I could go on and on but will stop here. BETTY/WVNEW MEMBERS AND CURRENT MEMBERS PLEASE HELP
Re: Questionaire
Hi: I will put my 2 cents in for the questionaire: I will be 70 this coming June. I am female. I have High blood pressure, high cholestrol, fibromyalgia,overweight, I take clonazapam, neurontin for the rls and hydrocodone 5/500 when desperate, plus maxide, atenolol,benazapril, vytorin, baby aspirin, I take a multipule vitamin and prilosec. Quite alot of meds. Rls to me is like hell at night time, I hate to see night come. If I don't show up for something I'm supposed to be at in the AM, I get tired of saying, "well I only slept 1 and 1/2 hours so I couldn't make it. They don't know what I really go through. My doctor tries to help, but in the beginning he knew very little about rls. He keeps wanting to put me on antidepressants, which send me into a rls nightmare. I refuse them now. I wonder if taking iron tablets would help, does anyone have any experience with them????? I could go on and on but will stop here. BETTY/WV
I could go on and on but will stop here. BETTY/WVThanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand
Hi Betty,
nice to see you again.
I take iron and it's a slow process to get that ferritin level up. I also take a load of magnesium and fiber, tons of water, to battle the side of effects that iron bring. I suggest that you get a blood iron/ferritin test and use iron with your doc's guidence. You'll have to ask for the ferritin test it's not apart of a normal cbc workup.
You know I had a thought for most of my life that I was afraid of the dark, but I think it's like you, it's the night that I'm afraid of. What wil it bring tonight? And yes, it's normal for my friends to call me th eday before something we're doing together to "remind me"> Embarrassing for sure, but thankfully they are nice about it. No one really believes that we never get to sleep. Thank God we have each other.
I'm lucky I have an expert in the field of RLS in my area. It took long enough to find him, but Thank God he's here. Docs don't get it and likely won't until we make a little noise. If it helps I'm trying to get a speaking position with the local training hospitals in the area, 3-4 I think. I want the new docs going into this world to know about RLS and recognize us when they see us. It's not right to have to self diagnosis and then have to teach our docs how to treat us. How many people have to do that? insane!
Glad to see you here again.
nice to see you again.
I take iron and it's a slow process to get that ferritin level up. I also take a load of magnesium and fiber, tons of water, to battle the side of effects that iron bring. I suggest that you get a blood iron/ferritin test and use iron with your doc's guidence. You'll have to ask for the ferritin test it's not apart of a normal cbc workup.
You know I had a thought for most of my life that I was afraid of the dark, but I think it's like you, it's the night that I'm afraid of. What wil it bring tonight? And yes, it's normal for my friends to call me th eday before something we're doing together to "remind me"> Embarrassing for sure, but thankfully they are nice about it. No one really believes that we never get to sleep. Thank God we have each other.
I'm lucky I have an expert in the field of RLS in my area. It took long enough to find him, but Thank God he's here. Docs don't get it and likely won't until we make a little noise. If it helps I'm trying to get a speaking position with the local training hospitals in the area, 3-4 I think. I want the new docs going into this world to know about RLS and recognize us when they see us. It's not right to have to self diagnosis and then have to teach our docs how to treat us. How many people have to do that? insane!
Glad to see you here again.
-
Dan
My History
I had Polio in 1954. I was Diagnosed with Post Polio in 2001, shortly thereafter I had a sleep study & diagnosed with sleep apnia & my legs moved a lot.
I was put on a CPAP machine & given zanaflex to reduce leg movement. Which, 6 months later I was alergic to. Changed medicine.
In the following 4 years my strength has decreased slowly. Over this time my medications progressesd from Zanaflex to Trazadone, tramadol etc. I started taking 1/2 Requip at bed two years ago.
9 months ago, sleep was getting impossible. I had another sleep study & mey requip went to 2mg & I am taking Gabapentine 900 mg.
My head jerks during sleep, my body shakes a lot, which wakes me. Getting to sleep is difficult, holding my head still takes will power. Caffine makes this worse.
I am 56, still working, and getting around with a cane & ocasionally a scooter.
I was put on a CPAP machine & given zanaflex to reduce leg movement. Which, 6 months later I was alergic to. Changed medicine.
In the following 4 years my strength has decreased slowly. Over this time my medications progressesd from Zanaflex to Trazadone, tramadol etc. I started taking 1/2 Requip at bed two years ago.
9 months ago, sleep was getting impossible. I had another sleep study & mey requip went to 2mg & I am taking Gabapentine 900 mg.
My head jerks during sleep, my body shakes a lot, which wakes me. Getting to sleep is difficult, holding my head still takes will power. Caffine makes this worse.
I am 56, still working, and getting around with a cane & ocasionally a scooter.
Good idea Bcat and good luck Dan
Becat wrote:
How rite you are Becat! I admire your intestinal fortitude. And it is not only RLS. The same was in ophthalmology, in psychiatry, and now in diabetes!
MY gatekeeper denies it but an endocrinologist, and a good one at that diagnosed me with diabetes Type II.
