Hello, I have been struggling again with RLS since I possibly had Covid last year in March. My first time of RLS was in 2000 after I was ill with the Epstein Barr virus. After a few years of RLS it became less and less until I only had it a few nights per months and only always 2/3 nights before my menstruation started. But that changed in March of last year.
I have been trying to control my RLS with painkillers alternating between Co-codamol and Ibuprofen/Paracetamols to give myself a break from Co-codamols. I am still trying to get my Ferritin levels higher with iron supplements. At the moment I have managed to raise it from 25 to 48 in the last few months.
I had also started taking Kalms before bedtime. Recently my pharmacist suggested to try Nytol instead of Kalms for a few days. And after taking it for about 6/7 days I have noticed a marked improvement. Has anybody else experienced an improvement with taIking Nytol or any other antihistamine? I know there is some evidence that a low histamine diet can help with long Covid symptoms and I will look into this more but I also wanted to ask in this forum in relation to RLS because this seems to be my main 'long Covid' symptoms since I had it last year. Thanks.
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KassandraTroy
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Firstly any sedating antihistamine such as diphenhydramine which is found in Nytol will make RLS worse.
I would suggest avoiding it.
Taking iron with the aim of increasing yourferritin level to at least 100 is a great idea. As long as it's still less than 75,oraliron canhelp.
If you feel that progress in raising ferritin is slow then it may be that you need to look at which supplment you take and HOW you take it.
A supplement which isnreputed to casue less problems is ferrous bisglycinate (gentle iron).
A fairly well accepted way of taking this for best effect is -
Take it in the evening
Take it 30 mins before or2 hours after eating
Take a glass of orange or vitC tablet at the same time
Avoid taking antacids or magnesium at the same time
Onlytake it once during any day and only every two days NOT daily. Tius can improve absorption by up to 50%.
Codeine, as contained in co-codamol is known to relieve RLS symptoms. This is not because it's a "painkiller" it's because it's an opiod.
It seems to be a popular myth that anything that relieves pain will releive RLS. This even includes things like TENS machines. It is a myth.
However, codeine is only a weak opioid and the amount found in over the counter co-codamol is only small. The main ingredient is paracetamol.
Co-codamol may be of some value for mild RLS only or as an adjunct to other medicines.
Ibuprofen, over the counter may again be of some value for mild RLS. This is not because it is a painkiller, it's because it reduces inflammation. Inflammation is a known mediating factor in RLS. However, if taken in sufficient dose, long term use would cause more problems than it helps.
Paracetamol. I have no consclusive information about this for RLS. A few members of this community have said it helps with their RLS. I cannot see, theoretically why it should.
Just checking, but I hope you are aware that taking co-codamol and paracetamol together would be taking an overdose of paracetamol.
Kratom is quite often mentioned in the community and anecdotally at least appears to be effective. Taking it is not without risk. The main risks arise from it not being regulated, not being standardised and not being supervised by a health professional.
It's also important that you identify and avoid anything that may be making your RLS worse. i.e. aggravating factors. These are identifed in other posts in the community. This includes anything that lowers dopamine levels or interferes with iron metabolism.
To mention everyday triggers, alcohol, sugar, nicotine and caffeine should be avoided.
There are non-medical remedies for RLS, which I imagine others will suggest to you.
CBD oils appear, in general to be of little value for RLS. CBD oils relatively high inTHC or ulitmately medicinal cannabis are more likely to help.
If your RLS becomes so severe that it is causing you more serious problems then you would need to consider taking an RLS medicine.
This may, in fact, be a safer and more effective option than taking such things as codeine, ibuprofen or paracetamol.
Thank you very much for your detailed response Manerva.
I am following your advise on how to take the iron supplement and my ferritin level has increased but it seems to increase very slowly now. From my second to third blood test it only increased from 45 to 48 over two months, whereby the first two months of me taking the supplement it increased from 25 to 45. My GP thinks that this might be as far as my 'body allows to increase it' but I will keep taking the the iron supplement to see if I can increase it further.
Yes, I don't understand the improvement due to the Nytol either. Maybe because both times my RLS was caused by a viral infection (Epstein Barr the first time and Covid now) that it responds to a different treatment than other causes of RLS?
