The elusive cure

[RLShelpforme]

Does anyone else feel like - “I have found the cure!” You can finally sleep and be normal for a week or two then Bam - your cure doesn’t work any more. This happens over and over again. It’s almost like your brain figures away around the drug, or food eliminations, or chiropractic treatment and you are back to ground zero again. So frustrating!!

[Madlegs1]

Yes- very frustrating.😥

[ChrisColumbus]

Indeed, but keep trying: some of us have got RLS symptoms under control, by medication and/or by identifying and avoiding triggers. There can be multiple factors involved, and it definitely becomes more difficult if one has spent time on a dopamine agonist - or if one has an underlying medical condition that triggers RLS - but even then it's still possible. Good luck with the fight!

[Joolsg]

I feel incredibly lucky that my RLS is completely non existent and has been since June 2021 when I started low dose Buprenorphine.I have accepted that RLS is a lifelong, incurable disease, like my MS, and will need lifelong medication to stop daily symptoms.

There are some on this site who have found the cause of their RLS. For some it's low iron. For others a dietary trigger or a missing supplement.

But most of us will have to rely on meds.

And as Dr Buchfuhrer says, 98% of us can be symptom free with the right doctor using the right tools.

[RLSAndy in reply to Joolsg]

🙏🏻🙏🏻

[Spouseofrls in reply to Joolsg]

I am taking my husband to see Dr Buchfuhrer in May and we are so hopeful! Thank you for the encouragement!

[HappyGreenBean]

When I was younger, yes! My RLS has worsened as I've gotten older. One thing that I have to say I can't do without is a weighted blanket...! On really mild days it's exactly this, I wake thinking 'ah, it's gone!'.

Now I'm just happy if I can get some sleep, some nights. Currently having to get another iron infusion as my iron is low, again. And, hoping this'll knock it back again.

[Elisse3]

Still looking for mine. 🙁. Worse than looking for that odd sock 🤷‍♀️

[Islay9]

Yes exactly this!!! I thought it was just me 😭

[RLSAndy]

100% you start to have regular like sleep and it reminds you of how life was then it kicks back in and takes you back into darkness.

[Simkin]

I think we have all been through this but as Joolsg says RLS is a lifetime affliction which, if possible, has to be "managed".I don't think anyone can say they are "cured" as yet . Perhaps in the future this will be possible.

I was so so despondent when, aged 72, I had run out of options but Joolsg encouraged me to try low dose buprenorphine and I have had nearly 2 years of no RLS. Bliss oh bliss!

I cannot say I am cured but I am keeping my fingers crossed that the buprenorphine continues to work.

[Seaview20]

I am a little jealous of those of you that have relief via buprenorphine, although pleased it helps you. When I raised it with my G.P surgery (UK), you would think I had asked for a license to kill! Absolutely no chance was the unanimous response. I do ok with Tramadol though. One 50mg tablet around 5.30 p.m will give me lovely peaceful legs all evening. But I often wake feeling headachey and nauseas in the night. It's still a trade off I am willing to make for the relief given.

[Tildabri]

Oh absolutely! I'm in a bad period now, waking and walking regularly throughout the night and then barely able to stay awake during the day. However, just a couple of weeks ago, I had a straight run of several nights with no RLS at all. What the magic is, I don't know!

RLS has worsened for me since retirement a year or so ago. When I was working, I used to get bad symptoms during the day, and in the evening. However, I almost never got RLS during the night. I used to love going to bed for a good snooze, but now I don't look forward to it at all, and during the night I just long for the morning 😒.

[grassgree]

Yes. Most of the literature on RLS mentions that it tends to come and go. I've never been able to correlate the bad times with dietary changes. I'm suspicious of a neurological feedback loop, because it gets worse when I get gimpy from a structural issue on my right leg. And stress is definitely a factor for me.

[Marzipana]

YES! I feel like that is the case. I've been on 10mg oxycodone since January, and I thought it was the answer. But for a few weeks, my RLS has been waking me up at night, and I am having daytime symptoms that I haven't had since I weaned off Ropinerole over 2 years ago!

[restlessstoz in reply to Marzipana]

Hi Marzipana, look at withdrawal effects of the oxycodone... it can cause RLS! When the levels drop in your blood, it causes symptoms. It may be that you need a longer acting opioid.

[Birdland]

Yes! Or even when you don't try something new but your RLS is better for a few nights. Then, back again! So frustrating.

[Lunareclipe]

I'm curious to know how many other people use magnesium supplements for RLS?

It really seems to help me allot!

Avoiding alcohol. Avoiding caffeine in the afternoon.

Exercising.

Switching meds that increase RLS ...

[RLShelpforme in reply to Lunareclipe]

I use magnesium supplements. Helps sometimes.

[WideBody]

Yes, for the most part my RLS is under control with Dipyridamole. On a bad night and I will take some ibuprofen or tylenol and I will be asleep in 45 minutes. I do have to monitor my iron and vitamin d status. The problem is that RLS can be caused by so many issues, it's hard to find the perfect answer for everyone.