Anything new??

[Alyson66]

Is there anything new to be tried in the fizzy legs world? 😖

[Madlegs1]

No change from the last conversation.

Have you tried all the recommendations?

[Alyson66 in reply to Madlegs1]

Just in the process of accessing some LDN, got an assessment tomorrow so fingers crossed xx

[nightdancer]

nope, sorry to say. Research means $$$$, and there is a severe lack of that.

[Hidden]

«New» as in «new things to try»? I have lots of those. What have you tried so far?

[Alyson66 in reply to Hidden]

Everything,am on a large dose of opioids but hopefully can try LDN soon x

[Hidden in reply to Alyson66]

I have a list of non-medical remedies. Would it help to give you those?

[Alyson66 in reply to Hidden]

Thank you,I would like to have a look,see if maybe there is something I haven't heard of as of yet, very good of you. X

[Hidden in reply to Alyson66]

Hello! Here is my list. My general experience («general» as is «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.

-«WholeTones Healing Frequencies» provides calming music at different hertz (vibration per second). Demos of these are also found on Youtube, and the story behind these can be found at wholetones.com.

I hope you can find something that works!

[DicCarlson]

Well - here's a website that I have not seen before - scroll all the way to the bottom and there are additional RLS pages/comments. Some new therapies like Hawthorne Extract, and Potassium medicinenet.com/restless_le...

[genekdw]

Suboxone worked miracles for me!

I have a particularly refractory strain of RLS. Over the last 7-8 years I have been through all the usual; carbidopa-levodopa 25 mg-100 mg oral tablet, Mirapex, oxycontin, rotigotine (neupro) 2 mg/24 hr transdermal film, extended release, iron transfusion (boosted ferritin from 100-150 up to 400 ng/ml), etc. Typically these initially helped but I soon augmented and withdrawal was hell. My doc recently prescribed suboxone (2 sublingual films , 4 mg-1 mg, each morning). I am also taking 600 mg gabapentin in morning and 1200 mg at bedtime. Marijuana laced brownies may be helpful with the bedtime anxiety and insomia.

This combination has been miraculous! I sleep all night and have NO daytime symptoms.

Not sure if it will help any of you, but there are a few docs who are having good luck with this approach. Suboxone is normally prescribed for opiate withdrawal and is a partial agonist of the opioid receptor. My medicare drug plan has just refused to cover the off-label use of this drug and we are appealing, but, if necessary, I will pay for this out of pocket.