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Old 08-04-2011, 01:10 AM   #1
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Please help, losing my mind with RLS !

Hi I am 41, due to "womens problems" I have been on morphine patches for 5 years for pain relief. Came off them 4 weeks ago and my restless legs and arms have got worse.
I have no slept for 3 weeks, my neck jerks, my arms "punch" when I am at least expecting it, and my legs kick out, this all happens as soon as I go to bed.
I have tried hot baths before bed, walking at night and herbal sleeping pills and yet nothing has helped. I am slowly going mad with the lack of sleep. Been to see my doctor she said there was nothing she could give me!
Please help........
Thanks will wait to hear from you all.
X

 
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Old 08-04-2011, 01:18 AM   #2
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Re: Please help, loosing my mind with RLS !

Take magnesium, warmth makes them worse I find, walk on cold tiles. Maybe withdrawal from the patches has upset them. Hope these hints are helpful this is what helped me. Also if you got to bed and they start, get up, I find distraction of a cross word or something challenging the brain, takes my mind off it and they stop. Good Luck

 
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Old 08-04-2011, 01:24 AM   #3
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Re: Please help, loosing my mind with RLS !

Thank you will try anything. The patches I feel just covered up the problem but I slept like a baby when I was on them, now night time is hell !!!
Will try your hints tonight, thanks again X

 
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Old 08-04-2011, 10:51 PM   #4
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Re: Please help, losing my mind with RLS !

calcium and magnesium before bedtime and a bar of soap by your feet. It really helps.

 
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Old 08-24-2011, 06:18 AM   #5
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Re: Please help, losing my mind with RLS !

Hi Booboo!

I am so sorry for your horrible RLS. I also have severe RLS. No sleep for days, except for 5 or 10 minute nod offs.

My wonderful doctor told me to take a tablespoon of mustard - regular yellow table mustard. I always have to have a glass of water ready, to wash it down. It does not always work, but if I can catch that very first creeping feeling, and take the mustard, it will stop the jerks, but only for about 15 minutes to an hour. A welcome relief to someone with chronic RLS.

I've not tried the soap yet. I cannot find out which kind of soap is supposed to help. I read somewhere to use lavender or lilac soap, but cannot remember which one.

One thing that I do, is walk around the house a bit. It will not stop the jerks, but they will go away for a few minutes, and, of course, there is no jerking while having weight on my legs. It also seems that some people on here have good results with exercising, but my experience, along with others is that exercise makes it much worse - not the going to the gym kind of exercise. If I have a busy day, then I know that I face agony that night. It sounds like you and I have very similar symptoms.

I tried requip and mirapex. Both helped a bit, but the side effects were horrible. I take a large dose of gabapentin, but most nights, I wonder why I take it. I also have my jerks day and night.

There is a new drug that was just approved that is named Horizant. The chemical make up is supposed to be different. I have not tried it yet.

One thing that I do is this... I lie on my side, on my sofa, and curl my body up, so that I am all scrunched up, with my feet flat against, and pressing hard against the arm of the sofa. It helps sometimes, sometimes it does not.

BUT, my main advice to you is this..... FIRE YOUR DOCTOR!!! She is supposed to be treating you. It is completely unacceptable for her to tell you that there is nothing she can do for you, after you described your misery and agony. This is especially true when there are 4 drugs out there, being used for RLS, that she could have given you. She could have at least referred you to another doctor. I apologize if you like her, but she blatantly disregarded her oath of "do no harm". In my opinion, she is an uncaring, sorry excuse for a doctor. You can look for an RLS Support Group in your area, and they can probably give you the name of a good doctor.

I don't know if any of that will help you or not. I pray that you will find something AND someone to help you.

sobs

 
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Old 08-24-2011, 10:24 AM   #6
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Re: Please help, losing my mind with RLS !

Hi, thank you for your advice. I went back to see another doctor last week who is going to try me on requip. The doctor i saw before has left!!!!! I wonder why she was a waste of space.
Will let you know how I get on and will mention the new drug which you talked about to the doctor.
At the moment I am cheating. I had some liquid morphine left over, so after I have tried to go to sleep usually 2 hours of jerking legs and arms, I take a tea spoon which calms them down and I eventually get a couple of hours. But people who dont suffer do not realise how distruptive it makes your life. No sleep which then makes 10 hours at work the following day awful.
I know the morphine is the last resort, but at the mo I dont care...I need sleep!!!! I have just started a new job and I cant afford to look like terrible, and not perform my job to the best of my ability.
Keep in touch
BooBoo xx

Last edited by mod85; 10-13-2011 at 05:46 PM.

