Which free game is best for distracting RLS?

[Moonwalker1967]

Hi,

I tend to eat every night to get me away from RLS and piling on weight.

Anyone here, who plays a game to get away from RLS?

Thanks!

[Joolsg]

Are you on Pramipexole? Or Ropinirole? Both cause impulsive Control Disorder and overeating is a symptom. There have been legal cases in the UK against doctors who failed to warn patients about this before prescribing.Sounds like your RLS is not controlled at the moment so if you're on Pramipexole or Ropinirole it will be augmentation causing the worsening of symptoms.

Most people join this forum when augmentation hits.

Let us know your blood figures, all the meds you're taking, including OTC and hopefully you'll receive the help you need.

[Moonwalker1967 in reply to Joolsg]

Hi Jools, thanks for your response. On nothing apart from vitamin and iron. Just putting up with it until I can see a neurologist. Never been addicted to anything ever, as most of my (dead now) family members were. So, after years of Pramipexole did not get addicted as I am always watching myself on all the addiction prospects. Both my kids have also got RLS and PLMD plus ADHD. So, it's hereditary.Only eating in the middle of the night to get my mind off the RLS and now want a game to do/replace this. Never played a game as I usually find it boring. I have decided to wait until I see the neurologist. My Periodic limp movement disorders is very bad too and wakes me up. I sometimes hit myself and wake up from the slapping. Needs a proper look from neurologist to see if this is RLS only. Can only sleep alone, same for my kids.

If I had known before that this is hereditary, I would have not wanted kids. Right, finished complaining. One day, they will be able to help all of us!

[Joolsg in reply to Moonwalker1967]

You could ask your GP for full panel blood tests before you see the neurologist as raising serum ferritin above 100 resolves majority of cases.

If your serum ferritin is below 100 you could start taking ferrous bisglycinate every other night on an empty stomach and that will slowly raise levels. You could ask the neurologist to refer you for an Injectafer iron infusion.

As you also have IBS you may struggle to absorb iron which will make RLS even worse so do add a good probiotic like VSL or Symprove.

Have you seen a gastro enterologist about the IBS? You say you're not taking any other meds but you may need to ask for SIBO tests. Antibiotics can resolve SIBO and many people report a link with RLS and SIBO.

[Moonwalker1967 in reply to Joolsg]

Thanks, Jools! Some good advice there. Looking into it. It's a shame that I live in the UK now. Health system was much better when I lived in Germany. However RLS knowledge wasn't great neither. Hopefully will get a bit more quality in life soon and neurologist can help!

[Joolsg in reply to Moonwalker1967]

There are better treatments than dopamine agonists. After Ropinirole I was on pregabalin and Oxycontin. Didn't help much at all.I'm now doing really well on Buprenorphine.

I think you would definitely respond to iron infusions, especially if you can sort the IBS at the same time.

If iron infusions don't help, pregabalin alone might improve the RLS.

Hope the appointment goes well - don't let the neurologist push you into the Neupro patch though. As you augmented on Pramipexole, the same will happen quite quickly with the patch.

[Moonwalker1967 in reply to Joolsg]

Thanks, Jools! I have started on Restex slow release back then in Germany. Started when I was about 25 years old. Augmented on that as well and kept taking more and more. Then read up online rls re lacking Iron, B6 and B12. Made sense since I stopped eating meat age 7. Then stopped taking Restex eventually and took Iron, B6 and B12 which helped me to sleep through nearly every night. First night sleeping through was like winning a million dollars on the lottery. Unfortunately, things started to go downhill over the years again. I had Lyme borreliosis disease twice and also had my thyroid gland removed aged 42. Now having to take l- Thyroxine 100 mg daily.

In the UK I was given Pramipexole 0.88 mg for the past 10 years until augmentation struck.

Will definitely keep you updated when I get some feedback from the neurologist. Again, thanks so much for your help.

[SueJohnson in reply to Moonwalker1967]

Just to elaborate on what Joolsg has told you: Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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%. If your transferrin saturation is OK, then if your ferritin is less than 75 take iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Moonwalker1967 in reply to SueJohnson]

Thanks, Sue!

[Joolsg]

As for evening games. Try Wordle, Worldle, Nerdle, Cladder and Sudoku online. It distracted me if I was up with RLS.

[Madlegs1]

Also, there must be many interactive online games, which would be even more intensive than single player games.

I find Insight Timer to be helpful. It is more a meditation app, but has a lot of resources in it that are good.

Maybe not intensive enough for your situation.

Good luck.

[Birdland]

I like to do jigsaw puzzles on my iPad.

[glochessum]

I play solitaire and FreeCell.

[Munroist]

Good sleep practice says you shouldn’t use electronics and screens as the blue light makes it harder to sleep, although most of us are so tired it probably isn’t an issue and I’m occasionally woken by my phone falling on my face after I’ve fallen asleep reading. I find doing a bit of light housework helps as you move which reduces the RLS and you get stuff done like emptying the dishwasher which means you don’t have to do it in the day when you are short of time after sleeping in …

[Moonwalker1967]

I have a red light filter on my mobile. Thanks for the advice.

[ookla]

Candy Crush is my first choice to calm the symptoms, followed by Suddoku to calm my brain back down for sleep. They say any sort of problem solving game should work to engage/distract your brain and temporarily diffuse RLS symptoms.

[johannasuar]

I play a game on hooked on called Royal Match. I also play canasta and before I did solitaire too. There’s so many but these are my favorites, oh, BINGO too 😂