Any one with severe restless legs?

[lilacladyuk]

I have got severe restless legs and i am finding that each new medication that i try is brilliant for the first week but then i am back to normal (every time i sit down my legs start)There is not much left for me to try now is anyone as bad as this, if so i would be interested to know how you cope with it.

[Hidden]

I have severe RLS, but the medication i am using now is taking care of the symptoms most of the time....i am using the Neupro Patch. You might have to try a few more meds. to find the right one....i think i have tried them all...

[lilacladyuk]

Yes also i think i have tried them all!! i tried the Neupro Patch went up to 6mg worked great for a week then my symptoms started again. Now back on Pramipexole but it makes me so sleepy...

[BobM]

Hi I have severe RLS and Pramipexole, Gabapentin and OxyContin does the job most of the time. I haven't found anything that is 100% 100% of the time. The above combo is the best for me. What level of relief are you expecting? And do you have painful RLS?

[lilacladyuk in reply to BobM]

Hi BobM No i dont have painful RLS but it drives me mad, when my lelgs are at there worst i can only sit down for half hour at the most before my legs start, dont matter what time of the day it is. I am on the Neupro Patch 6/mg and take half a 0.35mg of Pramipexole in the evening i would just like to find something that lets me sit and relax in the evening without sending me to sleep.

[BobM in reply to lilacladyuk]

Sorry but my experience says you cant have both all the time. My drugs combo allows me 40% OK evenings and nights and by OK I mean bearable. I get one day / night in 60 with 100% freedom.

Sorry I cat offer more.

Bob M

[Hidden]

My personal view of the Legcalm, is if its sounds to good to be true, then thats what it is. It doesnt say it supports RLS, but that bad circulation causes that restless night...RLS is neurological (sp) its a inbalance in the brain, not bad circulation. Of course the testimonials will say its all good but you dont know if those are from real people... This is just my personal view of these type of websites, if you think you have the money and want to try it then go for it. Just remember if you are taking meds for RLS and then add a herbal remedy you need to do research that taking both will not harm you...or that even the herbal remedy is harmless for you...just because it says herbal, they can still give side effects...

[Hidden]

Lilacladyuk,, maybe like BobM, you might need to try a combination of meds. Something you could discuss with your doctor.. Also using 2 meds. you might be able to keep the dose lower, so then not getting the bad side effects...I havent had to try a combination so i am only guessing on that...

[Darcy]

I have severe RLS as well, the best thing to do is persevere with the medication. The body needs to build up a 'store' of the medication, and then it becomes like a slow release. Don't switch Meds or you'll be back to square one.

Hope that helps.

[CathyS]

After 25 years with severe RLS, I find the Neupro patch is an absolute miracle. If I patch several hours before I plan to sit, it is 100% effective. It's real rough on my skin but I'd rather itch than twitch! All the oral meds were useless or not consistent. Have you tried Neupro? I'm planning a 9 hour plane trip with my daughter, and she said "patch or parachute!". I'm not real pleasant to be around when my legs are bad... Good luck

[lilacladyuk in reply to CathyS]

Yes i have been on the Neupro patch went up to 6mg and like most things i go on now, is brilliant for a week or two then i am back to square one. Its a real nightmare mine starts about 20 mins after i sit down dont matter what time of the day it is, so i take a Mirapexin about 5pm the problem is by about 8.30 i cant stay awake. I have been offered DBS but dont wont to go down that road. The only thing at the moment that gives me some relief is a tablet called phentermine which you can buy at the National slimming centre but at £20 for 7 tablets is very expensive . It is not available on prescription as i have been told it is an american tablet and has been banned in this country. But like you flying is a nightmare so i always buy them to go on holiday each year.

[Shoeinthree in reply to CathyS]

Finally someone with the itch from the Neupro patch good lord I could rip the skin off my back it's so darn itchy, today is the day I start my second patch of Neupro so I guess I'll be itching twice as much, lol

[palomino]

Oh I so know how you feel. I have had RLS for 47 years and have tried most medications to no avail. I sometimes want my legs surgically removed! It is not only at bedtime, but it wakes me up in the morning, if I sit for longer than half an hour it starts and because I suffer with fibromyalgia and chronic fatigue, the last thing I want to do is walk around. I sometimes walk quite a bit in the day hoping the exercise will help and wear me out, but again no. There is no regular time of pain for me, sometimes its the left leg, then another time the right. I also suffer extreme pain in my knees. Sometimes I am up all night either walking or swinging legs from bed or settee. Sleep deprivation has had a terrible effect on me over the years and I have almost developed a sleep phobia especially in shops when I see beds all beautifully dressed, as I know that however inviting a bed can be, as soon as I get into mine the damn legs start. I completely empathise with anyone who suffers with severe RLS and wish that we could all be cured.

[kdun]

I have been diagnosed with severe restless leg syndrome. I have been on every kind of meds out there. My Dr. Kept trying me on so many different kinds and nothing would work. I am now taking Percocet 4 times a day and right now it seems to be working.The Dr had me taking two narcotics and I couldn't take the side effects. I do find that I am always tired though. I have tried yoga and natural remedies and nothing seems to work.This is such a painful ailment that no one really understands what you are going through.A few years back we went down east to visit family and I had to fly back because I couldn't take the drive, I had no clue at that time that this would be the result. I wouldn't wish this terrible disease on anyone.What do you take?