 
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Old 09-04-2011, 02:29 AM   #7
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Re: Please help, losing my mind with RLS !

Hi Boo!

Any help with the requip yet? If that doesn't work, see if he will try you on regular gabapentin, or the new drug Horizant, which is a different kind of gabapentin.

Did you try the tablespoon of French's mustard yet? I cannot believe that it works, especially for severe RLS, but it does work for me sometimes. Also, I can always have another tablespoon when I need it. It's hard for me to get it down, and must chase it with a glass of water, then eat a few crackers.

Also, have you had your iron level checked? When mine gets low, OMG, I go days without sleep. Even when mine got to the low normal, I kept taking one slow release tablet a day. If I go without an iron supplement, I am in trouble. Make sure you get the slow release kind. It is much easier on the tummy.

I'm glad you found a different doctor. I have a fabulous, very caring doctor. Most of the studies and reports on RLS state that opiods are the best thing for RLS, but are used as a last resort for severe RLS. Your new doctor hopefully knows that. Perhaps you could find a couple of the articles on the web, and take them to your doctor. You might want to try a lesser opiod, like hydrocodone (vicodin, lortab). There is a liquid hydrocodone named hydromet. It is the best thing, because it does not have tylenol in it, which can tear up your liver. It is also excellent because IT WORKS FASTER than a pill!!!!!!!!!

Keep me posted! Hope you can get some restful sleep!!!!!
sobs

 
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Old 09-22-2011, 11:48 AM   #8
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Re: Please help, losing my mind with RLS !

I am also a victim oof RLS...Everything I tried worked for awhile, requip, mirapex, etc., then I'd have the dose increased until eventually it just didn't work anymore. I found Magnesium in high doses and it has saved me from going absolutely crazy! I have lowered my Mirapex dose to the smallest dose and along with it, take an extemely high dose of Magnesium.... (five 400mg tablets). My doctor knows and has not yet told me not to take such a high dose of Magnesium, so will continue to do so. Also, I take these at least two hours before I go to bed. An hour before bed is not long enough. It takes me a couple hours to get everything in my system. It is not a cure, but, it sure has calmed what was severe restlessness in legs and along both arms' from fingers up and through shoulders.... There was a time when I would tell myself I couldn't live my life with the horrible feelings I would experience when I would go to bed and then during the day also. I am resigned to the idea I will always have this but am always looking for new information that will help this condition. For now the magnesium and Mirapex is keeping me sane. Hope this has helped.

 
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Old 10-12-2011, 11:31 AM   #9
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Re: Please help, losing my mind with RLS !

Quote:
Originally Posted by booboo2010 View Post
Hi I am 41, due to "womens problems" I have been on morphine patches for 5 years for pain relief. Came off them 4 weeks ago and my restless legs and arms have got worse.
I have no slept for 3 weeks, my neck jerks, my arms "punch" when I am at least expecting it, and my legs kick out, this all happens as soon as I go to bed.
I have tried hot baths before bed, walking at night and herbal sleeping pills and yet nothing has helped. I am slowly going mad with the lack of sleep. Been to see my doctor she said there was nothing she could give me!
Please help........
Thanks will wait to hear from you all.
X
When I mentioned my symptoms to my endocrinologist, he explained that I was retaining water. When you go from a vertical position to a horizontal position, the water moves to a "new level" and affects the nerves. He prescribed FUROSEMIDE which is a generic of LASIX. This seems to be helping me. Are you retaining water? You can tel by looking at you ankles after removing your socks. There will be an indentation in your skin.. Hope this helps.

Last edited by pbahm; 10-12-2011 at 11:33 AM. Reason: added info

 
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Old 10-13-2011, 06:28 AM   #10
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Smile Re: Please help, losing my mind with RLS !

Quote:
Originally Posted by sobs View Post
Hi Boo!

