and she recommended a supplement that would not interfer with my other meds but at the same time probably not help much either until I found out my levels. I just feel better thinking I'm taking something a bit more 'natural'.
I've not had my levels checked yet, altho my GP suggested I do a couple months ago. I put him off at that time. (don't ask me why)
But I'll be seeing him again soon and ask for the test. I did not realize until after I found this site that iron levels were so important and revelant. I talked to my pharmasist and she recommended a supplement that would not interfer with my other meds but at the same time probably not help much either until I found out my levels. I just feel better thinking I'm taking something a bit more 'natural'.Just a thought
GREAT JOB EVERYONE, I THINK IT'S GOING WELL, SON'T YOU.
OK HERES A THOUGHT ABOUT ANOTHER WAY TO USE THIS THREAD.
REMEMBER, WRITE IT DOWN SOMEWHERE HANDY, SCRATCH IT IN YOUR COMPUTER.
WHEN WE ARE WRITING A POST, IF YOU DON'T WANT TO EXPLAIN YOUR RLS BIO, EVERY TIME YOU TALK TO SOMEONE NEW, OR IN REFERENCE TO THE THREAD.
JUST SAY IN THE POST THAT YOUR BIO IS ON PAGE 2 OF THIS THREAD.
I.E.
WHEN YOU WELCOME SOMEONE NEW...WHILE YOUR READING AND LEARNING ABOUT RLS, MY RLS BIO IS ON PAGE 2/NEW TO RLS/THIS THREAD..........AND PLEASE FILL ONE OUT YOURSELF.
mY BIO IS PAGE1 OR P1
OK HERES A THOUGHT ABOUT ANOTHER WAY TO USE THIS THREAD.
REMEMBER, WRITE IT DOWN SOMEWHERE HANDY, SCRATCH IT IN YOUR COMPUTER.
WHEN WE ARE WRITING A POST, IF YOU DON'T WANT TO EXPLAIN YOUR RLS BIO, EVERY TIME YOU TALK TO SOMEONE NEW, OR IN REFERENCE TO THE THREAD.
JUST SAY IN THE POST THAT YOUR BIO IS ON PAGE 2 OF THIS THREAD.
I.E.
WHEN YOU WELCOME SOMEONE NEW...WHILE YOUR READING AND LEARNING ABOUT RLS, MY RLS BIO IS ON PAGE 2/NEW TO RLS/THIS THREAD..........AND PLEASE FILL ONE OUT YOURSELF.
mY BIO IS PAGE1 OR P1
Good job
Becat
I just wanted to tell you that you've done a really good job with this. And, I think everyone has really been good at contributing. And, if I remember correctly, Sole brought this up awhile back as well as Clara and a few others! It's a great idea ladies. Sometimes, you have to knock me over the head to get the point across, but eventually I get it!! Ha!! I think it's really going to help. And, I've noted, on my computer, where my bio is, B. Thanks for your hard work!
Jan
I just wanted to tell you that you've done a really good job with this. And, I think everyone has really been good at contributing. And, if I remember correctly, Sole brought this up awhile back as well as Clara and a few others! It's a great idea ladies. Sometimes, you have to knock me over the head to get the point across, but eventually I get it!! Ha!! I think it's really going to help. And, I've noted, on my computer, where my bio is, B. Thanks for your hard work!
Jan
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Snowyegret
- Posts: 5
- Joined: Sat Aug 07, 2004 9:40 pm
- Location: Milpitas, California
New member
Hi. Here's my bio.
Age: 38 (ok, next month I'll be 39)
Sex: Female
Place: Milpitas, California
other health issues: Busitus in left hip, arthritis in right foot, GERD, overweight (but trying to lose lbs)
Meds: Was taking Sinemet for about 5 months and was just switched to Permax yesterday. Also take CalMag Plus (has extra Magnesium)
Symptoms: legs twitch, mainly from the knees down but not always. Achey like the mucles have been working too much. Hot legs. Symptoms start usually around 7-8pm while sitting down to watch TV. Sometimes bother me during the day, if I'm at the computer too long.
