Compression socks?

[NanaJay123]

Recently diagnosed with RLS. So far no medications have worked for me. Has anyone tried compression socks? Thanks

[kylieah]

not helpful for RLS for me. They do work sometimes for my neuropathy pain though.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

They can help some. They didn't help me. No harm in trying.

I see you mention pramipexole in your profile. How much are you taking. And since you said no medicines are working I assume it is not controlling your RLS .

Have you tried gabapentin or pregabalin?

[ChrisColumbus]

There's no harm in trying them. Certainly less harm than pramipexole or ropinirole or rotigotine - all of which eventually make RLS worse for most in the long run.

But what you really need to try to get to the bottom of - before taking ANY drugs for RLS - is what's triggering your RLS.

Have you had a fasting full iron panel and been given the results for ferritin and transferrin saturation? RLS sufferers benefit from higher than 'normal' levels of ferritin.

Are you taking any medications - such as sedating antihistamines, antidepressants, antipsychotics etc etc? Many things trigger/exacerbate RLS.

Do you have dietary triggers? - mine are too much sugar, alcohol, artificial sweeteners (particularly aspartame), caffeine (although this helps some).

By cutting back on these things, monitoring iron levels, supplementing with magnesium, and avoiding triggering medications I have largely eliminated RLS and don't need any RLS specific meds.

[NanaJay123]

I was taking 50mg of pregabalin. Then I was given 125mcg of pramipexole. I've had all the blood tests, waiting on the results. I have to have a MRI on my spine to eliminate anything else. I'm thinking maybe getting CBD oil. I also have rheumatoid arthritis which is controlled by methatrexate 10mg once a week

[ChrisColumbus in reply to NanaJay123]

From the Mayo Algorithm, the RLS 'bible':

"Dopamine agonists" such as pramipexole, ropinirole and rotigotine "are an effective treatment option for RLS and were formerly used for first-line treatment of RLS. However, because of increasing awareness of the high incidence of dopamine agonist–induced worsening of RLS symptoms known as augmentation and the risk for development of impulse control disorders, alpha2-delta ligands" - gabapentin, pregabalin - "should, when not contraindicated, be tried first".

That's if you really need medication for RLS. Simply raising your iron levels may ease or stop your RLS symptoms.

You should have a full panel iron test to include serum ferritin and transferrin saturation (TSAT) numbers. It should take place in the morning, after fasting overnight (nothing other than water), having not taken iron supplements or multivitamins containing iron for 48 hours before.

You must then insist on getting the actual numbers: there's a very wide range of ferritin numbers that a doctor will call 'normal' and most don't know that RLS sufferers need higher levels. We benefit from ferritin levels over 100, preferably 200 or higher.

On the basis of a consensus of RLS experts, it is recommended that all RLS patients with serum ferritin concentration of 75 μg/L or less and transferrin saturation below 45% should receive a trial of oral iron therapy......

A common oral iron regimen is 325 mg of ferrous sulfate or 50-75 mg of ferrous bisglycinate (Gentle Iron) in combination with 100 to 200 mg of vitamin C with each dose to enhance absorption, once daily or once every second day. Iron is best absorbed on an empty stomach.

However, some can't even tolerate Gentle Iron: if your iron is low and you can't tolerate tablets (and/or want a faster result) an iron infusion would be best - but in many areas of the UK (don't know about Australia) it's very difficult if not impossible to get an infusion unless you're actually diagnosed anaemic. It may be possible to get an infusion privately, but this can cost c £800 here in the UK.

I'm getting ahead of myself here: get the iron test and come back here with the numbers for further advice.

As I said in my earlier reply you also need to look at any other prescribed or OTC medications that you're taking: list any here (other than the methotrexate you've mentioned) and one of us can advise.

Diet may or may not also be a factor as i said earlier.

[SueJohnson in reply to NanaJay123]

Are you off the pramipexole or still on it? This is important

50 mg of pregabalin is below the starting dose for RLS (unless you are over 65 and then 50 mg is the starting dose) so it is no surprise it didn't help you. According to the Mayo Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Do get the full panel iron test that Chris mentioned. That is the first thing a doctor should have done.

