No restless legs: Four weeks without... - Restless Legs Syn...

Restless Legs Syndrome

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No restless legs

Bee27 profile image
18 Replies

Four weeks without restless leg! How amazing! I broke my femur and have been on morphine, but now my patch has run out and it’s back with avengeance! There must be a strong painkiller that’s not addictive?

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Bee27 profile image
Bee27
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18 Replies
restlessstoz profile image
restlessstoz

Hi B27,

About 8 years ago I was on Fentanyl patches for about 18 months and had great reduction in RLS in fact I had NO problem with them- but the problem was that every 6 months or so I had to increase the dose. I asked my GP what will happen when I'm on the strongest and he said I would have to find another 'help'.

I decided to go off the patches then and gradually reduced the dose as my body was very dependant on the drug. I really don't know why the physician prescribed it for me in the beginning and was very happy when it worked so well but it's simply not sustainable.

Now I'm on other drugs as well as doing all the things you are: No refined sugars, no gluten, no dairy (trialing this as I suspect it has a bearing on my RL.) no salt, no alcohol, no caffeine. They are heaps better than before- I've been known to spend the whole night standing up when they are bad. How tidy my bedroom is relates directly to how bad my legs are! I often stand up a lot of evenings but now it's only for 45 minutes or so not the whole time. I'm standing up now.

I wish I could crack this as it affects my whole life and everyday living. I've now the added problem of having arthritis in my feet, ankles and knees and the pain from them triggers my legs. Hence I'm on a high dose of painkillers to lower the pain so it doesn't trigger my legs. Now it's Tramadol and I'm on a large dose but even in spite of this, I still am affected by legs.

Sorry no direct answer to your problem but thought my experience with Fentanyl would be worth writing to you about.

Bee27 profile image
Bee27 in reply torestlessstoz

Thanks! It’s a hopeless situation. Who knows if we’ll ever find a cure?

restlessstoz profile image
restlessstoz in reply toBee27

A cure would be nice but how about an understanding of what RLs is! That would be a start.

I've used Deep Heat a lot and that seems to confuse the RLs and gives me a break from them for a while. If my ankle is really painful I rub it on and in about 10 minutes the RLs are so confused by the cold/hot of the Deep Heat that they go, either for good or at least for an hour or so. It smells strong but you can get a smell free one. I love the smell but it does linger!

I hope you find a solution Bee27 and can get some relief.

Bee27 profile image
Bee27 in reply torestlessstoz

The problem with Deep Heat is that it stinks the whole house out and I can’t stand that either. I haven’t seen a smell free one. I find the only way is to get up and do something, but I’m so tired by that stage.

restlessstoz profile image
restlessstoz in reply toBee27

There is one with no smell! if you check the chemists. Certainly I've seen it here.

Bee27 profile image
Bee27 in reply torestlessstoz

Thanks. I will investigate!

Allyp69 profile image
Allyp69

If only there were a tablet we could take but I haven't found any medication that doesn't have side effects. Taking folic acid daily for a week and will see if that helps...so sorry for you. Listening to music using headphones helps me....

Bee27 profile image
Bee27 in reply toAllyp69

I stand at night playing Candy Crush! That helps me take my mind off it!

Twitcher profile image
Twitcher

I've been having success with Magnesium and VB6 supplement (Migraine Stop) but only about 90% - I still get a much milder but still restless twitchy in bed - I take over the counter Ibuprofen & Codeine called Nurafen+ in UK - working for me but not addicted only take it when I need and can go days weeks without. I've also given up sugar and supplementing with Xylitol/Erithrytol in my cooking. Don't eat processed food either.

Bee27 profile image
Bee27 in reply toTwitcher

Thanks. There doesn’t seem to be any answer. I know that certain types of fish, garlic and mushrooms make it worse!

rls_optimist profile image
rls_optimist

Hi, Bee,

Are you taking any other meds for RLS? If so, which ones and what dosage? Among the opioids, the one most favored by the RLS experts is methadone, if you can get it prescribed where you are. Typical doses for RLS are low: 5 to 15 mg or so. Much less chance of addiction, less build-up of tolerance so don't have to increase dosage as much. Also much less of that dopey feeling or other side effects. All of which are why it's used for addiction treatment. I use it for RLS and have found it very effective with almost no side effects.

You might also consider adding a drug from the alpha-2-delta class, such as gabapentin (Neurontin) or pregabalin (Lyrica). Good luck!

Bee27 profile image
Bee27 in reply torls_optimist

I think I need to visit my new doctor and see if she can prescribe me something useful. I’m on Ropinrole 1.25, but that seems to have stopped being effective.

Bee27 profile image
Bee27

Thanks

robert1957 profile image
robert1957

please research magnesium deficiency and symptoms of magnesium deficiency and benefits of vitamin d3 k2mk7

Bee27 profile image
Bee27 in reply torobert1957

I take magnesium tablets every day, but they don’t seem to help at all

robert1957 profile image
robert1957 in reply toBee27

What type of magnesium are you taking

Roblau profile image
Roblau in reply torobert1957

Taking a product called Remag by Doctor Dean, which has worked great for last couple of nights. God willing it continues..

robert1957 profile image
robert1957 in reply toRoblau

great well done thank god it seems as if you are on the right track now have you any other illnesses that you have noticed has improved

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