Is burning feet all through the night a symptom of worsening restless legs, as i have also had to increase my dose of Ropinirole?
Burning feet: Is burning feet all... - Restless Legs Syn...
Burning feet
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sangeet1
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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...
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
i dont have much faith in this doctor or any at surgery as he recently precribed me melatonin
i am only taking 0.75 mls of ripinirole
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
Please get off Ropinerole it is a terrible drug, and augmentation is awful. I used to be on it and swapped from Ropinerole to pramipexole every couple of months until I found this group. It is awful to come off it, but I'm now on gabapentin and coping much better with RLS.
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.
i took them well before ropinirole, but maybe not trying them for long enough, but they did not seem to be helping the restless legs and the side effects made me like a zombie, fell asleep in bath, could hardly move
Understood Pregabalin takes at least 3 weeks at full dose to work. And should only be taken at night. Not during the day. The side effects of drowsiness/dizziness tend to settle after 2 to 3 months.But if you didn't get on with them- you can push for Buprenorphine.
Targinact is licensed for rls in the UK. It's a long acting opioid and does not cause constipation. I have it and it's successful for me. It contains naloxone to combat constipation.
Pregabalin has been helpful for me....at least reduction in severity.. I also take Magnesium Glycinate at night and seems to help with sleep
i use Suboxone with no side effects. good luck. i live in California. i hope you can find this medicine
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.
my iron levels were ok, but folic acid levels were low, i am on folic acid tabs now for a month
Doctors will say your iron levels are OK, but what is OK for others is not OK for those of us with RLS. Do you know what your ferritin is? That is the most important thing for RLS. The normal test for iron does not test for your ferritin nor your TSAT so if that is the case it is very important that you ask for a full panel iron test as I mentioned above.
Yes I would try gabapentin again as mentioned above. Pregabalin is more likely to make you fall asleep. Start low 3 weeks before you are off ropinirole to let your body get used to it and stay on the beginning dose until the withdrawal effects from the ropinirole have settled keeping in mind the withdrawal effects can make you lethargic. Also as mentioned the side effects may wear off after a few weeks so you might not want to increase it until that happens. It is rare for gabapentin or pregabalin not to work if you have not been on a DA but certainly some people can't take them because of the side effects. And there are things you can take to counter the sleepiness.
It can be very difficult to get opioids because of the opioid crisis and there are side effects from opioids that can be hard to live with too. Even knowledgeable doctors generally won't give you an opioid unless you have shown that that gabapentin /pregabalin don't work.
You have no faith in your doctor. If you tell me what city you live in there is a very good chance I can tell you the name of a knowledgeable doctor as I have a list of them.
my meds are AMILODIPINE 5MG TWICE CLOPIDOGEL 75MG ONCE ROPINEROLE 500MCG 3 TABLETS JUST BEEN TO DOCTORS WOULD NOT PRESCRIBE OPIOID TO HELP COMING OFF ROPINEROLE DID NOT SHOW MUCH INTEREST IN RESTLESS LEGS
AMLODIPINE is a calcium channel blocker that bothers many but not all. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res...
PANTOPRAZOLE is a proton pump inhibitor that is an antacid that that can interfere with the absorption of iron is you end up taking it because of a ferritin less than 100. RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said that it does. I would recommend Gaviscon Advance be sure it is the Advance unless you are bothered by aspertame in the tablets or sacharin in the liquid . Take it 30 minutes after eating and 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin or antihistamines.
Again I can possibly give you the name of a good doctor if you tell me what city you live in.
I live in a village miles from the nearest town Shipston on Stour Warwickshire
Without a strong opioid i think it will be impossible to come off Ropinirole as the restless legs are vilolent and even get so bad after 1 hour as to cause physical injuries to my body when i tapered down to the last tablet
I have already tried 3 times
Dr Roswell Martin neurologist at Winfield Hospital in Gloucester - he recommended Methodone .
