Another year of relief (Low-oxalate diet)

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
wilabozo
Posts: 12
Joined: Sun Jan 20, 2019 8:31 am

Re: Another year of relief

Post by wilabozo »

Here's my experience so far with a low oxalate diet. I'm into week 8. It's been a rollercoaster. The first week I had some surprising relief. I eased into the low oxalate diet as suggested and gradually eliminated all high/med oxalate food. Now I have a very strict diet of no processed food, almost all organic, and following carefully a standard low oxalate diet. Mostly my RLS is persisting, although it's different every night ranging from severe to zero. I have stopped all medication. I had one week of no symptoms and slept 8 hours each night which was a very strange experience but now back to very few hours every night.
Some interesting notes:
I am urinating often every night (10 times?), but when my RLS symptoms subside so does the urination frequency (2 or 3).
According to my Fitbit, my resting heart rate has slowed down a lot over the last 2 months.
My weight hasn't changed much but fat is way down and muscle up
My calves don't feel as inflamed
Less tendonitis
My RLS has definitely become less aggressive but still enough to keep me awake at night.
Something is changing in my body, so I'm going to keep going with the diet. I'm also reading as much as I can about oxalates and the impact they can have on your body.

XenMan
Posts: 61
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief

Post by XenMan »

I'm at day 10 with a dump every 3 days making me feel bad and legs burn. The RLS symptom triggers are moving up my calf with the massage ball rolling revealing much more relaxed calves.

I hate the carnivore diet, but just before a dump I feel the best I have physically and particularly mentally for a while. Just as a note, do not take any Omega 3 supplements as I found a paper that it reduces oxalates in the urine and possibly negatively impacting breaking them down and removal. My RLS went from inconvenient to devastating after accidentally boosting my dose higher due to a new measuring cap on fish oil. I couldn't work out why it made things worse. This could be the reason.

Hold in there wilabozo, you are on the right path. From my experiences of making my symptoms worse, it can take a while for tension that causes the symptoms to resolve. So if you remove your oxalate crystals now, the source of symptoms, it could still take a few weeks to heal, relax and not keep you awake at night.

Frunobulax
Posts: 287
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

wilabozo wrote:Here's my experience so far with a low oxalate diet. I'm into week 8. It's been a rollercoaster.
[...]

Something is changing in my body, so I'm going to keep going with the diet. I'm also reading as much as I can about oxalates and the impact they can have on your body.
There are different causes for RLS, even in individuals. If there are several causes for your RLS (that is, oxalates are one voice in a choir) then you may achieve relief but you won't be cured. But as long as you see a change in your condition you're probably on the right track.

I admit that I have a different approach to medication: I stick to my medication but will try to reduce it occasionally, maybe once a year and more often if there is a change that merits it. As I take oxycodone I'm not overly concerned about augmentation, but I'll still give it a few weeks to see if I adapt to the change. I did go down from 30mg a day to 25mg successfully last year, but any attempt to reduce it further was accompanied by shorter nights. I last tried it a month ago when I went on the low oxalate diet, I may try again in a couple of months just in case there are beneficial long term consequences.

Einszwei
Posts: 1
Joined: Wed Jun 24, 2020 2:41 pm

Re: Another year of relief

Post by Einszwei »

Hello everyone,
first of i would like to say a big thank you to notnowdad and everyone who is contributing to this thread. It was a great read and convinced me to try to limit my oxalate intake.

I have had mild symptoms of rls since childhood, but only during long road trips or very late at night. I didn't really care for those symptoms and brushed them aside as just a minor thing. For 4 month now things have gotten worse and I had daily symptoms and a lot of nights with little sleep. I adjusted my diet to focus on stopping inflammation in my body and supplemented with potassium to stop my cramping legs. I ate a lot of green vegetables and nuts during this time and the cramping legs got better. My rls symptoms got way worse on the other had. I now had symptoms during the day and a slow panic started to set in.

I am on a low oxalate diet for 8 days now and I am optimistic that things are going in the right direction. The first 2 days after starting the low oxalate diet i had absolutely no symptoms whatsoever and i was feeling great. Then the "oxalate dumping phase" started and i have minor symptoms at night, but i can fall asleep within 30 minutes i would say. I can sleep through the night and don't have to get up to go to the toilet, which was a common thing in the previous months.

Overall I am really grateful to everyone who contributed here and i have one proposal for this thread: please add something like "(low oxalate diet)" to the title. I almost didn't read this thread, because i thought of it as some kind of "miracle cure thing", which it ironically might be.

