Some time ago someone else posted something about this happening to them and I said I'd experienced it also. So here it is again! There must be some as yet unidentified mechanism which I hope some researchers can look into - those of you with contact with Dr B or John Hopkins can you ask?
I normally have dreadful RLS every night, waking several times _ unable to sit still in the evenings. I take only 30mg Codeine once a night once it kicks in. Also trying to get my Ferritin up.
Normally Paracetamol or Ibuprofen makes no difference. But here I am with a virus, sore throat and fever with no RLS 2 nights running. There has to be a reason. It's not to do with not eating rubbish as I've been eating chocolate!
It must be something to do with the immune system or I have a feeling that Ferritin levels raise during illnesses, not sure. Perhaps it's Ferritin itself and not actual Iron that affects RLS.
It's not to do with additional tiredness I'm sure. I woke during the night but less often than usual and not just restless.
Maybe this will be the answer if someone can just investigate.
Anyone else noticed this as well? I think I have to be fairly unwell, not just a simple cold
One theory is the brain is busy sending antibodies when we are ill, to fight the illness and leaves the RLS alone. ? Ferritin levels can raise when we have some inflammation going on. But having a good ferritin level for me doesnt improve my RLS in any way. And we cant be ill all the time, if it means our RLS goes away. lol
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It does seem odd though doesn't it? If someone could work out the mechanism there might be a treatment idea out there. Maybe some immunological treatment of some sort. We need enough folk to take RLS seriously and investigate it for its own sake and not just use treatments that were designed for something else. This is such a distinctive effect there must be a reason. I would be interested to know how widespread it is as it's certainly hardly talked about.
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I dont think everyone has their RLS disappear when they are ill. I have been saying for years we need a med tailored just for RLS. But, i doubt they will find that med, as we all differ too much. RLS is so complicated.
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I know, it's so odd. I haven't had it improve with every illness, only some. It may be the effect of specific viruses only. There must be something specific there. It's such a distinctive condition though isn't it, RLS, though maybe there are several versions with similar symptoms. I don't have pain like some describe and I don't have the PLMD others describe. All very odd but how I wish someone would crack it!
I also recently experienced this. I had some sort of infection . No fever though but my RLS symptoms were dramatically reduced. The relief only lasted as long as the infection though .. I have no idea what the mechanism is.
My levels of CRP (C-Reactive Protein) an indicator in inflammation / infection was incredibly high .. it would seem counterintuitive!
Yes, I’ve experienced this twice, also after flu jab. It would certainly worth investigating
I was going through one of the worst waves of pain in the last few years, then I got the norovirus and RSL was fine for a few months (while still taking meds etc).
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Thank you to James, LoisTonya, and Ureshl for your replies saying you have experienced this too. I decided I'd also email Dr Bruchfhurer as well and he has kindly promptly replied. he says that it is a recognised but little know fact that fever reduces RLS symptoms but not non febrile illnesses but it sounds as if it's not the fever then from what you are all saying but some immunological reaction ( CRP noteworthy as above ) that accounts for it. I did have a fever on the 2 occasions it occurred. I did once have norovirus ages ago also but can't remember if it had any effect at that time.
I replied and as politely as possible said please could someone try to look into this for us.
What I don't understand is if RLS is a neurological condition then why can't they prescribe meds that are used for fibromyalgia which is also a neurological condition.
It’s not exactly on point but about two months into my traumatic withdrawal from pranipexole, when I was getting virtually no sleep, everything suddenly reversed - my rls completely disappeared and I slept more or less continuously for three days.
It sounds bliss and in some ways it was but it was also quite frightening as I just couldn’t wake up.
Then the Rls returned and it was back to no sleep. The same thing happened twice more - about 3 months apart. Haven’t experienced it in the last year though.
I often wonder what was going on there. I did feel very close to collapse from no sleep on each occasion (had had very little sleep over the previous months, was regularly falling asleep standing up and walking - had difficulty talking etc) and I wonder did my body switch into some sort of survival mode.
I just wish it could be worked out what is going on with all these scenarios, as something is! When I can't sleep when I'm very worried about something, I don't have RLS either. The other odd matter is this business of turning off the switch as I call it during mental stimulation requiring marked concentration. I know that is not just 'mind over matter', but you can feel something actually happen. I use it to try to get back to the ability to sleep when pacing about eg doing puzzles, playing piano, knitting. Some neurotransmitter is being triggered I'm sure. Doesn't last long though. There's far more to this RLS than meets the eye and we deserve interested people who can find the answer!