Any help with the requip yet? If that doesn't work, see if he will try you on regular gabapentin, or the new drug Horizant, which is a different kind of gabapentin.

Did you try the tablespoon of French's mustard yet? I cannot believe that it works, especially for severe RLS, but it does work for me sometimes. Also, I can always have another tablespoon when I need it. It's hard for me to get it down, and must chase it with a glass of water, then eat a few crackers.

Also, have you had your iron level checked? When mine gets low, OMG, I go days without sleep. Even when mine got to the low normal, I kept taking one slow release tablet a day. If I go without an iron supplement, I am in trouble. Make sure you get the slow release kind. It is much easier on the tummy.

I'm glad you found a different doctor. I have a fabulous, very caring doctor. Most of the studies and reports on RLS state that opiods are the best thing for RLS, but are used as a last resort for severe RLS. Your new doctor hopefully knows that. Perhaps you could find a couple of the articles on the web, and take them to your doctor. You might want to try a lesser opiod, like hydrocodone (vicodin, lortab). There is a liquid hydrocodone named hydromet. It is the best thing, because it does not have tylenol in it, which can tear up your liver. It is also excellent because IT WORKS FASTER than a pill!!!!!!!!!

Keep me posted! Hope you can get some restful sleep!!!!!
sobs
Please go see my post at the top of the rls list of discussions. It's label is 'Restless leg syndrome cure for me'. I think it could really help you.

 
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Old 10-21-2011, 07:15 PM   #11
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Re: Please help, losing my mind with RLS !

Hi..sorry but i have tried everything that everyone has suggested.did not work for me.i suffered for almost 1 1/2 years .i went to a new doctor she told me this..go to a store even a dollar store and buy u tums..take two tums every morning .drink water and eat a banana or nuts or drink crystal lite.in two days i now do not have RLS..ur body is lacking calicum and potassisiom.she told me do not take calicum pills.the nuts etc is for potassisiam..i hope this helps u..please give it a try and stay away from meds for this..it is amazing, i now do not dread going to bed.i use to stay up till 2 am because of this .then i would have to get up a 5..not good .i was so tried i could not funtion anymore..this small info she gave me has changed my life..i have been free of this for almost 4 weeks.. Let me know please..it takes almost 3 days to take effect..

 
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Old 03-26-2012, 03:35 PM   #12
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Re: Please help, losing my mind with RLS !

I am a man so some of it is out of my area. I had rls for decades that got worse as I got older. (long story short) I was on pain meds for many years for chronic back pain. I decided to go to detox and try to have my back "fixed" (lol). Anyhow after detox the RLS came back with a vengence.
Mental health doctor put me back on meds. At the present I am taking 90 mgs methadone a day for my pain and it completely relieved RLS.

Good luck and God bless

Mike

 
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Old 03-27-2012, 05:45 AM   #13
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Re: Please help, losing my mind with RLS !

I really wish everyone would just try 2 tums aday in the morning.it takes about three days to kick in .BUT it does work..this has really changed my life..some thing so simply and drug free!!!

 
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Old 03-29-2012, 03:14 PM   #14
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Re: Please help, losing my mind with RLS !

My neurologist tried me on Mirapex & Requip. They were horrible. Also recommended is Klonopin which I took years ago for anxiety. My doctor let me try it again and no more RLS..Plus I sleep all night now. Maybe you should try this. Good luck!

 
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Old 05-24-2012, 03:11 PM   #15
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Re: Please help, losing my mind with RLS !

Mirapex is commonly used to treat Restless Leg. However friends and family of patients that take Mirapex need to on the lookout for any signs of compulsive behavior for over 30% of users develop these addictions. Unfortunately those 30+% will hide what they are doing and are not able to realize the financial and emotional problems that is happening around them. By the time family and friends discover the problems it is very often too late to avoid disaster.

I should know as my daughter is in litigation against the major pharmaceuticals because of the financial and emotional devastation to our family caused by the prescription drug Mirapex. The pharmaceuticals are beating up on her pretty viciously.

Iíve written a book titled ďA Letter to JuliaĒ describing her trials with Mirapex and the resulting litigation. Could you suggest any publisher that might be sympathetic to this type of book?

 
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