Restless Legs Syndrome (RLS) Discussion Board

This is a re-post from something I put up last week. I guess it got deleted by mistake.

It's an article I wrote about RLS being a blessing in disguise. Just another way to look
at it.

http://www.rlcure.com/blessing.html

This was great to read----but what it failed to do, after it scared me, was to tell me what to do about chronic inflammation. How do we cure that?
I've been told I have inflammation in my body as an aside from Doctors after some blood work -but noone has told me what to do about it.

There are other posts on here by dwimble - if you search on posts by his username, you'll find them. In at least one of them, I recall that he lists supplements you can use.

If doctors have told you that you have inflammation, have they attributed it to something? Inflammation can be linked to autoimmune diseases and may be linked to things such as heart disease - for example, read this by the American Heart Association: https://www.heart.org/HEARTORG/Conditio ... rticle.jsp

If it were me and my doctors found markers for inflammation, I'd want them to tell me what they are and what they indicate.

I have a lot of inflammation from the severe osteoarthritis. I know it contributes to my WED.

Especially it would be important to know if the blood markers were for acute or chronic inflammation. If acute, in most cases probably nothing should be done since the inflammation would simply be the body healing itself. If chronic, then you would be concerned, because it could be a persistant infection or irritant, or an auto-immune reaction.

PS I back-checked the database and no posts by dwimble have been removed except one that was double posted (the same message posted in two forums), which is not allowed by our rules (see link in the colored bar above, for Forum rules).

This is what dr B wrote in answer to a patient's question on inflammation and RLS:

Most experts do not believe that inflammation has any role in RLS (nor do anti-inflammatary dugs of any type help RLS)

Dr B is an expert and he treats a lot of RLS patients and I think we should value his opinion.

Corrie

I agree Corrie.... I value his opinions without hesitation.

Dr. B is an expert in prescribing drugs. I'll give him that.

Here's some information about RLS and inflammation and how you can get tested.

http://www.rlcure.com/tests-for-inflammation.html

I've talked to Dr B quite a bit. He is a true scientist. He believes in research. It can be limiting in some ways - he may not sense trends for example - but he always knows all the research and is good at evaluating what we know and suggesting ways to deal with it. He is also good at listening to patients and if they say things work, he believes you.

All research is not equal, unfortunately, and it can be hard to determine what is OK and what is not as a layperson. While I have a science background, I am not a scientist, nor do I have a medical background. I rely on people like Dr B, Dr Early, Dr Becker - and so on - to help me make sure I am not missing something.

I often send Dr B people's theories when they post them here, when they are medical in nature. He always thoughtfully responds to me and tells me why something may or may not have value. He usually points out where the person made an error in how they approached something or how the data/research they cited is faulty, things I would have missed.

If you think inflammation is the cause of RLS I think you should contact the researchers and hear the opinion of experts, people from the field who know about all the ins and outs of RLS. Like dr B for instance. If they think inflammation in relation to RLS should be researched it will happen and until then (IMO) we can only follow research that has been done. The future will tell if you are right or wrong but you have to understand that we have to wait what research shows.

Corrie

Corrie

I realized several years ago when I joined this discussion group that what "I think" doesn't matter at all to anyone on this board. Since then all I've done is gathered "scientific based evidence" to support my claim. What I've gathered is overwhelming, yet people still either nitpick or ignore it completely.

More and more studies will be coming out about the relationship between inflammation and RLS. However, the facts are already here.

I've listed 5 studies on my website:
http://www.rlcure.com/scientific-study- ... f-RLS.html

One of the differences is that science doesn't come to conclusions for a long time. It's very possible inflammation IS related in some way. In one of the studies you link to, is says, "The fact that the majority of highly RLS associated conditions are also associated with inflammatory/immune changes suggests the possibility that RLS may be mediated or affected through these mechanisms."

MAY be. POSSIBILITY. AFFECTED though.

These are the words the scientists are using. Many things appear to be related and with further research, we find that they are not. You may be write, but there truly is not enough data to prove it yet. That's all any of us are saying. A true scientist never is sure of anything. Even after there is a LOT of proof, a true scientist looks for what will disprove - you can never know anything with 100 percent certainty.

In my reading of what you write, you appear to believe there is no other possibility or explanation. Yet we know there are multiple types of WED and the researchers have long felt that they do not all respond the same and likely have different causes/structures. For example, maybe secondary WED, is related to inflammation, but not primary. It's the one that is related to all the inflammatory conditions. I'm not saying this is true - just that it's one possibility. But, maybe primary is not. I'd be interested in research that showed how many people with primary have the other conditions. It may not be any higher than the rest of the population - or maybe it is! But, we do not know as far as I know. That's the goal of the Foundation - to show people all the options and share ALL the research. That includes that inflammation may be part of it - and that it may not. Maybe it's a byproduct of the WED itself, for example, rather than it brings on WED. Unlikely, but possible.

We also know that there are people, such as me, who have explored inflammation (for other reasons) and found it had no effect at all on WED. I still take many anti-inflammatory supplements, such as curcumin, turmeric, boswelia, coenzyme Q10, omega 3s, vitamin E (all things noted to reduce inflammation), among other things related to inflammation for other reasons. In the years I've used such supplements and have eliminated foods such as dairy, soy, gluten, sugar, corn and other likely culprits, it simply didn't help my WED or PLMs. In all the tests I've had, I've never had markers of inflammation, either. One would expect that you'd see something show up in tests.

I would LOVE for diet/exercise/supplements/meditation and other things that I do and have done for years to work on my WED/PLM. It simply hasn't. Is it possible that there is something else I could have done and didn't? Sure. Is there something related to inflammation that we don't know yet that might help? Sure. But, it's certainly not as simple as following a typical anti-inflammatory diet and using supplements; if it were and if inflammation was highly related to all types of WED/PLM, I'd be WED/PLM free.

I think the "Correlation does not imply causation" addage fits in here someplace. Regardless, I hope that all research which potentially could lead to a better understanding and treatment of WED is given careful scientific consideration, examination, and funding.

It's true, science is painfully slow. But the truth already exists. You don't have to wait for them to confirm it in order to take an action.

New studies are coming out that demonstrates that "inflammation" is now considered to be a key component of RLS. And new studies are building upon this belief.

You can read studies here that are based on the belief that inflammation plays a major role in RLS
http://www.rlcure.com/scientific-study- ... f-RLS.html

For instance, here's a quote from a 2014 study:

"Dopamine, iron, and inflammatory pathways are considered important to the development of restless legs syndrome (RLS)."

In other words, inflammation has climbed the charts and now sits with the other two most popular theories of what causes inflammation. They have the facts, the data is undeniable - they're just not sure how it all fits together.

My belief is that they'll eventually find that it's the inflammation that is causing the iron and dopamine irregularities found in RLS sufferers.

Here's a bit more reading on that subject:

http://www.rlcure.com/how-inflammation- ... evels.html

http://www.rlcure.com/dopamine.html

the-artist wrote:This was great to read----but what it failed to do, after it scared me, was to tell me what to do about chronic inflammation. How do we cure that?
I've been told I have inflammation in my body as an aside from Doctors after some blood work -but noone has told me what to do about it.

the-artist

There is a tidal wave of information coming out about how to deal with chronic inflammation. I'm not being dramatic when I say that it has reached epidemic proportions.

You can do a Google search for "anti inflammatory diet" or "anti inflammatory lifestyle" and you'll find all sorts of helpful information.

I have a list of helpful vitamins, herbs and supplements listed somewhere on this forum.

You can view them here:
http://www.rlcure.com/daily-intake-for- ... drome.html