NO RLS last night puzzling

[mmb8083]

Wierdest thing happened last night. I wasn't feeling well, some sort of virus or something. Had a 102 fever and terrible chills. The oddity was that I did not have any restlessness in my legs at all. I hadn't taken anything either. Its almost like my brain was focusing on my fever and chills instead of my legs

[LotteM]

You’re not the first to notice this. Wait until the fly strikes again and you’ll read similar stories on here. Hope your unwellness isn’t too serious and that it keeps the RLS at bay for a few more nights. Enjoy!

[mmb8083 in reply to LotteM]

Well the bliss ended already. Feeling better today and back to pacing and kicking. The feeling of calm legs is just the best feeling in the world. I feel like my legs are my biggest enemy

[Hidden in reply to mmb8083]

Ooh, I hate it when that happens! We get a taste of heaven, then bam! The movements are back. It’s like God is playing with us, giving us sneak peeks of what we can’t have. So cruel!

The first time I felt this «heaven» was when I first came off the Orfiril. It felt SO awesome!!!! Of course it didn’t last....

I’m glad you’re feeling better.

[Eryl]

If you weren't feeling well, my guess is that you wouldn't have eaten as you normally do, which suggests that the cause of your rls is in what you're normally eating. Try to think back and identify what you didn't eat, that you normally would and you may have your answer. It will probably be an ingredient, like an additive or sugar rather than the main ingredient.

[Hidden in reply to Eryl]

That could be true for others, but the experience of my RLS acting up whenever I’m sick suggests otherwise for me.

[Eryl in reply to Hidden]

Perhaps it's acting up because you've eaten something which you don:t eat or drink regularly, as something totry to mske yourself feel better.

[Hidden in reply to Eryl]

I've written to Dr B about this when it happened to me. He says they know about this in the RLS clinics but it's not well recognised but does occur. I hope they research it!

I recently had a tummy bug bit without fever and ate nothing at all for 36hrs - still have RLS. But I've had relief when I have a flu'y virus with fever.

[Hidden in reply to Eryl]

That would make for a good experiment, then! I’ll document what I eat and drink the next time I get sick (which hopefully won’t be for awhile yet).

I’m starting to suspect that I am sensitive to gluten since I start getting worse movements shortly after a morning bowl of cheerios and then again if I go to a café and have a pastry. I do okay with pasta, though, so I’m a little confused there. I notice that, after my café treat, I sometimes get tired to the point of almost falling asleep (and sometimes do), but then at other times I am fine. I can’t seem to figure it out.

My husband and I were talking about having me go on either the fodmap or gluten-free diet. Do you know if I’d need doctor guidance before going on one of these? I know that the fodmap is specifically designed for IBS, which I don’t have. Do you know if it’d still be okay to try it even if I don’t have IBS?

I hope you don’t mind me asking.

Thanks in advance!

[Eryl in reply to Hidden]

The rls after the Cheerios might be because of the sugar. Although they might be low in sugar compared to some commercial cereals, sugar is easily processed by the body, so it does cause a spike in blood sugar levels. I've read that some people get a benefit from going gluten free, not because they're sensitive to gluten, but because by trying to avoid gluten they're also avoiding starch. By keeping my gluten intake down (but not cutting out completely) I find that my bowel movements are more regular and that I'm sleeping better.

The current thinking is that ketogenic diets (which fodmap is) are healthier. all round.

[Hidden in reply to Eryl]

Ok, thanks! I saw Keto shots for the first time at a convenience store last week. I wouldn't have known what they were if I hadn't heard about it from this site!

[Nosleepatall in reply to Hidden]

Perhaps its the milk in your cheerios! Any dairy affects me almost instantly!

[Hidden in reply to Nosleepatall]

That’s an interesting theory, but I don’t think so since I’m fine with other dairy products. Thanks for the suggestion, though!

I eat gluten-free cheerios whenever I visit with my parents. I remember doing fine with that, so I’m really starting to suspect gluten (although I do fine with other gluten products, so I’m a little confused with that).

