My ways of coping, or not, with RLS

[Bee27]

I've had this horrible thing for about 40 years, but it has got far worse in the last 10 years. I take 1.25 of Ropinrole at night, which is a lifesaver!

I would say I have 5 strengths of RLS.

1. Mild. I just get uncomfortable sitting from 3pm onwards and then I will sleep OK.

2. Not good. My legs jump and I can't sit or lie down comfortably, but a hot bath and lying on my tummy, putting my insteps together and pushing down towards my feet helps.

3. Worse. I can't lie down or sit because my body seems to ping all over, my hands are hot, my legs and feet really ache. This is where I am most days! My only solution to this to do the above steps then use an item from Ann Summers or a TENS machine to relax me. I then can sleep.

4. Terrible. I try all of the above and then walk up and down for hours and stamp my feet and just cry.

5. Sometimes, I would like to just walk into the sea and disappear from this nightmare!

[Hidden]

You aren't going to act upon #5, are you?? I'm just making sure. Please get immediate help if you get to that point.

Remain strong,

[Maureen133 in reply to Hidden]

I too feel suicidal sometimes.I take 4 ropinirole over the coarse of the day.I don't suffer at night,but do early morning.

[Bee27 in reply to Maureen133]

Is that 4 mg or 4 x 0.25? Strange, I can lie in bed in the morning lovely and calm and still. It's amazing!, but in the afternoon and night there's no chance!

[nogoodjoints]

Hi Bee. So sorry to hear about your suffering. I too have had RLS for a very long time. It has now progressed to my arms as well. Although I have not been prescribed medication for RLS, I suffer from peripheral neuropathy and take gabapentin. I have only just been prescribed this so I don't think that it is this that has helped me. I take magnesium together with B12 and B6. This has helped but not cured. Reading some of the stories, I think there is some truth in the iron deficiency causing symptoms of RLS as I was also diagnosed by my doctor to have low iron. Some days when it is particularly bad, I massage my legs and arms with arnica gel. This does seem to calm it down and I am able to get some sleep. My RLS started some years ago when I went on a diet and started to consume diet drinks and use sweeteners in hot drinks. I since found that aspartame in products sets off my RLS. I avoid these. Hope you find this helpful.

xx

[Bee27 in reply to nogoodjoints]

Thanks.

I've tried iron, magnesium, etc, etc. Nothing seems to help. I've cut out aspartame as well. I'm just going to have to suffer it. Just spoils everything! X

[Hidden in reply to Bee27]

Yes, it does spoil everything! Have you tried soaking in hot baths or support stockings? I wear support stockings to bed and it helps to calm my leg movements (most of the time). I've also been exploring with different angles at which to put my legs. I have a bed wedge that I normally use for my upper body, but lately I've been using it for my legs. I place it with the high end at the foot of the bed. The wedge is 7.5 inches high. Again, it doesn't help all the time, but it might be worth a try for you.

[Bee27 in reply to Hidden]

Thanks. I can't lie on my back, so I don't think the wedge can help, but I will try the support stockings

[DicCarlson in reply to nogoodjoints]

Normal low iron can be a leading cause of RLS. My Ferritin level was 49, with saturation level of 25%. Supplements (iron bis-glycinate chelate (Ferrochel) erased the severe RLS symptoms in a week!

[Bee27 in reply to DicCarlson]

Thanks, but my iron levels are good.

[Hidden in reply to nogoodjoints]

ooh, that's interesting about the aspartame!

Hey, speaking about b12 and b6: isn't one needed to help absorb the other? I thought I read that somewhere.

[macewan13]

That's very interesting that you say you have hot hands. I do too, just after an evening meal and at about the time the RLS starts - usually between 8 and 9 pm. I hadn't made the connection.

[Bee27 in reply to macewan13]

I don't know if there is a connection, but my hands and feet are normally quite cold, then I go to bed and my hands feel as if they are stiff and burning!

