I'm a 43 yr old woman, had RLS as long as I can remember, was officially diagnosed about 10 years ago, and need some frickin' sleep!
Over the years it's come and gone, but the last couple years have been bad and getting worse. I've had a period of about 4 weeks with no more than 2-3 hours of sleep at a time - I know you can relate.
Some nights getting up and doing leg lifts, leg circles and toe raises will help long enough to get back to sleep, but not lately.
Lorazapam (a benzodiazapine) worked for awhile but not any more. I have an appointment with my GP in a couple of weeks and will discuss some of the Parkinson's meds with hopes of getting some relief.
Glad to be here, hope I can contribute, and wish you all long, restful nights.
Heron
New to the Board
-
Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Welcom aboard!
Hello Heron!
I am not sure where your handle come from but I studied about Heron's ball in high school chemistry in the forties, so it must have been an old Greek scientist.
I was prescribed twenty some years ago at first Valium then Ativan (lorazepam) just once a day for sleep. I was under a lot of stress and I figured if I was relaxed I could go to sleep more or less naturally and if I took it only once a day I would not get addicted to it.
So I took the stuff off and on most of the time for a couple of decades. Then I retired and I weaned away myself from lorazepam then also from antihypertensive medication as I did not need them. And guess what! At my age (approaching 70) I was then blessed with RLS, and took me a while to recognize it. However, mine came with pain, and the strange feelings (paresthesias) I attributed to withdrawal symptoms.
I also found an anticonvulsant to be of help (actually lorazepam is also used occasionally as an anticonvulsant) as well as hydrocodone, and I am sure the beta blockers and calcium channel blockers I had taken helped to mask the symptoms of RLS.
Exactly a week ago I had my sleep test which confirmed the PLM (periodic leg movements) and also the fact that I am not sleeping well. Today I saw my GP who (upon the advice of the sleep doctor) prescribed the anticonvulsant neurontin. Sleep tests are also useful because, if they show that one does not have sleep apnea, the doctors are more daring in precribing medications affecting the central nervous system (they do not want you to suffocate in your sleep).
Tonight I will take the first 300 mg pill of neurontin. But I am going in too much detail
and you can read my story at other places on this Discussion Board.
The important thing you Heron have to do, as I found out today, to convince your doctor as to how much morbidity RLS represent in your life. This is of course assuming that he already believes that you have RLS, as yours seems to do.
Let us know what happens in your saga. You and your doctor have to try several medications probably to get the right combination to assure you a good night sleep.
I am not sure where your handle come from but I studied about Heron's ball in high school chemistry in the forties, so it must have been an old Greek scientist.
I was prescribed twenty some years ago at first Valium then Ativan (lorazepam) just once a day for sleep. I was under a lot of stress and I figured if I was relaxed I could go to sleep more or less naturally and if I took it only once a day I would not get addicted to it.
So I took the stuff off and on most of the time for a couple of decades. Then I retired and I weaned away myself from lorazepam then also from antihypertensive medication as I did not need them. And guess what! At my age (approaching 70) I was then blessed with RLS, and took me a while to recognize it. However, mine came with pain, and the strange feelings (paresthesias) I attributed to withdrawal symptoms.
I also found an anticonvulsant to be of help (actually lorazepam is also used occasionally as an anticonvulsant) as well as hydrocodone, and I am sure the beta blockers and calcium channel blockers I had taken helped to mask the symptoms of RLS.
Exactly a week ago I had my sleep test which confirmed the PLM (periodic leg movements) and also the fact that I am not sleeping well. Today I saw my GP who (upon the advice of the sleep doctor) prescribed the anticonvulsant neurontin. Sleep tests are also useful because, if they show that one does not have sleep apnea, the doctors are more daring in precribing medications affecting the central nervous system (they do not want you to suffocate in your sleep).
Tonight I will take the first 300 mg pill of neurontin. But I am going in too much detail
and you can read my story at other places on this Discussion Board.