I was sent to a 5 week long training so I learn how to control my diabetes with diet (my preference). I started their diet in January 24 and stuck with it for several weeks. I was told to check my blood sugar level first thing in the morning and if I want to, 2 hours after meal.
Much to my surprise my "diet" consisted of 220 grams of carbohydrate, a modest amount of protein and 30 grams of fat.
Here are the RESULTS:
my fasting glucose went down to values lower than150 mg/dL. That was progress. I neither gained not lost a pound (better than gaining). But I observed occasional upsooted in the values but the 2 hour after data did not show the true picture (by that time it was much lower.
I decided to make a study on my carbohydrate tolerance by measuring my blood glucose level (BGL) at 30 min, 1 hr, 2 hrs, 3 hours, 4 hours and five hours after breakfast.
First I measured the effect of sugar (allowed by my diet). The peak value was reached at 1 hour and it was sky high (over 300).
Then I measured the effect of complex carbohydrate on BGL. The peak was 250 at one hour. (much lower at 2 hours which is the time one supposed to check BGL if at all). That was after eating 60 gms of carbohydrate.
20 gms of carbohydrate produced peak 209 (one small tortilla)-
20 gm of carbohydrate incl one whole wheat toast was only a bit lower.
5 gm carbohydrate (0.5 cup of broccoli) + a good portion of meat and cheese) raised the BGL only about 30 points, less than would have been for a normal.
After this experiment I was convinced that eating 220 grams of carbohydrate a day will not control my blood sugar, I will need to take drugs (which can produce hypoglycemia among other things, then eventually they will put me on insulin...
On the other hand, by minimizing carbohydrate intake I have a complete control on my blood sugar level.
This was a safe road to take because among the main food groups only carbohydrate is not essential to life and health. Both proteins and lipids are.
So I eliminated all bread, dough, pasta, potatoes of my diet. I immediately started to lose weight. Not counting the water I also lost, my weight loss amounts to 6 pounds in a week to 10 days. I was no longer hungry, and my BGL is steadily decreasing. Now it is under 110 most of the time.
I do not understand this love affair about the carbohydrate. I know they taste good, but to me they are a metabolic poison immediately pumping up the insulin level which then increases too much (hyperinsulinism) making the glucose level drop too fast and to far down resulting in hypoglycemia!
Dieticians and the teaching nurses begged me not to do it. My own endocrinologist actually revised my diet to have a bit less bread but 120 grams a day is still too much. If I measure the BGL at 2 hours after meal occasionally, I will never know how far up it has been. They will be able to tell after 3 months by measuring the relative glycolisation of hemoglobin (Hg A1c). And they will blame it on me.
They can then bawl me out to follow their diet more rigorously.
I am now convinced that the food pyramid (even the revised one) can be fatal for Type II diabetic people in the long run.
The controversy rages on but the governing medical opinion supported by the AMA, and many offical organizations (and by the government) do not budge. I will surprise them in six months when they remeasure me for the value of Hg A1c.
How this all affects my RLS/PLMD? Well I am still taking Mirapex up to 3 mg a day in 3-4 doses. It is under semi-control.
I have a sneaky suspicion that when I lose weight and have BGL under control, my secondary RLS will disappear or at least diminish.
Will let you all know when (or if) it happens!
Dan you had a tough fight, but keep fighting and you are doing as well as you can.
I did not like gabapentin. Cuased me to have vertigo.Tried several things and ended of with Mirapex (dopamine agonist, you also had its twin sister requip 2 years ago.
My iron is up in the seventies to nineties. My wife's is about 5, but she does not have RLS.
Man, my mouth (fingers) would not stop. Guess what my name is on the locarb Discussion Board? Yeah, it is Diabowl!
Love to all the old friends!
If it helps I'm trying to get a speaking position with the local training hospitals in the area, 3-4 I think. I want the new docs going into this world to know about RLS and recognize us when they see us. It's not right to have to self diagnosis and then have to teach our docs how to treat us. How many people have to do that? insane!
How rite you are Becat! I admire your intestinal fortitude. And it is not only RLS. The same was in ophthalmology, in psychiatry, and now in diabetes!
MY gatekeeper denies it but an endocrinologist, and a good one at that diagnosed me with diabetes Type II.
I was sent to a 5 week long training so I learn how to control my diabetes with diet (my preference). I started their diet in January 24 and stuck with it for several weeks. I was told to check my blood sugar level first thing in the morning and if I want to, 2 hours after meal.
Much to my surprise my "diet" consisted of 220 grams of carbohydrate, a modest amount of protein and 30 grams of fat.
Here are the RESULTS:
my fasting glucose went down to values lower than150 mg/dL. That was progress. I neither gained not lost a pound (better than gaining). But I observed occasional upsooted in the values but the 2 hour after data did not show the true picture (by that time it was much lower.
I decided to make a study on my carbohydrate tolerance by measuring my blood glucose level (BGL) at 30 min, 1 hr, 2 hrs, 3 hours, 4 hours and five hours after breakfast.
First I measured the effect of sugar (allowed by my diet). The peak value was reached at 1 hour and it was sky high (over 300).
