Restless Legs Syndrome (RLS) Discussion Board

I take hydrocodone 5mg once a day at night to help me with RLS and for chronic shoulder pain. Over the last year, there has been a ton of news about this and other medications being denied or harder to get from their doctor. So far my doc has allowed me to keep refilling every 30 days but now she went on leave until December. I am concerned that the covering docs will decide not to refill at some point. This is the only medication I take and its the only one that works for my RLS without any major side effects.

Does anyone else have this same concern?

I do. And, my guess is that others do, too.

Yes. Scores of people do. I'm very vocal about it whenever I see the "opioid crisis" mentioned.

Yes, I have even gone so far as hand deliver a letter to my congressman asking that he work to reduce the pressure being placed on doctors and pharmacies by the DEA and CDC.

Was at a political training this weekend and heard someone mention it. They must have thought I was crazy when I interrupted and vented my opinion...

I don't take opioids. After joining this discussion board and learning about RLS/WED, hearing people's stories, and learning how important the option of opioids is...I have a passionate opinion and deep concern about this non-prescribing trend. I think it's really illogical, and I worry about my fellow RLS sufferers.

You're not alone, click4it! It's almost criminal that the only medication that relieves suffering and allows a person to be a productive member of society should be denied for reasons that are irrelevant to the actual situation of that person.

I recommend that you read as much as possible about WED/RLS, then print out a few key pamphlets or papers to show to the doctors that take over your care. The RLS Foundations' Medical Bulletin is a good choice, something that most doctors will respect. The trick is to be able to summarize the key points in the few minutes you have. Try to understand it as well as you can first, then highlight the lines that seem to pertain to your situation.

The Bulletin goes over treatment of three types of RLS/WED: intermittent, daily, and daily-refractory (meaning hard to treat, usually because the dopamine agonists and anti-convulsants don't work). See if you fall in the daily or the refractory category after reading more about them. A new doctor might want to know why you're not using a DA (like pramipexole, ropinirole, or the Neupro patch) or an anti-convulsant (like Horizant or Lyrica), so be prepared to answer those questions, or to try a medication or combination of medications that you haven't tried yet.

You should also be prepared to explain what augmentation is to your new doctor. It is something that does not happen to Parkinson's patients, only to WED/RLS patients, and it is absolutely horrendous since it consists of a worsening of symptoms. Many doctors (sadly) aren't aware of this, even though it seems such a basic fact of life for us.

I wish you the best of luck in the coming months!