Bit of advice needed please

[Sanmass]

Hi All, I have suffered from rl for many years now, the only prescription drug I have taken was Ropinerole, after using it for years symptoms got worse so I weaned myself off of them. As I’ve gotten older my symptoms seem to have gotten worse and I would value some advice what to take to help. I have read a lot of posts about some drugs which cause weight gain or gambling addictions etc, I would prefer not to go down that route, can anyone suggest something else. Thank you

[Madlegs1]

What are you on now?

Have you had your iron levels checked?

Do you take anything that might be triggering the RLS? Antihistamines, antidepressants, many food ingredients? Keeping a food diary can be useful.

All drugs will have side effects, that affect each individual differently.

A lot depends on the dosage.

Let us know what's going on.

[Sanmass in reply to Madlegs1]

Hi

I haven’t been taking anything for a few years now since I weaned off the Ropinerole apart from recently I was put on hrt but that hasn’t made any difference, good or bad. Haven’t had my iron level checked for several years, Not sure if they would do that just now. Ty

[Joolsg]

Ropinirole and Mirapex are the two most common dopamine agonists prescribed for RLS and both can cause Impulse Control Disorder,leading to gambling, hyper sexuality, over shopping and over eating.

As Madlegs has advised - check serum ferritin is above 100 & serum iron above 60 & ensure you’re not on meds which worsen RLS like anti depressants & anti histamines.

Other medications to consider are low dose opioids ( safe & effective if no history of drug abuse) or alpha2delta ligands such as Gabapentin or pregabalin.

RLS is progressive so it does get worse over time but it can be treated effectively for most people.

[Sanmass in reply to Joolsg]

Hi

I have consultation with my GP later on this week, I will speak to him about opioids as he is keen to help. Ty

[kelirock]

Hello, I was in the same position as you not so long ago. I managed to persuade my GP to trial me on Pregabalin which he did, I started on a dose of 25mg and have gradually built the dose up to 175mg daily. This, for me has been very successful. I do still occasionally have some breakthrough symptoms of RLS which I treat with CBD oil, one drop morning and one drop evenings, if this doesn't settle the symptoms properly I take 2 puffs of cannabis and this, again for me, is very successful. Pregabalin is one of the medications that has the warning the drug could cause weight gain or impulsive behaviours. This medication has not cause these problems for me. Pregabalin is worth a try.

[Sanmass in reply to kelirock]

Hi

I have been reading up on Pregabalin on this site, my biggest fear would be the side effects, can I ask what strength of CBD oil you take?, I did try that but didn’t notice much difference. Ty

[kelirock in reply to Sanmass]

written on the bottle is 'Essential Extract, full spectrum Hemp extract' on the back of the bottle is a lot of very small writing that I cannot read due to having poor eye sight. The information I received from the company who sold it to me stated to take one or two drops when necessary. I take it twice daily. Hope this assists you. Regards

[Sanmass in reply to kelirock]

Thank you, that helps greatly 😊

[Eryl]

You could try the dietary remedy. RLS can be caused by inflammation in the nerves and one of the causes of that can be the food that you're eating. If you only get occasional attacks, then keeping a food diary can help. Look for a pattern as to what you've eaten around half an hour to an hour before you notice an attack. It can be difficult if you get RLS regularly in the evenings or when you've just gone to bed as it could be the accumulation of a number of small things during the day. One useful thing to note is that your RLS could be due to high insulin levels in the blood due to eating refined carbohydrates like sugar, bread or fruit juice. Other possibilities are sensitivity to artificial food preservatives, especially sorbates (eg E202), a nightshade intolerance (aubergines, tomatoes, potatoes, chillis), mould toxicity, or heavy metal poisoning.

[Sanmass in reply to Eryl]

Hi

I have read several of the posts regarding diet and I do follow a low fat diet with lots of fruit/veg etc, I think a food diary is a good idea for me to start but my rl only bother me in evening/bedtime. Ty

[Eryl in reply to Sanmass]

That's where you've got it wrong. The low fat idea was from a misinterpretation of data from a 1950s study, and has since been proved wrong. Most people end up eating around 15% protein, so the rest must be divided between fats and carbs, so if you lower the proportion of fats, then the proportion of carbs must go up. All carbs break down into glucose of fructose (which gets processed by the liver to produce glucose) so eating a high carb diet leads to high levels of glucose (blood sugar). High blood sugar leads to high insulin levels which drives the cells to consume the glucose to keep the levels within the bounds of normal. This consumption is what causes the inflammation which leads to rls.

[Sanmass in reply to Eryl]

Oh must look into this further but I must admit I don’t eat a lot of carbs either. Ty

[Batlings]

Hi - I also suffered from RLS for many decades (in fact I didn't know it was called restless leg syndrome until fairly recently). Mine came on late in the evening and got progressively worse at night. I read several sources which suggested magnesium deficiency could, in part, be a cause of RLS and started to take magnesium supplements. These helped a lot, but didn't get rid of my RLS completely (I took calcium/magnesium capsules from a company called Terra Nova as they do not contain fillers or binders).

More recently, I read that monocalcium phosphate (found in baking powder and self raising flour) blocks the absorption of magnesium. From what I read, it appears that the consumption of most phosphates (....which are commonly found in processed foods) depletes magnesium in our body. For the past few weeks I have kept myself well hydrated and eaten a diet rich in magnesium (mainly fruit, veg, nuts, beans and loads of pumpkin seeds) and have completely cut out cakes and processed foods. I do eat fish and beef, so haven't opted for a vegetarian diet. So far, since changing my diet, my RLS has completely cleared up. I wish I'd done this years ago!

I hope this helps.

[Graham3196 in reply to Batlings]

Sorry I typed my message in the wrong place. It was meant for Scam49

[Madlegs1 in reply to Batlings]

Thanks for that, Batlings. I've always known rising agents were a particular trigger for me ,but never knew exactly why!

Fantastic what we find out on this site!🤪😎

[Sanmass in reply to Batlings]

Hi

That’s great you now have no symptoms, I have tried magnesium tablets in the past but never noticed any difference, I am going to do a food diary and stay away from processed food, hopefully some of these changes will help even a small bit. Ty

[joker826 in reply to Batlings]

Congratulations

[Graham3196]

I have sent some information by private message.

[Graham3196]

I have sent some information by private message.

[Batlings]

Hello again - I forgot to mention in my earlier post that I do not take any medication for RLS and that I've gone gluten free as well. I haven't been tested for gluten intolerance, but my change of diet is working so far.

[Biscuitface]

Just seen your post from a year ago. Did your new diet help your RLS?

[Sanmass in reply to Biscuitface]

Hi, I have tried cutting out several food groups and it didn’t seem to change my symptoms very much. I find what works best for me, I have cut my carb intake and in the evening I try and stay away from sugar, it seems to help. The worst trigger I have is stress or being too hot.

[Biscuitface]

Ah. Thankyou for letting me know .