Burning feet

[sangeet1]

Is burning feet all through the night a symptom of worsening restless legs, as i have also had to increase my dose of Ropinirole?

[Madlegs1]

Sounds more like a neuropathy issue.

Can you define" burning" more?

[Joolsg]

Burning feet is not a normal presentation. But RLS can affect people differently. Some people experience pain or burning sensations.Do NOT increase Ropinirole. Ever. If it stops working- that's usually your first warning about augmentation. The drug actually feeds the disease and makes it much more severe.

The top experts no longer prescribe dopamine agonists because they inevitably worsen RLS AND cause Impulse Control Disorder in up to 38%.

Here's the relevant section of the RLS-UK website. There's also a withdrawal schedule which shows how to get off Ropinirole and on to better medications.

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

[sangeet1 in reply to Joolsg]

already tried pregabalin and gabapentin, they did not help R.L.S, going to see doctor tomorrow, ask for strong opioid like oramorph as codeine, is too weak did nothing accept make me constipated, this oramorph i hope will knock me out then sleep will help repair body and help me off ropinirole

[sangeet1 in reply to sangeet1]

i dont have much faith in this doctor or any at surgery as he recently precribed me melatonin

[sangeet1 in reply to sangeet1]

i am only taking 0.75 mls of ripinirole

[sangeet1 in reply to sangeet1]

if i cut down to 0.25 i have violent restless legs that turn me off my side while lying down and jackknife me if i lie on my back continal all through night night after night

[Joolsg in reply to sangeet1]

Did you take them BEFORE Ropinirole or at the same time? If at same time- they won't help as Ropinirole augmentation overrides gabapentinoids.And withdrawal causes severe RLS/spasms/leg jerks so you need to go slowly with the help of an opioid.

Oramorph, tramadol or Oxycontin are all useful during withdrawal.

Once off Ropinirole- you could try pregabalin again. At night only.

Or switch to a long half life opioid like Buprenorphine.

[SueJohnson]

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

Burning feet can be a symptom from taking ropinirole. There is also Burning feet syndrome, also known as Grierson-Gopalan syndrome, which is a set of symptoms in which your feet become uncomfortably hot and painful. The burning sensation may become more intense at night, with some relief occurring during the day.

However it is much much more likely to be from ropinirole since you said you had to increase your dose.

How much ropinirole are you taking? This is important to know. I strongly suggest you come off it as it can lead to augmentation which you definitely don't want. Up to 70% of people on it will suffer augmentation and some experts believe it is 100%.

Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, 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, 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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.