Yes, you're absolutely right about the concentration thing. If I play 20 minutes of chess when the legs strike, I can get a period of respite that lasts even longer than if I do 30 mins of yoga. Maybe up to two hours. It is definitely not mind over matter. I reckon it is probably something to do with receptor's uptake of/failure to take up dopamine and/or glutamate.
Another thing that is very suprising to me is that the creepy crawley feeling is separate to the urge to move. Since I have been taking dipyridamole I have not had the creepy crawlies at all even though I do sometimes have an urge to move. One other poster confirmed that they find their creepy crawlies respond to different medication from the urge to move sensation. So it seems that the creepy crawlies are influenced by adenosine and the N1 receptors but the urge to move less so. The whole thing is so bloody complex. I don't get the painful type of rls - I wonder would the pain be separate from the urge to move also.
If you look at the criteria for RLS, i believe it says, you dont have to have the sensations but you MUST have that urge to move. What i used a few years ago, at night to help me sleep and this was when i was unmedicated, was music. Having a CD player and earplugs playing some music i liked, which was usually sloppy ballads, having the sound up quite high, seem to block the RLS out, distraction and consentrating on the beat, the words of the music i would fall asleep, when i woke up with RLS i would repeat playing the CD. Unfortunately that trick doesnt work for me now, even with me taken meds, i put that down to the progression of my RLS. I get pain with my RLS and they go together the pain and the urge to move. For me the pain is in my calf, depending on which leg is having the RLS at the time, a deep ache in my calf.
What I find is that the concentration thing has to not be easy and also needs to vary. It's as if the RLS works out how to get the better of it in time. If the RLS is really bad at the time I can't concentrate enough to do the things which are necessary. I have to ring the changes to make it have an effect. I've never tried listening to music but will now. Reading is impossible as you just thrash about, at least I do so that doesn't work at all.
I'm still hoping to try dypridamole. But do you actually find it an advantage not having the creepy crawlies if you still have the urge to move? I think it's the urge to move which drives me the most mad, not that I've ever been in the position to separate the 2. Sometimes if I'm sitting in the evening I just whack my feet up and down hard on the floor - only any good if no one else in the room with me though
Your first paragraph exactly describes my experiences also and in particular I relate to that feeling that the bloody Rls actually works out what you are doing ...
Of course the urge to move is awful and I am currently awake at 4.40am courtesy of it (I am taking a break from pramipexole for a few days in the hope of maintaining the effectiveness of my very low dose of .044). However, yes, the absence of the creepy crawlies makes it MUCH more tolerable.
The biggest benefit of being on dipyridamole however is the fact that I feel so ‘normal’ during the day now. I get things done like a normal person and I don’t feel like I am just dragging myself around and barely living. I feel ‘normal’ - it is beyond fantastic.
Hi, my seven-year-old had a flu like virus where he did not eat anything for five days last February. His are rLS completely went away two days later. I think it has to do with the fact that he did not eat for a few days and cleared out his gut, or maybe starved the bad bacteria. His Gastro intestinal doctor said that the gut flora changes after a virus.
Yes, I think gut flora does change after a virus. But I was eating chocolate! Dr Buchfuhrer who is great at replying to emails from his California base has written today that it is known but not well recognised that fever reduces RLS symptoms, they don't know why - I wish they'd look into it! But some folk on this forum since I posted this have said that they don't need the fever to improve matters. One person said it improved after norovirus - that would add to the change in gut flora theory. Others have said like I've found that only certain illness have this result and mine have both involved a fever.
Ok. It’s been about a month since his flu like virus (which included a fever), and the rls hasn’t fully come back yet (although he’s had it once or twice) So I think it has to be more than the fever. So weird that sickness can be helpful with Rls.
I’m giving my son flagyl to treat for sibo. He tested negative but the doc said treat anyway bc the test is not accurate. We will at least get a fresh start with the bacteria. Then I plan on populating the bacteria again with vsl3.
It's probably like it all seems to be - multifactorial. I just wish all the factors could be solved. I'd love to think mine won't come back for a while either but time will tell.
I think you're right. There seems to be an immunity factor at play. I've noticed this very same thing with my fibro symptoms. The fatigue lifts. That's a rarity. The cold or whatever makes me feel lousy, but the dreaded fatigue disappears for awhile. There is something to this.
Is it possible that when you are feeling crook you don't eat much and among the foods you are not eating is one or more trigger foods. I have problems with Gluten Caffeine and lactose I think many people find alcohol a problem too. As well as these I am following a FODMAP diet so there are many foods that I dont eat normally) Perhaps you don't buy coffee much when you are suffering at home.