The important thing you Heron have to do, as I found out today, to convince your doctor as to how much morbidity RLS represent in your life. This is of course assuming that he already believes that you have RLS, as yours seems to do.
Let us know what happens in your saga. You and your doctor have to try several medications probably to get the right combination to assure you a good night sleep.
Jumpy Owl
Thank you both for the welcome, as you know it's good to talk with folks who understand.
JumpyOwl, I found your comment about ruling out sleep apnea interesting. I have been preparing to argue with my doc that I don't need to get tested for sleep disorders as I already know I have RLS, and don't want to waste money (mine and the insurance company's) on unnecessary testing.
Please let us know how the neurontin works,
Heron (as in Great Blue)
JumpyOwl, I found your comment about ruling out sleep apnea interesting. I have been preparing to argue with my doc that I don't need to get tested for sleep disorders as I already know I have RLS, and don't want to waste money (mine and the insurance company's) on unnecessary testing.
Please let us know how the neurontin works,
Heron (as in Great Blue)
Of course, it's a bird, too!
Doctors have been after me since the early nineties to get a sleep test. At that time it was not very sophisticated. But now it is. My daughter insists that there are fifty electrodes attached to you, probably ten to your skull. Perhaps not that many but it takes thirty minutes to attach them all. And they monitor many things. I took the trouble to copy my report in my thread (self diagnosed), you can view it there.
I was very impressed. And they certainly monitor the leg movements, the oxygen content of your blood (through your fingertip which is lit up like E.T.'s.) - I always thought I could not sleep under circumstances like that but I did. They are well organized and one is alone in a comfortable bed with a TV, (which I immediately turned off.)
Do not worry if you have to get up during the night, you call out and they unhook you, but do not move the electrodes. Hard to explain but the set-up is clever.
I only took neurontin once last night (half dose), and it was fine.
I would recommend the sleep study because it is now an excellent diagnostic tool when they also use the multi-channel somnograph.
I was very impressed. And they certainly monitor the leg movements, the oxygen content of your blood (through your fingertip which is lit up like E.T.'s.) - I always thought I could not sleep under circumstances like that but I did. They are well organized and one is alone in a comfortable bed with a TV, (which I immediately turned off.)
Do not worry if you have to get up during the night, you call out and they unhook you, but do not move the electrodes. Hard to explain but the set-up is clever.
I only took neurontin once last night (half dose), and it was fine.
I would recommend the sleep study because it is now an excellent diagnostic tool when they also use the multi-channel somnograph.
Jumpy Owl
New to RLS?
Jumpy,
Please keep us informed on the Neurontin and Good Luck!
Please keep us informed on the Neurontin and Good Luck!
New to RLS?
Forgot to mention that my shrink insisted the I also get a physical. I am scheduled for the 11th of May. What should I ask them to closely check? I know I read somewhere about Iron levels. But, there were other specifics also mentioned right?
Thanks
Thanks
What to check?
Correction of deficiency states have been reported to decrease RLS symptoms. The iron deficiency is the best established. Vitamin C, E or B12 have not been proven. However, magnesium deficiency have been shown to matter in two studies. Serum ferritin level should be measured. Oral iron supplements only helps if the ferritin levels are real low (less than 5 microgram/Liter) because otherwise the gastrointestinal tract will not absorb the oral iron (ions).
It is not much mentioned but the thyroid hormones should be checked for hyperthyroidism if there are other signs suggesting Grave's syndrome. My daughter has hypothyroidism (Hashimoto's) that took three years and several experts to establish. Still the fourth "expert" wanted to destroy her thyroid gland by radiation as she suspected hyperthyroidism.
So one has to be careful with some experts.
Since I had it I am sold on the sleep test done by a reputable well equipped sleep center. It will provide detailed objective information on the type of sleep disorder underlying or caused by many such diseases.
