I've had a nasty cold for 3 days and guess what...no RLS.

[KenBR]

My RLS, over the last few months has improved immensely, through diet and supplements. However, I always awaken once a night to stretch, do exercises, etc. So, 3 days ago I got a brutal cold. And for 3 nights no RLS, none. Is it because my sleep cycle is deeper with my being ill? Or...anyone have any theories?

[KenBR]

Also, forgot to add that night #1 of my having a cold, I took some Nyquil. But just once.

And now 4 nights in a row...no RLS. I looked up Nyquil and now wonder

of some low grade opioid effects from Acetaminophen or Dextromethorphan can be the reason that I've had zero twitching? And...can these drugs stay in my system for 4 days? Here's an article about Nyquil.

wired.com/2007/10/st-nyquil/

[Hidden]

This improving of RLS while Ill & especially with a fever is something I and some others have reported before on this site. I emailed Dr Buchfhurer ( sorry if spelt wrong ) about it & he said it had been reported to them at their clinics as well.

I wish someone would investigate. For me it doesn’t relate to different food or type of sleep. There is something else going on.

I wondered about availability of ferritin??

To my mind this phenomenon may hold an as yet unexplored key & I so wish it could be properly looked into.

It is worth being ill for!

[KenBR in reply to Hidden]

Interesting. Or maybe being sick increases dopamine? RLS

is def a mystery, for now at least.

[Graham3196 in reply to Hidden]

Dr Buchfuhrer told me that inflammation from a fever can raise the ferritin level for a month or more. This might be good news that you only have to raise your ferritin level a bit and no more RLS for you.

Waste no time and get an iron infusion to raise your ferritin to 350 and see what happens.

Doctors might not want to do an infusion until your ferritin level returns to "normal" if they believe its artificially high because of the cold.

It would be interesting to get a ferritin test now and another in 2 months to see if this is the effect. You would probably prefer to have an infusion as soon as POSSIBLE AND NEVER HAVE TO WORRY ABOUT rls AGAIN!!! I hope that becomes your story.

Good Luck Graham

[KenBR in reply to Graham3196]

Thank you Graham! Fantastic advice!!! Really appreciate it

[CORFUORBUST in reply to Hidden]

Hi.

I was at my sleep appointment last Thursday and I told them that I had open bladder surgery on 15 May and whilst recovering for a couple of months on the bed my legs never moved ONCE!! Literally, not a twitch, flinch, jerk, nothing moved and I have RLS and PLMD ectremely severe (38/40). I said to her that I had read there could be a connection with RLS and the bladder and I do notice that when I wake in the night and the legs are going cray cray, I realise if I go and have a wee, when I go back to bed my legs calm down. I said there must be a major connection to the bladder and RLS . The moment my scar healed my legs started up again.

Guess what she said to me.........."Hmm".

YES THAT WAS IT. USELESS PEOPLE!!!!! I just give up with them. Why don't they listen to US, the patients, we know what we feel. They just don't listen unless it's something they want to know, otherwise, I will say it again and again, neurologists are the most egotistical professionals on planet earth and all they care about is brain surgery, they are not bothered or phased by a mere mortal not getting enough sleep. That is obviously my own opinion but, I have seen no less than 20 neurologists, across the UK, in the last 5 years alone and they are all about the same.

Anyway, enough of that. I also wondered was it because I was on such strong painkillers at the beginning. I was on Co-Dydramol 8 a day amongst others. Another theory I thought of is it because the pain and trauma of surgery overtakes the RLS. It is so mysterious.

Answering now to the original poster. I have just got over a 5 week chest infection (did not make the flu jab due to having surgery) and my legs have been going crazy most of the time, so I do not know if it is because you are sick that you slept better or if the illness has taken over the cold. I am pondering the same. Also, the surgery I had did not fix my bladder so I am also wondering if that is what is still causing me problems. Like, if they cured my bladder problems, my RLS would go as I got them both at about the same time I am just realising. Mmm, now I am really pondering!!

I hope wondering about this is not going to keep me awake tonight...............................😂😂

[KenBR in reply to CORFUORBUST]

I hope the best for you. It is so hard to pinpoint causes and effects. Thanks for sharing your experiences

[Tapir in reply to CORFUORBUST]

I too get RLS when I have a full bladder, emptying it causes the problem to go off quite quickly. Some 25-30 years ago I went to my doctor about RLS and he said there was a theory that some people are "wired" differently with respect to their nerves. This is why pressure in the abdomen, e.g. bladder full, eating too much, pregnancy, can cause a problem in sufferers while others have no problem. I have mentioned this to other GPs who generally dismiss this theory out of hand.

However, about 15 years ago I had a double-hernia operation where the torn muscles were supported by a polypropylene mesh fixed in with titanium spirals, 10 in all.

All was well while I recovered in bed but when I tried to stand I collapsed because one of the fixings had been inserted next to a nerve and any movement caused contact between them. The surgeon said he had performed hundreds of this type of operation and always put the fixings in where he knew no nerves existed and had never had a problem before. I think this shows that my old family doctor had a point after all.

There are clearly a number of different triggers for RLS.

Fortunately, the surgeon was able to operate again to remove the offending titanium spiral.

