Page 2 of 2

Freedom of speech for all!

Posted: Thu Aug 15, 2013 3:38 pm
by EeFall
Proverbs 26:4

Re: admins in the "Natural" section should not be taking med

Posted: Thu Aug 15, 2013 3:39 pm
by rthom
Two things,
1. I was of the impression that you are saying the RLS is or is caused by inflammation, But the studies you show talk of the inflammation being a part of them not the causes of them. (Still an important link but not the same when it comes to prevention verses healing).

2. Back to the helping of others thing, I'm still not sure why you don't want to prove the science (like with the WED Foundation grants or something) in order to help. Are you of the opinion that they will mess with the data?

Re: Freedom of speech for all!

Posted: Thu Aug 15, 2013 3:44 pm
by rthom
EeFall wrote: If it is not known what causes RLS then there certainly can be no cure for it. If there were a cure for all aspects of what we call RLS/WED then this board would not need to exist.

I think this is part of the problem. There are those who feel RLS suffers do not or will not help themselves--because if they did they would stand to loose a lot. For instance the companionship of this board or the drugs or the pity, because it would cease to be needed.

Re: admins in the "Natural" section should not be taking med

Posted: Thu Aug 15, 2013 4:28 pm
by dwimble

I've approached They have shown no interest at all.

Others have said I should be yelling about this from the rooftops. Well, I have been, for four years. It's a tough crowd.

If you have any ideas, I'm open to them.

RLS is caused by inflammation, or at least, inflammation is a primary factor.

Let's put it this way, if you didn't have any inflammation in your body, you wouldn't have RLS.

That's why the anti-inflammatory approach works. The less you contribute to the already existing inflammation, the better you get. Your body begins to heal.

The difficult part in all of this is finding out, through your own experimentation, what is causing the inflammation in your body to exist.

There are some obvious triggers, but there are many non obvious triggers, such as a food intolerance of some type.

Re: admins in the "Natural" section should not be taking med

Posted: Thu Aug 15, 2013 4:45 pm
by jul2873
Dwimble, I can see that you admit no possibility of error in your understanding of RLS, and you are certainly entitled to your view. My guess is that nothing will dissuade you. The fact that many people with severe RLS, myself included, test very low for inflammation--you will discount that. That fact that many people with RLS have tried every anti-inflammatory technique in the book and still have severe RLS--won't convince you. I understand that.

But think about this for a minute. I'm afraid you cause added suffering in people who are already suffering enough with this dreadful disease. Now they're feeling guilty--maybe if they stopped eating anything that could remotely cause inflammation they would get better. Maybe these medications that do seem to be enabling them to have some kind of life are really hurting them, and they should go off them.

Since even the top doctors in this field do not know what the cause of RLS/WED is, I don't think it's useful, or kind, to insist that you do. I don't know if you're a doctor or not, but I always liked the motto: First cause no harm.

Re: admins in the "Natural" section should not be taking med

Posted: Thu Aug 15, 2013 4:46 pm
by crl363
I believe this can all be broken down to censorship. ” There shouldn't be admins chiming in with their opinion if those admins are taking meds, whether it be for RLS, depression, sleep, whatever”. People have a right to their opinion regardless of what topic, where it is posted, and what it involves. To tell people they can’t comment on something because they don’t belong to this group or that medication is censorship. The categories are a way of making discussions easier to locate or organize. They certainly are not meant to segregate people from posting their ideas or comments respectively.

Re: admins in the "Natural" section should not be taking med

Posted: Thu Aug 15, 2013 4:52 pm
by rthom
Well if I were you I'd just raise money and do it privately. That is in essence what the rlsf did. Some people sitting around a table worked at something they are passionate about and now they are trying to prove it. In your case given all the good responses from now healthy folks, it should be far easier to do, especially since alot of your followers are medical professionals--they understand the need and have more funds available. Good luck with it.

Re: admins in the "Natural" section should not be taking med

Posted: Fri Aug 16, 2013 7:15 pm
by Moderators
The moderators are required to follow the policy shown below.

The moderators of this Disussion Board hope that all WED/RLS sufferers find a way to manage and treat their disease that is consistent with their personal beliefs and needs. We believe, consistent with current research, that no one treatment is appropriate for every sufferer. Because there is still much research to do and past research is limited in many ways, we also realize that some people may choose treatments on faith, rather than science. We are hopeful that the scientific community learns more very soon so that we can better treat or resolve the cause, instead of treating the symptoms.

Until that time, each of us must make decisions about our treatment. Just as it is perfectly appropriate to choose alternative or non-pharma methods, it's equally appropriate to choose pharmaceutical treatments or a combination of both, given the circumstances, your medical condition, your beliefs, and what your medical provider(if any) feels is best for you. We recognize how difficult it can be to make treatment decisions. We ask that everyone respect the decisions our members make and share, even if those decisions are different from yours. We also ask that our members demonstrate respect and tolerance in their posts. Posts that are not respectful will be removed.