Fibromyalgia book title feedback

[Drtohelpfibro]

I am a physician with a soon to be published book on fibromyalgia and want input and feedback on the title. The book is meant for those with fibromyalgia and their loved ones. The following is the first couple paragraphs to get a feel for it.

When I started medical school in 1992, I was oblivious to the diagnosis of fibromyalgia. When I finished medical school in 1996, I was still unaware of this disorder. Despite seeing many patients who likely had fibromyalgia, I was blinded to the diagnosis, let alone how to help the suffering that many patients endured.
The following online testimony was in response to an article in the New York Times on the use of artificial intelligence for making medical diagnoses. Her story resonates with other stories of my patients and shares common features. "I would have loved this [artificial intelligence] 25 years ago, before having five painful surgeries for a disease I didn't have. In the past seven years, as symptoms shifted into high gear, I've seen four gynecologists, four orthopedic specialists, two primary care physicians, two physical therapists, two masseurs, two acupuncturists, two pain specialists, one gastroenterologist, one chiropractor, and a Feldenkrais practitioner. That's 21 practitioners who all got it wrong. Can I have my time and cash returned, please? BTW, the right answer is fibromyalgia."
Sadly her story and possibly yours or a loved one is not unique. While not everyone has all of these problems, and some of you may not even be 25 years old yet, for many people, fibromyalgia is mysterious. Many have pursued dead ends and wild goose chases only leading to false hopes and frustrations.

The Tile and subtitle I am leaning towards is:
Conquering Fibromyalgia
Real Answers, Understanding, and Solutions to Real Pain, Fog, and Fatigue

Your feedback is greatly appreciated as this is the first book I have ever written. I have been inspired by patients I care for to help them and others. The book is intended to inform, inspire and equip those witH Fibromyalgia with evidenced based approaches and understanding.

 

[Dooi]

I like "Conquering Fibromyalgia"

The lengthy sub-title seems a little keyword heaving.

 

[Drtohelpfibro]

Thanks for sharing. It’s been a challenge to come up with a title.
The other title my editor and I had was briefer and I think is better

Conquering Fibromyalgia:
Real answers and real solutions to real pain

The longer title was intended to empathetically capture that fibromyalgia is more than just pain but includes the often more debilitating and frustrating fibro fog and fatigue

 

[JayCS]

Hi - I get the why of both titles. The briefer one I find catchier and that way the "real" doesn't sound artificial.
My slight problem is: "conquering" and "solutions" both sound a bit as if you are saying it is possible to get rid of it completely, and there are people out there who try to propagate that, like the youtube exercise-against-pain-specialists Liebscher & Bracht, who almost say it doesn't really exist (altho they don't say that in the small print and their exercises aren't generally bad). I am someone who keeps managing to get a lot of the pains down to zero, but I have to keep doing it, and the Ache & exhaustibility remains a fundamental problem. A lot of people have problems if they get the feeling they aren't doing enough, it's their own fault etc..
OTOH just saying "Managing Fibromyalgia" is perhaps not enough.
(I've read 2 fibro-books and both were good, but I only 5-10% of them were new to me after researching on the web, nothing vital.)

 

[Drtohelpfibro]

Conquering is that it is an ongoing battle
Real solutions ( plural) vs solution ( singular) . The book gives evidence based comprehensive approaches that has and can put many patients of mine into “remission”. Analogies aren’t perfect but in a similar way heart disease can be reversed and put into remission through appropriate management. It is harder to quickly reverse blockages and high blood pressure in a 75 year old I’m seeing for the first time compared to a 39 year old with a newer diagnosis. Similarly,No doubt, it is harder to put fibromyalgia into remission in someone who has had it for 50 years than 5 years. Reversing symptoms, dropping the fiq-r score is definitely expected. To what degree someone can or willingly fully implement the comprehensive approach is variable and there are higher obstacles in some that make complete remission impossible but even those can have reversal of symptom intensity.
my goal is to inform, inspire and equip those with fibromyalgia, To give hope. So many have been given the diagnosis without hope or they have been given gimmicky false solutions. “Take this special supplement that a doctor concocted and is selling for $50 a month,”for example. I want to comprehensively connect the dots with answers, understanding, and solutions. Many with fibromyalgia is like being blindfolded, bound, and tortured. No understanding of really why and how( the blindfold) and no way to escape ( bound). I want to remove the blindfold and unbind.
The book is what I wish I could share with my patients and their loved ones but can’t cover in just one visit, even if the visit is 100 minutes long.

