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Posted
Hi everybody, I just found this forum.

While not a sufferer of chronic pain myself, I have relatives who suffer from Fibromyalgia and MS. Of course, I can't take any of that pain from them (I would in a heartbeat), so I'm looking for books or resources I can look at that will help me better understand their diseases.

So far I have found a book about understanding chronic pain but nothing much else. I was wondering if anyone else had any other resources or books that they have found helpful?

Thank-you all.
 
Posts: 2 | Registered: 01-03-2008Reply With QuoteEdit or Delete MessageReport This Post
Picture of Karen Lee Richards
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How fortunate your relatives are to have such a caring family member! You've already done the single best thing anyone can do for someone who has illnesses like fibromyalgia and MS by believing that their pain and suffering is real. You can't imagine how deeply it hurts when you're suffering with intense pain yet people accuse you of being a hypochondriac or just lazy.

I would like to caution you about one thing –– although it's natural to want to find a way to take your loved one's pain away, try to avoid telling them about every new product that claims to cure or drastically improve their illness. While we appreciate that you care about us, most of us have tried a number of different treatments only to be left with disappointment and a thinner wallet. What we hear when well-meaning friends encourage us to try a new treatment is that if we don't try it, we don't really want to get better. The truth is, there are probably hundreds of products out their that claim to help and none of us can afford to try them all. And while some may help a few people, none have yet been found to truly help even a majority of patients (despite some of their claims). I don't mean to sound preachy, but this is a problem I hear about frequently from FM patients, so I wanted to pass it on.

You asked about books and other resources you might look into. Since my area of expertise is fibromyalgia, most of my recommendations will be about FM. Having said that, the National Multiple Sclerosis Society's Web site has a lot of good information. I've also read their magazine, Momentum (formerly InsideMS) and found it to be informative and helpful.


Karen Lee Richards
ChronicPainConnection Expert
 
Posts: 83 | Registered: 03-16-2007Reply With QuoteEdit or Delete MessageReport This Post
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So sorry...I was trying to link to the magazine and accidently posted the message. Let's try this again:

National Multiple Sclerosis Society
Momentum Magazine

The best book I've ever read on what it's like to live with a chronic illness is Encounters With the Invisible by Dorothy Wall. Although the illness she deals with is chronic fatigue syndrome, the physical and emotional battles she describes so vividly are common to most people with debilitating chronic illnesses. I highly recommend this book for anyone who wants to peek into the mostly-hidden life of someone suffering with an invisible illness.

Good resources on fibromyalgia:

ChronicPainConnection's Fibromyalgia section

National Fibromyalgia Association's Web site

Book: Fibromyalgia Up Close and Personal by Mark Pellegrino, MD – Dr. Pellegrino is not only a fibromyalgia specialist, he is also an FM patient himself. An excellent book.

Book: The Complete Idiot's Guide to FIbromyalgia by Lynne Matallana – A good overall look at FM and how patients can take control of and manage their own healthcare.

There's also a new DVD out that I've heard is good, but I haven't personally seen it yet: Living with Fibromyalgia: A Journey of Hope

I hope some of this is helpful. If you need any other information or have any questions, please don't hesitate to ask.


Karen Lee Richards
ChronicPainConnection Expert
 
Posts: 83 | Registered: 03-16-2007Reply With QuoteEdit or Delete MessageReport This Post
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Karen, thank-you for your response.

I know it's overwhelming for the sufferers of debilitating diseases. I have searched a lot on the internet (how I found this site), and I truly appreciate the information and links you provided.

I will look at them thoroughly.

Thanks again.
 
Posts: 2 | Registered: 01-03-2008Reply With QuoteEdit or Delete MessageReport This Post
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Leanne

Boy, how wonderful your looking for more information for your family members, they are very blessed to have a loved one like you!

Karen already gave you the National FM association website, you can find tons of articles there by going through the search process or their articles from A-Z. I've found it to be very helpful and hope you do too.
Welcome to the Chronci Pain connection and hopefully we can be of some help to you.

Take care
Betty


"Only by openness to the mystery of God, who is love, can our hearts' thirst for truth and happiness be satisfied; only the perspective of eternity can give authentic value to historical events and above all to the mystery of human frailty, suffering and death."

Pope Benedict XVI
 
Posts: 673 | Location: Home in Washington State | Registered: 11-07-2007Reply With QuoteEdit or Delete MessageReport This Post
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