XenMan
Posts: 61
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief

Post by XenMan »

Einszwei wrote:
Thu Jun 25, 2020 9:02 am
I am on a low oxalate diet for 8 days now and I am optimistic that things are going in the right direction. The first 2 days after starting the low oxalate diet i had absolutely no symptoms whatsoever and i was feeling great. Then the "oxalate dumping phase" started and i have minor symptoms at night, but i can fall asleep within 30 minutes i would say.
I was also late to the party on oxalates, but got there eventually. I have now been on no oxalate to very low since early January and still dumping, but it is starting to slow down. RLS symptoms have become milder over the last month, easy to treat with physical methods, and I now get as much solid sleep as I want.

Please stick to this as most people don't try because they claim diet doesn't seem to impact them, or they don't see any quick improvements and give up. The essentials for dumping are citric acid, best from high dose Garcinia Cambogia, calcium citrate, magnesium other than chelate, and potassium chloride. If you go no oxalate and have heavy dumping, potassium bicarbonate helps as well.

RLS symptoms seem to be created by the movement of oxalates in and out of the calf muscles. So if you can balance that, it is good, but at some time they will come out during dumping. Despite the bad comments on continuous dumping by the low oxalate community, I see it as worthwhile to get the poison out of the body. As long as you take citrate to clear the kidneys, bicarbonate to displace the oxalates attaching in the body and calcium to bind, you will feel OK and have wonderfully cloudy urine to indicate that the oxalates are leaving. But you will have horrendous RLS for many months.

Frunobulax
Posts: 287
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

XenMan wrote:
Fri Jun 26, 2020 2:11 am
Please stick to this as most people don't try because they claim diet doesn't seem to impact them, or they don't see any quick improvements and give up. The essentials for dumping are citric acid, best from high dose Garcinia Cambogia, calcium citrate, magnesium other than chelate, and potassium chloride. If you go no oxalate and have heavy dumping, potassium bicarbonate helps as well.

RLS symptoms seem to be created by the movement of oxalates in and out of the calf muscles. So if you can balance that, it is good, but at some time they will come out during dumping. Despite the bad comments on continuous dumping by the low oxalate community, I see it as worthwhile to get the poison out of the body. As long as you take citrate to clear the kidneys, bicarbonate to displace the oxalates attaching in the body and calcium to bind, you will feel OK and have wonderfully cloudy urine to indicate that the oxalates are leaving. But you will have horrendous RLS for many months.
I agree. Even though I still think RLS has many possible causes. It may be like the sound of a band, and some instruments may be louder than others depending on the individual. I've seen some gradual improvements, but nothing as dramatic as some people describe here. So perhaps oxalates are not the loudest instrument for me.

I came up on this balance between potassium and salt in another context: https://www.virtahealth.com/blog/sodium ... l-function. If this is true, I guess sufficient salt intake should be on the list. I guess we're trained to eat low salt because salt regulation can be upset by high-carb diets and metabolic syndrome, in which case our kidneys can't eliminate excess salt. But apparently, if we go low carb, this can lead to different issues (kidneys having to conserve salt). I think for most of us "salt to taste" should be sufficient, just don't try to avoid salt.

Has anyone of you observed a connection between uric acid and (suspected) oxalate load? My uric acid was high for the last 10 years, even when I avoided everything that's supposed to raise it (meat first, fructose later). I remember some studies showing some correlation, but I don't think I've seen the theory tested that a low-oxalate diet might lower uric acid too. Would be interesting to know. I went low oxalate for the last 6 months or so, but didn't have any tests recently due to the COVID-19 pandemic.

XenMan
Posts: 61
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief

Post by XenMan »

Frunobulax wrote:
Fri Jun 26, 2020 7:34 am
Has anyone of you observed a connection between uric acid and (suspected) oxalate load?
No scientific papers or even speculation anywhere, no practical mechanism to link uric acid and oxalates.

Oxalates are very well studied in the area of kidney stones, and less so in autism.

Frunobulax
Posts: 287
Joined: Mon Jun 02, 2014 7:41 pm

Re: Another year of relief

Post by Frunobulax »

XenMan wrote:
Fri Jun 26, 2020 11:20 pm
No scientific papers or even speculation anywhere, no practical mechanism to link uric acid and oxalates.

Oxalates are very well studied in the area of kidney stones, and less so in autism.
There is this: https://pubmed.ncbi.nlm.nih.gov/19779706/, https://www.sciencedirect.com/science/a ... 4705606453.
More papers behind a paywall. As I said: Correlation, but we don't know if there is any causation.

XenMan
Posts: 61
Joined: Sun Aug 26, 2018 7:41 pm

Re: Another year of relief (Low-oxalate diet)

Post by XenMan »

There is an interesting overlap with gout, uric acid and oxalates. Anecdotal evidence that low oxates help gout, without a mechanism identified.

Could be similar to RLS, in that you may need a combination of factors for a 'critical mass' for symptoms.

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