Will coming off fluoxetine stop RLS?

[Tesslegs]

I’ve been on fluoxetine for 9 yrs and had RLS for the past 3. Sometimes it seems to effect arm and side of face as well as legs, either down one side or another. Usually starts around 9pm. I sit in cold bath 2-3 x nightly to numb legs enough to get some sleep. It often wakes me up and I have to sit in bath again. I hate this cycle.

I’ve been taking HRT for last 10 months cos also peri menopausal and hot restless legs can be part of that. HRT has not improved it though.

My ferritin was low (17) so I’ve been taking iron supplements with vit C - got it up to 57 and still taking the supplements to get closer to 100. Also take magnesium. No improvement tho.

Have tried withdrawing from fluoxetine v gradually and had 2 nights without RLS but then depression relapsed. Feel utterly trapped. If anyone on this forum has experience of coming off antidepressants and getting improvement in RLS that would give me hope to try again.

[Elffindoe]

Hello Tesslegs.

Sorry to hear of your dilemma.

Fluoxetine does not CAUSE RLS, it only makes it worse. That means that for somebody who has never had RLS, they won't get it by taking the drug.

Hence if you were to stop it completely then your RLS would improve with time, but it won't necessarily stop altogether. It's difficult to predict how severe your RLS would be without it.

It would be good if you could wean off the fluoxetine. The best way to wean off any drug is to keep taking regularly, but slowly reduce the dose.

It may also help if you can access some psychotherapy for your depression to help prevent its recurrence.

I'm sure you will get suggestoons about "RLS safe" antidepressants. Trazadone and nefazadone are often mentioned. These do not make RLS worse, however, they're not particularly good at relieving depression either.

Buproprion may be mentioned but it isn't available in the UK.

Your other option is to treat the RLS.

Of you are already receiving treatment for your RLS, you don't say, then it may need reviewing. If receiving no treatment then perhaps you need to consider starting.

You are right to take an oral iron supplement. There are things you can do, if not alteady doong them, to increase its effectiveness.

Take no more than 60mg once every other day, not daily.

Take it on the evening on an empty stomach.

Vitamin C at the same time is good.

Do NOT take magnesium at the same time.

As you may know avoid alcohol, sugar, nicotine and caffeine.

It's not ideal but taking a medication for RLS may be necessary to counteract any antidepressant.

If you're already taking one you may need to switch medications or review the dose.

[crumpetz]

Dear Tesslegs,

I went through exactly the same thing as you last year. In contrast to what Ellfindoe is saying, fluoexetine did definitely cause my RLS - I had no issues whatsoever before, until my fluoexetine dose got upped way too high (375-400mg / day). I experienced the same symptoms you are describing - it did start in both legs, but soon enough I'd feel it in my arm / neck / face, mostly unilaterally. I also had ferritin at 17. I got an iron infusion to raise that as oral supplements take longer to work, now the aim is staying above 100. We slowly replaced all of the meds (I was on lithium too, which can exacerbate it), and I tapered off fluoexetine over two months. I'm not in the UK, so my meds got swapped to buproprion (on top of trazodone I've been on for a decade; it puts me to sleep within an hour). It took months for the RLS symptoms to go away, but now I am ok 99% of the time, if I avoid triggers like caffeine. Whilst I had 'only' had the full on symptoms for 6months, they drove me suicidal and I ended up on 2months sick leave. After 6 months on buproprion we also changed that, because it was not making me stable depression wise. Currently I am on moclobemide, which I am afraid is also not available in the UK. I also started taking add on ketamine once a week and getting more stable.

tldr; What you're going through is excruciating. But, there are still options regarding antidepressants, it just needs a doctor thinking outside of the box. I also kept saying no to any antidepressant or antipsychotic they would propose, as I was terrified of the RLS symptoms coming back.

Hope you get better soon.

[Tesslegs in reply to crumpetz]

Dear crumpetz, thank you for understanding how excruciating this is- as I’m sure everyone on this forum does. It is not an exaggeration to say that RLS has made feel suicidal- or at least the relentlessly broken sleep has. My husband tries to understand but gets impatient with me because I am so impaired during the day and unable to participate in family life in the way I want to.

But moaning aside, it’s incredibly interesting and encouraging to hear your story- to think that level of improvement might be possible.

I tried bupropion in 2020 but my mood plummeted so went back on fluoxetine. Currently trying to wean off it but much more gradually based on what Ellfindoe says about the half life of fluoxetine.

I’m taking ferrous sulphate too to keep raising the ferritin. My GP refused to give me an iron infusion- think they are reluctant to do that in UK.

I’ll look into trazodone.

Thanks again for your post abs glad to hear you’ve found some relief.

[crumpetz in reply to Tesslegs]

I'm sorry to hear & I understand. As for buproprion - the dose is also important. Ironically worse when they upped it, got better on a lower dose. Everyone is different, but this particular pill might have this effect.

[Birdland]

Tesslegs, before I turned 40 I had only mild occasional RLS. Then I started taking fluoxetine which made my RLS worse but no unbearable. Later on in my early 50’s I started HRT. My RLS went through the roof! Became chronic. This was 16+ years ago. At that time I made an ignorant decision to ask my dr about ropinirole which I had seen advertised. He prescribed it for me and I took it willingly not knowing of the dangers. I see you do not take a DA drug and please keep it that way. Years later I learned about fluoxetine and HRT possibly making RLS worse so I stopped both. At that point I was augmenting so badly that stopping them did not help much. I will skip forward at this point and not get into my horrible withdrawal from ropinirole. When I finally withdrew I became extremely depressed. My RLS continues to be a thorn in my side so my personal decision has been not to go back on fluoxetine or HRT. I am currently undergoing rTMS for depression (lots of info on internet). I am half way through treatment and starting to see results. The treatment is pricey but my insurance pays a large part. Good luck to you.

[Tesslegs]

Goodness Birdland, it sounds like you’ve had a horrendous journey with both fluoxetine and HRT. I’m trying to reduce my HRT because I think it’s given me a new set of problems whilst not really doing anything to ameliorate my restless legs. To hear that your RLS got so much worse on HRT certainly gives me pause for thought. Sometimes I just want to come off everything but the withdrawals are so destabilising.I appreciate the warning about DAs. Other posts on this forum also make me wary about going down that path.

I am glad you have found something that is beginning to help with your depression. I feel my own mood would improve significantly if I could only get some sleep!

Thanks again for taking the time to reply 🙏

[Birdland in reply to Tesslegs]

I completely understand what you say about your mood would improve if you could get some sleep. I agree. When my sleep is better I feel less depressed. And I have a very difficult time getting even close to enough sleep due to RLS symptoms. So it doesn’t get us very far if we treat our depression without getting our RLS under control. It’s all about balancing what works for us and then trying to get the doctors to understand how RLS effects all aspects of our lives.