[Pluto46 in reply to macewan13]

I thought I was the only person in the world with hot feet. I sleep with a fan (one of those tower things which turn 90 degrees) at the foot of my bed - have done for donkey's years, and the window open even when it's freezing outside. If I have to sleep somewhere without a fan blowing at my feet, I feel I'm mildly suffocating.

[Cajunfilly in reply to macewan13]

Same here. I already try to avoid aspartame, but will make a stronger effort.

[peterfromlondon in reply to macewan13]

me too

[Bee27]

I used to have hot feet and had to get up in the night and soak them in cold water. That seems to have gone away and now it's my hands. I don't know which is worse!

[LotteM]

Hi Bee,

Your "most days 3" already sounds awful. Please hang in there.

A thought for you and nogoodjoinst:

What about augemenation???

Others are far more knowledgeable about that than I am, so have a look around.

A (temporal) switch of medicine may help.

Just also want to add something I have read from several people on the Dutch RLS forum:

That a period of several weeks (a doctor said 3 months) off a dopamine-agonist may resensitise your body to this group of medicines. I.e. your body will react to it as if the medicine is "new" and react to it as it did when you had it prescribed originally

I have not read a description of this phenemenon elsewhere on this forum. But I haven't read all entries......

Note: thus not switch from ropinirole to pramipexole or rotigotine (make sure what the actual medicine is, not the selling name, check out the rlsuk site - a good one by the way!).

[Bee27 in reply to LotteM]

Thanks. I'm really scared to come off Ropinrole as it is my life saver, but I will go and see my very unhelpful Indian doctor and see what he says. x

[LotteM in reply to Bee27]

Look below/around to several other posts from joolsg and jessexxxx (4 four digits) and others. Etc. Get to your soctor well-prepared! Print and bring the most relevant info and insist.

I have been on ropinirol for 3/4year and 0,75mg only. And not so much the rls but the sleeplessness (from 2AM or 4AM) is what is getting to me.

Last night I took gabapentin 100mg in addition to my already reduced dose of 0,5mg ropinirole. I slept with the normal amount but very brief brakes until 9AM. Have to see if it lasts, but at least today I will feel better. Being less tired also means fewer/ weaker rls symptoms.

Homework to do! Good luck with that. And don't hesitate to ask. So much support available here for you.

[Hidden in reply to LotteM]

You are right in one way about resetting the dopamine med, after a time off it. BUT, if you are augmenting on a dopamine med then the advise is to not go back on another one for probably 6 months or more. There is a good chance of after the few initial weeks or months, of taking another dopamine med then augmentation will return.

[Hidden in reply to LotteM]

Hi LotteM,

Your "note" where you talk about getting the actual medication instead of the selling name caugt my attention. The pharmacy here in Norway has Pramipexole under two different names - Pramipexole and Orion. I found that the Pramipexole worked better for me. The pharmacist was honest and told me that, whle Orion is the same drug, it uses different ingredients. Pretty interesting, huh?

[LotteM]

Hi Elisse,

Thanks for the addition. I've been merely relaying what others in NL have written. No experience myself. Maybe it is just the same as with everything else with rls - things are different from one person to another. One person here in NL had a successful resensitation after 2 weeks off only! Horribble weeks, though, as I recall from her post. I understand now from another post here that the withdrawal problems come from the body having to adjust its own production levels again to the reduced input from outside. Takes a while, apparently....

On that note, I have always thought that adding dopamine to an out-of-balance system that already has higher-than-average levels of dopamine (some paper from the Johns Hopkins group) was a weird way to "heal".

[Gidgetmoondogg]

I like your explanation. Been there.