It is not much mentioned but the thyroid hormones should be checked for hyperthyroidism if there are other signs suggesting Grave's syndrome. My daughter has hypothyroidism (Hashimoto's) that took three years and several experts to establish. Still the fourth "expert" wanted to destroy her thyroid gland by radiation as she suspected hyperthyroidism.
So one has to be careful with some experts.
Since I had it I am sold on the sleep test done by a reputable well equipped sleep center. It will provide detailed objective information on the type of sleep disorder underlying or caused by many such diseases.
Jumpy Owl
What to check?
Thanks Jumpy...am off for my first physical in years (tomorrow) I will be sure to have her check the levels that you outlined in your post on April29th. I need to get help after finding that I can't take the Neurontin.
My doc had me on the lowest dose and as you might remember, I suffered for 24 hours. I am now curious to see what my GP has to say. This will be the first time I am mentioning it to her. I also told you that my mental health specialist switched me from Zoloft to Welbutrin. I know it hasn't helped my legs. It's not helping my depression either. Zoloft was much better, but brought about a serious weight gain. I'm at a loss now on that too. The more I gain the more depressed I get. The more depressed I get, the more my legs act up. Geez, it truly is a vicious cycle.
Thanks again for listening and I will keep you posted. I am glad that you seem to be getting some relief.
My doc had me on the lowest dose and as you might remember, I suffered for 24 hours. I am now curious to see what my GP has to say. This will be the first time I am mentioning it to her. I also told you that my mental health specialist switched me from Zoloft to Welbutrin. I know it hasn't helped my legs. It's not helping my depression either. Zoloft was much better, but brought about a serious weight gain. I'm at a loss now on that too. The more I gain the more depressed I get. The more depressed I get, the more my legs act up. Geez, it truly is a vicious cycle.
Thanks again for listening and I will keep you posted. I am glad that you seem to be getting some relief.
-
Anonymous
RLS sufferer
HI! I was diagnosed about 2 years ago after seeing my doctor for severe muscle twitching (creepy crawly) in my whole body, but mostly my legs. I also get cold/hot sensations in my feet, and sometimes mild tugging pain. I have never slept well, even as a child, but that is not my main complaint with this. It's the incessant muscle movements and feelings that I need to stretch constantly and take hot showers. It is worse at certain times, mainly when I'm worried about something. Does anyone experience these symptoms?? Thanks, guitar_202.
welcome
Welcome to the club guitar202.
Ever wake up and feel as though your legs climbed mountains all night.
Yup, I'd say your one of us. I wondered for the longest time....I stretch so often, shouldn't I be more limber?
This is a great site for all levels of RLS. There is some great information here. It's the people here that will hook you. We'll listen, share, and we understand.
Keep in touch.
Have a great day.
Ever wake up and feel as though your legs climbed mountains all night.
Yup, I'd say your one of us. I wondered for the longest time....I stretch so often, shouldn't I be more limber?
This is a great site for all levels of RLS. There is some great information here. It's the people here that will hook you. We'll listen, share, and we understand.
Keep in touch.
Have a great day.
Temperature fluctations?
The hot and cold sensations in your feet are interesting. They could be real (your nerves are registering true temperature changes) and imaginary temperature change, where nerve signals are created as if there were temperature changes. In the former, there could be blood circulation control problems as blood is the heating/cooling medium in our body heat pump. 
These may not be common in RLS but I will keep my eyes and ears open.
Lack of quality sleep is not your main problem? Then perhaps you are lucky. Would hot bath better than hot showers? (more cost-efficient). Possibly a whirl-bath.
No drugs so far?
These may not be common in RLS but I will keep my eyes and ears open.
Lack of quality sleep is not your main problem? Then perhaps you are lucky. Would hot bath better than hot showers? (more cost-efficient). Possibly a whirl-bath.
No drugs so far?
Jumpy Owl
Hi jumpy,
Hi JumpyOwl,
You and I have spoken before. (post under definition of pain) I think I might have been in the second week of total sleep depravation. You were trying, kindly, to support and share with me. However, I could not even type well enough at the time to make sense.
