MY MOTHER SUFFERS FROM RESTLESS LEGS CAN ANYONE HELP?

Posted , 7 users are following.

I have joined this group on behalf of my mother who has suffered with severe restless legs

syndrome for over 8 years, she takes co-beneldopa and has tried so many other medicines but

nothing helps. The co-beneldopa helps for a couple of hours but then she is up again 3-4 times

in the night, pacing around for hours on end. My mother is 71 and wishes she was dead and I

feel terrible for her, what an awful condition to have. I have experienced tired legs and know how awful it feels so restless legs all night long is unthinkable. Could anyone offer any advice. We

have tried so many of the standard medicines that you have all mentioned but nothing has

helped if anything they made her feel worse so we had to stop them. We have tried Amitriptyline, Co-Codamol, Gabapentin, Prepalin, Clonazepam, Diazepam, Morphine, Ropinarhol, Phenergan,Rotigotine patches, additional Co-Beneldopa during the day, Tramadol you name it we tried it,

mum says all of these medicines make her restless legs worse has anyone experienced this

with different drugs ? Any advice would be greatly appreciated ?

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12 Replies

  • Posted

    I have noticed that Requip works for me but I have had similar issues. Mirapex just made the symptoms worse and that Horizant did nothing at all. I really don't have any advice besides going to see a neurologist. I am going to see one soon to see if there is anything else I can do. I don't know if you have it but a whirlpool tub helps my legs.
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  • Posted

    Hi,

    I read your post while searching for RLS forums. When you said your mother wished she was dead it brought me to tears. I know how AGONIZING it can be at times. I'm 52 years old and have had RLS since I was in high school. I've tried all kinds of supplements over the years. Some worked for a while but usually the RLS came back.

    A couple of years ago I started taking Requip but stopped because it made me feel like I was having a heart attack. I almost went to the ER. The Requip was causing a condition called GERT. It affects the esophagus in some people and the pain going through from the chest to the back feels like a heart attack. I was only taking half of the starter dose so I decided it wasn't worth it. I also didn't like feeling drugged the next day.

    What I'm doing now seems to work better than anything else I've tried. I don't like taking medicine. My wife usually has to prod me to take cold medicine. Before bed I take a Benadryl capsule, 1mg tablet of Melatonin and a tablet of Alieve (Naproxen). Sometimes I replace the Alieve with 1/2 an aspirin. I don't like taking the Alieve every day for an extended length of time.

    I also try to avoid the common sense things like not eating late, avoiding sugar, coffee, or cokes at night.

    Another thing that has worked well but is hard to keep doing is eating spinach around 7:00 and not eating anthing else before going to bed. The only thing I drink is water after that. I'm guessing maybe the folic acid or iron may be helping with the RLS. I used to do this without taking anything else. It just got old after awhile.

    Another thing that works sometimes is Natural Calm Magnesium powder from Vitacost. The sugar free Raspberry Lemon tastes pretty good in hot water. It really helps you go to sleep. It's worked at times without doing anything else but did not work as well as the Benadryl, Melatonin, Alieve combination I'm taking now.

    What I've used during the day may seem a little strange but it almost always helps. I know caffeine is to be avoided with RLS but I keep some of the cheap Walmart brand with me at all times. I cut the tablet in 4 pieces so I'm taking about 1/2 a cup of coffee worth of caffeine. I also drink a lot of water with it. The only thing I can figure is that it improves my circulation. I have poor circulation and always have cold hands and feet in the winter.

    I've never posted on an RLS forum before but when you said your mother wanted to die it broke my heart. I know how miserable it can be at times. I won't be offended if you don't want to try any of these things.

    I hope your mother finds some relief.

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  • Posted

    Hi,

    Having suffered for many years I was at the end of my tether trying to manage a full time job and 2 kids and getting no sleep due to this horrible condition. I tried Dosulopin and Repinorole (apologies for the spelling!) to no avail - in fact, like your Mum it seemed to make things worse but I am now virtually cured thanks to a very inexpensive supplement! I started to do some research into RLS and found some information online regarding the link between low levels of Magnesium and RLS. Its also commonly known that low potassium levels can cause RLS, which generally doctors test for. However, I dont think they test for magnesium. About 2 months ago I started taking a regular high dose supplement of potassium, magnesium and zinc (I bought mine from holland and barrett). Within a week my symptoms had improved and now most nights I am symptom free and sleeping well. I also dont drink coffee or have any alcohol (well, most of the time!) Get your Mum to try a multi mineral supplement - it certainly cant help and its really helped me. Goos luck and let me know how you get on xxx

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  • Posted

    I looked on Holland and Barrett's website but did not find a potassium, magnesium and zinc supplement. Can you tell me what the amounts of each mineral are? Are they capsules or tablets. I'd really like to find something besides drugs.

