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Hi mplamondon65:
Because you take Ropinirole, maybe you are suffering from augmentation. Do you know what this is?
The RLS Foundation website has some really good explanations of augmentation. You don't have to join to read their information. Or, you can google "augmentation from dopamine agonist drugs" or "restless leg augmentation."
Whether your problem is augmentation, or not, the best thing you can do for yourself is make an appointment with an expert RLS doctor. Seriously.
Family physicians and ER doctors are not knowledgeable about treating RLS. If the dopamine agonist drugs work--fine--but if there is any problem, these doctors don't have a clue and you can just spin your wheels, getting nowhere expecting help from them. (At the same time, you suffer mightily as you have described).
The RLS Foundation can help you identify expert RLS doctors. If you are near a Mayo Clinic, there are expert RLS doctors there. Also, at Stanford in California and Mass General in Boston. There are expert RLS doctors all over the country. It would behove you to find one and make an appointment.
It took me 3 months to see my expert RLS doctor the first time, but his care has made me the RLS success story that I am. I had to travel out-of-state. It didn't come easy, but it was what has given me my life back.
My RLS also presents as pain. I had a period of my life where I suffered as much as you describe you do. So, like CP88, my heart also goes out to you. I wish you the best--to become the (RLS) success story I am today.
Please keep us posted!
Replies to "Hi mplamondon65: Because you take Ropinirole, maybe you are suffering from augmentation. Do you know what..."
@missjb thank you so much for your reply and for the information. Everything helps and I do plan to provide updates throughout my journey in the hopes that it might help someone else living with this horrible condition.
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@missjb That sounds like a fabulous idea -- skipping past all the doctors that aren't experts and going straight to the Mayo Clinic or wherever is closest to get the real truth and real help from a bona fide RLS expert.
For me personally this sounds particularly brilliant since my sleep doctor (who was supposed to be the "answer" to my PCP's woeful lack of knowledge) turns out to be, what can I say, not exactly proficient in the area of RLS, believe it or not. Proof of this (at least as I see it, though I could be wrong,): When she told me yesterday with that measured freaked out way I instantly noticed, that she doesn't have any patients on any higher doses of gabapentin for RLS than 900mg daily, (and this, when my own research unveiled that the Mayo Clinic says the *average* RLS dosing for severe sufferers is 1200-1800mg daily gabapentin). Right then and there I realized my sleep doctor either 1) is just out of her depth, or 2) the majority of her patients are sleep apnea patients, NOT explicitly severe RLS sufferers.
So...bottom line...thank you again so much for that suggestion to go past all of these perhaps well-meaning but ill-equipped medical providers and seek certified expertise from those who know how to deal with severe RLS.
If you are willing I would love to hear more about your experience, like where you went, and what (if any) hoops you had to jump through to get an actual appointment with the expert for the help you needed. For instance, did they require a referral from your pcp to get an appointment? Thanks in advance. Bravo for your success story, so encouraging to hear!