My GP has offered to prescribe pregabalin but I wanted to hold off a bit to see if I can increase my ferritin level more before I go down the meds route, particularly after reading some of the struggles with coming off them on this forum.
Actually most find Nytol and sedating anti histamines make RLS much worse. You're in a very small minority if they don't.The co codamol will help as the codeine is an opioid and opioids are very effective for RLS. You'd be better asking your GP for codeine because too much paracetamol can damage your liver.
As Manerva advises, raising ferritin levels above 100 will help the majority of RLS sufferers.
Yes, I don't understand the improvement due to the Nytol either. Maybe because both times my RLS was caused by a viral infection (Epstein Barr the first time and Covid now) that it responds to a different treatment than other causes of RLS?
My GP has offered to prescribe pregabalin but I wanted to hold off a bit to see if I can increase my ferritin level more before I go down the meds route, particularly after reading some of the struggles with coming off them on this forum.
You're probably right. My RLS is due to MS scarring in the spinal column. EBVis the main culprit for triggering MS. I didn't respond to pregabalin or gabapentin, although they help many.Pretty sure RLS is caused by several different factors, including viruses and so we are all different in our responses.
I often wonder if antiviral meds would help. Many people with HIV who also have MS and are on strong anti viral meds have found that their MS dramatically improves. There's still so much research needed and hopefully the current LongCovid studies will help other conditions.
Thanks Joolsg. It's very confusing at times. My symptoms definitely tick all the RLS boxes, always have and my activities haven't changed last March. The only thing that changed was me being ill with Covid (most likely. There weren't any test available then to verify).I was diagnosed with ME/CFS the first time round in 2000 after the Epstein Barr Virus caused havoc to my system and caused RLS for the first time. Even NICE guidelines have to be questioned sometimes. They still try and recommended GET (Graded Exercise Therapy) for CFS/ME when it has been clear for decades that it makes people's conditions worse short term but also long term. I guess we have to find out what helps us as individuals. I have started taking sedative antihistamine prescribed by my GP a few days ago and it is like a miracle. I have only had RLS very very mildly during one night. I obviously don't want to take it long term but I feel so much more rested now and will have to see what to do next.
So I presume that what I am suffering with is RLS.
My first encounter of RLS syndrome was in 2000 after I fell very ill with the Epstein Barr virus. It improved over the course of three years and I only had a couple of bad RLS days every month before my menstruation. After I had Covid in March 2020 my RLS flared up badly again and is present every night again except for the last few nights which is confusing and great obviously too. The only thing that has changed is that I started taking Nytol about 10 days ago. And I only actually take half the recommended nightly dose.
I will talk to my GP about that. I am aware that I am not supposed to take Nytol for more than 14 days so I need to find out if there is anything similar I can take more long term. I know that some long Covid sufferers have success with improving their symptoms significantly with a low histamine diet. Maybe there is some relation between my improvement due to the antihistamine and that fact.
It is a mystery definitely. Sedating antihistamines are well renowned for making RLS worse.
In fact so much so that they can be used as a test for RLS. This is known as the "histamine challenge",
It involves simply giving a dose of a sedating antihistamine.
If the symptoms get worse, this confirms RLS. If they don't, this casts doubt on the diagnosis.
Another "RLS test" you could try if your doctor agrees is to take a dose of levdopa. This can stop RLS within 15 minutes. If it doesn't stop your symptoms, again it casts doubt on whether you really have RLS.
I appreciate that you say your symptoms tick all the boxes, but the criteria are a bit ambiguous and open to misinterpretation. What about the fifth criteria?
I'm wondering if your "RLS" symptoms are a result of covid 19. Little is yet known, obviously about longer term eftects.
I think it wise to hold off on taking pregabalin. Although if you do have severe RLS it is a good option.
I would also avoid using any other antihistamine as a sleeping aid. It's more common to use a benzodiazepine or Z drug, but only for short periods.
If sleep is your main problem, I think it's important to identify all the factors affecting it, not just throw drugs at it with their long term consequences.
It's very confusing at times. My symptoms definitely tick all the RLS boxes, always have and my activities haven't changed last March. The only thing that changed was me being ill with Covid (most likely. There weren't any test available then to verify).I was diagnosed with ME/CFS the first time round in 2000 after the Epstein Barr Virus caused havoc to my system and caused RLS for the first time. So yes and no. Covid definitely made my RLS flare up again but I thought a virus infection is quite a common cause of RLS. So the fifth criteria seems to be covered too.
