RLS - Severe and Driving me Mad !!

[Livvycat11]

I suffer with RLS quite severe. I am on medication Pramipexole but even they dont seem to be working well at the moment. I have seen that magnesium oil spray is recommended as a non-medical treatment. Has anyone used this ??

[Hidden]

Hi Livvycat11! I haven't seen you here before, so welcome!

Magnesium spray does wonders for my pains and does well at calming my smaller leg movements.

[Livvycat11 in reply to Hidden]

Hi Sails. I am new here. Need help and advice as RLS makes me miserable when it’s at it’s worse ! Thanks for replying and I’ll definitely try the spray ! Thank you 😊

[Hidden in reply to Livvycat11]

Hello again! You're most welcome!

Just some FYIs about the spray:

-it can dry out the skin

-it can be really itchy when first massaged in, which I've read is due to the magnesium being absorbed

I really hope that it helps you!

I have some more non-medical things if you're interested. Just let me know

[Livvycat11 in reply to Hidden]

Hi there. Thank you very much. I can cope with dry legs if it works Any other tips would be gratefully received.

[Hidden in reply to Livvycat11]

Here is a list of non-medical remedies in my arsenal. Maybe you can find something on here of interest to you?

-support stockings

-magnesium oil

-Epsom salt bath

-Relaxing Leg Cream by Magnilife. This can be gotten on Amazon.

-RLS-specific Rife Frequencies. These are like binaural beats and have the theory that different bodily symptoms respond to different musical frequencies, hence the need for the RLS-specific ones. You can find some 10-minute sessions by typing “Rife Frequencies RLS” into Youtube.

-jet-spray massage (shower head option) pounded right up against every inch of my legs

-a hot shower right before bed

-self-massage of the legs using various methods (hands, massage ball with rubber spikes, and a hand-held heated massager).

-foot bath (although sometimes the vibrations that shoot through the legs are enough to start an attack. Other times not, so it’s quite frustrating to have this inconsistency)

-3 exercises found halfway down this webpage:

healthline.com/health/restl...

-a weighted blanket. I ordered one of these from the States (sensorygoods.com) and it is 10% my body weight (although the recommended weight given on that site is 10% your weight plus 1 pound). It works well at keeping me in bed through my lighter attacks. Unfortunately, more intense ones and my legs move anyway. I find that it helps with anxiety as well.

[Pippins2]

Hi,what dose of Pramipexole are you taking? Did it work at first? Have you had to increase the dose? Are your symptoms worse now than before you started taking it?

[Livvycat11 in reply to Pippins2]

Hi there. I am currently taking 2 x 0.088mg every night. They have been working most of the time. Probably once every couple of weeks I was having a bad night, but lately it is getting more frequent and for the last week it has been every night. Symptoms do seem to be getting worse.

[Hidden in reply to Livvycat11]

Hi, to me it sounds like you could be augmenting on the Pramipexole, thats when that med stops giving relief and starts to make your RLS worse. Have you taken before the Pramipexole any other dopamine med, like Requip (ropinerole) .? Or any other med you have started recently from your doctor or OTC..? Altho what the others have suggested for you can be helpful for RLS, i am trying to see why your Pramipexole is making your symptoms worse. Worse symptoms usually relates to augmentation or taking a med that can make it worse.

[Livvycat11 in reply to Hidden]

I havent tried any other meds. When discussing with my Doctor the last time I went he didnt want to listen to me, cut me off mid sentence and said there was nothing else that I could try ....

[Hidden in reply to Livvycat11]

Is there just one doctor at your surgery or any others you can see.? As the one you are seeing right now obviously doesnt know anything about RLS. If you augmenting from the Pramipexole then nothing else will help with those symptoms til the augmentation is addressed. If you get to see another doctor, dont let them increase your dose of the Pramipexole , increasing the dose will help for a while then your symptoms will become worse again. Explain that you are almost sure you are having augmentation from the prami. HOPEFULLY they will know what you mean.

[Livvycat11 in reply to Hidden]

When I first when the Doctor had to look in his book as to what to prescribe me. Doesn't give you much faith does it ! I shall be booking an appointment for asap and will make a note of all you have said and see what they say. Thank you so much.