Over the course of 3 1/2 weeks I slept in minute waves of 1-2 hours at a time. Trying not to nap, so that bedtime would come easier. Ha. I wake up with a pain level of 3-4, ending my day with 8-10. I have lived with pain like this for 10 years.
Several years ago I heard about RLS and starting researching. I really don't remember when I first found this sight. It was fairly new at the time. As soon as I saw the words GROWING PAINS I started to cry. That was my childhood. I caught a break in my late teen and early 20's. Hot baths yes, are the way to go, and they worked fine for years. I broke my leg/ankle in four places 10 years ago. Wham, never have had a pain free day again.
Add to that the most unreal life experiences from 1996 to 2002. The major life changing things happened from Sept. 11, 2000 - Aug. 2002. I might mention that my husband is from NY. That period of time alone sent the symptoms through the roof.
It's been 4-5 years ago that I started to mention RLS to my Family Practice Doc. and the OBGYN. Family Doc. is one of the best in the country, still he didn't know much about it. To be honest, it was important but of the not the most important. I'm sure that he thought my sleep problems were all stress related. The pain we blamed on the old broken leg doesn't heal well. I was allowed sleep meds. only when I traveled, roaming other's homes at night was not a good option. We never really addressed the pain, other than endless foot and ankle Docs.. They found no reason for my problems.
OBGYN wrote in my chart.....PMS.
I sought treatment over a year ago with a sleep doc., our realationship has been a rocky one. I do not fit into the NORMAL mold of RLS, if there really is one. The Doc. has a problem with this, but I have many others in my family that have RlS. Mine is genetic. 7-8 of us now that I know of. My grandmother and I are (24/7) in pain. I itch and twitch, but learned to live with that somehow. I was taught as a child to sit still, Ladies do, you know. I found that I could excerise many muscles by wildly flexing my toes. No one could see inside my shoes, yet I was still. Sorta funny now.
To answer your questions. Yes, I am on medication Mirapex worked well for over a year. I could not take Nuerotin, my system rejected it. I'm very careful with pain medication. Most doesn't work any way for me. Hotbaths sooth, but only temp.. I'm on 14 days of Ambien to try and correct the sleep cycle.
The hot and cold thing, you might be right about poor circulation. It's a common theme in my family. But not many heart related problems, just my father.
Sorry to babble on.
Have a great day and keep up the good research.
You and I have spoken before. (post under definition of pain) I think I might have been in the second week of total sleep depravation. You were trying, kindly, to support and share with me. However, I could not even type well enough at the time to make sense.
Over the course of 3 1/2 weeks I slept in minute waves of 1-2 hours at a time. Trying not to nap, so that bedtime would come easier. Ha. I wake up with a pain level of 3-4, ending my day with 8-10. I have lived with pain like this for 10 years.
Several years ago I heard about RLS and starting researching. I really don't remember when I first found this sight. It was fairly new at the time. As soon as I saw the words GROWING PAINS I started to cry. That was my childhood. I caught a break in my late teen and early 20's. Hot baths yes, are the way to go, and they worked fine for years. I broke my leg/ankle in four places 10 years ago. Wham, never have had a pain free day again.
Add to that the most unreal life experiences from 1996 to 2002. The major life changing things happened from Sept. 11, 2000 - Aug. 2002. I might mention that my husband is from NY. That period of time alone sent the symptoms through the roof.
It's been 4-5 years ago that I started to mention RLS to my Family Practice Doc. and the OBGYN. Family Doc. is one of the best in the country, still he didn't know much about it. To be honest, it was important but of the not the most important. I'm sure that he thought my sleep problems were all stress related. The pain we blamed on the old broken leg doesn't heal well. I was allowed sleep meds. only when I traveled, roaming other's homes at night was not a good option. We never really addressed the pain, other than endless foot and ankle Docs.. They found no reason for my problems.
