Fibromyalgia: A Guide to Understanding the Journey

"If you do not have it but someone you know does: how much do you know about what they are going through?" I had to admit: Basically nothing. That simple fact frustrated me since I had no way to know how much of what I was being told was real, and how much might just be using it as an excuse to avoid things she didn't like. Rather than give too much benefit of the doubt or sit around frustrated, I decided to learn something. Shelly Bolton actually has fibromyalgia, so her direct experience I thought might help me more than something clinical. "Just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week." - From "A Letter to Normals." This was illuminating. "One of the biggest weapons we have in this fight is attitude." The opening tool in the book is not just a positive attitude, but a spiritual one. As a pastor, I might especially appreciate that, though I also understand that many people have different spirituality. I think the larger point is to keep things in context. Having a support system is also very important. One of the pieces of advice which Bolton admits is paradoxical is exercise. Tai Chi and Yoga are recommended, though, understandably, the training schedule of a fibromite could be sporadic given the nature of the condition. Diet is also a big tool, which includes avoiding refined sugars and starches and drinking plenty of water. So, though this I gain a great deal of insight. I can see where I can give my fibromite friend (a new term for me) the benefit of the doubt, and, just as importantly, where I ought not count on her. She won't know if she will be able to keep a planned schedule because she won't know if her fibromyalgia might act up next Monday afternoon. That means we just need to learn to plan accordingly. We just build in the kind of flexibility that will allow for her to be there or not be there and not to know until the last minute. It also shows me, perhaps, some places to not be quite as patient. This might require more deep pondering, but if she is insisting on the foods and drinks known to make her condition worse, then perhaps I should be less accepting of that. Certainly I should not be giving it to her. Before I make any significant changes that might show less patience, though, I think some discussions might be in order. I think I can get a much better understanding of how her particular condition manifests in her life now that I have a foundation. Thank you, Shelly Bolton.

This was a good, short read about fibro, which I was dxd with a few years ago. At first it was kind of in fits and starts but would dissipate and I'd be fine for weeks. Lately it seems to have gotten worse with more bad days than good. I am elderly and some of it may be attributed to age and not being to do some of the things I used to do without tiring. I am a retired RN and I know a lot of docs who don't really think it exists etc, which I find strange because I was also dxd in my fifties with polymyalgia rheumatica, which is taken very seriously in the medical community especially by neurologists, who question the existence of fibro. Fibro has more to do, if I'm correct, with the tendons etc. where poly simply means pain/aching thru-out the entire body. One of the complications though, if not dxd early is loss of vision that never comes back, stroke and all sorts of severe and devastating conditions. It is treated with very very high doses of prednisone which also has severe side effects. I was started and kept on 65mgs after a temporal biopsy was positive for TI. Tapered down over a period of 3-4 years, I finally weaned myself off completely. Frankly I think the damage done to my muscles and joints were probably related to being on pred for so long. I think that is what has led to this latest dx. I have read some blogs but I don't want to I don't want to feed this monster condition any more than necessary. I just take it one day at a time and hope for the best. When I had poly and was on pred I could not even get up out of a chair without someone helping me. So, as bad ad this can get, I just pace myself and get out of chairs with very little effort.

I flashed through reading this book in about an hour. I just kept flipping because Shelly makes everything so easy to read and understand.If you are looking for a huge detailed book loaded with information this is not for you. If you want something that is easy to understand and gives you rounded information so you can do more research on your own about what applies to you, than this book is for you. Or just something that gives an easy to understand overview of Fibromyalgia.I also suggest it for family members, loved ones and friends that would like to understand what someone with Fibromyalgia may experience. It lays everything out so that someone who does not have Fibro can understand it without tons of medical terms or too much information. They can walk away understanding the condition more instead of still being baffled.Keep in mind this is written by someone with Fibromaylgia so she understands many of symptoms. I had no idea so much that was going on with me was related to Fibromyalgia. This book opened my eyes and helped me understand what is all going on with my body. Now I can continue learning by using her book to research what applies to me.I really enjoyed it and I'm sure I'll use it as a reference.Speaking of references Shelly also list many of them at the back of the book so it is easy for you to continue your learning about Fibromyalgia. There are also stories from other Fibromyalgia suffers.