[s_gc in reply to Tapir]

Thank you so much for this insight, the relation to bladder issues has shed light on my experience and has made me think of when the RLS condition started for me. It was definitely at the same time I had to go insane amounts of time to the toilet (even during the day) which was probably a form of cystitis. It disappeared altogether when I found an organic product that has done wonders in just a few applications.

Certainly since this year my need has reverted back to normal (i.e. I get up at most once a night) and in the last month (which also coincides with the time I stopped taking any ferritin supplements) I don' t actually get much RLS at all, i.e. it does not wake me up often and when it does it is much milder than it used to be. It's early days so need to monitor over the next few months.

I have to stress that from reading other people's experience of RLS, apart from a period of 3 months when I would awake every one or two hours (which I already mentioned in previous posts and that was remedied by taking over 400mg of ferritin supplements over 6 months) my own condition would probably be considered as mild, not severe.

sgc

[John_naylor]

Slightly different angle. I have suffered annually with one or two colds which last about 3 weeks and are quite severe. As my RLS has become more severe I have noticed I haven’t had a single cold in several years! I wondered if it was the medication but perhaps there is an RLS link?

Funny one reply mentions a hernia op. I am about to go to hospital (for my first time ever) for a hernia op and wonder how the RLS will react!

John

[KenBR]

Yeah, wouldn't that be nice

[KenBR]

Thanks B

[KenBR]

Appreciate it, B.

[Hidden]

Interesting debate.

One possible explanation for RLS being better when you have an illness, suffer a trauma or have surgery is cortisol.

"Stress" is commonly associated with adrenaline. (called epinephrine in the US) and Noradrenaline. Both are an immediate response to a "stressor" (something which causes stress). Both are a neurotransmitter and a hormone They're given given their names because they are produced in the adrenal (medullary) glands.

There is a relationship between adrenaline and RLS, e.g. beta blockers can make RLS worse. More properly called beta adrenergic blockers they block the action of adrenaline/noradrenaline.

Not so commonly known perhaps is that the hormone Cortisol is also a "stress hormone". Given it's name since it's produced in the cortex of the adrenal glands. Cortisol could be called a protective hormone. In synthetic form, Hydrocortisone, can be used to treat inflammation.

I've just read a study that found giving (untreated) RLS sufferers hydrocortisone in the evening. (when natural cortisol levels are low) can relieve RLS symptoms, compared to people given a placebo.

(Before you leap on that, hydrocortisone, for other reasons, is not a viable treatment for RLS. )

Hence it may be when our body is stressed (physically) it's the extra cortisol that improves RLS symptoms.

Colds/illness/trauma/surgery are all stressors.

[KenBR in reply to Hidden]

Damn Manerva, very interesting

[Coeso]

My theory is you didnt eat much which keeps your intestines empty. I have a theory that I think the intestine is linked to the nerves which go down the leg and if there is no pressure on them , then no rls. Maybe its silly but its my observation. Also not being constipated helps making my theory even stronger

[Coeso in reply to Coeso]

Also I agree with the full bladder theory. Its all pressure on nerves in that area

[Speedy29]

I'm not familiar with LDN. Would you define for me?

[SMPR]

You didn't by any chance rub in Vicks Vapour rub when you had your bad cold?. I'm desperately trying to wean off Ropinirole at the moment, I've reached Augmentation. Its not helping anymore but my body screams out for it. I now have RL and arms and in the chest too but thankfully not all at the same time. Even so, it's become so unpredictable and can start early on in the day. I've managed to come down from being on 3mg for 4 years to 2mg and hsve even been down to 1mg but had to go back up to 2mg in sheer desperation. I have an appointment with the Neurologist again next month, though this time over the phone, not face to face., because of Covid. That's okay, I can still have a blab, I'll write down what I want to ask. They put me on this awful drug in the first place and each time I complained of it getting worse they just up dosed. Not this time. Im not being fobbed off. I can be a little braver over the phone 😁 I have to come off it. Its reaching other parts of my body. I've tried every other drug over the years, started when I was put on Citalapram after loosing my son. I weaned off that but unfortunately, RLS didn't go away. Ropinirole seemed to be a life saver for me Initially, worked a treat. Wish I'd never been introduced to it. If I ever manage to come off it, I will be sure to stay away from dopomine agonists. My RLS wasnt as bad before going on it, now after 4years it's the worst ever. I feel cursed. It's ruined my life. The less I sleep, the worse I am. I'd happily stand on my head for hours if I thought it would leave me. I've just read about a RLS sufferer rubbing Vicks Vapour rub on the bottom of their feet! They say, they have had no RLS for three days now. Hey, I've tried everything else, it's worth a try. I'm off to the chemist today to get a pot. Not sure my other half will like me walking around smelling strongly of Vicks all day and will probably need another place to sleep tonight but I will try anything to rid me of this awful suffering that no one seems to understand, unless of course, you are a fellow sufferer. I'll keep you all in the loop, not holding out much hope but you never know! 🤔 My biggest worry is when I become less mobile as I get older. At the moment I can still try to walk it off abit or shake my arms around like a lunatic, i certainly feel like one when I get going, but for how long? Sorry for the moaning, been up most of the night and feel like I'm sitting in a fog. Just needed to off load. I know you've all been there. 😢