Hi I’m Barbara, I have suffered now for around 19 years with RLS. I get a burning sensation after being in bed for and hour or so. It feels as though I’m sleeping on an electric blanket. If my calves touch the mattress I get awful burning or skin on skin if I lay on my side. I am continuously figiting and turning over to get some relief. I search for a cold bit of mattress or poke my legs out the side of the bed! I often turn onto my stomach so my calves are not touching the bed but this gets uncomfortable and I have to go onto my side or back again! A never ending loosing battle. Even 2 sleeping tablets do not allow me to stay asleep. Over the past 10 years or so I have been prescribed many many meds, ie: Amitripitline, pramapexol, gabapentin, and others I can’t remember the names! None of them seemed to help. Although this recent consultant I’m under did say the doses should’ve be increased and monitored by my GP but that didn’t happen.
I would like to get some feedback from anyone with the same symptoms and any successes that have helped. Many thanks
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Burninglegs
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1. Is this RLS or is it peripheral neuropathy? RLS is most clearly diagnosed by the urgent need to move the legs while at rest; burning sensations are more linked to neuropathy, although more commonly in feet rather than calves and usually constantly rather than just at rest: nhs.uk/conditions/periphera...
Amitriptyline is prescribed for neuropathy and insomnia, but makes RLS worse for many.
Pramipexole (a dopamine agonist, alongside ropinirole and rotigotine) is prescribed for Parkinsons and for RLS, although these dopamine agonists are no longer a first line treatment for RLS amongst experts.
Gabapentin can be prescribed for either, and alongside pregabalin is currently first line treatment for RLS.
2. Has your consultant followed NICE guidelines for investigating RLS and arranged a full panel iron blood test to check your ferritin and transferrin saturation (TSAT)?
3. They should also have looked for possible triggers amongst any other medications - prescription or over-the-counter - that you are taking at present? List any here for guidance from the many knowledgeable people on here.
Welcome Barbara,Can you confirm whether you have been diagnosed with RLS? The RLS UK website sets out the diagnostic criteria.
Some people do experience RLS as pain or 'burning' but it's important to make sure you do indeed have RLS, as other conditions can cause your symptoms.
The key point is you have to have the overwhelming URGE to move. And moving does give partial relief. The symptoms are worse at night or when sitting.
The only problem is that most of the treatments for neuropathy will trigger or worsen RLS.I also have MS neuropathy, but avoid the meds they usually prescribe, like Amitriptyline. That sent my RLS through the roof.
The best treatment I have found for neuropathic pain is medical cannabis. I use oil with 20% THC.
If your RLS is moderate, you may be able to resolve it by raising serum ferritin above 100ųg/L. You could also try taking ferrous bisglycinate nightly.
And magnesium citrate.
Pregabalin and gabapentin are used to treat both neuropathy AND RLS, but you may not have taken a high enough dose to control both. The average dose for RLS is 1200 to 1500mg taken at night only. If you only get the neuropathy at night, you can take the meds at night only.
Avoid dopamine agonists. They're no longer prescribed for RLS as they make it much worse.
See your GP again and restart gabapentin again. It takes 3 to 4 werks to become fully effective.
Welcome to the forum. You will find lots of help, support and understanding here.
Burning legs can be a symptom of RLS but usually pramipexole will work so I too wonder if you have RLS.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. Do you meet all of these?
If so then this is my standard advice:
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. 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 to 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 split the doses with 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 pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about 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 at Https://mayoclinicproceedings.org/a...
You say you took gabapentin in the past and it didn't help. If you were taking it when on pramipexole it wouldn't help much. If you didn't wait 3 weeks it wouldn't have helped. If you didn't take enough or didn't divide the doses, that might also be why it didn't help.
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, 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. 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.
By the way if it is neuropathy, gabapentin is used for that too.
Although it can make RLS worse, trying a small dose of duloxetine for your burning sensations may be an option. It works wonders for my burning feet. I find the benefit outweighs any negative. Athought to be honest my opiods work so well for RLS that they seem to cover any increased symptoms the duloxetine may cause. I feel for you. Unmedicated, the burning I experienced would be worse and more sleep disruptive than even my unmedicated RLS.
Sometimes it can take several medications to get the job done. Although it seems counter intuitive to take additional medications to cover symptoms of the initial medications, it's a stigma that needs to be overcome.
Sorry to hear that you are having to suffer with RLS burning. It is, to say the least, a very unpleasant and intrusive symptom. When the burning started for me, about 5 years ago, I'm pretty sure I had already been augmenting on Primapexole for a couple of years. I just had no idea what augmentation was. The burning felt like a very severe sunburn and like you I was constantly looking for a cool spot on the sheets to rest my arms or legs. Unfortunately, the burning could also arrive during the day and on almost any part of my body including just above my right eye. When that happened, I found that a brisk 20 minute walk could relieve the pain.
Fortunately, about 4 months ago, I started using Buprenorphine and for the most part the burning and the classic RLS symptoms have disappeared. About once a week I do experience some burning but nothing as severe as before. Generally, I get up for a few minutes and am back to sleep within 30 minutes. Now, on most nights, I am sleeping 6 to eight hours for the first time in 30 years.
I wish you luck and hope you find respite from the burning. Take care
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