Then I measured the effect of complex carbohydrate on BGL. The peak was 250 at one hour. (much lower at 2 hours which is the time one supposed to check BGL if at all). That was after eating 60 gms of carbohydrate.
20 gms of carbohydrate produced peak 209 (one small tortilla)-
20 gm of carbohydrate incl one whole wheat toast was only a bit lower.
5 gm carbohydrate (0.5 cup of broccoli) + a good portion of meat and cheese) raised the BGL only about 30 points, less than would have been for a normal.
After this experiment I was convinced that eating 220 grams of carbohydrate a day will not control my blood sugar, I will need to take drugs (which can produce hypoglycemia among other things, then eventually they will put me on insulin...
On the other hand, by minimizing carbohydrate intake I have a complete control on my blood sugar level.
This was a safe road to take because among the main food groups only carbohydrate is not essential to life and health. Both proteins and lipids are.
So I eliminated all bread, dough, pasta, potatoes of my diet. I immediately started to lose weight. Not counting the water I also lost, my weight loss amounts to 6 pounds in a week to 10 days. I was no longer hungry, and my BGL is steadily decreasing. Now it is under 110 most of the time.
I do not understand this love affair about the carbohydrate. I know they taste good, but to me they are a metabolic poison immediately pumping up the insulin level which then increases too much (hyperinsulinism) making the glucose level drop too fast and to far down resulting in hypoglycemia!
Dieticians and the teaching nurses begged me not to do it. My own endocrinologist actually revised my diet to have a bit less bread but 120 grams a day is still too much. If I measure the BGL at 2 hours after meal occasionally, I will never know how far up it has been. They will be able to tell after 3 months by measuring the relative glycolisation of hemoglobin (Hg A1c). And they will blame it on me.
They can then bawl me out to follow their diet more rigorously.
I am now convinced that the food pyramid (even the revised one) can be fatal for Type II diabetic people in the long run.
The controversy rages on but the governing medical opinion supported by the AMA, and many offical organizations (and by the government) do not budge. I will surprise them in six months when they remeasure me for the value of Hg A1c.
How this all affects my RLS/PLMD? Well I am still taking Mirapex up to 3 mg a day in 3-4 doses. It is under semi-control.
I have a sneaky suspicion that when I lose weight and have BGL under control, my secondary RLS will disappear or at least diminish.
Will let you all know when (or if) it happens!
Dan you had a tough fight, but keep fighting and you are doing as well as you can.
I did not like gabapentin. Cuased me to have vertigo.Tried several things and ended of with Mirapex (dopamine agonist, you also had its twin sister requip 2 years ago.
My iron is up in the seventies to nineties. My wife's is about 5, but she does not have RLS.
Man, my mouth (fingers) would not stop. Guess what my name is on the locarb Discussion Board? Yeah, it is Diabowl!
Love to all the old friends!
Jumpy Owl
Hi JumpyOwl
I read your post about diabetes, my husband was diagnosed with diabetes about 2 years ago. He is 73, and has had bouts of pancreatis for years. Well, finally, his pancreas duct was blocked and he had to have surgery, a puesto procedure( not sure of the spelling) that is when he found out he had diabetes. He went from 203 to 169 lbs. His numbers for his sugar were good, now he is gaining, up to 180, and his numbers are creeping up. I worry because he eats alot of bread, potatoes etc. But he won't listen. His A1C was 7.3 last time. Its scary how little doctors know, its not just about rls either. And we put so much trust in them. Anyway, I enjoyed your letter. Keep up the good work. BETTY/WV
Anyway, I enjoyed your letter. Keep up the good work. BETTY/WVThanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand
-
DAN
POST POLIO & RLS
I am relativly new to the RLS sites.
I am not certain if this is totally on subject, but :
I Have post Polio Syndrome. My sleep problems include a portion of sleep apnia, restless leg (arm, head etc etc). Recently my restless leg has become severe enough I have trouble keeping my head steady during day time.
It is generally known that 65% + post polios have restless leg &/or sleep apnia as well as generally increasing weakness. Since there are 2,000,000 (or so) this is a large number.
However thereare a significent number of UNdiagnosed ( 90 % of polio people were undiagnosed) post polio's, who probably have these same symptoms.
What I am saying, is to review symptoms, & get profesional advice. A good diagnosis, by a competent professional
can help. Doctors versed in post polio are few these days. As in Restless leg, Post polio is not well understood.
Thanks
I am not certain if this is totally on subject, but :
I Have post Polio Syndrome. My sleep problems include a portion of sleep apnia, restless leg (arm, head etc etc). Recently my restless leg has become severe enough I have trouble keeping my head steady during day time.
It is generally known that 65% + post polios have restless leg &/or sleep apnia as well as generally increasing weakness. Since there are 2,000,000 (or so) this is a large number.
However thereare a significent number of UNdiagnosed ( 90 % of polio people were undiagnosed) post polio's, who probably have these same symptoms.
What I am saying, is to review symptoms, & get profesional advice. A good diagnosis, by a competent professional
can help. Doctors versed in post polio are few these days. As in Restless leg, Post polio is not well understood.
Thanks
