Greetings!
As a few others have mentioned recently, I too, was directed here by 'Dear Abby'. I wonder how much traffic that particular letter has generated for the board.
I am a 56 year old female and have suffered with RLS for approximately 15 years. My father had it and was a miserably poor sleeper. He drank and his doctor prescribed valium in an effort to relieve his symptoms. I don't know if it helped much. He died of Alzheimers 20 years ago. We were not close.
My doctor prescribed clonazepam for my RLS and it helped for the first few years. It failed me and I suffered a few more years doing nothing but walking and the self torture stretching I will describe below. She didn't know of anything else that would help. This was 12 years ago.
My current doctor has had me on Neurontin for 4 years and it works okay some of the time but not all of the time. She recently added lorazepam to the cocktail and that has helped even more. She prescribed the lorazepam reluctantly saying she would rather see me on prozac or the like. After reading much of what has been written here about anti-depressives exacerbating the condition of RLS I will accept that over my dead body!
I have tried it all with the exception of the Black and Decker sander. LOL! I will pass on that one.
I have, fortunately for me, only two areas that are affected by this miserable condition. An area of approximately 24 square inches each on both quadricepts about 3 inches above and to the outer edge of each knee. The left quad spasms out on me 90% of the time and the right is affected much less frequently. But as to location, it is quite symmetrical.
Walking, of course, is the best way to relieve the symptoms, but in my earlier years when I was taking nothing for it, I discovered a stretch that helped tremendously. As it was usually my left quadricept that wanted the attention, I would lie on my left side pitched slightly forward. Then bend my left knee and grasp the ankle with my right hand. While canting my hips forward slightly I pull my left leg back to a comfortable but effective position. Repeat as necessary for the opposite leg. This is not an easy stretch for all but fortunately for me I am quite flexible. I have practiced Yoga for quite some time.
A few months after I discovered the stretch I devised a way to hold the position in bed and still sleep. Haha! I have a wide, soft elastic band used for physical therapy. You may know the type of band I am writing about. I loop the band through the headboard, tie the ends together and place my ankle in the loop. Positioning my body in the above mentioned position without using my hand actually did give me some respite and I was able to sleep. Hallelujah!!!
I have been in acupuncture therapy for several months and it has helped to a degree. I am going to make an appointment with my doctor to have my iron level checked. Sounds like the right place to go with this next.
One final thing. My first symptom with this 15 years ago was twitching of the skin on the area that is now affected internally. I was amused in the beginning because the twitching was funny to look at and it didn't bother me. It was only the left leg. the twitching lasted about 6 months. The right didn't kick in until 7 or 8 years after the onset of the left. It started with a vengeance. No twitching.
I am happy to have found this Board. A thousand 'thank you's' to those who set it up and run it.
Self torture
Welcome!
Hi Pretzel, it's Jan
BTW, I love your handle!!! I've had RLS for 20 years, diagnozed officially for approx. 12-15 years. Fun, isn't it? LOL I think my father may have had it, but he died in '79, and of course, no one knew what RLS was then. I just remember him having "leg" problems. I have, what I would consider, pretty severe RLS. I'm on Clonazepam and Mirapex. I've been on Clonazepam for quite a few years, however, it's not helping anymore and a trip to my neuro is forthcoming. I'm starting to have a lot of pain. That has to be checked out. Your ideas of the rubber bands in bed sound very interesting. Do they help with leg cramps? I don't usually have trouble with the creep crawlies anymore. Just don't sleep period. But, do experience much pain. I've never experimented with alternative methods, except, of course, the usual walking and walking and walking. I'm so glad you found us. We're a big family here. This is where you'll find much info, get to know lots of people, exchange ideas, and finds lots of shoulders to lean on and ears to listen when you need to vent. We have some very knowledgeable people who know all things scientific and have some people who are great at researching. As I said, we are a big familiy and take turns holding each other up when we need help. Glad to get to know you!!
