Treating Central Nervous System Inflammation

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.
Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Treating Central Nervous System Inflammation

Post by Frunobulax »

Yankiwi wrote:
Thu Jun 04, 2020 8:32 pm
What are your scientific or medical qualifications other than being avid readers?
I'm a mathematician by trade. Driven by RLS and ME/CFS and little help from doctors, I started to dig deep into medical research about 6 years ago. Right now I'm even writing a book about nutrition, inflammation and autoimmune disease.
inflammatory_rls wrote:
Thu Jun 04, 2020 10:15 pm
Thank you for the advice, Frunobulax. By chance, do you have a source regarding vitamin D, B6, and B12 supplementation? I don't mean to suggest that you are incorrect, but I feel it would be prudent to consult a medical authority.
Not really. I take 5000 IU vitamin D, some high-dose K2 (along with D), 1000 micrograms B12 and some folate daily (not sure about the dose, it comes with the B12), 400mg biotin every other day (for the B12 too). B6 50mg per day. All of them are considered fairly safe, yet it's always good to start with a lower dose.

badnights
Moderator
Posts: 5761
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Treating Central Nervous System Inflammation

Post by badnights »

legsbestill wrote:Anecdotal evidence may be suspect but it is well (and usually very kindly) challenged in these settings and the most helpful information I have garnered - generally and in the treatment of my rls - has been on here. Either that or the impact of prolonged medication on my mental faculties makes the scrutiny of medical papers too much work for me now.
Oh both, definitely. For me, anyway.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

inflammatory_rls
Posts: 14
Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

I apologize for not updating you all sooner on how the supplements affected me. I have been much busier this past month than I expected.

About a month ago, I started taking a probiotic pill, 1,500mg of curcumin with piperine, 500mg of alpha lipoic acid, and 1,000mg of N-acetyl cysteine daily. I have been strict in remembering to take these supplements and don't think I missed any days.

When I started taking these supplements, my RLS symptoms were the worst they have ever been. I slept very poorly and it was difficult for me to sit or stand still for any length of time.

Starting around two or three weeks ago, I started to feel that my RLS was improving. Over the past two weeks, the improvement has been extraordinary - my RLS has almost completely abated. My legs barely bother me when initially falling asleep or after waking up in the middle of the night. I do not think this drastic improvement could be due to chance, and attribute it to the supplements.

I also suffer from generalized insomnia, which unfortunately does not seem to have improved at all. I still wake up often during the night and almost always feel tired in the morning no matter how many hours I am in bed.

I plan to continue taking this supplement regimen for at least another month, at which point I may cycle off for a bit. I don't want to take these supplements for longer than a couple months at a time because studies on them have not spanned time periods longer than that. I will keep you all updated on the apparent effects of the supplements on my RLS and insomnia.

XenMan
Posts: 80
Joined: Sun Aug 26, 2018 7:41 pm

Re: Treating Central Nervous System Inflammation

Post by XenMan »

Well done on your success and I hope it continues. Although I don’t agree with your principles, I would still encourage you to keep trying and especially pursuing any ideas you have. Just because you don’t get a response or even agreement, it doesn’t mean that your ideas aren’t read and considered.

Cycling supplements is an area of confusion for many which may have benefits, but is also often unnecessary. It is good to establish what is working by adding and removing, but there is suppression and normalisation by the body, and these are different. Suppression is mostly seen in hormones where the body will produce less if added externally. Normalisation is where you may feel different adding something, but over time the effect is less noticeable.

The supplements you are taking will not suppress anything, and there are no long term studies because there is no mechanism that warrants it. You will find that there are cases where these have been taken long term without issues, often in foods. But there will be no high dose long term studies because short term fails to identify safety concerns.

Another thing to consider is that it is a human trait to have tunnel vision on aspects of RLS. You will see this as many who attribute just one thing to cause RLS. If that works for you, it is often more luck than being knowledgeable. It is always advantageous on any subject to look at a contrarian view for the bigger picture to see if anything is missed. Whether it is iron, oxalates, dopamine, SIBO, venous insufficiency, brain injury, certain pharmaceuticals, operations or anything else on the long list of things documented to impact RLS, there is always a large population with these conditions or situations that don’t experience RLS.

Inflammation is experienced by a large percentage of the population without RLS, which could make it a contributor or a symptom. It is documented that people with SIBO who take antibiotics get relief from their RLS symptoms. This makes my brain hurt trying to work out what is going on, but highlights the complex interplay of the condition.

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Treating Central Nervous System Inflammation

Post by Frunobulax »

XenMan wrote:
Sat Jul 04, 2020 12:48 am
Another thing to consider is that it is a human trait to have tunnel vision on aspects of RLS. You will see this as many who attribute just one thing to cause RLS. If that works for you, it is often more luck than being knowledgeable. It is always advantageous on any subject to look at a contrarian view for the bigger picture to see if anything is missed. Whether it is iron, oxalates, dopamine, SIBO, venous insufficiency, brain injury, certain pharmaceuticals, operations or anything else on the long list of things documented to impact RLS, there is always a large population with these conditions or situations that don’t experience RLS.
I fully agree that we should never look at a symptom in isolation, and assume that a single one thing caused it. Example: If you have high oxalates, you'll most likely experience a variety of symptoms including RLS. OTOH, there may be other things contributing to RLS (iron deficiency and augmentation, for example) that may not immediately be linked to oxalates.

I guess chronic inflammation is a very loose term here. Many people have chronic inflammation (which I would define via increased inflammation markers in the blood, and/or possibly auto-antibodies). But a lot of them don't have RLS, and maybe many people with RLS don't have inflammation. So while treating the inflammation (if it's there) might relieve symptoms, the question must be pursued what caused the inflammation, and if something can be done about it.

@inflammatory_rls Good luck with your treatment, and let us know about further developments. I hope the improvement persists. (Unfortunately some RLS remedies tend to work for a short time only. Others are permanent.)

XenMan
Posts: 80
Joined: Sun Aug 26, 2018 7:41 pm

Re: Treating Central Nervous System Inflammation

Post by XenMan »

Frunobulax wrote:
Sun Jul 05, 2020 1:43 pm
I fully agree that we should never look at a symptom in isolation, and assume that a single one thing caused it.
I’m conflicted on single causes for RLS, or should I say in pursuing them. On one hand, my experiences show that it is a series of bad luck events that created my RLS and missing just one of them may have prevented my RLS experience entirely. But this also highlights that it really is a syndrome with conditions replacing ‘symptoms’ in the true definition.

However from my observations of posters, and not the number of posts in forums which tend to be dominated by a small number of the perpetually inflicted, the vast majority get relief or even a cure from one single action. Reddit has by far the greatest volume of individual posters, with up to 80 % taking something or doing something that sort out their RLS. So this demonstrates a real value in this action, overriding the actual ignorance; pragmatism over fact.

My biased view continues that RLS is similar to diabetes 1 and 2, in that if it was unknown that insulin was the issue, it would appear as a very individual condition with many different symptoms and treatments; as we do in RLS.

RLS is not going to be revealed as having an ‘insulin’ in its cause, but maybe up to 3 core components and everything else a symptom or shown to exacerbate symptoms. My guess is these would be genetics as a potential, the bodies response to irritants/inflammation and motor sensory responses.

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