Help me I have an extreme case of RLS - Restless Legs Syn...

Restless Legs Syndrome

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Help me I have an extreme case of RLS

HaydenD2000 profile image
21 Replies

I have had severe RLS since as far back as I can remember, I may have even been born with it. All I know is it's horrible, i have a hell of a time sleeping, it only gets worse the more I think of it, it's all over my body, legs, arms, shoulders, stomach, chest, neck, everywhere. It distracts me from sports, it's hard to keep straight when driving, it certainly does not help when shooting. I am seeking any advice or recommendations for meds to help stop this, I have never known a life without it. It's driving me crazy and people think i'm nuts for how I move my hands and limbs and tense them so erratically.

21 Replies

Hi, if you have had it as far back as you can remember then its sounds like you have Primary RLS, inherited from a parent, genetic. Have you been to see your doctor yet about all your symptoms. ? That is the advice i am giving you if you havent yet seen your doctor. If you have, then what did your doctor say and did he/she prescribe any meds for you. If you havent seen your doctor about this, then i cant really tell you what meds might help you, it wouldnt be right for me to do that.

HaydenD2000 profile image
HaydenD2000 in reply to

I told a doctor and he brushed it off as something I don't remember what he called it. I have never had a medication nor a diagnosis but I know this is what's wrong with me. I am in the USA, I have never met another person with it so no one in my family I know of has it. I have seen some thing about magnesium so I'll try that and thanks for the replies!

in reply to HaydenD2000

Hayden, just because neither of your parents showed any symptoms, doesnt mean one of them didnt have the gene and passed it down to you it can happen that way. Just passing that bit of info on to you. As you can see, there are plenty of options other than meds you can try, i hope you find something that works for you. I have Primary RLS inherited from my father, and i have never found anything to work for me other than meds unfortunately. Good luck.

Fredanderson profile image
Fredanderson in reply to HaydenD2000

No,that by itself won't work, you need Tramadol 50mg 2pills 3 times a day.

Bganim1947 profile image
Bganim1947 in reply to Fredanderson

This is the fifth day in a row that I have had (I almost hate to write this and dare the universe) absolutely no RLS at all, none, not the slightest little vibration, thanks to you Fredanderson and your suggestion of Tramadol 50 mgs 3 times a day!

I have been taking 100 mgs of Lyrica 3 X/day along with Tramadol 100 mgs twice a day and that was pretty good, but I always had an afternoon episode when I would try to nap, and around 9 PM while watching TV. Once I added, with my doctor's permission, that third dose, it all stopped--so far. So let your doctors know that the proof is in the pudding as to the effectiveness of Tramadol. Yes, it is an opioid, but a different class. I went the Ropinerole and Gabapenten route for years and the argumentation from both nearly drove me to the end of my rope--sorry for all the cliches, including this one--

Tramadol has been a Godsend.

nightdancer profile image
nightdancer

So, you are not taking anything? Are you in the US or the UK, or elsewhere. You are going to get a TON of suggestions, so you really need to do your research, and talk to your doctor also. rlshelp.org is a good place to start on the treatment page. If in the UK, go the RLS-UK Foundation web site.

nightdancer profile image
nightdancer

I agree with Elisse, it would be very improper for us to suggest meds, since we do not know you or your history at all in general.

Graham3196 profile image
Graham3196

I will send a private message with a list of things that people in this forum have found to be helpful. Everything in the list has worked for some-one. You will find so many "cures" and so many different drugs that someone will recommend.

The one almost universal truth in this forum is that you will be very lucky to find a doctor who is really helpful. I think you need to ask any GP or other professional if they have experience with RLS and then check their advice against some of the available organisations.

I am sorry for you but you have at least started on a path that should give you reasonable hope.

Good Luck

Graham

Ikeeptrying profile image
Ikeeptrying in reply to Graham3196

Graham. can you send me a private message with this information too. I can give you my email or do a private message on facebook. Let me know the most convenient. Thank you.

Graham3196 profile image
Graham3196 in reply to Ikeeptrying

I will PM you

Svengolly profile image
Svengolly in reply to Graham3196

Hi graham.. Can u send this to me too ? .. thx !