With many food intolerances the problem is not just eating lactose but how much you eat. There is a threshold that you can tolerate In my case I can take a cup of milk a day but if I take a cup and a half I get RLS.
There is also a residual problem so that if I drank a cup of milk every day then I might get RLS after say 5 days.
( I just made up the 5 days to show what I mean because I am not willing to try to bring on a couple of days of RLS with no sleep and therefore no useful work done. It undoubtedly varies between people. )
Hi Graham, yes, what you suggest is possible though for some reason I don't think the food is the answer as when I've felt unwell at other times I've eaten in similar ways without the effect on RLS. I think it's something to do with specific viruses or the fever.
Dr Bruchfhurer replied to me to say that they recognised this fever effect from people they see at clinics saying the same but they don't know the reason but of course it still could be something other than fever and some of my repliers have said it has happened to them after norovirus and flu vaccine. You are among the most disciplined among us re diet and I really admire you for this. I used to think cheese was a culprit, now I'm not so sure. I rarely drink alcohol so I don't have that to cut out.
I still think there is a separate effect related to illness and I so wish the researchers out there would look into it. Between us all we should crack this if we pile in all the evidence we can.
But there has to be a food effect in some of course because you know without doubt this happens to you
For some of us food is a definite contributor but perhaps not the only one.
We need an hypotheses to test. If you are intolerant of lactose then your body needs an enzyme called lactase Perhaps if you have a fever the body's lactase gland (or where-eve Lactase comes from) becomes extra active with the higher temperature. Bingo you have lost your RLS. A painless, but very limited experiment, would be to get some of the medicine that replaces the natural Lactase and see if the RLS goes away.
This is the advantage of the exclusion diets. They cut out everything except food that is known to be very well tolerated. When the problem is gone then you reintroduce foods one group at the time until the RLS returns and then you know what the cause is.
This is one problem with the vegan diet. If you do through the effort of being on the vegan diet for a couple of months and the RLS has not gone away you would naturally go to the low FODMAP diet for a few weeks. ( found it needed about 12 weeks to work but perhaps I wasn't doing it right.) A vegan diet would probably include many FODMAPS so if the problem is FODMAPs then you will get no relief. This is just the reverse of the above situation so if the FODMAP diet doesn't work then it would be logical to try the Vegan or the low chem diet. Starting with the FODMAP or the low chem diet has some logic because they are better known to fix some problems. This might just be because they get their test subjects from research hospitals and most of their patients start with a disease that is expected to be caused by some intolerance.
I think my message here is that if one diet doesn't help don't give up on diets. Just try one of the others. If diet is only a "cure" in 50% of all cases that's better odds than real medicine if you include the miserable side effects
Cheese is a lactose problem. If Lactose is a problem for you then you can eat old mature cheese or a soft cheese such as Camembert or Brie. There are worse cures than having to sample all the Camembert you can find.
They say that 5 to 10% of the population have RLS. It doesn't appear that doctors are generally included in this or you would have a force driving research. What is it about doctors that exempts them from our misery? Are they close to people suffering just the right viruses? Sounds a bit hard to believe but the truth may be stranger than we can imagine yet.
Hi Graham, I am a dr or at least was till I retired. I started having RLS badly when I was around 50 but a little bit occasionally before that. My Mum had it too and she was a Dr. But I was a GP and we had no access to research opportunities, or at least any that were likely to have any significant effect. To my shame I remember a lovely lady coming to see me describing her RLS, or at least I told her that was what it was as I recognised it in myself. But at that time mine was mild and it was pre DA days. I had no idea what torment was possible. I explained what it was and said sadly there was nothing that could be done about it - true at the time.
i sometimes wonder if the guys at the specialist clinics and research places either have it themselves or had family affected.
One of my main aims now is to throw as much info as possible at folk out there who might bight the bullet if inspired enough by some information or a drug co who could see a profit coming and hope they take it up. We've got to find one or more answers. It's too disabling and widespread for it to be ignored.
That's also very interesting about the various cheeses and might explain why sometimes I've thought it affected me and other times not. I'll stick to old mature cheese, and camembert and brie, all of which I love. Where does blue cheese come into this - do you know at all? I've tried no gluten and decided it wasn't implicated, but of course it might be that I was eating another trigger at that time. I've also in the past decided that yeast extract in various stocks and the dreaded marmite might affect it, and also ice cream which I blamed on vanilla as eg custard does the same - but they of course also contain milk which I don't take much of otherwise, except in porridge which I've also thought is a trigger ( and I love porridge being a Scot ) and also where do bananas fit in which I both love and think is a trigger as oranges seem to be - what a pity.