[Juliewils1965]

Hiya I feel exactly the same as you do wish I was miles away without my legs and pain 😂 Got laugh because I'm sick of crying 😭 had the worst weekend ever been up all nite with pain in legs calves hips and feet I've tried lying on belly it's to I comftable for me I'm on ropinrole to alzain and 1amitrpyline at nigh first few night great slept thru maybe coz I was so exhausted after that nope back to normal awake 3/4 times a nite then up about 6.30 because of legs so it's a long day and dread to think I've got it all to come again at nite so I'm with you all the way we're can we run away to x

[Joolsg in reply to Juliewils1965]

Amitriptyline is really bad for vast majority of RLS sufferers. Do you use it for nerve pain or as anti depressant? Pregabalin is better for nerve pain if you have RLS and there are other anti depressants that don't make RLS worse. Have a look at the list of meds on the website

rlshelp.org/

I think trazodone is one which doesn't make RLS worse.

[Juliewils1965 in reply to Joolsg]

Hiya I've been on amitriptline years ago when I lost my son then put on sertreline until last week as doc sed it would help with ibs to plus I take outher meds to for epilepsy and aspirin etc when I had heart attack 6yrs ago so I'm sure since then that's wen all my symptoms started x

[Joolsg in reply to Juliewils1965]

Oh Julie,

You've really been in the wars. My heart goes out to you.

As you are on so many meds definitely look through that website I sent you the link for as you may find that a lot of the meds you are on are making your RLS worse.

Take care

Jools

[Juliewils1965 in reply to Joolsg]

Ah thanks I am a bit of a disaster at moment 😂 Got laugh I've been stuck in house since sat trying to rest which is very hard to do as I'm so used to running around doing what I want to do so it's a bit of a shock to system at moment back at docs fri see what happens x

[Bee27 in reply to Juliewils1965]

Poor you.x

[Juliewils1965 in reply to Bee27]

Ano disaster at moment at doctors fri see what happens thanks x

[Hidden]

Ok...wow. Don't panic. You'll be ok. I just got over a disaster myself. Was prescribed 600mg Ibux and told to take 1000mg Paracet at same time. Was told to take every 8 hours. First dose saved my life!! If you want to hear about my journey over the last 48 hours I can send you a message. Please let me know!! Don't give up! I almost did, but am glad I didn't!

[LotteM in reply to Hidden]

Good to hear that the ibu and parac helped!!!! 😃👍🏻

[Hidden in reply to LotteM]

Yes, me too! I am not kidding when I say it saved my life!!

[Ikeeptrying in reply to Hidden]

Gosh Jess, Isn't that just tylenol and ibuprofen? I never would have thought they were that helpful.

[Solord]

I am hesitant to say this because some sneer at it. But the amazing relief it gave me is worth it. This only works after you have gone to sleep if only for a minute. It goes this way:

I am very tired and go to sleep quite quickly, but the jerk of rls wakes me up, no relief in sight, I go into bathroom and get a small glass of water (4 Oz aprx) add a few ozs of vinegar and then 1/4 tsp. Of baking soda, as it fizzles drink it fast, go to bed. No more restless legs that night.

I have done this for years...IT WORKS! IF you doubt it, try it anyway, if it works you will be glad you did. I cannot say why you have to go to sleep first, I can only say I tried just doing it before bed and it does not work...for me.

I am a woman in my 70s I am not playing games.

Restless legs is a nightmare, trust me I know.

[Bee27 in reply to Solord]

Thanks, I will try anything.

[Hidden in reply to Solord]

That's awesome that it works for you!

Will give it a try! Thanks!

BTW, isn't there a saying somewhere about the only stupid suggestions are the ones not suggested at all? If not, there should be.

Thanks again,

[LotteM]

Very puzzling undeed about having to (almost?) fall asleep first. I had that earlier, so tired - quickly falling asleep - but before really falling asleep being woken up by the rls.

Tramadol is now controlling my rls and I sleep almost normally. But the nights it doesn't - when I have overstepped my boundaries during the day - I will definitely give it a try.

Wouldn't hurt, I have seen weirder things, and if it works far better than walking around for 1+ hours.

In sum: thanks solord! If it only helps one other person your post will be successful.