Well, it took me years to realize I have RLS. No doctor ever asked me, they treated me as a psychological problem. I discovered RLS and the name of the disease by googling my symptoms. And a short period later I helped my mother to recognize that she has RLS too. I have a more or less milder form, but nevertheless it stops me from sleeping well almost every night – if at all. Levodopa helps, but I try to not take it, because I do not want to get into the state to need the more powerful drugs – because they all have severe secondary effects.
So yes, I do understand the problems of commercial interests and pharmacological industries. But I also do insist that more public education about those little diseases are highly needed.

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Hi Natalie – you are so right. It IS a mixed bag! I am a heart attack survivor, and I have seen the same irony in cardiac circles. There are those in mid-heart attack who are being sent home from the E.R. (as I was!) with misdiagnoses ranging from indigestion to anxiety to menopause. At the same time, we see Big Pharma trying to push their statin cholesterol drugs onto more and more people – including those who are at very low risk for ever having a cardiac event. I even heard a cardiologist joke (I think he was joking?) that we should just put statin drugs into our drinking water! That’s an example of “disease mongering” at its finest. And how tragic that those who need and deserve medical treatment can be ignored, while drug companies are looking to expand sales to healthy people who don’t need treatment but are demanding it based on those expensive “ask your doctor” ads.
Cheers,
C.

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Dear Carolyn,
First, I want to thank you for taking the time to respond to me!

I appreciated the information on what you were talking about concerning “disease mongering”; I now understand what you were talking about.

My biggest concern, of course, is for people like me, who suffered daily (or maybe I should say nightly) for decades before any doctor took notice or engaged with what I was trying to tell them. My brother and I fall into the severe category — we suffer nightly, and often during the day as well — and neither one of us responded to Requip. As a result, he’s on Hydrocodone (?) and I’m on Xanax, but neither one of us experience full relief.

As a patient, I would encourage further research into finding the physiological basis of the symptoms, refining diagnostic criteria and finding more effective treatments. I also do believe there are people who suffer but do not speak up — when I was a child and teenager, I said nothing because I thought it was normal — my symptoms were much milder at the time, and only lasted about 1/2 an hour.

Now, in my 60’s they can keep me squirming in agony for 6 – 8 hours. One of the reasons I started asking doctors for relief was because I read about it in the media — they are not totally useless! The RLS Foundation has been useful to me, if only for confirming that I do fit the four criteria exactly. So unless doctors specifically ask about the problem, I don’t think that it will be properly diagnosed without public education.

It’s actually a mixed bag, isn’t it?

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Hello Natalie,

Dr. Goldacre (and many others) are not saying that RLS doesn’t exist.

Their point is that the pharmaceutical industry (notably GlaxoSmithKline) began promoting awareness of RLS back in 2003 to help sell more of its drug, ropinirole. GSK began with press releases about its paid presentations at the American Academy of Neurology meeting describing early trial results of using ropinirole for the treatment of RLS. Two months later, GSK issued a new press release entitled “New survey reveals common yet under-recognized disorder—restless legs syndrome—is keeping Americans awake at night” about an internally funded and unpublished study.

You might be interested to learn that the Restless Legs Syndrome Foundation you recommend is heavily subsidized by GlaxoSmithKline.

As the journal Public Library of Science Medicine concludes in its April 2006 report, “Giving Legs to Restless Legs: A Case Study of How The Media Helps Make People Sick”:

“The market for RLS treatment gets enlarged in two ways:
– by narrowing the definition of health so normal experiences get labeled as pathologic
– by expanding the definition of disease to include earlier, milder, and pre-symptomatic forms

“In a large 2004 Johns Hopkins study reported in the Archives of Internal Medicine, only 7% of subjects being treated for RLS reported all four RLS diagnostic criteria, and only 2.7% reported moderately or severely distressing symptoms two or more times per week (i.e., the group for whom medical treatment might be appropriate).

“Media coverage of RLS (33 published articles about RLS reviewed by PLoS Medicine) exaggerated the prevalence of disease and the need for treatment, and failed to consider the problems of over-diagnosis. About half of these articles reported that the syndrome is under-diagnosed by physicians (“…relatively few doctors know about restless legs. This is the most common disorder your doctor has never heard of”) and under-recognized by patients (“…many people can suffer in silence for years before it is recognized”). One-quarter of articles encouraged patient self-diagnosis and suggested people ask their doctor whether restless legs might explain various problems (including insomnia, daytime fatigue, attention deficit disorder in children, and depression).

In essence, the media seemed to have been co-opted into the disease-mongering process.”

You can read the rest of the Public Library of Science Medicine report here.

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I think I might need Panexa too! I have some vague symptoms that are consistent with those suffered when you have a Panexa deficiency. I should ask my doctor to ask his drug rep . . .

Sad and alarming at the same time. Thanks.

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Hey Paula! Maybe you need to take PANEXA, the drug that’s just waiting for a good disease that hasn’t already been taken! Check out https://ethicalnag.org/2009/10/18/panexa/

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Thanks for another thought-provoking article, and for opening my eyes to the notion that I may be suffering from “night eating syndrome,” while my husband no doubt experiences regular “restless leg syndrome.” We’ll have to get properly diagnosed, and get some pills for our ailments – STAT! 🙂

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