Jan
BTW, I love your handle!!! I've had RLS for 20 years, diagnozed officially for approx. 12-15 years. Fun, isn't it? LOL I think my father may have had it, but he died in '79, and of course, no one knew what RLS was then. I just remember him having "leg" problems. I have, what I would consider, pretty severe RLS. I'm on Clonazepam and Mirapex. I've been on Clonazepam for quite a few years, however, it's not helping anymore and a trip to my neuro is forthcoming. I'm starting to have a lot of pain. That has to be checked out. Your ideas of the rubber bands in bed sound very interesting. Do they help with leg cramps? I don't usually have trouble with the creep crawlies anymore. Just don't sleep period. But, do experience much pain. I've never experimented with alternative methods, except, of course, the usual walking and walking and walking. I'm so glad you found us. We're a big family here. This is where you'll find much info, get to know lots of people, exchange ideas, and finds lots of shoulders to lean on and ears to listen when you need to vent. We have some very knowledgeable people who know all things scientific and have some people who are great at researching. As I said, we are a big familiy and take turns holding each other up when we need help. Glad to get to know you!!
Jan
No one is alone who had friends.
Hi, Jan.
I've enjoyed reading your posts. I hope you are doing okay today. I don't have leg cramps or pain. Just the uncontrollable urge to 'move'. My husband tells me my legs jerk when I'm asleep, too. With my new medicinal 'cocktail' at night I don't find the need to tie myself up anymore but I still do the stretches frequently. Sleep has been worse. I have been getting 4 to 6 hours most nights for the last 3 months or so. But still the occasional sleepless one. "Nights" for me are generally from about 2AM 'til whenever. Sleep for the most part is piecemeal. It is a very rare thing for me to get 6 hours straight.
I've enjoyed reading your posts. I hope you are doing okay today. I don't have leg cramps or pain. Just the uncontrollable urge to 'move'. My husband tells me my legs jerk when I'm asleep, too. With my new medicinal 'cocktail' at night I don't find the need to tie myself up anymore but I still do the stretches frequently. Sleep has been worse. I have been getting 4 to 6 hours most nights for the last 3 months or so. But still the occasional sleepless one. "Nights" for me are generally from about 2AM 'til whenever. Sleep for the most part is piecemeal. It is a very rare thing for me to get 6 hours straight.
Hi Pretzel, it's Jan
I'm glad you like my posts. Sometimes I wonder about them! LOL
I know what you mean about "piecemeal" nights. I am EXACTLY the same way. I go to be very late (sometimes 1 or 2 am) and awake about 5 or 6 am, often getting up 3 or 4 times a night. Thank goodness for cable and computers!!! I also have leg movements at night (periodic leg movement disorder), but not EVERY night. My husband has sometimes counted to five for 30 minutes and my legs will kick every five seconds. This doesn't happen as often as it used to. Sounds like we're a lot alike. A lot of people have different symptoms. I hope you enjoy this forum as much as I do. Thanks for asking how I feel. I hope I don't sound like a whiny person. I was also so independent and never complained. I HATE THIS!!! I'm afraid I don't make a very good patient!! Ha!! It's aggravating when you can't or don't feel like doing things you used to do at a fever rush (my family used to call me the Energizer Bunney)! Oh well, we can always find someone worse off than ourselves! But, I guess we all can have an occasional pitty party! Once again, welcome!!
Jan
I'm glad you like my posts. Sometimes I wonder about them! LOL
I know what you mean about "piecemeal" nights. I am EXACTLY the same way. I go to be very late (sometimes 1 or 2 am) and awake about 5 or 6 am, often getting up 3 or 4 times a night. Thank goodness for cable and computers!!! I also have leg movements at night (periodic leg movement disorder), but not EVERY night. My husband has sometimes counted to five for 30 minutes and my legs will kick every five seconds. This doesn't happen as often as it used to. Sounds like we're a lot alike. A lot of people have different symptoms. I hope you enjoy this forum as much as I do. Thanks for asking how I feel. I hope I don't sound like a whiny person. I was also so independent and never complained. I HATE THIS!!! I'm afraid I don't make a very good patient!! Ha!! It's aggravating when you can't or don't feel like doing things you used to do at a fever rush (my family used to call me the Energizer Bunney)! Oh well, we can always find someone worse off than ourselves! But, I guess we all can have an occasional pitty party! Once again, welcome!!
