Discussions

Don’t know how much longer I can go on with this disease starting to get very very depressed with it. Sleeping at night now seems impossible. Have tried Gabapentin and Pramipexole both do not help. It seems that most doctors don’t know enough about this disease so they can’t help me. Wondering if there are any neurologists or nerve specialists that would deal with this condition because I don’t know what to do next. Have had this for 30 plus years and it gets worse every year. I am so over tired from lack of sleep I just dread going to bed at night. If the future for me is not to be able to sleep at nights tthen what is the point of carrying on .

All these years and your doctor has not referred you to a specialist? I would find a doctor who would. I am sure there are some that know more about it.  
 
Keep strong - I know what it is like to not sleep - have you tried sleeping pills to at least get some sleep.  
 
I know it seems terrible - but there is always a point to carry on.  
 
"Believe"  
 
I certainly know everyone cannot afford the Mayo Clinic, but if you can - go for it, your health is worth it.  
 
Edited by Brenda.., 2018-11-29 19:45:25

Have you ever looked into nutritional and/or herbal ways to treat it? That is the direction that I would be pursuing if I found myself in your position.  
 
Have you ever found out what your magnesium levels are? Deficiencies in this and other nutrients can cause a lot of issues and the majority of doctors don't know much about how to deal with most illnesses in this way.  
 
Finding a board certified herbalist or naturopath that can guide you through the process and give support would be a wise move. Don't give up. Fight it. You will find relief.  
 
Edit to add: This site has been a good one for me to check out some medical problems further. It might give you some ideas on how to start to begin to heal yourself.  
https://draxe.com/restless-leg-syndrome/  
 
Edited by Flutterby, 2018-11-29 20:26:28

I have tried several sleeping pills, still takes about three hours to fall asleep and then I am so groggy the next morning . All these years and no doctor has referred me to any specialists maybe because there aren’t any. It has been a mysterious disease that has no cure apparently . There is not even a whole lot of information online that helps . All I know is that it is a neurological beast condition. I will go to bed tonight at 10 o’clock like usual and fall asleep maybe at three or four if I’m lucky and that’s after fighting leg twitches, body movement and rolling from side to side every three or four minutes .

I have restless arms from time to time. I couldn’t imagine it every night!! The pain and discomfort is frustrating.  
 
My doctor prescribed lorazepam and I only take it if needed. It kinda helps. Have you tried that?

You said 'no doctor'. Have you not had a consistent family dr? Restless Leg Syndrome is sometimes linked to sleep apnea, and testing can be done at BRHC.  
 
Hope you can get this resolved quickly.

I’m so sorry, I know how horrible this is to deal with. I only dealt with it during pregnancy but I found the only thing that helped was eating a banana before bed each night.

Have you ever tried Osteopathy or Acupuncture for RLS? Worth looking into if you haven’t.

I have mild RLS. I only have occasionally. Typically in evenings while sitting like in a movie theatre or if a passenger in a car. If I’m driving the car I’m fine. It’s weird syndrome. If it is bad I take a hot bath, as hot as I can handle. And soak for at least 30 minutes. It helps me. However I know mine is minor.

Trust me after 30+ years of having this condition I have pretty much tried everything . And yes I have a family doctor but he knows nothing about restless leg syndrome . So far on this thread the only thing I haven’t tried is eating a banana at night and acupuncture but if either one of those helps I will definitely give it a go . Unless you’ve had this condition you have no idea what I go through . Thinking of going to see Dr. Benning tomorrow I’ve heard he’s good at giving referrals to specialists if there are any. I appreciate all of you who have commented on this thread maybe something will turn up from someone who actually has this condition . Lorazepam and terrazepam do nothing for me . It’s like a switch gets turned on at bedtime and can’t be turned off .

Have you tried CBD oil? If not give it a try

Dr Tamayo is the only neurologist in Brandon, he might be able to suggest other medications.  
 
Your best bet would probably be to ask for a referral to either the Sleep Disorder Center or the Movement Disorder Clinic, both are in Winnipeg. There are probably lengthy wait lists, but would be worth getting referred.  
 
http://www.deerlodge.mb.ca/mdcServices.html  
 
http://www.wrha.mb.ca/prog/medicine/sleep.php

comeonsummer said "I’m so sorry, I know how horrible this is to deal with. I only dealt with it during pregnancy but I found the only thing that helped was eating a banana before bed each night. "

I've had it in pregnancy too. The midwives had me take magnesium. It seemed to help. Incidently, bananas are a good source of magnesium!!  
 
If you soak in a tub, like someone else suggested, you can use epsom salts as another way to get magnesium.  
 
Hopefully you can get some relief. My mom gets it on occasion. My dad can't sleep in the same bed as her when it's bad, it keeps him up too because she moves around so much!!!