 

[sunkacola]

Conquering Fibromyalgia:
Real answers and real solutions to real pain

I like this one.
Although, I somewhat question the use of the words "conquering" and "solutions", because to me these words imply controlling and solving, and this is not a syndrome that can be fully controlled, nor can the problems it causes be fully solved unless it is somehow cured, and we all know there isn't any actual cure. To me, seeing that title would make me want to read the book, yes. But I wouldn't believe it would solve my problems, and the title might make me wary of the things you say. (I am only giving feedback here, just because you asked....not being critical. It's basically a good title.)

I have learned a lot and give advice here (you can see my advice post at the very top of the General forum), but I always caution people that everyone is different, and not everyone will experience the same thing. For some, doing all the right things will make a huge difference, for others only a small one. I just figure any amount of change for the better is more than worth it.

I simply wonder if that title would make people think you had all the answers and could tell them how to cure themselves, and some people could be disappointed when it doesn't cure them.

I'd also be interested to know what you say in this book. I suspect that you have a number of suggestions that I don't know and don't have in my Advice post, so I will be very interested to find out what is new to me (and to others).

 

[Drtohelpfibro]

Thanks. I refer patients to good books for many other health issues that are from physicians I respect and are evidence based. I had looked over the last couple years and hoped to find a good book to refer to For fibromyalgia. From what I reviewed some had good things but didn’t give a comprehensive approach Or if they did didn’t go into in-depth enough to explore the significance of these issues. I am a physician who loves to learn and stay on top of things. I hoped the 2019 Mayo Clinic book was going to give my patients what they needed but they left important areas out and left other areas untouched. I didn’t think it went in-depth enough. This may be a product of a physician’s experience . As a pediatrician and an internist I have had a chance to try to see how these apparently disconnected symptoms And syndromes fit together and are connected. Medicine has become so specialized But fibromyalgia isn’t usually managed well by a specialist because of their focus on The one organ system of their specialty. Most primary care doctors having had the training and interest to learn more. As I wrote in the initially post from the intro to the book, I too was in that same boat. I didn’t know much at all about it.
I would be surprised if you don’t learn a lot, get inspired, and become equipped. it is written to a level beyond a 6th grade reading/science understanding level. I didn’t dumb down the information. It is meant that you could share this book with Your caring doctor To help them care for you much better. You will need some level of assistance from a physician in most cases.
Can fibromyalgia be reversed? Can any chronic medical conditions be reversed for that matter? Unfortunately most are unaware that it can be done. Many people think that once thyes have type 2 diabetes it can never be reversed or they have never been told that It can be. In a similar way many have never heard that Fibromyalgia can be reversed. I have many patients that have reversed their fibromyalgia from severe levels as measured by the FIQ-R to the mild and even normal range. If you are unaware the FIQ-R is used to assess overall fibromyalgia and is used in research to assess the effect of treatments on fibromyalgi. If you are familiar with diabetes it is like measuring the hemoglobin A1C given a good measure of overall control. I had the chance to see a patient today whose score on the FIQ-R in the early summary was in the very high range to the point that she had to go on temporary disability. Today she is back working 40 hours a week with a score in the mild range. It was not one approach, explanation it was many. It also was coaching and counseling to help steady the course with close follow up and encouragement and appropriate medications and lifestyle changes that made the difference. Another of my patients today had read my rough draft from earlier those summer and said the book really resonated with him and his experience.
The book has 2 sections with the first going into an indepth understanding of fibromyalgia. You are likely to come to some realizations that will resonate with much of one’s experience who has fibromyalgia. It is like someone taking off the blindfold and showing you things that you never even knew were connected. I talk about fibromyalgia and fibromyalgia related disorders. I also talk about pediatric fibromyalgia and related disorders. My patient today said she is so glad she knows about her fibromyalgia and how to management. She also now knows to be on the lookout for this in her 3 children ages 4,6, and 8. Why wait until you are 42 years old to figure things out when it started many years earlier.
This book interweaves sketches of patients I have seen, except for one published case study. These are intended to bring the pathos of fibromyalgia, the human experience, alive to the reader. If you have fibromyalgia but your loved one doesn’t get it they should have a much better understanding of something
The timeline for publishing the book: It is being reviewed by the editor. I then plan to have physicians review it to leave endorsements , have to pick a book cover, and add any final edits.