I know you've explained the best method of ascertaining all this to me in the past for which I'm very grateful. But of course I'm both lazy and tired so any quick handy hints gratefully received!
Sorry if this is too much detail but it's a guide to what works for one person.
I currently avoid blue cheese but that doesn't worry me too much. I had a virus a few years ago and lost my sense of taste. The taste is gradually coming back so I can enjoy many foods again.
I eat one banana per day for breakfast and then follow it with a couple of fried eggs and rice cake cheese sandwiches. Rice cakes are great because I can eat them with matured cheese, Camembert, peanut butter or even a bit of Nutella. I have overdone both bananas and Nutella in the past. When I started bananas were about the only thing I liked and were allowed to eat so I had about 6 or 7 a day. After a while that caught up with me and the RLS returned so I went to one, or occasionally two, bananas a day. Nutella with rice cakes is limited to one every two days, from experience. I have to be cautious of oranges and again I find that one every two days seems to be acceptable. I also eat some gluten free bread with jam or cheese. Jam you have to be careful of because many use apples or pears as fillers and apples and pears contain FODMAPs so if FODMAPS turn out to be your problem the read the ingredients carefully. "95% real Fruit" might not mean 95% strawberries,
I also have Uncle Toby's oats some days which I think is same as porridge. I originally had them with lactose free milk but then I discovered that they were not bad with just water. I also used to spread sugar all over the porridge but I have cut that out because I don't want to start putting on lots of weight.
We have FODMAP friendly fresh bread available but it contains gluten. Initially I was delighted because I thought that FODMAP friendly excluded gluten The RLS returned and I went back to read the label properly. Now I allow myself a few slices of gluten free bread per day. For some reason I prefer it toasted although I dont think that makes any difference from the RLS point of view.
I also have a feeling that the oats had some beneficial effect so if I decided to ignore the diet for a birthday dinner and then followed up with Uncle Toby's before bed there was a smaller chance of RLS that night or the next night. I am not sure if this is a real effect. There are just too many experiments to do and only one specimen to test them on!
In Australia we are lucky as we have two brands of lactose free milk. One is long-life and the other is fresh. I don't know if this is as readily available available in other countries.
Meat eggs fish are allowable so I have that and allowable veges like potatoes, green beans pumpkin and carrot.
I often have a desert of flavoured lactose free yoghurt.
I think I drink too much tea even though it decaffinated so I am trying to limit that and drink water instead.
When I am away from home I try to buy lactose free milk in my decaf coffee. If not available I used to accept soy milk but if I had two or three cups in one day I sometimes had a slight problem so now its either lactose free or black coffee.
Right now I am looking forward to supper. A couple of rice cakes wrapped around three slices of vintage cheese with ham and a bottle of water.
Thanks Graham, I'm very tempted just to try your version verbatum as it contains the sort of things I'm happy to eat. I could easily live on mature cheese and rice cakes!
Do you know if you have lactase enzyme deficiency or whether just processing lactose has an adverse effect. I know quite a lot of folk of Mediterranean origin have lactase deficiency but that isn't necessarily the problem for RLS I wouldn't think.
Thanks again. I'll let you know. I'm still a bit off my food and still have a bit of a hangover benefit from the virus re the RL though it's back a bit
I don;t know why I don't tolerate lactose. I haven't bothered following that up. My understanding was that I could take lactase enzyme and then eat lactose but it sounds like there might be an alternative processing problem. I think my philosophy is that its better to avoid something that causes a problem rather than take some medicine to correct it. There is so often a side effect that might be a long term thing and make more trouble than it's worth. Avoiding lactose is only a minor inconvenience.
I hope your virus turns out to be a permanent cure, You're blood might literally be worth bottling!
I forgot to mention that I also eat steamed rice and canned tuna a couple of times a week. We can buy small single serve cans of tuna with flavours like chilli, lemon and pepper, olive oil and half a dozen others. Rice is good because you can cook up enough for three days and just add flavour, I sometimes add a raw egg to the cooked rice and then microwave it until the egg is cooked.
We could start a recipe forum but I think I have just about run out of my repertoire.
That happened to me in the latter part of having the flu / I had a week of no RLS and I wondered what happened - it came back again when I got better. Researchers should be aware of this as part of equation.
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