Oxalates

[LoisTonya]

2am and studying the internet for what I've eaten today that might be high in oxalates. Information is mostly related to prevnting kidney stones, not rls. Seems as if Vit C is a culprit but we have to have it in conjunction with iron for rls. I also ate walnuts which were not listed under nuts high in oxalates but are. It's all so confusing It depends which site you look at.

[Joolsg]

Hi LoisTonya,

You can drive yourself crazy trying to find reasons for a bad night. Maybe your RLS is not diet related? There seem to be so many theories on diet and which ones work for RLS.

What meds are you on, if any? It may just be that you are going through a bad stage with the RLS and it isn't related to anything you've eaten.

Hope you get better night's sleep soon,

Jools

[LoisTonya in reply to Joolsg]

Hi Joolsg,

I'm on Ropinerole 1.25. The neurologist wants me to increase it. I know that each time I have increased it works but only for a while, then it's up again. I'm fighting not to increase and after limiting my oxalates I had 5 consecutive good nights so I'm pursuing this idea at the moment.

[Joolsg in reply to LoisTonya]

It could just be coincidence. I have tried diet for over 8 months now, and it really hasn't made much difference. Obviously there are triggers like coffee, chocolate and alcohol but, as most of us with severe RLS avoid those, they won't be the issue.

If the ropinirole has stopped working, I personally agree with you that you should not increase the dose. Sounds like augmentation to me.

Is your neurologist an RLS specialist or a general neurologist? My neurologist (for my MS) put me on amitryptiline when I said the ropinirole was not working anymore and he wanted me to take 4mg of extended release ropinirole. He was wrong on both fronts. I am now off the ropinirole.

Have a look at the posts on here relating to augmentation. You may have to come off the ropinirole very slowly and switch to another med to get any relief from the RLS.

[LoisTonya in reply to Joolsg]

Hi, Joolsg,

I have never liked coffee or alcohol but chocolate I love. Chocolate was clearly a trigger and, strangely, persimmon. Both are high in oxalates, that's why I 'm checking those. Ropinerole hasn't stopped working. Every time I increase the dose I get good nights for a while.

I don't rate the neurologist I saw. I did tell him I thought I might be suffering augmentation but he didn't reply. His advice is to keep increasing Ropinerole up to 4 mg. The GP goes along with his advice.

It seems I've got to work it out myself.

[Joolsg in reply to LoisTonya]

I think you've worked it out for yourself LoisTonya. If you mentioned augmentation and are reluctant to increase the dose, trust your instincts. Like Elisse, I think you have augmentation.

There are other meds which you could consider like tramadol, gabapentin or oxycontin. I'd suggest trying to see a neurologist who is up to date on current RLS research. I'm seeing the team at King's London on 24th March so if they're any good I'll report back.

Sadly you are right in that most of us with RLS have to work things out for ourselves with the help of others on this site who have been through the same thing.

Jools

[LoisTonya in reply to Joolsg]

I'm living in Cheltenham but could consider going to London

[Joolsg in reply to LoisTonya]

I asked for a referral to King's back in August 2016 and the appointment has only just come through after me calling several times to find out what was going on. They gave me a cancellation appointment so shows how busy they are.

I've managed to get off ropinirole with help and advice of the good peeps on this site, like Elisse and Pipps. I tried gabapentin for 6 months but it stopped working for me. I'm now on oxycontin and so far it's helping enormously.

I doubt the neurologists will be able to tell me anything I haven't already discovered from this site and the California RLS site run by Dr Buchfuhrer. I'm only going through with the appointment so the neurology team can approve the treatment I'm on for the future.

[Hidden]

LoisTonya, if you are geting relief every time you up your Ropinerole then it is augmentation. Ropinerole has stopped working at some time if you are increasing the dose. The advice by the RLS experts is to take no more than 1mgs. 2mgs at a push. The 4mgs is the "old" dosage and most doctors OR neuro's do not know that new dosage.

[LoisTonya]

Thank you, Elisse

[involuntarydancer]

The advice that you are getting from Elisse and JulesG regarding the likely problems with ropinerole is spot on. It really is worth resisting your neurologist's advice to increase ropinerole. The higher the dose the worse the withdrawal will be and it is highly likely that you will eventually have to withdraw from it because no matter how many times you increase the dose it will always need to be increased more.

I have read of someone who had great success on a low oxalate diet with an almost complete elimination of his symptoms but so far as I can recall he was not on dopamine agonist medication. As long as you remain on this medication, if you are augmented, the medication will cause you to have symptoms and it will not necessarily be clear whether your base line symptoms, ie those you would have if it were not for the augmentation, are responsive to a low oxalate diet. It is very sensible to pursue all possible options in finding the optimum outcome for your rls and for sure we are all different with many finding considerable relief when they make dietary changes. However, I would also agree with Julesg that there are many instances where diet does not have a particularly strong impact on symptoms - apart from the usual suspects listed above.

[LoisTonya in reply to involuntarydancer]

Thank you, Jools, Elisse and Pippins2, I am on holiday now and had a good night last night after alow oxalate day. When I get home I'll continue with a low oxolate diet and start slowly reducing the Ropinerole.

[Pippins2]

Yes i would say exactly the same as Elisse.Jools and involuntarydancer

Pipps

[involuntarydancer]

Enjoy your holiday - plenty of time to worry about meds on your return. Holidays are important. I would take extra tramadol if you have symptoms, get as much sleep as you can and have a good time.

[LoisTonya in reply to involuntarydancer]

Thank you, Involuntary dancer. Doing well on holiday, by being on my feet most of the day and getting good nights so far apparently due to low oxalates

[wsjulz]

I love this group. Thanks to this post I have been looking up low oxalates and can see a pattern that my RLS became noticeable and worse when I started eating masses of healthy foods and practically living on spinach and nuts, and whole grains, beans, pulses. I can see the correlation and am going to to cut these out and see if there's a difference.

[LoisTonya in reply to wsjulz]

Yes, I would never have found the connection without advice from this group. My nights are better, I have to work on my evenings now.

[wsjulz in reply to LoisTonya]

Are your evenings worse than your nights? I have been doing the 30 days of Yoga videos on YouTube before I go to bed. They are gentle and calming, and stretch your muscles.

[LoisTonya in reply to wsjulz]

Yes, the afternoon and evenings are worse. About anhour after taking Ropinerole my legs calm down and I can go to bed.

[smartpaws]

Join the fb group Trying Low Oxalates its brilliant and I totally cured my RLS with this diet after suffering for over 30yrs