RLS.org deleted the posting. RLS.uk removed the posting and banned me from their community.
This brings up an issue I have with the admins of these discussion boards. They are always very pro-med and not open in the least to any sort of natural remedy.
A few years ago, the admin of the RLS.or.au community board actually said that “Sifrol was God’s gift to humankind”. The sad part is, she wasn’t kidding. She actually felt that she had found her Nirvanna.
The sad irony is that she prevented me from posting on their website because I was promoting the benefits of natural RLS remedies.
feeling sick (nausea)
confusion or hallucinations (seeing, feeling or hearing things that are not there)
light-headedness on standing up, especially when getting up from a sitting or lying position (hypotension)
swelling of hands, ankles or feet (peripheral oedema)
uncontrollable twitching, jerking or writhing movements (dyskinesia)
difficulty sleeping or unusual dreams
weight gain or loss
loss or gain of sexual drive
Some of these side effects are more common at the start of treatment and lessen or disappear with time. Tell your doctor immediately if you or your family notice any of the following side effects:
loss of memory (amnesia)
signs of allergy such as rash or hives on the skin; swelling of the face, lips, tongue or other parts of the body; wheezing or difficulty breathing
excessive sleepiness or sudden onset of sleep during normal daily activities
compulsive behaviour such as gambling, hypersexuality, shopping, eating, medication use and repetitive purposeless activities
mental illness causing severe suspiciousness (paranoia)
shortness of breath or tightness in the chest (dyspnoea)
shortness of breath, swelling of the feet or legs due to fluid build-up (heart failure)
Tell your doctor if you notice anything else that is making you feel unwell. Other side effects not listed above may also occur in some people.”
How did this person become the admin of a community that is trying to get well?
I don’t like the fact that she blocked my posts, but what bothers me even more is that she is promoting this horrendous drug to others as the best option available.
Another thing that irritates me about the overall “unwellness” of these online communities is that the admins are usually quick to say to anyone that finds some sort of relief “that’s great that you found a remedy … I hope that your success continues. Remember there are many paths and many solutions.”
What kind of support is this? It makes no sense?
This is especially true at RLS.org where they have a specific board for “Natural Remedies”, yet this board is monitored by pro-med administrators.
I contacted Georgianna Bell at RLS.org and to her credit, she got back to me right away. She said she would look into it.
I hope this issue is dealt with, but I’m not going to hold my breath.
This is a travesty for anyone looking for help.
Here’s my analogy to help put this craziness into perspective.
I have my life together, I feel great, and I want to try and give back – to help others that are in a place that where I once was. A place that was dark, painful and without hope.
I visit an online community for alcoholics that are trying to stop drinking.
Antibuse doesn’t heal or change anything and doesn’t deal with the reason WHY you drink in the first place … all it does is make you sick when you try to drink. It’s really the definition of a “band-aid” cure.
Most of the talk on this community board is about the right amount of Antibuse to take.
So, I draw from my experience and post a comment of how going regularly to AA meetings has really helped me, as well as attending a treatment center, reading books on recovery, getting a sponsor, meditating, praying, following a proper diet etc.
The pro Antibuse moderator then either:
a) belittles my methods, and makes it clear that if this hokum worked, then I wasn’t a real alcoholic.
b) deletes the post before anyone sees it because it might corrupt their minds.
I’m sure many of you are as frustrated as I am.
Hopefully, someday, someone creates an RLS support community that allows ALL points of view, without censorship.
ADDED NOTE (Aug 15, 2013)
I’ve been allowed back onto the RLS UK discussion board (thanks to a lot of support from some of their members who protested the ban). To say I’m on thin ice there is an understatement.
Also, my post about RLS being a symptom has been put back up at RLS.org. They said that it was originally deleted by mistake. I’m also wearing out my welcome there.