I think I need to start a food diary. Is that how you figured out you were sensitive to dairy? If so, how long did you keep it for before you were certain about the dairy?

[Nosleepatall in reply to Hidden]

I read an article about dairy and rls, (wish I could find it again) I can tell immediately if the Dairy in something it’s going to affect me. Not all dairy does for some reason. Yogurt does for sure! I haven’t figured out exactly which ones are the worst yet!! It is just one piece of a very complicated puzzle for me. There are so many things that affect me like, Alka-Seltzer, Benadryl, artificial sugar, and many medications! I also have a bulging disc in my back, sometimes a lidocaine patch helps with that. I use a magnesium spray and Restful Leg Calming Creme that I get on Amazon, a Homeopathic remedy called Restful Legs by Hylands, and another remedy called Zinum metallicum! One last thing that helps sometimes is to sleep on my stomach with my feet off the end of the mattress! Sounds nuts but I would sleep standing on my head if it would help with thr rls!!!!!

Kathy

[Hidden in reply to Nosleepatall]

This syndrome is so strange, isn’t it? It makes absolutely no sense. You want to know what is so weird for me? I can have horrendous attacks, but put me on a long haul flight that would normally be a recipe for disaster and I do fine (I’m from the US , live in Norway, and travel home twice a year). I also use mg spray and a cream by Magnilife called «Relaxing Leg Cream». I’ve tried Hyland’s to no avail and have even tried the metallicum pellets you mention! I‘ve also had some success with sleeping on my stomach! I use compression stockings as well.

Are you in the States?

[mmb8083 in reply to Hidden]

I have thought of ordering the cream from Magnilife. Do you think it helps

[Hidden in reply to mmb8083]

When it works it does a good job, giving a nice calming sensation. Unfortunately, what works seems to depend on the nature of the attack. It is very frustrating!

[Nosleepatall in reply to Hidden]

Yes, in California

[nightdancer in reply to Hidden]

Hylands had a run in years ago with the FDA for false advertising. They have to say on their web site that "this product is not for the treatment of RLS", etc. Hylands has been around forever.

[Nosleepatall in reply to nightdancer]

Nothing seems to work all the time so I just keep trying until I find something that works for awhile!

[Hidden in reply to nightdancer]

I think the cream by Magnilife did as well. When I first bought it a couple years ago it was called «Restless Leg Cream». Now it’s «Relaxing Leg Cream». The instructions on the back have changed as well. It’s such a shame and very unacceptable that companies try and profit from our pain!

[Dogdoo in reply to nightdancer]

Omg i was so desperate i tried those things!!

After the first time, i thought they were just sugar pills.

The lengths we'll go to.

[Hidden in reply to Nosleepatall]

It's interesting that not all dairy products affect you adversely. It might be the same in my case, except with gluten and not dairy. I wonder if different products contain different amounts of gluten. I'll have to research that. If it's true that different products contain different amounts of gluten, I wonder if the same is true for dairy products? I wonder if pasteurized versus non-pasteurized products also come into play here? You might want to check that out. Good luck in your continued search into what dairy products are fine!

[BoldMove]

The same thing has happened to me and yes, I think the brain can only focus on so many stimuli at once until it builds new pathways. In my case diet had nothing to do with it. I even did a 48 hour water fast and introduce different foods back. It made no difference.

[maranatha777]

I have had too when I was sick. But I also had it after a car accident in which the car rolled. That night I had no RLS. I felt it was not food, but neurological.

[Hidden]

Yes, this has happened to me more than once too. I don't think it relates to food, it relates to something else in the brain. I wrote to Dr B when it happened and he replied that this was a phenomenon recognised in the RLS clinics but otherwise not well recognised. he said he thought fever was needed. I said I hoped there was research going on. It is utter bliss isn't it? Makes being ill worth it!