OBGYN wrote in my chart.....PMS.
I sought treatment over a year ago with a sleep doc., our realationship has been a rocky one. I do not fit into the NORMAL mold of RLS, if there really is one. The Doc. has a problem with this, but I have many others in my family that have RlS. Mine is genetic. 7-8 of us now that I know of. My grandmother and I are (24/7) in pain. I itch and twitch, but learned to live with that somehow. I was taught as a child to sit still, Ladies do, you know. I found that I could excerise many muscles by wildly flexing my toes. No one could see inside my shoes, yet I was still. Sorta funny now.
To answer your questions. Yes, I am on medication Mirapex worked well for over a year. I could not take Nuerotin, my system rejected it. I'm very careful with pain medication. Most doesn't work any way for me. Hotbaths sooth, but only temp.. I'm on 14 days of Ambien to try and correct the sleep cycle.
The hot and cold thing, you might be right about poor circulation. It's a common theme in my family. But not many heart related problems, just my father.
Sorry to babble on.
Have a great day and keep up the good research.
-
guitar202
Hi Jumpyowl and becat!
Thanks for the kind and understanding responses. No, my main problem is not sleep, strangely enough. My worst symptom is the creepy crawlies going on constantly in my legs. I went to several doctors, had numerous blood tests, no one recommended neurological tests, MRIs, etc, because they all said I had no "serious" symptoms and was in general good health. My heart, blood pressure, all that good stuff, is fine. I'm only 31 and was told it may get worse later on.
I often do have a tendency to over-react and I'm sure some of my symptoms are imagined. I've always been a bit of a hypochondriac, but I'm not imagining these twitching sensations! My husband has said that my legs have jerked many times while I was asleep, but I've never been disturbed from them. (lucky me). No drugs yet, I do yoga and meditation, which helps a lot. I went on anti-depressants at first, but didn't like them.
Sorry to ramble on, but I'm excited to talk to people that understand. And I'm sorry for those who have more devastating symptoms. Be well,
guitar_202
Thanks for the kind and understanding responses. No, my main problem is not sleep, strangely enough. My worst symptom is the creepy crawlies going on constantly in my legs. I went to several doctors, had numerous blood tests, no one recommended neurological tests, MRIs, etc, because they all said I had no "serious" symptoms and was in general good health. My heart, blood pressure, all that good stuff, is fine. I'm only 31 and was told it may get worse later on.
I often do have a tendency to over-react and I'm sure some of my symptoms are imagined. I've always been a bit of a hypochondriac, but I'm not imagining these twitching sensations! My husband has said that my legs have jerked many times while I was asleep, but I've never been disturbed from them. (lucky me). No drugs yet, I do yoga and meditation, which helps a lot. I went on anti-depressants at first, but didn't like them.
Sorry to ramble on, but I'm excited to talk to people that understand. And I'm sorry for those who have more devastating symptoms. Be well,
guitar_202
Hello, Becat
Which part of TX are you hauling from? I lived twenty years in the Panhandle but now retired to East Texas, Lake Fork area.
Thanks for your informative post. I will just fire off some of my thoughts as I was reading yours.
Only about ten years ago finally some of the medical profession started to realize that pain even severe pain can exist without finding a clinical cause of it. It is not all in one's mind!
. This is when the pain clinics started to form all over the country, first at hospitals and medical schools.
My daughter has had a severe form of fibromyalgia. She is seeing two doctors. One for the control of pain which is maintained below 5 with a combination of medications worked out over a period of years. Another doctor is a hormone specialist (endocrinologist) who is working on to get her hormonal system in tune. She wrote many books for and about women, one was entitled "Screaming to be heard").
With your pain levels I suspect that you may also have fibromyalgia in addition to RLS. It can often be triggered by trauma such as your broken leg. The immune system gets out of kilter and it is a vicious circle because delta phase sleep is almost nonexistent (this is when the muscle repair is going on in the body).