Jan
No one is alone who had friends.
Welcome Pretzel,
It's great to hear you've done a bunch of reading here, even the B&D post! We are a diverse group with many different symptoms & solutions.
I'm a lifer, can remember symptoms as a little girl, but wasn't diagnosed until about 10-15 years ago. I used stretching and exercise for years as a way of controlling the RLS, then lorazapam for several years until that stopped working. I'm currently taking a low dose of Mirapex (.125mg) and am thrilled with it. I can sleep a full night (ok, 5-6 hours), normally with no symptoms. I'm so thankful that I've found relief for now.
Hopefully your doctor is open to working to finding the most effective treatments FOR YOU. It sounds like you're doing your part in staying educated about RLS, and taking responsibility for your healthcare. Let us know how the accupuncture works, I've done it for other health issues, but not RLS. Best,
Heron
It's great to hear you've done a bunch of reading here, even the B&D post! We are a diverse group with many different symptoms & solutions.
I'm a lifer, can remember symptoms as a little girl, but wasn't diagnosed until about 10-15 years ago. I used stretching and exercise for years as a way of controlling the RLS, then lorazapam for several years until that stopped working. I'm currently taking a low dose of Mirapex (.125mg) and am thrilled with it. I can sleep a full night (ok, 5-6 hours), normally with no symptoms. I'm so thankful that I've found relief for now.
Hopefully your doctor is open to working to finding the most effective treatments FOR YOU. It sounds like you're doing your part in staying educated about RLS, and taking responsibility for your healthcare. Let us know how the accupuncture works, I've done it for other health issues, but not RLS. Best,
Heron
Hi, Pretzel:
I probably could not pass the first double curve forming the pretzel shape.
Just wanted to add: make sure you find out the actual value of your ferritin level. Also the range of values obtained at that particular lab (depends on the calibration, apparently).
If you are below 18 ng/ml then that is your major problem. Actually a blood test is a good place to start. Make sure they check your magnesium level as well. If you are below 45, it is still low but you will not benefit much from oral iron medication.
Also you may want to consider a sleep test.
Your sensations seem to be highly localized. That is not generally typical of RLS. It would be interesting to see whether you have PLMD.
Belatedly, welcome to our group!
Just wanted to add: make sure you find out the actual value of your ferritin level. Also the range of values obtained at that particular lab (depends on the calibration, apparently).
If you are below 18 ng/ml then that is your major problem. Actually a blood test is a good place to start. Make sure they check your magnesium level as well. If you are below 45, it is still low but you will not benefit much from oral iron medication.
Also you may want to consider a sleep test.
Your sensations seem to be highly localized. That is not generally typical of RLS. It would be interesting to see whether you have PLMD.
Belatedly, welcome to our group!
Jumpy Owl
Regarding Ferritin levels, in the "for what it's worth" category, I had mine checked in May and was at 20 (10-290 is 'normal') so I was on the very low end. After 3 months of oral supplementation my levels increased to 50 something. There has been no change in my RLS symptoms with increased ferritin levels.
Perhaps the increase is not great enough, or maybe, as some medical experts believe, it has more to do with our brains ability to uptake/store it.
I still believe it's important to have it checked, don't get me wrong, but increasing your levels may not help. Your mileage may vary...
Heron
Perhaps the increase is not great enough, or maybe, as some medical experts believe, it has more to do with our brains ability to uptake/store it.
I still believe it's important to have it checked, don't get me wrong, but increasing your levels may not help. Your mileage may vary...
Heron
Self Torture
I've read about this iron level and ferritin level issue and I'm wondering how much truth to place in it. I have a genetic disorder called "hemochromotosis" - a condition where your body retains too much iron. This condition can be deadly - it causes liver, kidney and heart damage; and can also cause liver cancer. The only way to treat it is by giving a pint of blood whenever the levels are too high - which for me is approximately every two months. My RLS has continued to worsen over the years even though I am no where close to being anemic. I'd like to know more about the relationship between iron levels and RLS - I wonder if too much iron can also make the symptoms worse. Any suggestions?
Thanks - Connie
Thanks - Connie