How do you deal with RLS?

[Nlthomp]

Hello,

I’ve been dealing with RLS for at least ten years. At times, it keeps me up for hours. Currently I’m taking 3mg of Ropinirol at bedtime, and have also tried Mirapex. Some nights it works and other nights nothing helps. I’ve tried bathing, massage, walking, cold packs, etc. If anyone had advice as to how they deal with RLS, I’d love to hear it.

Thanks,

Nancy

[Madlegs1]

If you read back over the last few weeks of posts, you will find out about all the different strategies people use to try to overcome rls .

They deal with over medications ( augmentation), medications to avoid, foods to avoid, checking serum ferritin levels, and a whole host more.

Time well spent.😎

[Nlthomp in reply to Madlegs1]

Thanks so much

[Hidden]

Nancy, as Madlegs says there's a few possibilities for you. I'm not that knowledgeable about some of them but can give some tips.

The first thing is medication. I presume that it's RLS symptoms that prevent you getting to sleep. In which case it does sound as if the ropinirole isn't currently working. I wonder if the ropinirole (or mirapex) never really worked or if they used to work, but now don't. Loss of efficacy (i.e. stopping working) is a longer term consequence of taking a dopamine agonist (DA) for RLS.. Both ropinirole and pramipexole, (mirapex) are DAs.

It's possible that paradoxically the ropinirole, instead of helping your RLS is making it worse. This is also known as a consequence of taking a DA and is known as augmentation.

Whether you are suffering augmentation or not doesn't make a great deal.of difference because the ropinirole isn't working and if you were to increase the dose, it wouldn't really help and might make things worse. Switching to another DA e.g. mirapex or neupro wouldn't really help either.

In which case you may need to add in or switch to a non-DA medication. i.e start an alternative.

Next you could explore if there are any deficiencies you have. The main possibility is your iron stores are low as indicated by your blood ferritin level. For someone with RLS, ferritin is better if it is at least 50mcg/L and up to 50% of RLS sufferers are helped by raising their ferritin to 100mcg/L. This is done by iron replacement therapy.

If you are deficient in vitamin B12, or vitamin D, correcting any deficiency will improve RLS. Similarly if RLS is made worse by deficiencies in magnesium.or potassium.

Next, you can look if there are any aggravating factors or triggers making your RLS worse. This could be another medication such as an antidepressant, an antihistamine or an antacid. Alcohol can trigger RLS.and so can caffeine.

Next, there may be dietary triggers. Refined sugars can make RLS worse. You may be gluten or lactose intolerant.

There may be other dietary factors which you might read about in other posts on this site.

Lastly, it's possible that you have secondary RLS, this is where RLS symptoms are caused by some other condition. Diabetes or thyroid disease can cause RLS.

I hope this helps a little.

[Nlthomp in reply to Hidden]

Hi Minerva,

Thanks so much for all of these helpful suggestions. I’m due for an annual physical in February and will mention the possibility of certain deficiencies. I’ll be anxious to see what the bloodwork reveals.

I’ve been on Citalopram for 25-years and the RLS comes and goes. Funny, it seems to stick around for months at a time and happily, calms down for a short period.

I do drink wine often in the evening at dinner time. I guess that would be considered a trigger. No caffeine, though.

You mentioned the possibility of starting a non-DA medication. Do you know of any that I could mention to my physician?

It’s now 3:30am, again.... I’m going to get up for a bit.

Thanks again for the great tips

[Hidden in reply to Nlthomp]

Citalopram is an SSRI antidepressant and SSRIs are known to trigger RLS, I had mild RLS for decades, but after a course of Citalopram it really took off and I had to start taking medication.

Tricyclic antidepressants, e.g. Amitriptyline are the same.

The usual "first line" alternatives to dopamine agonists are Gabapentin or Pregabalin. You will also get some members suggesting a low dose opiate, but it may be hard to get a prescription for an opiate so try a gaba first.

[valerita1]

I’ve had RLS since I was 16 (mildly). Now I’m 88 & am very rarely withoutout it, hard & strong, I take 2 1mg ropinerole 3 times a day & 2 during the night. I get no more than 3 hrs sleep early hrs of the morning now ....the only cure is one gun & 1 bullet ...........I’ve never found another one.... Christo 1.

[Heatherlss in reply to valerita1]

Hi Valerita, sorry to hear that. Perhaps, you need to post this separately. You would receive some really handy advice. Low dose opiate( if you can get it, I know I can't) would go a long way towards relieving your symptoms.

[Nlthomp in reply to valerita1]

That sounds awful, valerita1. Did you get a chance to read Manerva’s suggestions? She listed possibilities I hadn’t thought of. I found it quite helpful. Best to you.