Stress can exaggarate many symptoms and cause new ones. Having a Yankee husband probably did not help.
Do not fall for medical prejudices. Some of them can make on feel virtuous. One of them is against pain medications. If you have pain you should have relief. Actually you have a right to have relief. Pain medications have bad PR but it is often not justified and it even became a political weapon of sort. Even narcotics are safe and beneficial (and not even that addictive) if one takes them to relieve pain only.
Mirapex is fine for RLS but what are you getting for your pain? A sleeping pill? (ambien). It is so much better to go and treat the root of the problem which I suspect in your case is pain. The nice things about opioids that they also work on paresthesia (creepy feelings). As a matter of fact you could probably stop Mirapex if you were treated for pain (it would make sense as the dopamine agonist drugs block the effect of opioids but not the other way around).
Coincidentally, a week ago I stopped taking neurontin and another anticonvulsant. Now I am only on hydrocodone. The latter I had to take with neurontin, anyway. And it turned out that these anticonvulsants actually started to cause paresthesia due to early augmentation.
About the blood circulation. I also think is not due to cardiac problems but peripheral nerve problems. They control the cross-sectional area of regional blood vessels and thus the blood flow rate.
I am not a physician. And I am certainly not qualified to give medical advice. I just wanted to give you another perspective to view your state of health.
Your major problem would be to find an intelligent, open minded pain doctor to discuss your treatment, who is also familiar with both RLS and fibromyalgia. This is why I asked which part of the state you live.
Thanks for your informative post. I will just fire off some of my thoughts as I was reading yours.
Only about ten years ago finally some of the medical profession started to realize that pain even severe pain can exist without finding a clinical cause of it. It is not all in one's mind!
. This is when the pain clinics started to form all over the country, first at hospitals and medical schools.
My daughter has had a severe form of fibromyalgia. She is seeing two doctors. One for the control of pain which is maintained below 5 with a combination of medications worked out over a period of years. Another doctor is a hormone specialist (endocrinologist) who is working on to get her hormonal system in tune. She wrote many books for and about women, one was entitled "Screaming to be heard").
With your pain levels I suspect that you may also have fibromyalgia in addition to RLS. It can often be triggered by trauma such as your broken leg. The immune system gets out of kilter and it is a vicious circle because delta phase sleep is almost nonexistent (this is when the muscle repair is going on in the body).
Stress can exaggarate many symptoms and cause new ones. Having a Yankee husband probably did not help.
Do not fall for medical prejudices. Some of them can make on feel virtuous. One of them is against pain medications. If you have pain you should have relief. Actually you have a right to have relief. Pain medications have bad PR but it is often not justified and it even became a political weapon of sort. Even narcotics are safe and beneficial (and not even that addictive) if one takes them to relieve pain only.
Mirapex is fine for RLS but what are you getting for your pain? A sleeping pill? (ambien). It is so much better to go and treat the root of the problem which I suspect in your case is pain. The nice things about opioids that they also work on paresthesia (creepy feelings). As a matter of fact you could probably stop Mirapex if you were treated for pain (it would make sense as the dopamine agonist drugs block the effect of opioids but not the other way around).
Coincidentally, a week ago I stopped taking neurontin and another anticonvulsant. Now I am only on hydrocodone. The latter I had to take with neurontin, anyway. And it turned out that these anticonvulsants actually started to cause paresthesia due to early augmentation.
About the blood circulation. I also think is not due to cardiac problems but peripheral nerve problems. They control the cross-sectional area of regional blood vessels and thus the blood flow rate.
I am not a physician. And I am certainly not qualified to give medical advice. I just wanted to give you another perspective to view your state of health.
Your major problem would be to find an intelligent, open minded pain doctor to discuss your treatment, who is also familiar with both RLS and fibromyalgia. This is why I asked which part of the state you live.
Last edited by jumpyowl on Sun May 23, 2004 10:51 pm, edited 1 time in total.
Jumpy Owl