    Thanks!

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  • Posted

    Hi,

    I kept the jar, so I have the info - its called 'Super Multi Mineral' and it contains 100% RDA of magnesium, 750% RDA manganese, plus a load of other minerals. It only has 5% RDA of potassium, so I take an extra potassium supplement with it. You take 1 tablet 3 times per day, so you always have a supply going into your system. It works for me - I still get the odd bad night, but generally things are much better without any side effects. If you try it please let me know how you get on :-)

    Tracy

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  • Posted

    I forgot to say - it does take a couple of days to see any effect, but for me it was within a week, I'm guessing its because it needs time to build up in your system, but I have no medical training so its just a guess. It certainly can't hurt, thats for sure!
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  • Posted

    Hello D.R,

    Thank you for your response. My mother is currently under the care of a Neurologist but nothing had worked so far. We also see a Parkinsons nurse as sadly my mother was diagnosed with Parkinsons about a year ago. The combination of both of these debilitating illnesses is not ideal but what can we do. Thank you for your advice, much appreciated.

    Kind Regards

    dansae

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  • Posted

    Hi Robagu,

    Thank you for your kind words, they are greatly appreciated. My mother has tried all of the medicines you mentioned with no luck. I read about the Magnesium quite a while back and got mum to try tablets but no change I can only say that her legs are severely affected we are currently seeing an osteopath I hope it helps alleviate some pain, fingers crossed. What does the spinach do and how should it be consumed, raw or cooked and in what quantity?

    Look forward to hearing from you soon.

    Kind Regards

    dansae

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  • Posted

    Not sure why the spinach helps except that it has folic acid, iron, and a lot of other vitamins and minerals. For some people a deficiency in folic acid or iron can cause RLS. I was heating some frozen spinach with a little water and salt. I've also used the cooked spinach in a can. It seemed to work best if I had it before 7PM and did not eat anything after that. I also tried to avoid fried or spicy foods at night. Nothing sugary either. Chocolate seems to aggravate it as well.

    I really think RLS has a lot to do with how healthy we eat. It's really hard to eat healthy all the time especially when you have a family. I've had the least trouble with RLS when my wife and I were not eating sugar and ate lot more vegetables. During those times I also avoided coffee, cokes, fried or greasy foods and spicy foods as well.

    Here's the nutrient listing for 1 cup of cooked spinach:

    Vitamin A 377%

    Vitamin C 29%

    Vitamin E 19%

    Vitamin K 1111%

    Thiamin 11%

    Riboflavin 25%

    Vitamin B6 22%

    Folate (Folic acid) 66%

    Calcium 24%

    Iron 36%

    Magnesium 39%

    Phosphorus 10%

    Potassium 24%

    Zinc 9%

    Copper 16%

    Manganese 84%

    Selenium 4%

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  • Posted

    Hi Rogabu,

    I will get mum to try the spinach. She eats very healthily only has 3 meals a day and no junk food definitely no sugary foods and nothing fried she has a tiny portion of fruit a day and that's about it. We did try iron therapy with no joy I did recently read about the folic acid so will give that a go no harm trying. Will let you know how we get on. 😊

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  • Posted

    Hi ermintrude38,

    I will try out the vitamins/minerals you mentioned, I have in the past purchased magnesium for mum but nothing worked. I will buy what you mentioned but will try spinach first as mentioned by rogabu. I did buy coconut water as I know that is high in Potassium again not much use but then mum did not use it for very long. What dosage of Potassium do you take?

    Kind Regards

    dansae

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  • Posted

    I have h ad this restless leg thing for ages now , i am only 44 yrs old,. it drives me insane at night, kicks in at 8is in the evening then i am up like every hour etc, horrible th ing to have. I dont t hink i would survive if i was working . However, yesterday i had enough of this and looked a few things up on internet. I then went to the health shop and found a tablet and last night was my first night on it and i have slept better than ever, could n ot believe it, imagine tonight and next week, this is on one days worth so i amhopeful. IT is magnesium, calcium plus, and its got boron in and radiance is the brand. They say its for nerve and muscle relaxant etc, it has d3 in it and a few other things , apparantly the magnesium must have the calcium or it may as well not be taken. They work together, this could be why magnesium pills i had before did nothing,. Dont go to docs and pump yourselves full of prescription stuff, go to the health shop,
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