Diagnosed: 6 months ago but have had symptoms since I was 18yrs old. They steadly got worse and I got more frustrated with them.
Snowyegret
Age: 38 (ok, next month I'll be 39)
Sex: Female
Place: Milpitas, California
other health issues: Busitus in left hip, arthritis in right foot, GERD, overweight (but trying to lose lbs)
Meds: Was taking Sinemet for about 5 months and was just switched to Permax yesterday. Also take CalMag Plus (has extra Magnesium)
Symptoms: legs twitch, mainly from the knees down but not always. Achey like the mucles have been working too much. Hot legs. Symptoms start usually around 7-8pm while sitting down to watch TV. Sometimes bother me during the day, if I'm at the computer too long.
Diagnosed: 6 months ago but have had symptoms since I was 18yrs old. They steadly got worse and I got more frustrated with them.
Snowyegret
Screen Name: Simcha
52 year old female
symptoms began ~10 years old
legs only
begins with itchy skin
fall asleep around 11:00 PM & wake up at 11:30 with RLS
occurs 5 nights out of 7
watching TV helps if I've taken herbal remedy such as Valarian
computer games help
exercise in the evening seems to make it worse
have few bouts of RLS when on vacation or away from home
flying? awful! I usually stand in the back of the plane for the entire trip.
52 year old female
symptoms began ~10 years old
legs only
begins with itchy skin
fall asleep around 11:00 PM & wake up at 11:30 with RLS
occurs 5 nights out of 7
watching TV helps if I've taken herbal remedy such as Valarian
computer games help
exercise in the evening seems to make it worse
have few bouts of RLS when on vacation or away from home
flying? awful! I usually stand in the back of the plane for the entire trip.
-
becattx
Thank you
Hi Simcha,
Thank you for you help in this project. Now if you don't want to explain you bio every time just refer people to this page #/this thread. A little less typing.
You did a great job. Are you on any medications? And do you feel that other family members suffer as well with RLS?
thanks again, have a great day.
Thank you for you help in this project. Now if you don't want to explain you bio every time just refer people to this page #/this thread. A little less typing.
You did a great job. Are you on any medications? And do you feel that other family members suffer as well with RLS?
thanks again, have a great day.
-
Guest
The only meds I'm on are an estrogen patch (Climara) and Paxil, which I'm weaning myself of off and moving to Xanax.
I take over the counter, herbal meds such as Valarian and something called Deep Sleep that contains valarian root, hyssop, and other sleep inducing substances.
During the winter months I take Melatonin every night. I read somewhere that RLS might be connected with circadian rhythm or sensitivity to light.
I seem to recall that my father had some sort of leg problem and slept with his legs up in the air, crossed and in othe weird positions. He died when I was young, so don't know much more. No sibs or other family members to ask.
Thanks for doing the survey, I'm sure this will be helpful in some way.
-Simcha
I take over the counter, herbal meds such as Valarian and something called Deep Sleep that contains valarian root, hyssop, and other sleep inducing substances.
During the winter months I take Melatonin every night. I read somewhere that RLS might be connected with circadian rhythm or sensitivity to light.
I seem to recall that my father had some sort of leg problem and slept with his legs up in the air, crossed and in othe weird positions. He died when I was young, so don't know much more. No sibs or other family members to ask.
Thanks for doing the survey, I'm sure this will be helpful in some way.
-Simcha
Thank you Simcha
for the info.
I only have a couple of questions. When you wake of with sensations of paresthesia at 11:30 what do you do and how long do they last? Do they stop after a while? Or do you take something effective?
Paxil and Xanax are both antianxiety drugs and they may affect RLS adversely. If you really need them then there is not much you can do about them except you could start to take a dopamine agonist such as Mirapex or Requip provided your doctor agrees.
It all depends how severe your RLS is. It is not yet a daily RLS it seems.
How much do you sleep? and how refreshing is it? That is the major morbidity that RLS can cause which has to be corrected.