Thank you so much for this book! There were things in there that I have been going to my doctor with and I feel I've been getting ignored about. Now I know he probably knows less than I do. Think I'll buy some more copies - for his reference, and for my parents and family, to help them understand. It is also to be noted that not everybody is a dab hand on the computer and can easily look up information on the internet.Chapters are:IntroductionGeneral OverviewMuscle/Tissue Related SymptomsRespiratory/Sinus SymptomsSleep Related SymptomsReproductive SymptomsAbdominal/Digestive SymptomsCognitive/Neurological SymptomsSensory SymptomsEmotional SymptomsSkin/Hair/Nail Related SymptomsCoping with FibromyalgiaStoriesLaurie's StoryAmy's StoryCrystal's StoryLynne's StoryEsta's StoryMoving ForwardEpilogueAuthor's Recommended ResourcesFibromyalia Journal: Tell Your Own Story!Sources (101 pages in total, including sourcing pages)The book is written in a simple way (double line spacing/short chapters) for a reason..... so that Fibromites, like myself can, through Fibrofog (although I do, personally, hate that expression) learn all about Fibromyalgia. We don't need the long medical terminology - even if we could understand the words - when we have enough to contend with on a daily basis with just being able to think, let alone read or read about our very illness.Some of us can go about our daily lives, shopping and going out in the car, albeit painfully and like hell on earth. Others rarely leave home, if at all, and hate having visitors invade their space. We think we are going crazy, especially if nobody is able, or willing to help us. When tests proved fruitless in our search for answers, it doesn't make things easier. It emphasises that 'something is wrong with us' and 'we need help' .Fibromyalgia: A Guide To Understanding the Journey by Shelly Bolton gets 10/10 in my book. She has put together what it is like to be a Fibro sufferer, clearly explaining that one sufferer is different to another. Volunteers have offered their stories and it makes you weep. I wept because I was not alone, because I don't want others to suffer the way I am suffering, because many people have had this horrible, chronic illness for nearly all of their lives, whereas I've only had it for 5 years.... I hurt for these people.I have learned SO MUCH from this book - I can't begin to tell you how much without going into personal details. I've just found out that let's say approx 70% of what is going on in my health can be put down to the Fibromyalgia - the rest is due to another chronic illness, which I've had since childhood and can cope with. The two fight each other.The cover speaks volumes....There is so much to people who have Fibromyalgia. Please buy the book, if you are a sufferer....know somebody who has Fibromyalgia or if you are a doctor and wish to know more about it, perhaps...? I RECOMMEND HIGHLY.I hope this review has been helpful to you.

There wasn't a lot to this book and didn't tell me anything I don't already know about symptoms, not very helpful for the English reader the stories are American and about all the types of drugs they use over there.

A great read, really helped me as a newly diagnosed fibromite, the one thing i would say to anyone newly diagnosed read the book its really helpful but dont read the stories in the back I personally found these depressing where as the book itself was helpful and uplifting. Just my opinion

This is one of those books (small but mighty) to let members of your family and friends see to let them know how you are feeling having been diagnosed with fibro.At times trying to say just how one day you can do various things without pain, then the next no hope in hell, well it gets wearing, tiring and also dammed annoying if not just for others, but just you the sufferer. Wished I had plucked up the courage to read this book before now, as it might have saved a little bit of not only my sanity but the family too.It is a real life, straight talking book, that does make you realise that A. You are not going nuts with one bit of your body aching one time then another, another time. B. Your body temperature makes you either put on too many layers and other members of the family ask you are you ok as they have short sleeves on. C. Why you can not stand the smell of bleach/cleaning smells in supermarkets when the butchery part is being cleaned, when no one else notices it.It does away with all the magical big medical words that at times just confuse, irritate and make you wonder well if that says it should happen, well it must do. Just because one person has more sleep problems, sinus issues etc more than another does not make you have or not have fibro. It makes you realise that people can have it but not all have exactly the same effects with it.I know that the book has reference to prayers etc in it, but my way of thinking is too each their own, and what makes some happy and makes them feel better in anyway is fine. We all have different ways and view and I think that this book puts that message across well.

This book is brief & basically contains a list of possible symptoms of fibromyalgia, without any particular finer details, & is padded out with a handful of personal stories. There was nothing useful regarding management of symptoms or how to practically support anyone suffering from fibromyalgia. Very disappointing.