A close friend of mine has the restless leg syndrome and when she started to wear the Voxx socks she has had no symptoms at night anymore. She has stopped taking her meds for it now too. These socks are amazing! I don't know if they would help you but, hey, they are worth the try!

contact donnapawchuk@gmail.com

I am Donna who works with VoxxLife products. There are many people who have used our technology and have found relief. I would love to help, Valleygirl posted my email, drop me a line you wont be sorry!

i made a weighted pillow for my daughter and it really helped. i have noticed ads for weighted blankets but the pillow I used had a 5 gallon pail of seeds. filled the whole pillow case and than sewed it shut. She would put her feet under it at night.Really helped

casper said "i made a weighted pillow for my daughter and it really helped. i have noticed ads for weighted blankets but the pillow I used had a 5 gallon pail of seeds. filled the whole pillow case and than sewed it shut. She would put her feet under it at night.Really helped "

kind of seeds ?

it was so long ago that i can't be 100% but pretty sure it was barley. I got the seeds from a farmer friend and went with what he suggested. I literally used a 5 gallon pail worth. Needs to be quite heavy

I've had restless legs since i was a teenager. I step on something cold and take 2 tums. I'm not sure why but that seems to help me a lot.

Take magnesium daily. It makes a difference with restless leg syndrome.

Vein Sense. I got this at Hedley's and it seemed to help with my issues.  
Worth a try

Amitriptyline helped with my spouse’s RLS (& having a weighted blanket did too).  
 
One of the recorded side effects IS restless legs, but he said that it sometimes works in reverse for people with RLS. (He was a Doctor & prescribed many meds for “off label” uses.)  
 
LynWaterman. He did have sleep apnea and I think his RLS seemed better after he got his C-pap. Never heard that before or connected the two. Thanks.

My mom, who is in her 60s had RLS most of her life. At first, she would drink tonic water before bed and it would help. Then she started researching and studying her diet. She discovered that if she eats anything with nitrates in it, it affects her badly. No nitrates equals no restless leg syndrome for her. I'm not sure what has nitrates in it, but for her it's mostly processed meats and some other processed foods. Good luck!

This may sound pretty silly, but my parents had "twitchy" legs at night and they heard putting those little bars of soap that you get in hotel rooms or shaving soap bars and putting it under the sheet at the foot of the bed helps. They claimed it really helped - -cheap solution and worth a try. Have no idea if there is ANY science behind this.

https://www.almariemassage.com/  
 
Try here as i have been helped a lot with massage for circulation and tightness in the leg. They will amaze you with the results.

Nitrates: artificially added to processed meats (ham, weiners, deli meats), naturally occurring in some fruits & vegetables. Added nitrates are more harmful than naturally occurring ones, which are usually better tolerated.  
 
https://www.livestrong.com/article/541308-fruits-vegetables-that-are-high-in-nitrates/  
 
I did have RLS during pregnancy & years later it reoccurred sporadically. I also heard to eat bananas (not sure about the mag, but they are high in potassium). I never had that work for me.  
 
I did have a bad reoccurrance a few months ago. It made me feel crazy it was so unbearable. I could not keep my legs still. That time, there may have been many factors at play, but it happened after having sat in a tiny car with poor seats for a couple of hours, which I think added to it. It didn't happen on the way there, but did on the way back. I felt like opening the door and jumping out even while it was moving! It was extreme. It took a long time once stopped to get it to calm down & that was only a little. It wasn't until I was at home that I could deal with it further. That is the worst it ever had been.  
 
Possibly if it is magnesium related, an application of magnesium oil (the mag form is magnesium chloride) would get more magnesium into your body without digestive disturbances.  
 
Skinny Moon, did you check the Dr. Axe link? I added it after your reply that followed. The link has a lot of good & varied information.

First of all I want to thank all the people who have put suggestions and ideas forward to help my condition. I have tried 90% of them to no success but I’m willing to do anything to beat this thing or at least tame it down so I can actually sleep like normal people . Last night I went to bed at 10 PM as usual and fell asleep at roughly 3:30 AM. It was one of the longer ones . As soon as I stand the tingling situation stops but unfortunately I can’t sleep standing up . Yes i checked out the DrAxe web site and it was very informative . The soap bar at the foot of the bed worked for a couple of nights , the drugs I’ve been prescribed have work for a couple of weeks. The weighted blanket did nothing and I don’t eat any foods with nitrates in them I actually eat quite healthy . I will however pick up some more magnesium rich based foods today. Strangest part of this whole thing is that because I am so tired from lack of sleep I can sometimes lay down on the couch in the afternoon and have the best sleep of my life for a couple of hours without any leg twitches. Sometimes!

Based off your comment about the couch, I wonder if it’s something with the positioning of your hips or back that is affecting the nerves, something maybe out of line that cuts off circulation/compresses nerves in certain positions.  
 
I have heard of someone with minor RLS putting a hot water bottle or bean bag on their legs or feet to make it stop.  
 
Edited by Seana-T, 2018-11-30 14:34:14

and how I used to be as well. Until I invested in a proper weighted blanket (do not use one with seeds, barely or other food sources in your bed, unless you want mites/bugs)I purchased a weighted blanket and it literally changed the way I sleep. No more RLS. I got a really heavy one, 20lbs and it is amazing.  
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