I'm not sure why you are having an MRI of your spine unless it is for something else. It is not used to diagnose RLS.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks which you mentioned, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD which you also mentioned, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[ChrisColumbus]

Your doctor may not know much about RLS (few do). Do you have all the following symptoms:

From RLS-UK:

"The International Restless Legs Syndrome Study Group (IRLSSG) has proposed a set of RLS diagnostic criteria - the fifth of these criteria was recently added. Diagnosis of Restless Legs Syndrome can be made if all of the five criteria are met:

1. A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs: Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" to "burning" - some people say it feels like they have insects inside their legs or arms. Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.

2. The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting.

3. The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.

4. The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

5. Symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis."

[DNoda]

they definitely help me a lot. I am using them for 8 years already. I would go mad without!

[NanaJay123]

Thanks for all your suggestions. You are right doctors don't know much about RLS. I started symptoms back in October, and not once did any doctors suggest it could be RLS. Once I saw the neurologist and he diagnosed me it made sense. I didn't know anything about restless legs syndrome. I thought it was just restless legs. Not the intense burning pain I was experiencing. I'm 75 by the way. I tried to contact my specialist, but he hasn't got back to me yet. I tried the compression socks last night. Even though I had pain through the night, my legs don't feel as tight this morning.

[LotteM in reply to NanaJay123]

Did anything change last October? Sufden onset without previous periods of (unrecognised) RLS is rare. I also ask, because the ‘burning pain’ you mention is not a typical symptom if RLS, although many people do experience painful RLS. Has the neurologist ruled out other issues/causes? That is part if the diagnostic process.

Hopefully the socks help! I have them too, they may make the symptoms slightly more bearable for me. Haven’t used them for a while, as I have effective medicines (buprenorphine, after failing dopamine agonists and gabapentin/pregabalin).

[NanaJay123]

Just one question for Dnoda. Do you wear the socks all night?

[DNoda in reply to NanaJay123]

Yes I do. Beware that they are not very tight as it’s not good for your blood circulation.

[Keith1231]

I also have RLS, other than various meds (currently on Pregabalin) I have tried the knee length compresion socks that worked to a degree. They are so difficult to get on and off so needless to say I didn't use for very long. However, a long came the short ankle length, toeless, compression sock that are brilliant. Easier to get on and off and far cheaper. Good luck.

[Allyp69]

I wear compression socks/stockings most days in winter but makes no difference to my RLS. Therapulse works for me but not while it's on my legs..after...

[NanaJay123]

My neurologist has referred me for a MRI I guess to rule out anything else. I can't get it done till April 19th. I can't think of anything in particular in October. 3.5 years ago I was diagnosed with statin induced myopathy. The symptoms were similar but not as severe needless to say I was taken off my statins and given ezitimibe instead. My symptoms went away

[Simkin]

30 years ago St George's Hospital, London, put me in compression socks as they thought in those days that RLS was caused by poor circulation.They made no difference at all to me.

[dklohrey]

Like some of the others, I tried compression socks. They helped a bit. I suppose it depends on how severe the symptoms. I finally gave up on them. Might be worth getting a pair to try. I also tried the weighted blanket. That didn't work for me either. I ended up kicking it off the bed. Ropinirole worked for me for years until augmentation set in. I am now on 300 mg of pregabalin. Somedays I get 6-7 hours of sleep. Somedays 4hours. Recommendations - stay away from sugar and caffein and eat a light dinner; also take either pregabalin or gabapentin as prescribed by your doctor. Good luck.

[Tildabri]

Bit late to this one, sorry, but I have recently started using compression socks (mainly for varicose vein pain) and I have started sleeping much better and for longer, and I'm getting fewer, if any, RLS attacks during the night. (I don't wear them in bed.) This could be a short-term thing, or coincidence. Quite possibly the vein pain was triggering the RLS. My socks are prescribed by my doctor, measured to fit me at the pharmacy, and are very good quality. Certainly worth a try, I would say.

[fishinphil1946]

At times compression socks work for me. The easiest socks to get on are the most expensive pairs. This is because you can tug on them. They are somewhat elastic. Another tip is to put your hand inside to the heal and pull up making the sock "inside out." Put over toes and pull up on toes, ankle, and shin. At this point you can twist to position the heal. Finally pull up to knee. Perhaps there is a video of this technique. I learned it when I bought the socks from a medical supply store. You won't get any advice from a regular store like Walmart. I was advised to not sleep with them on. I am not really sure if they work on RLS or neuropathy.

Best Wishes.

[macramegirl]

The stockings help with keeping my swelling down but not with the RLS.