Even NICE guidelines have to be questioned sometimes. They still try and recommended GET (Graded Exercise Therapy) for CFS/ME when it has been clear for decades that it makes people's conditions worse short term but also long term.
I guess we have to find out what helps us as individuals. I have started taking sedative antihistamine prescribed by my GP a few days ago and it is like a miracle. I have only had RLS very very mildly during one night. I obviously don't want to take it long term but I feel so much more rested now and will have to see what to do next.
Sleep is my main problem because RLS is keeping me awake with my legs constantly having to be shaken to get rid of the uncomfortable feeling and secondly because the kicking is waking me up regularly. Sleep in itself before RLS wasn't a problem. I used to sleep well before this new RLS flare up. And crikey I do not throw drugs at it. I have resisted taking pregabalin for quite some time now despite having had it recommended in here and by my GP because I don't want to throw drugs at it.
But thanks for taking your time to respond. Some individuals don't seem to fit the RLS treatment box 100%.
Just to clarify, some authorities claim there are two types of RLS.
"Primary" is where the condition is inherited and can appear at any time, but often after something triggers it, e.g. pregnancy. The theory is the dysfunctions that lead to RLS are caused by Brain Iron Deficiency.
"Secondary" is where the condition is supposedly caused by some other condition. The common conditions that lead to secondary RLS are anaemia, diabetes, thyroid dysfunction, peripheral neuropathy, hypoxia and renal failure.
It may be that RLS is triggered by a virus in some cases, but it doesn't appear to be common.
Recent evidence suggests that even in people with secondary RLS an inherited susceptibility is necessary for the condition to occur.
Your condition certainly appears to tick the fierst four boxes for RLS and PLMD.
I can only suggest that if you find an antihistamine helps you sleep and you're happy with that then you carry on.
I'm not trying to discourage you in this, only asking you to consider that you might not have got to the bottom of the problem.
Some peoples RLS may vary from what's typical, but physiologically it can be explained why sedating antihistamines can make RLS worse. There's no explaining why they wouldn't. In additioin, even if they don't make RLS worse it seems impossible for sedating antihistamines to make RLS symptoms better.
I wonder then, are you finding that the antihistamine simply makes you sleep better so that you're not aware of symptoms OR are you finding that the symptoms improve so that you can sleep better.
If the latter then it would appear that there is some other factor affecting your situation otherwise I'd say it simply is not possible you have RLS.
Thanks Manerva.Peripheral neuropathy can be caused by Covid19.
After taking the Antihistamine RLS just doesn't happen. Before I started taking the antihistamine RLS used to start soon after I went to bed and got into a comfortable position, or when I tried to lie down with my legs stretched out to relax. Now I take the antihistamine about 30 min before I go to bed and it just doesn't appear. I can lie awake and read and the RLS just doesn't happen. Before that, when I read in bed before trying to sleep RLS started up already. So I think it is more a case of 'symptoms improve so that I can sleep'.
I know that this is unusual in here. I am glad it is helping me that way but now I need to decide what to do next. I don't want to take sedative antihistamine long term.
Yep. We will see where this leads. So far so good still. It tested it last night again and rested on the sofa before going to bed and I could feel my RLS starting up and my legs twitching. I then took the sedative antihistamine 30min before going to bed and again RLS didn't show up again and I slept well. And I am only taking half the recommended dose at the moment. There can be some augmentation but hopefully I can stay on half the dose.
I should add, that I expected some more people in here to have had a similar experience. I hadn't realised that most/all RLS sufferers get worse when taking sedative antihistamines.
I'd stick with what you're currently doing as long as it continues to work. That seems to be a basic principle of managing RLS, stick with it until if and when it stops working.
As far as the "science" goes it is known that low dopamine levels exacerbates RLS and it is known that sedating antihistamines lower dopamine levels.
Scuse the pun, but science isn't an exact - - - science. There are uncertainties.
Reality changes! If you look at scientific explanations of the nature of light over the last few centuries you will see an example of this. That is because earlier theories were incomplete.
One fundamental principle of modern particle physics is the "uncertainty" principle.
Your evidence of the effects of sedating antihistamines on RLS might mean that the accepted dopamine theory is incomplete.
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