unbearable

[upbeat56]

Hi Im new to this site but wide awake all night every night with this uncontrollable RLS. Ive been put on napro 2mg patches but after initial relief the symptoms have escalated. Does anyone have any suggestions . I am a full time carer and finding life hard at the moment

[Hidden]

I’m so sorry to hear this!

What have you tried so far?

Can you find something on here to try? This is my list. My general experience («general» as in «works some of the time») is in parentheses.

-knee high compression stockings (the tightness these provide help calm my movements)

-hand-held heated massager (works well in calming my legs)

-I have a jet spray option on my shower head that I put right up to every inch of my legs (works well and feels really good)

-rubber massage ball with rubber spikes (does great at soothing knots)

-Lidocaine Plus pain relieving liquid. This is a roll-on designed to desensitize the nerves ( works quite well)

-«Relaxing Leg Cream» by Magnilife. This can be bought at Walgreens (if in States) or on Amazon. (Gives a soothing feeling when massaged in. I have to generously apply this if I am to feel my legs calm down)

-Magnesium Oil. (This does wonders for pain and has the added benefit of calming the legs)

-Soaking in warm water ( I swear I can feel the blood start to flow again!)

-3 exercises in particular found halfway down this site:

healthline.com/health/restl...

(I love these!)

-type «Rife Frequencies RLS» into Youtube, put your earphones on, and enjoy (or try). These are like binaural beats, so they aren’t the prettiest sounds, but I swear I have some success with my legs calming down! There is a science behind Rife Frequencies that says that different bodily afflictions respond to different music frequencies. This is why you need to find the RLS-specific ones.

[upbeat56 in reply to Hidden]

wow thank you so much for all that info I havent tried any of them.... will let you know how i get on... thank you so much again

[Hidden in reply to upbeat56]

You’re very welcome!😀 We need to help each other all we can in order to have a good quality of life despite having RLS.

Yes, please do let me know how you get on. Please don’t despair, though, if one things works one night and not the next. That happens to me quite a bit; it’s really frustrating!

[marsha2306 in reply to upbeat56]

Good response from Jess3468. I just want to add that i also use Restful Legs by Hyland and it helps most of the time. Buy on Amazon

[markren in reply to Hidden]

Yes thankyou too.I haven't tried some of these either. Happy shopping today😆

[involuntarydancer]

Probably the most important thing is to get your serum ferritin tested. Raising iron levels is helpful in a majority of cases. It is important to aim to get your serum ferritin to over 100 so when you get a test get the actual figure - not just that you are ‘normal’. Normal is different for people with rls.

I would urge against increasing your neupro dose as this could lead to worse problems down the line.

In addition to Jess’s excellent suggestions, I find a very diverting activity such as a computer game for about 20 minutes can give a couple of hours relief. I also find magnesium spray to my legs can be helpful as can using very cold water on my legs and even my back and waist.

There are other prescription medications you can try such as gabapentin/pregabalin and also tramadol (for temporary over the counter relief you could try solpadeine or any med with a codeine content). Rls often responds better to a mix of meds at a low dose than a single med in ever increasing quantities.

Dietary awareness can help - reducing sugar and dairy seems to be helpful for some and then there are many variations on that theme.

Moderate exercise during the day and weight lifting can also help.

I find that making sure I am well hydrated all day and also emptying the bladder when symptoms strike can help.

[upbeat56 in reply to involuntarydancer]

thankyou involuntary dancer ... i now feel I have lots to try i really appreciate your reply.i had my ferratin levels checked and it was 44 my Gp said no need to go on iron even though mu neurologists had suggested this if symptoms continued. Can i just take over the counter iron tablets to boost it ??

[involuntarydancer in reply to upbeat56]

44 is relatively low. Rls experts in the US recommend getting serum ferritin levels to over 100. Many medical practitioners are unaware of the rls/iron connection unfortunately. In your shoes I would definitely start an iron supplement (unless there are counter-indications I don’t know about). Many on here recommend iron bisglycinate (aka gentle iron). It can be got in Holland and Barrett and in some chemists. It doesn’t need to be taken with vitamin C as other iron preparations do. Optimally it should be taken on an empty stomach and without eating for a further hour after taking it. Some people found their levels increased more rapidly when they take the iron every second day.

Hopefully you will find that raising your iron results in an improvement in symptoms. Many do! Good luck.

[Pam34]

Hi

You say symptoms have got worse recently and you’re on the Neupro patch. Might be worth reading up on augmentation and as involuntarydancer says, don’t be tempted to increase the dose.

rls-uk.org/augmentation-reb...

Pam

[upbeat56 in reply to Pam34]

when I was up last night I was ready on this site about augmentation....why do neurologists not tell you this information.. I just got put on the patch.. to be honest was grateful at the time for any help.... but would prefer to try nonmedication options first!!

[Pam34 in reply to upbeat56]

Many neurologists don’t know about it unless they are an RLS specialist and they are few and far between unfortunately! It’s unlikely to be augmentation if you’ve just gone on the patch though.

Your ferritin levels at 44 are too low for an RLS sufferer. Read the link below and show your doctor. You can buy iron supplements over the counter - iron bisglycinate is a popular one but I can’t really advise you to take it - I’m not a doctor!

hopkinsmedicine.org/neurolo...

Other non medical treatments are listed below and Jess and involuntary dancer have suggested some.

rls-uk.org/self-management/

If you decide to stop the Neupro patch it could be difficult depending on how long you have been on it, but if your RLS is severe you might find it difficult to manage without medication. Other treatments are listed below.

rls-uk.org/treatment/

Lots to think about. Read up as much as you can so you are knowledgeable when you next see your doctor.

Pam

[involuntarydancer in reply to Pam34]

Super informative reply, Pam. It’s a pity some of the medical professionals don’t know even half of what you do.

[Pam34 in reply to involuntarydancer]

Aw thank you, that’s a lovely thing to say! I only know what I have learnt from people like you on this site and from reading as much as I can and from working out what I think is best for me. Getting the medical profession on side needs careful management I find so it’s as well to be as prepared as possible!

[involuntarydancer in reply to Pam34]

Spot on, Pam. How much easier would it be if the medical professionals were open to the sort of information available on here.

[Mum007]

I find ice cream (even the dairy free sort) sends my legs mad. I’ve just been on holiday and they were awful. Only thing different was drinking alcohol and carbonated drinks which I barely touch at home. (I love sangria and cocktails). So also be aware of your diet.

[larryggarner2001]

Hi I'm a 70 year old male I've had restless leg syndrome for about a year-and-a-half my wife had it for many years she was in the original Trials of requip all of a sudden two years ago it disappeared and never came back on her and my daughter both we've been trying ever since to figure out what happened but mine still here I'm on 2mg neupro I find the best way for me is leave the old patch on. about an hour before I go to bed put the new one on I take a shower before I go to bed every night I don't know if that affects them or not it says in the directions it doesn't then about four to six in the morning I take the old one off I've been doing it for a few months now it seems to be working