Thanks for the replies!
Polar Bear wrote:Finding that orgasm gives relief from RLS symptoms is something that has been mentioned previously on this Discussion Board.
I'm glad to hear that, but I'm talking about authoritative sources. Yes, it's often mentioned on internet message boards. But it's not mentioned on the main
http://www.rls.org page, which is probably a primary source of information for people looking for solutions. It's not mentioned in any research that is searchable in PubMed, except for a single case study from 2011. (A search returns several sources listing non-drug treatments for RLS, but none of them mentions orgasm for symptom relief, although they all mention things that in my experience don't work at all.) It's not mentioned on the UK's NHS web site. Basically, name any authoritative source listing non-drug treatments for RLS, and they don't mention it. It's not mentioned on Wikipedia, because they can only quote things that are said elsewhere by authoritative sources.
For a disease that affects 7-10% of the population, information about the most accessible treatment of symptoms is essentially unavailable to people, unless they are suffering badly enough to talk about it on an internet forum, and to do so for long enough to hear by word of mouth that orgasm can help. Even asking their doctor probably won't help, because their doctor (for whatever reason, as I speculated above) is not likely to include it in a list of suggested remedies.
In my view, this is an urgent humanitarian concern, to somehow get this information out through "official" channels. At least we ought to be able to get it mentioned on the rls.org web site, right?
Polar Bear wrote:An interesting theory .. The cause of RLS is considered to be a lack of brain iron.
I think that's overstating matters a bit. From a source I saw (linked from Wikipedia), iron may be causal for 20% of cases. 60% or more of RLS cases may be genetic. My understanding is that iron is an important factor in the dopamine system in the brain, but iron deficiency isn't the only thing that can mess with that system.
Polar Bear wrote:Are you suggesting 'getting off multiple times per day' could be a trigger.... well we are all different so anything is possible.
I'm suggesting that, by the same mechanism that heroine addicts get RLS, a person who has too many orgasms could get RLS. Or by the same mechanism ("augmentation") that dopamine drug users worsen their RLS. All three are cases of heightened dopamine in the brain. That makes sense to a layperson like me. It's worth investigating. Where is the research?
stjohnh wrote:I think this is the most unusual first post I have seen from a new member. Congratulations.
Woo-hoo!
stjohnh wrote:This part of your question is easy: Discussion of sex is a cultural taboo, in nearly all cultures across the world. Research is expensive (mostly) and someone has to pay for it. If a company can't make money off the results, they don't sponsor research. If a government tries to do research on a taboo subject, the population objects. Doctors suffer from the same cultural taboos as anyone else. Most will answer direct questions about sex, but most will not bring up the subject if the patient doesn't ask.
People are suffering, though. Awkwardness is just not a good enough reason for a doctor to withhold such information. It's a form of malpractice. Doctors need to suck it up. I suspect, however, that ignorance is a big factor for doctors, because authoritative sources don't mention it. Even this web site doesn't mention it in its official publications. Is there anyone reading this who might be able to change that?
stjohnh wrote:It is unlikely that orgasm causes RLS. RLS is thought to be due to low brain iron (BID, Brain Iron Deficiency) and AFAIK, orgasm has no effect on brain iron.
I don't think iron decifiency fully explains all cases, or wouldn't red meat / iron supplements be a reliable cure?
stjohnh wrote:Also, I suspect that trying to limit orgasm in hopes of avoiding RLS would not be very successful
.
Why do you say that? Maybe I was unclear: I mean limiting the frequency, of course -- not the magnitude.
Just like you would limit the frequency of taking opioid pills.
stjohnh wrote:Augmentation likely is caused by severe dopamine receptor dysfunction, the dopamine boost from orgasm is short-lived, making augmentation as a result of orgasm unlikely.
You clearly know more about it than me. Would you mind explaining a bit why external dopamine sources (such as heroine or prescription drugs) can give rise to RLS, but an internal source can't? I'm going to read more about augmentation, at this point I don't really understand it.
stjohnh wrote:Tell us a little bit more about you, your RLS, and on-going problems. We may be able to help.
Thanks. Well, I don't remember the first time I experienced RLS, but it was probably 20 years ago, I'm 43 now. I guess my case falls in the mild-to-moderate category. It has been intermittent over the years, and when it's in the "flare up" stage, it still doesn't wake me up every night; and when it does, it usually suffices to get up and do some light exercise, getting my heart rate up for a few minutes. My doctor wrote a prescription for me once, but it didn't really work, and I didn't pursue it further, because I was too busy, and my case isn't that bad. Once I discovered that orgasm is effective for symptom relief for me, that's the remedy I usually choose. At this point, I would call my RLS manageable. I really feel for people who are in worse shape. Not being able to get a good night's sleep is terrible and can hurt your health and basically every aspect of your life.
ViewsAskew wrote:But, as noted earlier, for many of us it isn't a perfect solution.
I hear you. But none of the non-drug treatments that are commonly listed in official sources are perfect solutions. In my case, massage certainly doesn't work for me. After all, this is a phenomenon of the brain, not the legs. I think orgasm would work for at least as many people as those other remedies. Why not mention it in your "Managing Your RLS" article?
ViewsAskew wrote:Some of us have found that orgasm actually can trigger RLS. Has for me and others.
That's interesting. Like I said above, from what we know about the mechanism, it makes sense (to me at least) that orgasm could be both a treatment
and a cause. Just like coffee is both a treatment and a cause for caffeine withdrawal headaches.
ViewsAskew wrote:My doc said he doesn't bring it up because it can cause issues with spouses/partners expecting/demanding - he figures many of us will find out by accident (sex often is at night at the same time RLS is active) and that we can do what we want with it.
Sex isn't the only way to an orgasm, though.
I guess it might be a problem for older people, for whom masturbation might still carry a cultural stigma. For younger people, that's almost entirely gone these days.
ViewsAskew wrote:It also doesn't always do a damn thing. For me, it can help, it can do nothing, and it can hurt. I also find that once the RLS starts, it is really hard to get to orgasm because the RLS is bothering me, so I cannot easily concentrate and relaxing makes it worse! For many of us, it is very short lived. It helps long enough to fall to sleep and then I awaken ten or fifteen minutes later with RLS again.
Indeed, like you said, it's not a perfect solution. But it's a tool in the arsenal that if used correctly, could help a lot of people! Maybe try reducing the frequency of your "non-therapeutic" orgasms, so that it will have more effect when you need to use it for RLS.
Thanks again everyone for the replies!