In my case RLS makes itself felt by about 5 pm each day and seems to largely disappear about 12 hours later. There also seems to be a connection to body temperature. When I say body temperature I mean primarily feet and hands. I have never been formally diagnosed with RLS, but share the complaint with other members of my family. What usually used to spark it off was when I felt a sharp sting (usually in my foot or leg while sitting), but now it is typically when one or other of my feet feels hot. This hot foot sensation usually starts after I come back from an afternoon walk. In winter I try to overcome this by removing my socks and standing up barefoot and walking around at home. In summer I spend long periods standing bare foot on a cool pad or find a cold floor. At night in bed I usually leave my ankles and feet covered by a sheet - at most. At the moment I am able to get through the night with regular doses of Zopiclone, but may have to look for something stronger if symptoms worsen. If I am tired, symptoms are generally worse..
Are these symptoms familiar to others and how do you deal with them. Thanks.
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Rameau
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I’d agree. Many of the symptoms described by Rameau and other posters have similarities to paresthesia. The occurrence of symptoms after exercise could be related to irritation aggravation or just plain stimulation of the nerves by muscles or joints. This is consistent with a correlation between neuropathy and RLS. Basically I suspect that nerve issues can act as a catalyst for RLS symptoms.
Yes. In that podcast that was linked here recently, the data showed that a significant minority (15 or 20 %) of RLS sufferers reported feeling worse after exercise. There is some kind of feedback loop with nerve irritation. Quite a few people on the site report experiencing symptoms for the first time after hip or knee surgery.
I assume you meet this: 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. Is that the case?
Consider the possibility that you have both RLS and peripheral neuropathy? See if treatment for neuropathy helps? Not a medical professional and I do not have neuropathy, so take my comment with a grain of salt. Having RLS unfortunately does not preclude having neuropathy / other leg conditions like varicosities or peripheral artery disease (PAD), or vice versa, sorry to say. I would generally agree with those that say that the hot / cold foot symptoms don't seem consistent with RLS -- but who can say for sure? Not discounting what you are experiencing, and if RLS treatment helps the foot symptoms, that would be a good thing. (scratching head) The body certainly is a complex mechanism!
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, playing and listening to music, meditation, creative hobbies 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.
OTC supplements/remedies include occasional multivitamin , half a paracetamol once or twice a week, senna tablets and Strepsils from time to time. Definitely recommend daily music. Resting my laptop on my legs can also kick things off.
Interesting that resting a laptop on your legs triggers the condition. I typically try to avoid resting my arms and hands on my waist area or my thighs. More often than not, if I do my legs get triggered. I find this extremely odd.
It sounds like your RLS is not under control? Are you taking any medicines for your RLS? Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, 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, 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, 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, using a standing desk, playing and listening to music, meditation, creative hobbies and yoga.
If you latter decide you need something stronger, be sure to post back here for what to ask for as there are medicines that most doctors prescribe that you don't want to be on.
I can relate to what you've said, my RL is worse in summer, cold floor helps calm the legs, laptop on my knees can set off RL toothe warmth and extending feet over edge of bed to cool helps. My mother also had severe RL. I'm holding back from meds, sadly Pregabalin didn't work so next option is methadone. I'm not sleeping much. Even a cannabis edible is not helping much atm. Have zopiclone occassionally but the RL breaks through and that's really unpleasant. It sure is a crazy making syndrome. Have to keep cool and carry on!
Yes. My RLS is now totally controlled but when it wasn't, it would always start with a sharp stabbing pain in my toes.As RLS is a dopamine problem, it follows the dopamine cycle. Dopamine is at its highest around 6am and decreases throughout the day.
So most RLS is worse for the 12 hours you experience it.
Read all you can and follow Sue's advice.
Raising ferritin improves the majority of cases. Avoid dopamine agonists.
I can relate to all you say. I cannot stand anything more than a sheet covering my legs and feet, no matter how cold it is. My feet get hot and I have use socks with gel pack inverts that I keep in the freezer. Many times I know when my RLS is about to kick in when I feel a sharp pain in my legs or feet. Like you my RLS usually becomes lessened when the sun rises.
I sent an answer to Rameau above and then I saw your post. I think your burning feet could be caused by neuropathy. Your symptoms so resemble mine. I cannot bear warmth on my already burning feet and like you keep them outside the duvet. It is strange but even though my feet feel like they are on fire, if I actually touch them they can feel quite cool. My circulation is good so it is nothing to do with that.