[Pippins2 in reply to Livvycat11]

Look in the pinned posts for information about augmentation as this is most likely what is happening. Most doctors don't know about it. Don't let the doctor up the dose of Pramipexole as it may help for a short time but you will end up even worse .Ask if doc will prescribe you strong painkillers to help you withdraw from the Pramipexole and wean down very slowly. Many find Codeine or Tramadol helpful .Let us know how you go on x

[nightdancer in reply to Livvycat11]

You need another doctor. It is NICE when a doctor actually looks something up, BUT, he is wrong, wrong, wrong when he says it is all you can take. There are several classes of meds use for RLS, and I have had RLS for decades, and never could take the dopamine meds like pramipexole or Ropinerole. Treating RLS is all trial and error. What works for one person does not necessarily work for the next person, and that makes treating RLS hard when one does not know what one is doing.

[Livvycat11 in reply to nightdancer]

Thanks nightdancer. I was convinced I was doomed to be in pain for the rest of my life until joining this site and seeing what you are all saying. I just put my trust and faith in my Dr that what he said was right !!

[Oscarsaurus in reply to Livvycat11]

My last gp was exactly the same, i sat sobbing my heart out because of how low (suicidal ) i felt and she told me i had to ride it out ! Please change your gp if you can, my new gp knows i go on this site and probably know alittle more that he does about some things, only thanks to these wonderful people. Try stopping sugar too it really helps me . Good luck

[Livvycat11 in reply to Oscarsaurus]

I dont think people realise just how bad it is and how it gets you down. I hope you feel better now. Its been good to talk to people who are going through the same thing x

[Oscarsaurus in reply to Livvycat11]

The life savers on here are brilliant but you do need to change gps. I have often thought about reporting my last gp but i am just grateful to have found an understanding one who listens to me and would never let me feel as desperate as i was. Take care and do not give up

[Livvycat11 in reply to Oscarsaurus]

I must admit I was thinking of complaining because he's been dismissive a couple of times towards me and I'm not the type of person who is in there all the time complaining about every little thing. But I thought what is the point. The wont take any notice of what I say so may as well just avoid him and request a different Dr in future !

[Egi42 in reply to Livvycat11]

Doctors do not understand what effect rls can have on quality of life. I found one about 6 motnhs ago who prescribed the Gabapentin i take along with ropinrole. Also hot bath at bedtime helps when rls is raging. I have not had any success with topicle oils of any kind.

[Livvycat11 in reply to Egi42]

I dont think anyone can understand unless they suffer themselves. I will make a note of the medication that is working for you to see if it is something that may help me. I'm guessing the oils probably wont work as my RLS is quite severe. But I'll give them a go just in case

[Shumbah]

I have found using a high quality lavender oil on my legs on really bad nights helps of course this is an add on to other treatments.

Although we can’t feel it it vibrates for me it works . If I use it nightly for to long it messes with my hormones and I get hot sweats .

I have had no joy with magnesium, and my magnesium pathology is high .

[Livvycat11 in reply to Shumbah]

Many thanks. I'll be happy to try anything so will definitely add this to the list

[nightdancer in reply to Livvycat11]

Magnesium never did a thing for me, in any form.

[Mopsy1950]

Hi Livycat ,i to have had RLSfor over twenty years it’s B cruel ,I take clonazapam,one half ,1 pramipexal, and they put me on Tramadol as well it works for me I find with one kind of tablet the body gets used to it and you have to take more and more ,with the way they have me taking my tabs I control what I take, sometimes I have half a pramipexal ,and a full one of clonazapam ,always take the full tramadol, might do that for a week then will alter them around and take a full pramipexal and half clonazapam the trick is to trick your legs ,I know it sounds ridiculous but to keep being able to change tabs seems to stop your body getting used to them ,I would go back to your DR and discuss if you can do something like that I have been doing this for some years

[Livvycat11 in reply to Mopsy1950]

Thank you for your advice. I will make a note of the meds you are on and definitely discuss with my Doctor. The last time I went he just shut me down half way through speaking and said there was nothing else that could be done about it. Guess i'll try and see another Doctor this time though !