[mmb8083]

yes I agree that it is NOT food related. I ate a lot of the same foods I eat any other day and this illness hit me sort of suddenly sending me to bed with chills fever and just a "not feeling well" type of feeling. During the teeth chattering chills I noticed that my legs were quiet, calm and felt like they did 30 years ago before they became my enemy. I am convinced it has something to do with the pathways in the brain focusing on the illness and not the legs as I had noticed the same thing years ago when I had a fever. Of course last night the RLS returned with a vengeance as I was feeling better and fever free.

[Hidden in reply to mmb8083]

I am inclined to agree, I also think its the brain focusing on the illness, probably busy sending anti-bodies through the body.

[valleysjumping]

Yes, same here. I noticed years ago that the one plus of running a fever was no RLS.

[Bobeee]

Last December my wife tco

[Bobeee]

Last December my wife was hospitalized with bacterial meningitis. She had been on pramipexol and was augmenting when this happened. In the hospital she was suffering with withdrawal (legs were going crazy) when she suffered a seizure and was brought back to life by the attending ICU doctor. I noted that the RLS had completely stopped and remained so until May when the RLS returned. She had received an iron infusion in early January but was recently diagnosed with slightly low iron. for which she received an iron infusion last week. It seems to have stopped the RLS but has unmasked what I believe is PLMD. There are 2 more infusions scheduled in the next 8 weeks so we will see what happens. So - - did the meningitis stop the RLS? Did the iron infusion keep it at bay?

[nightdancer in reply to Bobeee]

Usually the first infusion is the start of relief for some people, IF iron helps them. That is why they do 3 infusions, normally. Do you know what her ferritin level was before the first infusion? That shows how your body stores the iron. For people with NO RLS, "normal is 12-15. For people with RLS, they want that number much higher, like at least 100.

[Wonko_TheSane]

Same thing for me, it's definitely related to fever. When I got a slight flu, RLS keeps going. As soon as it's bad enough for a fever to develop, the RLS stops.

I wonder if there will be research at some point, because none of the current treatments are based on something that's related to fever. Thus, there might be new treatment ways based on whatever makes the RLS disappear when we have a fever!

[Hidden in reply to Wonko_TheSane]

I hope so too. When I wrote to Dr B I dropped large hints .... not that he would listen to me! But we need another tack don't we and someone to think out of the box. Dr B said it wasn't widely recognised but unless we all come forward and say this is a genuine thing and please someone work it out I don't think they're interested in trying.

[mmb8083 in reply to Hidden]

Yes that's for sure. Its discouraging how little most people (including doctors) know or care about this disorder. I'm fairly sure there will never be any research on the fever/no RLS connection but I thought if I post it maybe, just maybe, the right person will read it and hopefully take action.

[nightdancer in reply to Hidden]

well Dr B's hands are tied. There is no money for research for that kind of study, because no one can make any money off of that kind of study. he would dearly love to study why RLS affects pregnant women so much, but again, there is no money for that, because the meds a pregnant woman can use are so limited.

[LotteM in reply to nightdancer]

Sorry nightdancer, but that is bull**. Studying the effects of fever or pregnancy on RLS in itself is not the problem; I can think of both good descriptive studies with people and experimental studies with animals and maybe even kind of simuation studies with cell cultures will be possible. No need to use medicines in these studies as one will be after the question “what happens or changes when...”. The problem is that such studies are aimed at understanding. And cures - whether or not with meds - are still way out of sight in this approach. Thus, no money to gain and thus no interest from pharmaceutical companies, major sponsors of studies on diseases.

Moreover, RLS is probably still not recognised at all as a major health problem, so the independent government and scientific funds will not easiliy classify such studies as worth funding; other problems are bigger and more intersting

Finally, few researchers on RLS think along these lines. Most are medical scientists, trained to diagnose and treat illnesses, not to understand them. For example, there have been quite a few studies aimed at unraveling the iron factor, as people had noticed early on that iron might ‘cure’. But no one has even started to ask the question, and surely not study it, as to why movement relieves the symptoms. Again, I think because RLS is a ‘hidden’ disease and not life-threatening.

