Restless Legs Syndrome (RLS) Discussion Board

Oh and thank you rust!!!

I think a couple of my posts have been removed. Im so sorry if I offended anyone. My intentions are good.

I seemed to be locked out. I’ll give this another try. If I did something wrong it wasn’t intentional.

Tim, none of your posts have been removed (with the exception of the duplicate that you posted today). We do not remove posts for being offensive and if we did, you would receive a private message telling you what you did wrong so that you could revise your message.

A problem that some encounter is that the system has a time limit (I think that it is about 10 minutes). If you exceed the time limit, you can keep typing but the system never posts your message and does not provide you with a warning that it did not get posted.

If you have a long message, you have two options. One is to break it into smaller segments. The second is to type for a period approaching 10 minutes and them submit the post. You can then edit it if you start the edit (a pencil icon) within a minute or two. If you wait any longer, you lose the option of editing and have to revert to option one by typing a second message.

I'm new on this forum but also a 65 year sufferer of RLS. I know a few things that might be interesting to you. Opioid addiction and other addictions are related to some defect in the pathway in the nervous system called the "dopaminergic pathway" that uses dopamine as the neurotransmitter. It is the pathway that is involved in comfort and satiety. That may be why opioids provide some greater psychologic reward to people who have that dopaminergic pathway defect, and that could lead to addiction. True with alcohol also. I wonder if opioid dependency masks that problem in that comfort pathway, so that withdrawal unmasks the defect even more. Remember that L-dopa and other anti-Parkinson disease medications stimulate the dopaminergic pathway, just like opioids do, and those kinds of medications have been shown to help RLS, at least for awhile. After some time, those meds actually make RLS worse.

It is important to understand that although dopamine meds are used to treat RLS, RLS is a hyperdopanergic condition, which means that we have too much dopamine. Our problem is with the receptors that the dopamine stimulates.

Recent work reported in Nightwalkers discussed how the opioids also treat a opioid system that parallels both the dopamine and glutamate systems. The brain is far, far more complicated than anyone yet understands. There are multiple parallel chemical systems with many checks and balances.

Yes, very complex. Glutamate pathway is the up regulator. All of these come down to the synapses, either at the releasing end or the receptor end. GABA is the main downregulator pathway, and it certainly must be involved in some way, also. The main thing is that RLS is a physiologic disease, despite the misunderstanding of some GP's who still consider it some kind of psychological problem. Sufferers should at least feel some comfort in that and have some optimism that a safe and cheap chemical or combination that targets the right spot or spots will emerge. The pharmaceutical companies will no doubt see profit and make it more expensive than can be justified. Apparently 1 in 10 people have this condition at some level. There is a lot of profit for those companies hidden in there.

Yes, it is a physical (neurological) disease and not psychological. Last summer, I had the honor of representing the RLS Foundation in a panel of patients representing various sleep disorders at Sleep 2023, the conference of the American Academy of Sleep Medicine. Every single patient spokes-person on the panel, no matter which sleep disorder that they were representing, had two things in common:

The first is that it took at least 10 years between initially reporting symptoms to their GP before they finally received a diagnosis that proved correct. Often this meant a decade of needless suffering due to the GP either ignoring or totally discounting the patient's complaints. You will see that borne out time and again on this board.

Second, every single one of us had been referred to a psychiatrist at one point or another because our doctor felt that we were making up the symptoms. We were all told "It's all in your head" and not in a literal sense. Several of us (including me) had been involuntarily committed to a behavioral health hospital (formerly known as a psychiatric facility) for treatment and in every single case, treatment at the facility had made our condition worse and in one woman's case, far worse.

The sleep specialist doctors in the audience were shocked, to say the least. They had no idea that these problems were common across the wide variety of sleep disorders represented or that it was taking so long for patients to get to them. As a result, all of the patients said that we had lost a great deal of respect for the entire medical profession. Some doctors really do want to help. But as you read through case histories of various individuals on this board, you will see far too many cases of doctors with overblown god-like egos, doctors who are not willing to learn from a patient who is living with a condition and has probably done loads of research (not just Dr Google) and worst of all, the doctors whose sole source of education about a disease (RLS in this case) is the pharmaceutical or CPAP machine reps that call on them. They are not willing to do their own research and I suspect that many of them gain their continuing education credits for the license renewal at Disney World or on the golf course in Maui. I personally had a neurologist tell me that gabapentin would not help with my RLS just two weeks after the FDA gave approval to Horizant (a pro-drug of gabapentin) and one of only two drugs specifically approved to treat RLS. When I challenged her by asking about why it wouldn't work when Horizant had just been approved, she slammed her laptop closed, stomped out of the room and then slammed her office door closed. Needless to say, I never received and answer and never saw her again.

As for the value that about 10% of the population has RLS, that is probably true when you include the full spectrum of the disease from mild to very severe and exclude all except those of European ancestry. The percentage of Asian ancestry appears to be more like 3-5 percent and for Africans (not bi-racial Americans) the info is either non-existent or else it isn't an issue. However, the percentage of those with the severe and very severe cases of RLS that are most often represented on this board has been reported as an estimate of less than 1 percent. What isn't clear is that if this is 1% of the population or 1% of RLS cases.