Bit of home research

[CAZ33]

Like many of you fellow sufferers on this forum sometimes I try to be positive and think that I will go online and research RLS and I pray for the day when we can all get some relief and have a 'normal' sleep pattern, if indeed that even exists. Anyway I was thinking one night when I was pacing downstairs, not able to sit, lie or stand still for long about some nights when the RLS is particularly bad and if I have managed to sleep for a while when I wake the first thing I feel are my legs (very often one or the other leg) and secondly how hungry I am. At that time of the night and when you are at your wits end, it is easy to go to the kitchen and try to get some comfort from food. For me it is usually a short, sharp fix like crisps - salty food. So one night I was researching parts of the brain responsible for sleep and found that the part is the brain for this is the HYPOTHALAMUS which is also responsible for hunger, thirst, mood, sex, emotions and hormones. Sometimes the hormones become a little mixed up and sleep deprivation can be another factor for this, and your body releases a hormone called Ghrelin. So looking into this and reading further the most people when feeling like this reach for salty or sugary food.

I have often been made to feel so guilty and lacking will power from doctors and nurses who suggest I snack on a stick of celery when I am feeling like this and I know by that statement that they think I am just making excuses for night bingeing.

So I was wondering if anyone knows anything about this side of RLS which can cause weight gain, giving us another problem to battle with. Also I am taking Ropinirole and I understand a side effect can be weight gain.

Any thoughts??

[Madlegs1]

There's no doubt that foods have a major influence on rls.

I find salt sets it off- but a snack of home mixed meusli helps tremendously.

You can read posts here on oxalic foods , various diets and food triggers- all affecting people in different ways.

Keep up the good work.

[CAZ33 in reply to Madlegs1]

Thanks Madlegs for your reply. It makes you think your are hungry but instead the brain is sending you the wrong message. It is sleep that we crave, not food. Makes our battle even harder when you read something like this doesn't it?

[Joolsg]

Hi Caz,

That's very interesting. I see from previous posts that you are on quite a high dose of ropinirole and that people have suggested you are augmenting. I have to agree with them. If you are up pacing in the night, the ropinirole has stopped working and is making your RLS worse. I'm sure you have been made aware of this before so won't go on.

Hope you find relief,

Jools

[Pam34]

I can relate to this! I find if I am unable to sleep and am pacing the house that my brain tells me that if I eat something (even if I know I'm not hungry) I will be able to sleep. Sometimes this works and I get another hour or so and then the whole procedure is repeated.

This also happens in the evening - grazing helps prevent my legs starting. Obviously this does nothing for my weight! I always assumed that as eating is generally a pleasure (or it is for me) it releases dopamine which is what our legs need (in very simple terms - someone may explain this a little better!). And the sweeter the food the greater the release.

This is a little bit more serious than just lack of willpower and just one more battle we have to contend with......

[involuntarydancer]

In the years I was on mirapexin (a dopamine agonist similar to ropinerole) I gained weight although for the most part it had my symptoms under control so I wasn't grazing at night. I just had problems controlling my urge for sweet stuff at all times. Since I stopped taking mirapexin a year ago my appetite has diminished substantially and my weight has been dropping consistently (although I did have a short period on pregabalin when I put on half a stone). I now think that dopamine agonists can have a subtle effect on appetite control and food cravings. I feel much more normal and like my old self since I stopped taking them even though I now take all sorts of other mind-bending meds to control my rls.

[maddymac66]

I am interested to know what "mind bending meds" have you replaced the Dopamine Agonists with.I too head to the kitchen looking for food ,even when I am not hungry, simply for something to distract me from the awful leg twitches. Consequently the resulting weight gain doesn't help me either physically or mentally.