Rls started in afternoon

[Ephemera]

Ok so one more question. We are getting some sleep now but RLS is starting in the afternoon which it did not do before. Any ideas out there please??

[Nothing_but_books]

I'm just at the stage of making connections that may or may not mean anything.

If I collapse in bed early and lie on my side an hour or two before I get up and brush my teeth etc, I always lose a whole night of sleep to RLS.

If I go to bed on time, without intention to get up again, the RLS doesn't often happen.

I'm thinking back trouble may somehow be triggering this. Maybe I shouldn't stay lying on my side when I'm awake in bed.

Don't really know anything so far.

[SueJohnson in reply to Nothing_but_books]

I have no idea about the question you are asking but obviously there is a simple solution. Go to bed on time, without the intention to get up again. However since your RLS doesn't often happen I may be able to help with that. 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. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins 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 some advice.

Also 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, listening to music, meditation 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.

[Madlegs1]

That is usually how augmentation starts.

What medication are you on?

I've just read your last post. If you read my reply you will understand. I post a copy of the main point.

"Most people taking any amount of opioid for just part of the 24 hours period, usually experience withdrawal after the efficacy wears off.

Ideally you would need an equal amount spread out over the 24 hr period."

I rest my case.😥

Ps-- it is better to continue within the same post for better continuity. 💚

[Ephemera in reply to Madlegs1]

Thank you will remember to put on same post next time. Trouble is husband is worried that if he lowers night dose of Oxy to spread over 24 hrs he will not sleep again.

[Madlegs1 in reply to Ephemera]

Opioids must be spread over 24 hrs. Otherwise there is a major risk of withdrawal.Your doctor should appreciate that.

It should be possible to equalise out the dose.

Personally,I take Oxycontin 10mg twice a day. And have to add Oxynorm 5mg to make up for the fact that the Contin doesn't last the full 12 hours.

[pennygates in reply to Madlegs1]

Hi,Is oxynorm a slow release opioid?

I'm taking 6x5mg oxynorm short release (shortec). I take 1 every four hours. After 3 hours the rls creeps back, and is hard to settle. It's like you are always waiting for your next dose, and RL is not under control. Its very tiring, and you have to try to snatch a short sleep, but rl is always coming back before the next dose, and sometimes doesn't settle at all.

[Madlegs1 in reply to pennygates]

Oxynorm is rapid release. 15 mins.I take 5mg and that has sometimes lasted me 7 hours, although only meant to last 6.

I think that is Shortec in your part of the world.

You should not be having the experience that you are.

Do you keep a food diary to check for triggers?

Read up some of Sue Johnson answers to many posts here about possible antagonist substances for triggering RLS.

For instance -- I had the most horrific night recently- absolutely suicidal --.

I eventually traced it back to a biscuit I had eaten. It was a chocolate covered mint flavoured biscuit - "Arctic bar"

Full of rising agents and possibly whatever else.

Lesson learnt🥶

[pennygates in reply to Madlegs1]

I'm afraid I haven't paid enough attention to food triggers. I avoid ready meals, take-aways, and processed food. I eat healthily, mostly vegetarian freshly cooked and fish. Now and again some chicken to boost protein.My big weakness is chocolate and biscuits, usually ginger snaps or digestive biscuits. I'm addicted to sugar, and struggle with it. I also eat wholemeal bread, but not much. Since last week I have started to slowly reduce pramipexole due to augmentation. This is having an impact .

Thanks for the reminder about food triggers.

[Madlegs1 in reply to pennygates]

Chocolate (cocoa) will cause insomnia, but not RLS - despite everyone saying so. They are rong!!😝

I find biscuits absolutely deadly, because of the rising agents.

Sugar is also a baddie as you know. But artificial sweeteners are worse. Even Stevia.

You have to be forensic in your analysis of food.

Take fish-- that should be good, eh- ok? No - salmon - the king of fish and good in oils etc. often has colouring added ,which is poisen to me!!!!😥

Yeast breads are ok, but not those made with baking soda.

I could go on , but you get the picture.

I take a magnifying glass with me to the supermarket.

Nuff sed!

Good luck.

[Eryl in reply to Madlegs1]

The coaco will not cause RLS but shen made into choclate it often cpmes with a lot of added sugar which is what caisrs RLS

[Eryl]

The reason that RLS started in the afternoon is what you had or breakast or lunch.

[pennygates in reply to Eryl]

My diet needs looking at more closely. I usually eat porridge for breakfast, but snack on biscuits throughout the day. My diet is healthy otherwise, mostly freshly cooked vegetarian and fish. The big problem is sugar, I get a slump and feel the need for sugar throughout the day. I seem to sabotage my best efforts to eat healthily, because of the sugar craving. I'm afraid I have overlooked the possibility (probably blocked it out) that these foods are causing me problems. This will be difficult for me, but if giving them up might help my RL, then I know what I have to do. Thanks.

[Eryl in reply to pennygates]

Snacking on biscuits is your biggest problem because they contain a lot of refined sugar and most are made with highly refined white flour which is easily metabolised into sugar by your saliva. The resulting large spike in blood sugar will cause a large release of insulin, more than is actually required which is why you then get a slump in blood sugar.

[SueJohnson in reply to pennygates]

Keep a food diary and list how your RLS is next to it.

[pennygates in reply to SueJohnson]

Yes Sue, it's time to do that

[Joolsg]

I have to agree with Madlegs. The oxycodone, taken only at night is probably causing mini opioid withdrawals in the day. That explains the afternoon RLS.Oxy is notorious for having a shorter life than claimed by the manufacturer.

So, take every 4/6 hours throughout the day or ask for Targinact 5mg and take 4 times a day.

It's a complete nightmare trying to find the right drugs and the right timing! Especially as you and your husband both know that Buprenorphine worked and covered his RLS, but the NHS neurologist won't prescribe it.

Have you given further thought to taking legal action against the neurologist /doctors who caused all thid in the first place? I think you should. It is so appalling that the misdiagnosis and poor treatment triggered his severe RLS and they're now leaving him with inadequate and poor treatment.

[johannasuar]

me too, I don’t know why. Mine not so early but at around 4PM. I took my meds at 5:30 to be ahead of the RLS, but now for the past two weeks it’s been starting too early. I hope someone has info about this. I’ve been on Tramadol for about 12 years and nothing else, it’s been loyal to me and I’m still on only 100 mg this whole time.

[SueJohnson in reply to johannasuar]

Tramadol is the only one that causes augmentation and that may be what you are suffering.

[Searchinforpeace]

For me it starts as soon as I get into a comfortable position- day or night. Soon as the sun sets my knees will feel sore- the soles of my feet get uncomfortably hot and it will take me hours to get into a semi comfortable position for a bit of sleep to start setting in. I’ve recently noticed the irritability of it all has been causing my to clench all night with some teeth grinding. It seems pretty bad that my jaw hurts and cracks really loud when I open my mouth. I wake incredibly sore and irritable. I have no doubt that it’s the reason that I have been on the verge of a mental breakdown. Anxiety attacks have become so frequent, I may need to find another way to cope. I have started taking Tylenol PM for the past week.

[Madlegs1 in reply to Searchinforpeace]

This sounds more like peripheral neuropathy than RLS.

[Searchinforpeace in reply to Madlegs1]

I should have specified- this was triggered by antidepressant medication.

[Madlegs1 in reply to Searchinforpeace]

Fair enough.

Have me perplexed!!🤔💚

[Olivebranch1]

if your afternoons have changed to a more relaxed state, then that could be the trigger I know for me RLS starts when I am relaxing

Long car travel is the worst!