When one has RLS and then develops foot neuropathy these two ailments feed each other and make treating very difficult. I hope you find a solution.
Hello Jelbea. Thanks for your response. Interesting observation. I can’t say my feet burn, just that my RLS seems to get better when my feet feel cool or cold. If they feel warm or hot my RLS seems to get worse. Are there other symptoms of neuropathy that I should watch for?
mine seems to happen at anytime of the day or night and I don’t seem to be able to find anything that sets it off. I take Roprinirol sometimes they work sometimes they don’t. Really don’t know what to do.
Look up Augmentation. As you're on Ropinirole, it's very, very common.The RLS becomes more severe, starts earlier in the day and you can't sit still in the cinema. The only solution is to reduce the Ropinirole very slowly by 0.25mg every 2 weeks.
Most people join this site when taking Ropinirole or Pramipexole and quickly learn that it's the drugs that are making their RLS much worse. I've added links below for you to read.
Also read all the posts about Ropinirole and Pramipexole and SueJohnsons responses.
Get your full panel blood tests done and see your GP to ask for help getting off Ropinirole. She describes what blood tests you need, the levels you require and the doses of gabapentin or pregabalin to start when you are nearly off Ropinirole.
Read the Mayo Clinic Algorithm and show it to your GP.
Pregabalin or gabapentin are now first line treatment because of the high rate of augmentation ( worsening of RLS symptoms) on Ropinirole.
OK - since Joolsg invited me, here goes: The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
As she says if you are probably suffering augmentation and you need to get off it. As she advised reduce by .25 mg every couple of weeks.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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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. 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 of gabapentin or pregabalin 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. If you take magnesium including in a multivitamin take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and 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. Check out the Mayo Clinic Updated Algorithm on RLS as Joolsg advised 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...
Hi Rameau - I agree with Madlegs1. This sounds to me like possibly a combination of RLS and neuropathy. When there is a combination of these it is very difficult to treat as each of these affects the other in a negative way. The burning feet you describe is much more like a foot neuropathy. You seem to have suffered RLS for some time and this is now being made more intense with the addition of neuropathy. Pain from neuropathy is often of a sudden sharp nature and for me this often triggers my RLS.
Neuropathy can be the result of many ailments including diabetes, but can also just start as we age. The drugs gabapentin and pregabalin can help with neuropathy and can also help RLS so perhaps it is time for you to make more enquiries into this.
I get hot feet when I’m suffering from RLS, but only at night. A sensation of heat is something I’ve connected to serotonin overload, which is partially a separate issue but it seems to overlap with the RLS. It means that serotonin boosting drugs and supplements make me feel hot esp. the feet, and also triggers RLS. I also get other symptoms such as nightmares and tachycardia.
Hi, I have RLS and the only bit I can relate to is that it is worse when I'm tired. Sorry I can't be of more help but I hope you get this sorted. Some good advice on here!
I have suffered from RL for several years but my neuropathy came about because of Chemo. I am 7 months out of Chemo but my neuropathy continues. I am taking B1 thru B12 Metanx for a few months, plus I am doing accupuncture for it as well. I started both at the same time so not sure which is working best. I see no connection with RL and neuropathy except taking Gabapentin recently for both. My RL are under control right now but neuropathy still bothers me, some days more than others. I am very physically active no matter how my feet are feeling. My doctor said the 12000/14000 steps each day shouldn't make it worse. My neuropathy mostly feels like the ball of my foot is really large and swollen but they are not. It is a slight burning feeling but not terrible. Hoping you find some answers that work
Got to keep feet cool! Warm feet always aggravates it for me. So I feel you on that one. Some great advice on this thread as usual. Good luck Rameau. There will be an answer. Keep asking and trying. You will find it.
I too have RLS, for years now. Its such a horrible thing to have to suffer, i have it even now as im writing this. Its hereditary too, my Dad suffered it and 2 of my sons have it.I was put on Gabapentin for it, it helped at first but stopped awhile ago now., I still take it but have lost faith in its ability to work.
Ive had it well over 30 years, GP put me on firstly Pramipexole but I stopped it, dont take it if doc offers it, I started on the lowest dose, it did help but then soon afterwards it returned so I was given a higher dose, same happened, higher dose again inly to be repeated again, it needs increased and plus when the RLS kicks of again it's worse than before.
I haven't found or doc hasn't in all these something to solve it.
I find walking around the room, it's not present while doing that, but sure as soon as you sit again woe and behold its back, so another walk around needed.
It's horrible 😫 to have, and its not curable.
If you get something that works, come back on here and share please.
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