In sum, keep up your good work with raising awareness, nightdancer. It is one of the first and crucial steps to enable such research questions get posed and funded much further down the line.

[Dogdoo in reply to nightdancer]

Do you think it could be hormone related?

It is certainly a curious thing.

[Wonko_TheSane in reply to Hidden]

I don't know - there might be pills coming out of that research, too - and thus money to be made by pharma. Fever has certain causes and effects which could be mimicked by a medication. It might result in a new class of RLS meds which we clearly need since DAs cause dependency /augmentation and opioid based ones are hard to get!

[nightdancer in reply to Wonko_TheSane]

That is a common story. I know that happens to me. When I am that sick, I rarely have RLS. RLS doctors are aware of this, BUT IT is the money thing again. ONLY if someone can find a way to make money, Dr. B can talk til he is blue in the face, but he cannot get things done like that unless he can get help from someone who would study the fever thing who is not interested in making $$$$$$$$$

[mmb8083]

yes, I am hoping there is something that can help us unfortunate souls. This disorder has certainly lessened the enjoyment in my life. Too many nights of little or no sleep have taken a toll on my general outlook. I fear there is not enough interest in further research concerning this oddity of fever causing legs to be calm. I would love to know what the connection is with that. Any RLS researchers out there, perhaps you could look into this phenomenon and see what the connection is and is there any way to perhaps trick the brain into submission without actually being sick every day. It would be an interesting thesis for any of you students out there that are working towards your medical degree. Let us poor RLS sufferers on this forum know if anything is discovered.

[nightdancer in reply to mmb8083]

I always hate to type this, but after the last big conference that was held in California this year, Dr. Buchfuhrer who does RLS only and PLMD, and is a big researcher and has done many studies on RLS, he says there literally is nothing new in the pipeline for meds or treatments for RLS. Even HE, and he is the BEST, says we have to work with what we have. And, the reason for that is, the pharma companies cannot make any more money off of it, and there are no new drugs, or POSSIBLE drugs to even try right now. Research is money driven, of course. I am not saying this to discourage anyone, but we DO have to work with what we have. There are probably things that people have not tried yet. There is no one med or treatment that works for everyone and it is maddening from a research point of view. He and other doctors, some from Johns Hopkins RLS Quality Care Center (and the one at Mayo Clinic) *in the USA* all have done big studies. The most successful one has been the big study that was done for 18 months on treating refractory RLS. using opiates to treat RLS. I know they are not for everyone, BUT like me, I have tried EVERY med on and off the list in the last 28 years , and the ONLY thing that has ever helped me is opioids. And, of course, we have the pharma company driven "opioid crisis" going on, and they are producing less and less meds in that category to the point the DEA has cut production by 35%, by the time the first of the year gets here. They are creating a shortage on purpose, and it is SAD. People who need those meds cannot get them, the DEA is scaring the crap out of some doctors, and now the hospitals are experiencing drug shortages, even for post op pain.

[Dogdoo in reply to nightdancer]

I agree!

I live in the Boston area and, like many others, have a huge problem with heroin/fentanyl use so nobody wants to prescribe opiates.

Like you said, people who need those meds can't get them. And the people who shouldn't get them, still do.

And then the pharmacist treats you like an addict.

I've had to jump through hoops and pay hundreds out of pocket to get scripts filled when i had cancer.

Luckily my dr wrote 'malignant neoplasm of the right breast' on all my scripts so the pharmacy treated me okay.

Stopping opiate scripts IS NOT going to stop people from using.

[nightdancer]

The ONE thing we can count on with RLS is that it does whatever it wants, that is why some people call it the beast. It can go quiet, for seemingly no reason, and it can be triggered by many things. That is why I encourage everyone to keep a sleep/med/food journal, to see if there is a pattern for you.

[Dogdoo]

I feel like when the body is trying to heal itself, it produces chemicals or whatnot that fill certain receptors in the brain responsible for killing pain.

Those same chemicals help quiet the rls.