A new member hoping to learn from others

[Embroiderer]

Hello, I'm new to this forum. I've had RLS for most of my life but getting worse the last few years, especially since starting Sertraline a couple of months ago - I'm up every night pacing the floor and don't get to sleep before 2am usually. I also get that periodic leg movement thing while awake; that's been going on just the last few months. I've not really taken anything for RLS, but now getting fed up with it night after night, and am about to start magnesium malate. I also wondered about taking iron as my last ferritin level was 50ng/ml, and some of what I've read suggests that though this is in the normal range, people with RLS should aim for a higher level. It is almost always in my R leg, less often in both. I don't know why that should be.

[Mart7469]

Good morning

Like you I suffer from this complaint as to my two sisters. One of my sisters was one of the first to go on the trial of Ropinirole. I followed suit a few years later and it is a drug I would recommend. I am sure your doctor will prescribe

Start on 0.25mg. Unfortunately I am now up to 4 mg / day

However, it is a drug which is prescribed for Parkinson's Disease but it has very good results for RLS

[Embroiderer in reply to Mart7469]

Thanks Mart, like you I have a family history. I'm trying to put off prescription drugs as long as possible. Did you ever try magnesium?

[Heatherlss in reply to Embroiderer]

Hi Emroiderer, sad to hear that you too suffer from this disease. It just sucks big time.

However, since you've not started any medication yet. It could be good news.

Depending on whether you're in the UK or the US, people here could recommend you with some specialists.

Also, a word of caution from my side. Try avoiding Pramipexole and Ropinerole as your first line of treatment due to the augmentation (I wish someone had told me that before I begun my treatment last year). Pregabalin and Gabapentin are the first line medications these days.

[Embroiderer in reply to Heatherlss]

I'm in UK. Yes I'd rather avoid Ropinerole and for the moment would prefer non prescribed stuff. Would be interesting to know others' experience of Mg+.

[Heatherlss in reply to Mart7469]

Hi Mart, that is a very high dose of Ropinerole that you're on. How are your symptoms like ?

[Hidden]

Welcome

Firstly, Sertraline like all SSRI (Selective Serotonin Reuptake Inhibitor) antidepressants is known to exacerbate RLS.

That's most probably why your RLS is worse.

You should therefore consider stopping the Sertraline as soon as you can. It's unwise to replace it with any other SSRI antidepressant or any tricyclic antidepressant or mirtazepine. They are all known to make RLS worse.

There are a couple of antidepressants I believe are "RLS safe". These are Trazadone and Bupropion. Buproprion is only really available in the US.

Hopefully you have been offered some psychological therapy for your depression. It's not ideal.to take any antidepressant for more than a few months.

All being well, once you've withdrawn from Sertraline, your RLS will subside again.

I first suffered very severe RLS 11 years ago after taking an SSRI and started on RLS meds which took me on a journey I'd have rather not taken. I now wonder if that could have been avoided if I'd known about SSRIs and RLS, I never connected them.

[Embroiderer in reply to Hidden]

Yes, I realised belatedly that Sertraline exacerbates RLS, but hopefully I won't need to stay in it too much longer.

[YodaDog]

Hello - just to add that if you do come off the sertraline and you find you still suffer from RLS I think you are correct in trying non-prescription approaches first and, yes, it may be that your iron levels are too low. In that case you should have a full blood iron panel test done and again after taking an iron supplement for a decent period of time (at least 3 months). Ferrous sulphate (325mg) is one form, but there are others. Take every other day with 500mg Vit C (or a glass of orange juice) 2 hours after food and 1 hour before, the later in the day the better. The other supplements that can help (but you should only take these if you have had tests for them and they are found to be at low levels) are magnesium, and vitamins B12 and D. Good luck.

[Embroiderer in reply to YodaDog]

Thanks for your suggestions, YodaDog, that's helpful.

[involuntarydancer]

I wish I had done what you are doing and taken advice from existing sufferers as to non-prescription options before resorting to drugs. My suggestions would be:

Raise iron levels - yours sound low and increasing serum ferritin helps many sufferers. There is some research that suggests it is more helpful for those who have not used dopamine agonists (pramipexole, ropinerole, rotigotine etc) drugs;

Magnesium - for some people this is great taken as a supplement but for me it’s most effective if I wallow in a hot bath with Epsom salts (magnesium). This is particularly effective if I follow with a very cold shower directed into my legs and lower back for 3 or 4 minutes;

Yoga stretches - about 20 minutes in the hours before bedtime or when symptoms strike;

A cup of coffee (fully caffeinated) when symptoms strike;

Getting a reasonable amount of exercise during the day;

Not getting too much exercise during the day - physical exhaustion tends to induce symptoms;

Attempting to avoid becoming over-tired (this can be particularly difficult) - ironically, lack of sleep makes symptoms worse;

I find that if I go to bed after my normal bedtime, I am more likely to experience symptoms;

Avoiding alcohol - particularly red wine in my case;

Avoiding all benedryl containing substances;

Using otc codeine for breakthrough symptoms;

Trying all suggestions - eg cbd oil (available otc in chemists and health food shops) works for a sizeable minority though not for me.

There are numerous other recommendations littered through this forum.

Good luck.

[Embroiderer in reply to involuntarydancer]

Thanks for all your advice. Trying to get regular,but not excessive, exercise as you say, and stretches, tho not yoga, which all helps I think. Not a great evening bather but I tried Mg oil spray on my legs to no effect. Will speak to my GP re rechecking se ferritin and starting oral Fe.

[involuntarydancer in reply to Embroiderer]

Forgot to mention support stockings which can be helpful for milder symptoms. I sometimes put them on after I have applied magnesium spray to the legs and fondly believe that the combined effect is better than either remedy individually - but who knows? It is a very idiosyncratic condition.

[Embroiderer in reply to involuntarydancer]

Yes l had tried those without benefit. As you say it is idiosyncratic....

[Embroiderer]

Yes l had tried those without benefit. As you say it isidiosyncratic....