Ongoing RLS sufferer

[Debsamuels]

I have been a sufferer of RLS for ten years and more and currently on increasing dose of Ropinirole which has been more successful than pramixepole and gabapentin for me.

I have noticed if I get ill with cold/flu the RLS disappears. Not a good exchange though but it helps me to sleep through illness. Also my RLS is worsened by having cold legs/feet and in the morning., when my legs have found their preferred warmth symptoms decrease.

I am interested to look at compression therapy. so will give it a go. As a R Nurse my patients have used compression garments for longstanding leg ulcers but you do have to be careful if there is any Peripheral vascular disease when using these so circulation is not compromised.

I hate taking medication and read with interest the benefits of smoking a joint when the going is so tough, no sleep for nights and being at your wits end. Not tried yet and understandably so due to my occupation

Debbie

[Madlegs1]

Hi Debbie. Welcome to this forum.

If you have been on Prampexol, and now Ropinerol, and have to increase the dose to get relief, then it is highly likely that you are experiencing" augmentation".

This is where the rls occurs earlier in the day and you need to increase the dose to get comfort. It is a slippery slope, down which you do not want to go.

Please research it.

It will be pinned on this page somewhere.

All the best.

[Debsamuels in reply to Madlegs1]

Hi Thanks for your reply. I am aware of augmentation and have witnessed it recently which is concerning. I take 1mg ropinirole at lunchtime and 1mg at bedtime and occasionally have to increase the nighttime dose by 0.5mgs as per Neurologist advice. Scary and I hate taking these tablets. I have had ferritin blood tests and on ferrous fumurate but these too have their little side effects. I hope one day we will be able to manage this awful sleep and day disorder. I do wonder whether hormonal fluctuations have a lot to do with RLS symptoms. Ropinirole makes me tired and anxious at the same time.

Debbie

[involuntarydancer]

The phenomenon of reduced symptoms when suffering a viral infection has been mentioned previously and is one of the many imponderables of this condition.

There are quite a few posts about the benefits of compression stockings when symptoms strike. I find them helpful if symptoms not too severe - particularly if used in conjunction with a magnesium rub applied to legs before donning the stockings (cheaply concocted by dissolving Epsom salts in water).

In your shoes I would treat the advice of your neurologist with circumspection in regard to ropinerole dose. This forum is littered with accounts of people who, encouraged by their neurologists, took increased doses of dopamine agonists only to pay a horrendous price later on. 1mg daily if ropinerole is currently considered the max dose by rls experts. It would be better to use a supplementary treatment (alpha2delta ligand, mild opioid and/or lifestyle changes) to cope with breakthrough symptoms if 1mg is insufficient and ultimately look at discontinuing the d/a at least for a while. Rls often benefits from being treated by a number of different drugs, each at a low dose.

So far as I can discern from anecdotal accounts, Cannabis is helpful only for a minority of sufferers (though it is useful for inducing sleep for those suffering from rls-related opioid induced ‘alerting’). If looking at outlawed options, Kratom is much more reliable against rls symptoms.

[omtenaj]

You have my sympathy as a fellow sufferer. I have just had to come off 2mg patches of Rotigitone because I knew from what I had read many times over that increasing the dose of dopamine agonists is not a good Idea. I have to say that withdrawal is horrendous particularly after cutting down and then taking the final dose. Gabapentin wasn't working at all as I increased the dose after I got past half a patch but I'm managing now after being prescribed a supplementary Opiod, which for me is co-codamol. I take the Gabapentin before I go to bed and the co-codamol once the symptoms start to become unbearable and i mange then to get back to sleep. Im hoping Gabapentin will start to kick in but if it doesn't I will start to look for alternative combinations. One thing I do know is I will never take another dopamine agonist. could not face smoking canabais but if I got desperate I would try putting it in buns just in case I was one of the lucky ones that it did work for. I once read a post by a lady who said this worked for her and she made a batch and froze them. Keep Strong x