Dr. Bagery - at the Barberry Clinic in Birmingham. He is helpful and knowledgeable about RLS. He has prescribed Temgesic
You will probably have to go private as there can otherwise be a long waiting list. It usually costs between £250 - £350
LOL I HAVE NO SAVINGS LIVE ON BASIC GOVERNMENT PENSION
THANK FOR TRYING TO HELP I APPRECIATE IT
Then go through the NHS. It will just take longer.
I SUFFERED FROM MANY THOUSANDS OF MYOCLONIC JUMPS OR JERKS, FOR TWO MONTHS, I SEE PREGABALIN CAN CAUSE MYOCLONUS SYMPTOMS, I NOW LOOK BACK AND REMEMBER THEY WERE STARTING TO HAPPEN WITH PREGABALIN
I have burning feet as well. After long testing it is small vessel neuropathy.
I suffer with burning feet too. It's called Erythromelalgia. It's quite rare. Many doctors and consultants don't understand it. It does get worse at night. I sleep with my feet uncovered, the windows open and a tower fan blowing across my feet. Even then it's not enough so I have to dip them in ice water for instant cooling.
Ice water dips are the only thing that works for me but it's not recommended. I smother my feet in Aveeno cream and it's really good stuff. Anything greasy or has a high liquid paraffin content makes the burning worse. I tried vaseline once, never again! If I don't get them cold they go from red to purple to black and causes restless legs.
There's no cure and little in the way of medication. Some people find relief with Amytryptaline or Gabapentin but I'm an a very high dose of gabapentin for another neurological condition and it does nothing for my ERM. If you suffer with high blood pressure you might find relief with propranolol.
It's a horrible condition that stops you walking, exercising, going out in the sun, visiting anywhere hot or warm. It takes over your life.
I really feel for you. Go and see your doctor, research it on line and tell him what it's called. Look up the Reynoulds and Erythromelalgia chat group.
I saw my doctor today he would not scribe opioid, to help me off ropinirole, gave me no advice for burning feet if i had said its Erythromelalgia he would have said you keep on ringing up about restless legs i think he believes i am hypochondriac, i never see my doctor just locum
yes i think you might be right about the burning feet starting off the restless legs, but i am hitting my head against a brick wall trying to get any help from my doctors surgery
Burning feet at night can be associated with diabetes. If relevant it could be worth getting that checked out.When severe I use a little spray bottle to mist with cool water. You could also try a cold water bottle.
Lots of differing thoughts offered here , I hope you find some respite.
I also get this ! And it only happens if i put my feet up in bed . They can be ice cold before i get into bed and then absolutely burn and go boiling hot when im in bed - which also triggers the RLS. I get freezer blocks (you know the type u put into a cool bag to keep things cool?) I always have it at the end of my bed and wrap my feet around it every night which helps . (pop a towel under your bed sheet as it defrosts and the sheet gets damp otherwise ) . I e has my feet so hot, that i’ve quickly defrosted the ice pack and had to get out of bed to get a fresh one ). I either do that or sit with my feet in iced water . Also with the ropinerole - start slowly reducing it , as you may be augmenting , and if you aren’t now , you soon will do and the RLS spreads to other limbs . With the help of Joolsg and Sue et al on this group , i was able to completely come off the Neupro patch (rotigotine ) . So please get an opioid and start reducing the ropinerole .
I have always suffered with “hot” feet along with RLS but later developed “burning” feet (feels like severe sun burn). The only thing I could link it to was the ropinirole I was on. Thankfully no longer on this awful drug but still have the burning feet. The only thing that helps me is a fan at night and compression socks/stockings during the day.
I too have burning feet, but occasionally. I don’t know if it’s from RLS or peripheral neuropathy, as the symptoms seem to get mixed in together for me. I was using the Neupro patch ( Rotigitone) for years and got off if and now use Pregabalin, and under the care of Dr. John Winkelman. My RLS is 90 to 95 % improved and symptoms are manageable. The burning feet will bother me mostly in the evening and night. If they keep me from sleeping, I use Icy Hot Advanced, a pain relief cream. This will settle down the burning. I’ve also found listening to music helps me fall asleep because it distracts me from creepy crawling symptoms that can appear at bedtime. I was truly sleep deprived for years but am no longer. It was a difficult and months long journey to get off Rotigotine, but I stuck with it with encouragement from this group. At the time I was on 1800 mg of gabapentin, started before I got off Rotigotine, with the intention of quitting the dopamine agonists. A local neurologist helped me with that and had never heard of cutting the Neupro patch up when tapering off. But Sue Johnson had and it worked and I think my weaning went better than I expected. Good luck.