I only have a couple of questions. When you wake of with sensations of paresthesia at 11:30 what do you do and how long do they last? Do they stop after a while? Or do you take something effective?
Paxil and Xanax are both antianxiety drugs and they may affect RLS adversely. If you really need them then there is not much you can do about them except you could start to take a dopamine agonist such as Mirapex or Requip provided your doctor agrees.
It all depends how severe your RLS is. It is not yet a daily RLS it seems.
How much do you sleep? and how refreshing is it? That is the major morbidity that RLS can cause which has to be corrected.
Jumpy Owl
Sorry guys, finally got around to it!!
Hehehe, this brings back memories of my mega-chat-room days when the first question always asked was A/S/L (age/sex/location).
I had an automated response which went a little something like this (N.B. tongue was firmly planted in cheek at the time of writing, no offence intended!!!):
Age...old enough to know better and young enough not to care
Sex... 12% - trans; 23% - bi; 20% - lesbian; 40% - straight; 5% - not sure about
Location...Somewhere beyond the horizon of the unexplored territory known as "The Black Stump" in a burial plot marked #13
OK, now that i've got that out of my system, and hopefully scored a few wry smiles from y'all, i'll get down to business and give you my real "stats"
DOB: 15 September 1975
SEX: Female
LOCATION: Rockhampton, Central Queensland, Australia (Sub-tropical climate)
RECORDED HEALTH PROBLEMS(in no particular order):
Chronic Fatigue Syndrome/Myalgic Encephamyelitis
Restless Leg Syndrome
Lactose Intolerance
Very Poor Immune System
Raynaud’s Disease
Migraines
Arthritis & RSI in both wrists (I have over-elasticised ligaments & tendons in my wrists & ankles; have had surgery twice on right wrist)
Tonsils, Adenoids, Appendix & numerous other Abdominal Lymph Nodes all "AWOL" with the assistance of a surgeons scalpel
AGE AT ONSET:
CFS/ME – Lifelong
RLS – Approx. 7-8yrs old, then went into “remission” at about age 14, only to reappear at age 27
Lactose Intolerance – refer previous answer
Immune System Deficiency – Lifelong
Raynaud’s Disease – Lifelong
Migraines – Hard to pinpoint
Arthritis & RSI – early 20’s (result of playing Beach Volleyball at a competitive level)
Tonsilitis – Continuous bouts until removed at age 10
Appendicitis – Unusual case in that it was caused by infection of other surrounding abdominal lymph glands; removed at age 13
Additional Lymph Glands removed at the same time as Appendix
SYMPTOMS:
RLS – At it’s extreme worst (i.e. get me a gawddam chainsaw) parasthesia is in both arms, both legs and hips
Attacks can last anywhere from a couple of hours to 24/7 week long
Attacks can start at any time of day or night
I get either the “gotta wriggles” or the “gotta stretches”, depending on the attack
Muscle pain and weakness as a direct result of the wriggling and stretching
Insomnia, again a direct result of RLS attacks
Depression, or to word it slightly differently, sheer frustration
CFS/ME – You name it i've more than likely had it
KNOWN RLS TRIGGERS:
Caffeine, Alcohol, Chocolate, Heavy Lactose-Based Foods/Drinks, Sugar (in high "doses"), Pineapple, Stress, Travel, Too Much Exercise/Walking
CURRENT MEDICATIONS/SUPPLEMENTS:
Endep – Amitriptyline 10mg (2 tablets taken at night);
Endep – Amitriptyline 50mg (1 tablet taken at night);
Valerian – 2000mg (1-2 tablets taken at night);
Women’s Multi-Vitamin, Mineral & Herbal Formula (1 tablet taken in the morning);
Contraceptive Pill (1 tablet taken at night)
CURRENT ALTERNATIVE THERAPIES:
Massage Therapy, CranioSacral Therapy, Meditation, Tai Chi, Slow Breathing Techniques
WHAT'S IN MY “SPARE PRESCRIBED DRUGS” BOX AS A RESULT OF VARIOUS EXPERIMENTS AND NOW USED FOR WHEN EVERYTHING GOES ASS-ABOUT:
Cabaser - Cabergoline 1mg, Cabaser – Cabergoline 2mg, Cabaser - Cabergoline 4mg, Madopar - Levodopa 100mg/Benserazide 25mg, Madopar Rapid - Levodopa 100mg/Benserazide 25mg (Soluble), Sinemet - Levodopa 250mg/Carbidopa 25mg, Parlodel - Bromocriptine 2.5mg, Neruontin - Gabapentin 300mg, Temtabs - Temazepam 10mg, Sinequan - Doxepin 25mg, Antenex - Diazepam 5mg, Flixotide Accuhaler - Fluticasone Propionate 250mcg (to counteract a side effect of Cabergoline), Bactrim DS – Sulfamethoxazole 800mg/Trimethoprim 160mg (to counteract a side effect of Endep), Macrodantin – Nitrofuranton 100mg (to counteract a side effect of Endep)
WHAT'S IN MY “OTHER DRUGS/SUPPLEMENTS” BOX USED ON AN AS NEEDED BASIS:
Nurofen Plus – Ibuprofen 200mg/ Codeine Phosphate 12.8mg, Mersyndol – Paracetamol 450mg/Codeine Phosphate 9.75mg/ Doxylamine Succinate 5mg, Aspalgin – Asprin 300mg/Codeine Phosphate 8mg, Melatonin 3mg 6x, BioMagnesium, Caltrate – Calcium 600mg, CoQ10 100ST – Ubidecarenone (CoQ10) 100mg/Mixed Tocopherols Concentrate 268mg
I had an automated response which went a little something like this (N.B. tongue was firmly planted in cheek at the time of writing, no offence intended!!!):
Age...old enough to know better and young enough not to care
Sex... 12% - trans; 23% - bi; 20% - lesbian; 40% - straight; 5% - not sure about
Location...Somewhere beyond the horizon of the unexplored territory known as "The Black Stump" in a burial plot marked #13
OK, now that i've got that out of my system, and hopefully scored a few wry smiles from y'all, i'll get down to business and give you my real "stats"
DOB: 15 September 1975
SEX: Female
LOCATION: Rockhampton, Central Queensland, Australia (Sub-tropical climate)
RECORDED HEALTH PROBLEMS(in no particular order):
Chronic Fatigue Syndrome/Myalgic Encephamyelitis
Restless Leg Syndrome
Lactose Intolerance
Very Poor Immune System
Raynaud’s Disease
Migraines
Arthritis & RSI in both wrists (I have over-elasticised ligaments & tendons in my wrists & ankles; have had surgery twice on right wrist)
Tonsils, Adenoids, Appendix & numerous other Abdominal Lymph Nodes all "AWOL" with the assistance of a surgeons scalpel
AGE AT ONSET:
CFS/ME – Lifelong
RLS – Approx. 7-8yrs old, then went into “remission” at about age 14, only to reappear at age 27
Lactose Intolerance – refer previous answer
Immune System Deficiency – Lifelong
Raynaud’s Disease – Lifelong
Migraines – Hard to pinpoint
Arthritis & RSI – early 20’s (result of playing Beach Volleyball at a competitive level)
Tonsilitis – Continuous bouts until removed at age 10
Appendicitis – Unusual case in that it was caused by infection of other surrounding abdominal lymph glands; removed at age 13
Additional Lymph Glands removed at the same time as Appendix
SYMPTOMS:
RLS – At it’s extreme worst (i.e. get me a gawddam chainsaw) parasthesia is in both arms, both legs and hips
Attacks can last anywhere from a couple of hours to 24/7 week long
Attacks can start at any time of day or night
I get either the “gotta wriggles” or the “gotta stretches”, depending on the attack
Muscle pain and weakness as a direct result of the wriggling and stretching
Insomnia, again a direct result of RLS attacks
Depression, or to word it slightly differently, sheer frustration
CFS/ME – You name it i've more than likely had it
KNOWN RLS TRIGGERS:
Caffeine, Alcohol, Chocolate, Heavy Lactose-Based Foods/Drinks, Sugar (in high "doses"), Pineapple, Stress, Travel, Too Much Exercise/Walking
CURRENT MEDICATIONS/SUPPLEMENTS:
Endep – Amitriptyline 10mg (2 tablets taken at night);
Endep – Amitriptyline 50mg (1 tablet taken at night);
Valerian – 2000mg (1-2 tablets taken at night);
Women’s Multi-Vitamin, Mineral & Herbal Formula (1 tablet taken in the morning);
Contraceptive Pill (1 tablet taken at night)
CURRENT ALTERNATIVE THERAPIES:
Massage Therapy, CranioSacral Therapy, Meditation, Tai Chi, Slow Breathing Techniques
WHAT'S IN MY “SPARE PRESCRIBED DRUGS” BOX AS A RESULT OF VARIOUS EXPERIMENTS AND NOW USED FOR WHEN EVERYTHING GOES ASS-ABOUT:
Cabaser - Cabergoline 1mg, Cabaser – Cabergoline 2mg, Cabaser - Cabergoline 4mg, Madopar - Levodopa 100mg/Benserazide 25mg, Madopar Rapid - Levodopa 100mg/Benserazide 25mg (Soluble), Sinemet - Levodopa 250mg/Carbidopa 25mg, Parlodel - Bromocriptine 2.5mg, Neruontin - Gabapentin 300mg, Temtabs - Temazepam 10mg, Sinequan - Doxepin 25mg, Antenex - Diazepam 5mg, Flixotide Accuhaler - Fluticasone Propionate 250mcg (to counteract a side effect of Cabergoline), Bactrim DS – Sulfamethoxazole 800mg/Trimethoprim 160mg (to counteract a side effect of Endep), Macrodantin – Nitrofuranton 100mg (to counteract a side effect of Endep)
WHAT'S IN MY “OTHER DRUGS/SUPPLEMENTS” BOX USED ON AN AS NEEDED BASIS:
Nurofen Plus – Ibuprofen 200mg/ Codeine Phosphate 12.8mg, Mersyndol – Paracetamol 450mg/Codeine Phosphate 9.75mg/ Doxylamine Succinate 5mg, Aspalgin – Asprin 300mg/Codeine Phosphate 8mg, Melatonin 3mg 6x, BioMagnesium, Caltrate – Calcium 600mg, CoQ10 100ST – Ubidecarenone (CoQ10) 100mg/Mixed Tocopherols Concentrate 268mg
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!!!
WOW
MAY I SAY YOURS IS SIMPLY AWESOME..............
MAYBE THE REST OF US SHOULD GET DO OVERS...............
WOW.
THANK YOU TRULEY FOR THE INPUT.
AGAIN THANK YOU TO ALL WHO KEEP THIS GOING. I JUST KNOW WE'RE GOING TO MAKE A DIFFERENCE, DON'T YOU JUST FEEL IT.
BRING ON THE NATIONAL MEETING.
MAYBE THE REST OF US SHOULD GET DO OVERS...............
WOW.
THANK YOU TRULEY FOR THE INPUT.
AGAIN THANK YOU TO ALL WHO KEEP THIS GOING. I JUST KNOW WE'RE GOING TO MAKE A DIFFERENCE, DON'T YOU JUST FEEL IT.
BRING ON THE NATIONAL MEETING.
Nadia's bio
Nadia, this is Jan
Your bio was like reading a good novel!! All joking aside, it was great!!! Puts mine to shame! I'd love to HEAR you read it--I agree with Becat, perhaps we SHOULD get a do over!! And Becat, once again, this was a great idea!! I really think it's bound to do some good. It certainly has helped me and I've been a member for quite a little while! To add to Becat's plea, COME ON EVERYBODY, GET ON THE BANDWAGON!!!
