Restless Legs and Arms

[Caliegirl]

Hello everyone,

I've had restless legs since childhood, I just didn't know what it was. Now I'm 51, and it has gotten worse. I now have it in my arms as well. And yes, the fan makes it worse, I have to cover my legs and arms when fallIng asleep. Sometimes it doesn't matter, I will still get it. I've tried Parkinson's medication, didn't like it, only ambien worked. But I didn't like the drowsy feeling the next day. Now I don't use anything. I'm learning how to deal with it naturally, although very frustrating at times. What works for me: getting up and walking around, and getting a drink of water; softly rubbing my arms or belly, this distracts the feelings in my legs and arms; placing my arms underneath me, the weight overrides the restless sensation; stretching in bed; doing crunches in bed; any activity that stimulates sensation that overrides, or distracts the restlessness. It's a continuous battle, but I notice that if I give into it and become frustrated, it only makes it worse. I appreciate any information anyone can share, on other ways to manage this without medication.

[Jdboyle1]

Hi Caliegirl, have you ever tried Gabapentin or Requip (Repinirole)? Both have worked for me, I'm currently taking 300mg of Gab 3 times a day and seems to help a lot and I've been super inactive lately. Also, have you seen a neurologist before or been tested for fibromyalgia? My RLS is most likely a dopamine defecency per a past neurologist and I've had tons of tests done. Also, look up and ask your doctor about these daily patches called NeuPro, they were the best meds I've ever had for my RLS (my neurologist at the time gave me some free samples) but then my insurance didn't cover them and they're very expensive.. (so he wrote me the best generic, Requip). See if your insurance covers them too, hands down, seriously the best treatment I've ever had and I didn't experience any side effects, I wish I could afford them.. Check it out! neupro.com/parkinsons-disea...

[Caliegirl in reply to Jdboyle1]

Hello Jbdoyle,

Yes, I tried gabapentin. I did not like how it made me feel. Apparently, I had a bad reaction to it. I'll keep the alternative in mind. Thank you.

[Bkc1777]

Hi there,

Are you following a healthy diet? Do you know your ferritin level? On any supplements? Exercising?

I don't use any medication either and trying to cope with mild symptoms. I started with low FOODMAP diet so please search and read about that. It helps loads of people. I try to stick to my healthy eating with no caffeine, no chocolate and alcohol. Also very careful with the sugar intake too. I try to walk 5 times a week around 6k. I was on pramipexole. It has been more than a month and I feel like a new person now. I have started taking iron bisglycinate as my ferritin level was so low. That helps big time in my case. You just need to make sure you take it on an empty stomach before bedtime. I am taking folic acid, b12, magnesium and calcium. But please check with your GP first if you are ok to take them if you are going to have a go.

I believe my RLS is mostly food related so keeping a diary works for me. I write everything I eat. That gives me an idea what triggers my RLS. I know it isn't that easy for everyone though.

When I can't settle at nights I try to distract myself other than trying to get to sleep as that makes me more frustrated. I try to lie down on my knees and that seems calms it a bit sometimes. Try bending toes for about 20 seconds too. Not trying to be rude here but sex is another relief.

I hope you can carry on without medication but it is nice to know there are some medication we can use if we are desperate.

Good luck and stay strong.

B.

[Caliegirl in reply to Bkc1777]

Hi B,

Ha...I'm glad I'm not the only one who lies on my knees to try to manage symptoms. Distraction does seem to work best. I will also rock back-and-forth on a medicine ballsometimes...again, distraction.

I do for the most part try to eat a healthy diet. I do not drink alcohol or caffeine...my weakness is chocolate. :/

I will look into the Foodmap diet. Thank you.

I know my biggest trigger is when I'm tired, and there is background noise. I need to be in my own bed, and dark, quiet room.

[canadagirl1964]

hi! i too have had restless leg syndrome for years. I'm 53 now and it hasn't gotten any worse but it hasn't gotten any better either. i sometimes get it in my arms too but it seems to mostly affect my right leg. the only thing that eases it is walking or distraction. I've been up many nights unloading the dishwasher or folding laundry at weird hours. people that don't have this, don't understand it. i finally tried CBD oil last night. i took the first dose last night which i believe was 2.5ml and then went to bed. it seemed to help actually but i woke up a bit later and my legs were going at it. so i took another dose which really helped; i woke up out of a deep sleep my legs perfectly still but my stomach was upset a bit which i read can be a side affect. so tonight i will take one dose again and see what happens. CBD oil is relatively inexpensive. it might work for you. and i don't want to take an actual medication for it. i figured CBD oil is natural and i it doesn't get you stoned. restless leg syndrome is so disruptive. finding something that helps is like winning the lottery. i hope you find something that works.

[Caliegirl in reply to canadagirl1964]

Hello Canadagirl,

Yes, living with RLS can be very stressful and disruptive. I too have been up at all hours of the night folding laundry, or walking ony treadmill, rocking on my medicine ball. Thank you for sharing.

[canadagirl1964 in reply to Caliegirl]

hi again. 2 nights in trying the CBD oil. worked like a charm. i am up at 3:30 but not because of RLS. i just can't sleep...i am sitting quite comfortably at my computer. last night i took the CBD before my legs started going crazy. tonight i took it after and wow what a difference. if you haven't seen it already, check out CNN's sanjay gupta's "weed" documentary. he has changed his opinion on pot dramatically because of the amazing affects CBD oil can have on someone with a neurological disorder. CBD oil is not a drug and it contains no THC which will get you high which is what i wanted. CBD may be able to help. i am only 2 nights in but i will keep going. i hope you find something that helps!

[Cantstopwontstop in reply to canadagirl1964]

I have found relief from both CBD and THC. I can attest first hand immediate pain and motion control. I too get severe pain and involuntary movement throughout my body. We can do it!

[kicinskil in reply to canadagirl1964]

Hi, please could you tell me where you get the CBD oil?

[canadagirl1964 in reply to kicinskil]

i got it from a friend who has a dispensary. i am not sure if you need a prescription from your doctor. there isn't any THC in it so I'm not sure that you would.

[involuntarydancer]

I find a bath with epsom salts before bed - as hot as you can bear - 20 minutes in the bath can be helpful though it's not entirely reliable. I sometimes follow it with a cold shower for as long as I can bear. Not entirely sure it works but does make you feel good.

If I have RLS in my legs only, I sometimes find that elevating my legs up against the wall (I have to turn around as top of bed is against the wall) with bum as close to wall as possible can alleviate symptoms after about 10 minutes though again not wholly reliable.

Gentle yoga stretching exercises can also help though again some nights I have done them over and over to no avail (other than increased flexibility).

Obviously walking about helps but it's not conducive to sleep. For me the only reliable option is medication.

[darena in reply to involuntarydancer]

I was in your situation until I bought a Relaxis pad. It worked to my surprise. It took a week or so to kick in and I am now free of any pain!! You can take it on a rental basis if you like.

Daren

[julz68]

Hi

I also did the same things, sat on my legs and put as much weight down on em as I could, as for my arms I would swing them around, it helped for a bit until I wanted to lay down and sleep it starts up again. I couldn't handle it that's why I got medicated.

[Debsmullins6]

Hi ya,I know you said you are trying to manage it on your own,without drugs but please try Ropinirole,it can also help with your insomnia too!! I take it and within 20 minutes it stops!!

Debs x