i have tried to taper off Ropinirole 3 times i get to last tablet and my restless legs are so vilolent they cause injuries to my body, how many days or weeks was it before symptoms started to improve, i can only last one hour on the last tablet
After taking off the last 1/4 patch of rotigotine, I didn’t get sleep for 42 hrs and mostly stood up. My son suggested trying cannabis, which a did and it helped me with a few hours sleep. Next night I had five hours of sleep, and that increased gradually so I was getting maybe five and a half to six hrs a night, which was wonderful. Symptoms during the day were manageable and after a couple of weeks I began to adjust gabapentin dosages to manage evening symptoms and my sleeping at night was maybe six hours. I also was using cannabis to help sleep some nights, like if I had insomnia. As I remember, it was a few months before sleep time improved. It was after I went from gabapentin to Pregabalin that my sleep became consistent. I also hardly ever use cannabis now. Most nights now I get seven and a half to eight hours of sleep.
Interesting thing though, the last couple of nights my feet have become hot and burning and a little jumpy. I also underwent a medication change and just started taking 5mg Amlodipine last Friday for high blood pressure, and I think it’s causing these symptoms. Sue just mentioned to you, in a reply, that Amlodipine, like other calcium channel blockers, bothers many with RLS. I think I might be one. Maybe you are too.
If you try again to get off Ropinirole please go VERY slowly. A tiny reduction (not a whole pill!) every few weeks. Better to go painstakingly slow than to fail to get off of it. I tried a few different times but finally succeeded by going as slowly as I needed to. It is not easy and you will have some difficult nights, but less difficult if you go more slowly with your reduction.
I don't take any medication for RLS. I have burning feet but in my case it's a symptom of Long Covid along with a few others that I hope will disappear in another year.
My feet burn just before RLS kicks in although sometimes I get RLS without burning feet.
I also have burning feet at night. In my case it is idiopathic neuropathy. I find the constant shacking of my legs will ignite my feet quickly. A neurologist can easily find out if you have neuropathy.
I can completely relate. When I was on Ropinirole I had burning feet through the night. I regularly used socks that had gel packs in them which I kept in the freezer. I was on a large dose of Ropinirole for 16 years, augmenting badly. I continued to use these gel socks while I weaned off of this horrible drug, and for some months after. Now that I've been off Ropinirole for 4 years I have ditched these socks as my feet haven't had that burning sensation for a few years now.
by any chance r u on any proton pump inhibitors nexuim type drugs regularly?
Absolutely ! My main symptoms is exactly that & have tried many ways to offset them during the night including an ice cold water footpath which is no fun @ 3am in morning but does the trick for me.Now on 125mg Pregabalin & it has definitely reduced the RL & accompanying burning feet so a great relief ( so far) Good luck xx
I read an article in the Journal of clinical sleep medicine that was titled Pramipexole Alters Thermoregulation in Restless Leg Syndrome
The CONCLUSIONS:
The data suggest that patients with RLS and healthy controls have similar blood flow to the peripheral skin tissue. Pramipexole, however, alters thermoregulation and the previous studies might have been biased by medication. Dopaminergic medication is a major confounding factor when assessing peripheral phenomena in RLS and should be controlled for in the future studies.
I had been on pramipexole for 12 years for RLS and suffered from pain and burning in lower legs and feet. It felt like a first degree sunburn or someone had taken a vegetable peeler to my skin. I loved winter because I would go outside and stand in the snow.
I came off pramipexole cold turkey with help of methadone. That has been 3 weeks ago and I have not experienced the burning legs and feet since, where as I used to experience the burning almost nightly. I have not had any other RLS symptoms either.
I hope you find relief from this awful disease.
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