[Lapsedrunner in reply to Livvycat11]

Hi. Ask your dr for a blood test for iron, and specifically ferritin levels ( there are pinned posts on the home page re iron and also augmentation) We need our ferritin to be 100+ but much lower is considered “normal”

All the best

[HuggCub1]

I'm also interested in this magnesium oil spray. I haven't heard of this. My RLS is about as bad as it comes. Its in my arms also. It runs in my family and have had it as long as I can remember, since childhood. I have nightmare stories of my own! Going to research this. Thanks for mentioning it! And best of luck to you on this troublesome journey! ( Drink about 2 glasses of water before bedtime to help leg cramps).

[Livvycat11 in reply to HuggCub1]

Ive had it since childhood (thanks mom haha) but it has been worst over the last couple of years since I hit my 40s. The thought that I've got this for life and it is probably only going to get worse reduces me to tears sometimes. So definitely going to try anything I can !

[Dcb55 in reply to Livvycat11]

Livvy, you don’t need to live with it. The dopamine agonists are only the first in a long line of possible treatments and with any luck one will work for you.

It does sound like you are augmenting and unfortunately, as has been said, many doctors react by upping the dose which may bring temporary relief but worse symptoms in the long run. It’s hard to get off, so getting off a low dose is easier than a larger one. Ask for a safe taper schedule now.

For me, the next drugs I tried were Gabapentin (no relief), Lyrica (made me lose my balance), clonazepam (supposed to make me drowsy but didn’t) then clonazepam and amytriptiline. Neither of those two works on the legs, just make you sleepy. I was groggy on them till 11 the next day. Finally looked up one of the RLS Foundation quality care centers and drive five miles from my home (in the States.). I am now on low dose opiates and they work 85% of the time (not perfect on planes or long car rides.)

Find yourself a good doctor. Ask questions and be an informed advocate for yourself. If I hadn’t read a lot, I wouldn’t have known what augmentation was either and would likely have been in worse trouble.

Hang in there and try what makes sense to you. I would add that a lot of advice has been given to you in this thread. If you follow it, do one thing at a time and give it time to work. Otherwise you won’t know what’s helping and what’s not. Then you’ll have to keep doing everything!!

Good luck my dear. There is an answer out there. Don’t let it bring you to tears.

[Livvycat11 in reply to Dcb55]

Thank you so much for your email. I am feeling so more positive after all the responses I have received that there is something out there that will help me. It is a lot to take in and a lot to research but I have made some notes so I can get started and be prepared for my doctors. I am in the UK and am unaware of any RLS specialists but again that is something I am going to research.

[LeyaBlu3]

Stretching helps me for a little while. sorry I know it’s torture hope you find something that helps soon.

[Livvycat11 in reply to LeyaBlu3]

I used to stretch and massage my feet/legs for about an hour before bed and that, along with the meds, helped loads. But nothing is working at the moment.

[LeyaBlu3 in reply to Livvycat11]

I saw that potassium citrate could help, but I haven’t had the chance to get it yet. Its said that potassium helps camps and tight muscles, hopefully restless legs too, you can get it in liquid form and dilute with water. Apparently the body needs 3,500–4,700 mg of potassium a day.

Worth I try.

[Joolsg in reply to Livvycat11]

I second everything Elisse and Pippins have said.

I was on a similar drug to pramipexole and it stopped working and the RLS became more severe,

I got off it 2 years ago.

Read all you can about dopamine agonists and Augmentation as doctors do not know about RLS ( clearly your GP doesn’t or he wouldn’t need to look in his book and he wouldn’t tell you there are no other treatments).

I am now on low dose OxyContin and pregabalin and they control my RLS 80-90% of the time.

If your GP is not helping and won’t listen, ask to see another member of the practice.

The people on this website helped me get off dopamine agonists as my GP was appalling- actually told me to drink a glass of milk and that would sort it! I followed the advice on here, read everything I could about RLS and found the meds which allow me to survive .

I hope you find a GP who will listen to you.

