Fibro/WED - Inaccurate Information

[Polar Bear]

I have recently been diagnosed with classic Fibromyalgia, and also suffer from Temporal Artritis and RLS/WED.

The Consultant Rheumatologist recommended some reading for me which included the book 'Fibromyalgia - Understanding and Getting Relief from Pain that won't go away'. The book is written by Dr Don L Goldenberg, Chief of Rheumatology at Newton-Wellesley Hospital, and Professor of Medicine at Tufts University School of Medicine. It says on the back of the book that Dr Goldenberg is America's leading investigator into the condition of Fibro.

Dr Goldenberg writes about sleep disturbances and the use of amitriptyline for Fibromyalgia (his wife is a sufferer) and it is at this point of sleep disturbance that he refers to RLS.

He talks about other antidepressants and medication which are helpful for treating sleep disturbances.
When referring to sleep disturbances he refers to RLS and states that Sinemet is a good drug with which to treat RLS.

It appears to be an otherwise excellent book with regard to Fibro.

The book was first published in Great Britain in 2002 and reprinted in 2003, 2004, 2008 and 2009. I would imagine it is also available in the USA. So when it was first published I reckon Ropinerole and Mirapex were not available for RLS.

RLS/WED is pretty prevalent in sufferers of Fibro and to those who suffer from both conditions, who may have read this book, but haven't otherwise found good and accurate WED information this is an unfortunate piece of outdated and inaccurate information.

My understanding is that Sinemet is fine for occasional daily use but should not be taken on a daily basis due to the very high (80% +) incidence of augmentation of RLS symptoms. Dr. Richard Allen published an article in 1996 that confirmed the problems with daily use of Sinemet.

[ViewsAskew]

Excellent point, PB. I think they haven't done their homework in between reprints. They may regarding fibro - but obviously not RLS/WED!

[Polar Bear]

It doesn't even come to the issue of the reprints cos Dr Richard Allen's article which confirmed the problems with daily use of Sinemet was done in 1996, and the book was first published (in the UK) in 2002.

If it hadn't been for this site I wouldn't have known and would have taken the information regarding Sinemet without hesitation.

[ViewsAskew]

Duh! I was think 2006, but you're right!

How many people come here and their doctors - often neurologists - are still saying to use Sinemet????

[sleepdancer]

Back in the late 90's Sinemet was the first med given to me for my RLS/PLMD by a pulmonologist treating sleep disorders. When seeing a neuro doc for other issues, they took me off Sinemet and put me on Mirapex for my legs and Neurontin for my neck pain. The doc explained to me that Mirapex is an agonist that coerces the brain to act as if it had the right levels of dopamine. Sinemet is a replacement for dopamine. She said it is best to use agonists until they just won't work any longer because replacement of dopamine should be reserved as a last chance option because the replacement will likely at some point become less effective and you want to prolong that happening as long as possible, especially since Sinemet is a primary drug for Parkinson's and ideally one can reserve that option for a possible time of greater need. Similar concept as with diabetes meds. It is preferable to use pills until they are no longer helpful before going on insulin. I did develop side effects and augmentation while on Sinemet.

[Polar Bear]

thanks, SDancer, you explained the difference between the two types of medication very clearly.