Jan
Your bio was like reading a good novel!! All joking aside, it was great!!! Puts mine to shame! I'd love to HEAR you read it--I agree with Becat, perhaps we SHOULD get a do over!! And Becat, once again, this was a great idea!! I really think it's bound to do some good. It certainly has helped me and I've been a member for quite a little while! To add to Becat's plea, COME ON EVERYBODY, GET ON THE BANDWAGON!!!
Jan
No one is alone who had friends.
BRING ON THE NATIONAL MEETING!
Dear fellow sufferers!
I think that with hard work all this good data Becat started to generate can be organized into a presentable form for the National Meeting. We are a bit late for November this year as they are already working on the agenda for next year.
However, there is a chance! I was asked by the RLS Foundation to present them an outline or an abstract of a paper ORP would want to present at the National Meeting. They will consider it for a presentation either in this November or definitely for next year. I requested at least 15 minutes for this year if they can squeeze us in.
Soon I hope, I will post a form based partially on the info you already sent in or I found interesting on the forums. And I will ask you to complete it and post it again. I know it is extra work but it will help me tremendously. Nadia's outlay has already been a great help.
Before I present it to the RLS directorship, I will run it by you and will ask for comments. It is our work and everyone should have a chance to contribute.
I am already so proud of you fellow RLS sufferers!
I try not to mention names because I may inadvertently leave someone out. I have seen several of you progress so fast just in the matter of weeks from a desperate and confused patient to a self confident, knowledgeable person capable of holding his/her own even against a non-cooperative, ignorant and prejudiced health care provider. Very well done, people! 
Last remark: the more people participate the more valuable this contribution will be. So come on fellow lurkers, please complete the form I will post in the next few days in a separate thread (topic).
I think that with hard work all this good data Becat started to generate can be organized into a presentable form for the National Meeting. We are a bit late for November this year as they are already working on the agenda for next year.
However, there is a chance! I was asked by the RLS Foundation to present them an outline or an abstract of a paper ORP would want to present at the National Meeting. They will consider it for a presentation either in this November or definitely for next year. I requested at least 15 minutes for this year if they can squeeze us in.
Soon I hope, I will post a form based partially on the info you already sent in or I found interesting on the forums. And I will ask you to complete it and post it again. I know it is extra work but it will help me tremendously. Nadia's outlay has already been a great help.
Before I present it to the RLS directorship, I will run it by you and will ask for comments. It is our work and everyone should have a chance to contribute.
I am already so proud of you fellow RLS sufferers!
I try not to mention names because I may inadvertently leave someone out. I have seen several of you progress so fast just in the matter of weeks from a desperate and confused patient to a self confident, knowledgeable person capable of holding his/her own even against a non-cooperative, ignorant and prejudiced health care provider. Very well done, people!
Last remark: the more people participate the more valuable this contribution will be. So come on fellow lurkers, please complete the form I will post in the next few days in a separate thread (topic).
Jumpy Owl
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Little Lamb
- Posts: 28
- Joined: Fri Jul 30, 2004 12:24 am
Just my 2 cents worth, but I've got to keep my eyes open for that, Jumpy. It's really interesting to see what others go through with rls.
I don't have it as bad as you guys and I do sympathise with all of you. I'm wondering if I have it at all. My feet twitch every so often.
I still don't have the results of my blood test back. I have an appointment with the doctor next month so maybe I can find out something then.
I don't have it as bad as you guys and I do sympathise with all of you. I'm wondering if I have it at all. My feet twitch every so often.
I still don't have the results of my blood test back. I have an appointment with the doctor next month so maybe I can find out something then.
Dear Little Lamb:
It should be in your medical record to which you have a right to. I just asked the receptionist by phone to get a copy of everything and in two hours later I got the whole thing. She did not even asked me why I wanted it. Months are too long to wait when your well being is at stake.
Wow, RLS really makes us militant, does it not? Sorry about that.
Wow, RLS really makes us militant, does it not? Sorry about that.
Jumpy Owl