RLSNOMORE profile image
RLSNOMORE

I was a decade long+ restless leg sufferer. I did months and months of research on natural remedies since most of the posts that I saw suggested that meds don't work for this condition. Here are my suggestions. There is a school of thought that restless legs are exacerbated by magnesium deficiency. Yet, I couldn't tolerate taking magnesium supplements. So I purchased magnesium oil and magnesium lotion - both available on Amazon. I use them EVERY time I get out of the shower and EVERY time before I go to bed. The oil is a little greasy and can sting the first few times you use it (you can wash it off with a cold cloth after about 15 minutes) but the lotion doesn't sting. There are many varieties of magnesium oil and magnesium lotion - try the different ones until you find one that works for you (I use LifeFlo, under $10). If you can tolerate magnesium supplements, try the ones called "Doctor's Best" and take about an hour before you go to bed each night. Finally, epsom salt baths (at least two cups of epsom salt) delivers magnesium to your body and an epsom bath 3-4 times a week, an hour before bed, will assist with your issue.

My last piece of advice is this. Cut down on your carbonated beverage intake substantially. Limit beer, seltzer, soda, diet soda. It ISN'T the sugar in these beverages that cause cavities or restless legs, it is the PHOSPHOROUS that generates the carbonation. PHOSPHOROUS causes the body to leech magnesium and calcium - which can exacerbate restless legs.

When I made these changes, my restless legs disappeared within 24 hours. When I fall off the wagon and drink a bunch of soda or beer at a party or gathering - or if I forget to do the magnesium oil/lotion - the restless legs come back EVERY time.

HOPE THIS HELPS!

HaydenD2000 profile image
HaydenD2000 in reply to RLSNOMORE

Thank you so much I have never had a minute without it within memory I am so exited to try this! THANK YOU!!!

RLSNOMORE profile image
RLSNOMORE in reply to HaydenD2000

Let us know what works for you!

Crazyleggs profile image
Crazyleggs

Hi Hayden as to your question about Pramipexole my advice is to get off it. I was on 3 doses a day and doctor wanted to increase to 4. I told him that Pramipexole made my symptoms worse. He basically ignored me so I took things into my own hands. It's really hard to get off Pramipexole So don't kick yourself if it takes awhile. Set a goal by breaking a dose in half and eliminating it dose by dose. Here's what helped me - I cut out caffeine, dairy, wheat, booze. (Didn't drink anyway). Careful of fast foods and preservatives. Then I started taking magnesium, calcium, super B Complex, turmeric ( don't overdo turmeric it's a blood thinner and don't take with aspirin). I was taking hydrocodone from pain management doctor due to failed back surgery He was not treating me for RLS so I discussed switching to his care for RLS too. Lucky he is a young, caring neurologist and approved my change of diet and choice of minerals. I had been almost free of RLS for 3 months when I consulted with the new doctor. Now herein lies the problem I was still talking a single dose of Pramipexole and just could not shake that last dose. So the new doctor set up a plan to get off the last dose and for the past 3 weeks I've had good and bad days on his plan. But I don't think I could completely shake the use of Pramipexole by myself. I am 80 years old and have severe RLS so every moment I don't have it I thank the Lord

Hope this helps. I'm sending u hope for a good nights sleep and a big hug

Crazyleggs

HaydenD2000 profile image
HaydenD2000 in reply to Crazyleggs

Thank you!

Bossy50 profile image
Bossy50

Go to your GP as I'm assuming from your post that you haven't yet. Contrary to sme psts on here, I have found GP's to be really helpful. If not, there is something on this site you can print out and give to your GP, it lists meds that can help. I've tried a number of them. The problem with this condition is that there isn't one specific med from the list that is suitable for everyone. It's trial and error to find one that suits you and even then after a time it may lose it's effectiveness and you'll need to move on and try another. It's sounds like you have a severe case, in terms of the number of limbs and parts of your body it effects. Your GP will also carry out blood tests to ascertain if you're deficient in iron etc as this can cause RLS..Good luck...

HaydenD2000 profile image
HaydenD2000

Thanks every SO MUCH I can't remember a single second I didn't feel it so I am wicked excited to try these remedies, I didn't even know there was another person in the world the way I am THANK YOU ALL GOD BLESS!

Pampinky profile image
Pampinky

I am now using the 3mg neupro patch. Change it once a day..when my rls really acts up because i put the patch on too late i take 300 mg. Of gapepentin. Trick with patch is to not put it on at bedtime..i put mine on around 6pm to keep my legs from starting up at nite.

Fredanderson profile image
Fredanderson

I'm so happy that I was able to help. I have had this problem for 15 years. I know what works but can't get any Tramadol, not even a few.

Svengolly profile image
Svengolly

Have u had your iron and Ferritin levels checked ? .. a majority of rls sufferers r cured by raising iron levels .. if low or even mid normal. Too high is unsafe ..so test 1st.

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