[Sara_2611]

HiLivvycatt11 No Ive never heard of it. I use Balneum Cream .Its not for everyone though but it s good for me . Its normally for skin complaints but it works for me .I had a bad attack of it last night -I put some on before I went to bed -then about 5am I was woken up with a terrible bout of it so I put more on & it calmed down -enough for me to sleep again

[Livvycat11 in reply to Sara_2611]

Thanks Sara_2611. I'll have a look at that cream. Anything that even might help is definitely worth trying

[Sara_2611 in reply to Livvycat11]

Hi Livvycat11

Ok Like I said in my previous message I have to re enforce the point that its not for everyone. Just because its good for my skin doesnt mean its good for everyone .Everybody's skin is different & would react differently, so its important that I say you are doing so at your own risk

Should you do decide to try it & you find it as good as I do, maybe consult for GP & talk to him about it & see if you can put it on your prescription

Again -it is entirely up to you what you do -Ive made the observations which will help you decide which track you wish to take.Its very important I make these observations & anyone of our fellow sufferers who have mentioned they may think of trying it I have to mention these to them & they can make their own decisions

[Mopsy1950]

Hi ,,doesn’t sound like you’ve got a very good DR ,that’s something you definitely need is a bit of understanding, I would check to see if there is anyone else on here that is in your area to see if you could find a DR that knows a bit about RLS or at least willing to help understand

[Egi42]

I have suffered with severe rls for the past twelve years and i am now taking gabapentin 600 to 1200 mg daily the dose varies depending on how bad the sytoms are. I also take Ropinrole 3mg about one hr before bedtime. At times i can go to bed and have a great nights sleep before gabepentin i slept very little. Average was 2.5 hrs per night. My expierence with mag oil is not good. I was so desperate I would and did try anything. I also take 2 norco 10-30 daily for back and neck pain. I know the norco also helps with rls. I am now 77 and very active daily. I do heavy capentry landscape maintenance etc to maintain our 131 yr old home. Point is the gabapentin and ropinrole don't have to effective you in a negitive way unless you want or allow it to.

[mrpenguin]

If you're desperate, rub peppermint oil on your legs & feet, it at least gives relief for a while. I suffered with RLS for years but thanks to getting to the root of the problem I've been free for the last few years now. No drugs, just a diet change for me.

We're not all the same & each person is on their own journey and battle against this terrible affliction. 70% of people with RLS also happen to have SIBO & it is this which is responsible for the RLS in most cases. The brain & gut are so connected.

Hope you manage to find some relief from all the advice on here.

[Doggiedogmom1973 in reply to mrpenguin]

Hello mrpenguin, have you ever considered you have endometriosis on or around your sciatica nerve in your pelvis. This causes pain down both legs, or anywhere down your legs. I have had terrible pain with both my legs as I have endometriosis in my pelvic area. My symptoms are: my legs feel like they're on fire, burning. Other times it is just a mild pain. Other times I can not walk. It is crazy. I have to take strong pain killers to stop the pain, or just some panadol if just average pain. Have you had symptoms since your periods began?

[Sara_2611]

Hi Livvycat11

Ive never tried it. I use Balneum Cream. It works well for me. I have to make the important point that anyone who decides to try it are doing so at their own risk Its not for everyone given that everyone's skin is very different & could risk it acting negatively but its good for my skin

[Hidden]

I sympathize with you. I have used Theraworks a magnesium foam for my legs and it does not help. I was on pramipexole for a short while and it made my symptoms worse. I also tried Neurontin and that made me even crazier. I am currently taking tramadol to relieve my symptoms and get me some sleep. I am going to a neurologist in a couple of weeks and the appointment can't come too soon as I've been waiting for 7 weeks to see him. My PCP has been wonderful but I believe she is just as frustrated as I am by not getting needed relief and now suffering with insomnia. Can't wait to see the neurologist as he works with movement disorders, RLS, and Parkinson's . P.S. Taking a powdered for of magnesium for 3 months. No relief that I can say. However it does keep your "bowels" going well without a problem. P.S. I rebounded on ropinerol. My symptoms got worse after 3-4 months of being on it.