 

[JayCS]

Ah, now we're talking! I'm certain your book will have good ideas and you have a good attitude towards patients and the syndrome.
But to be sure we understand each other correctly I still have questions.

apparently disconnected symptoms And syndromes fit together and are connected.

With syndromes, do you mean things like IBS which are common and/or Sjögren's which could be part-masking etc.? (the "related issues" you say later.) Or something else?

You will need some level of assistance from a physician in most cases.

OK, this sounds different to other books, and interesting to me. I've read all research-stuff I can find on the net too, but I assume your book targets comprehensively in between self-help and research.

Can fibromyalgia be reversed?

"Can" / "can be done" and your examples leave a lot of room to interpretation: Can - always, usually, sometimes or rarely? I have heard that very rarely. So I assume that these are special cases, perhaps even misdiagnosed or partly due to some kind of strange beautiful spontaneous remission. As all fibro-patients I have met, written with and read about plus myself are special and individual, with a certain intensity of the syndrome, medical, psychological and fibro-history, co-morbidity, perhaps including masking in both directions, which treatment can be tolerated due to sensitivities (in my case mainly IBS, dry skin & seizures), heredity etc. You haven't considered that here - I'm sure you have in your book?

I have many patients that have reversed their fibromyalgia from severe levels as measured by the FIQ-R to the mild and even normal range.

First the FIQ-R: Just looked at the two pages and have to laugh... I've filled out short & extremely long versions (taking 30') of these pain-questionnaires. It's also something like my daily (if necessary hourly) pain diary, but by far not as subtle. I always have to laugh filling the questionnaires out, because they beg a lot of the problems. One of my main points: I can do everything for 2 mins, often even hard and fast. And that's how my days, my housework and trying to start work again go: 15mins. work, then a long break, etc., 40 mins. once a day at most. Or working an hour at home, preferably lying down. Finding the invisibly moving sweet spots of each activity. That's mainly my exhaustibility - all over, esp. arms, hands, legs. Or (like I said): I've got *all my local pains down low, keep getting them down to zero (used to be over the whole of my body), day & night, I've got long sleep, but am still tired. And on the level of my Ache & exhaustibility there are times I can get it to zero for a few days (cryotherapy when it's warm outside), but only not working. We all have so many levels & types of pain. These questionnaires brush this aside as if it were nothing - but it is everything! I know they're only meant as a rough comparison - but here's my rough comparison: I'm much better when not working, but I'm struggling more to do 2 hours a day, altho I love it, than a year ago.

many patients? How many? %? Where are they all? ;-) (not meant disrespectful - what is your explanation for them not showing up much?)
reversed? And how many others are there, where it's got worse?
even normal? How many normal?

If you are familiar with diabetes it is like measuring the hemoglobin A1C given a good measure of overall control.

Are you sure, after the subtleties I wrote about above?

I had the chance to see a patient today whose score on the FIQ-R in the early summary was in the very high range to the point that she had to go on temporary disability. Today she is back working 40 hours a week with a score in the mild range. It was not one approach, explanation it was many. It also was coaching and counseling to help steady the course with close follow up and encouragement and appropriate medications and lifestyle changes that made the difference.

It's good to hear some people make it and she could be helped! I've tried 60 (and counting) types of "treatment" or "tricks", with a lot of motivation, self-discipline, ever increasing self-knowledge, with "coaching, counseling, lifestyle", each for the recommended time, if I could tolerate them, often several times in different "doses" (whether meds or PT) if I wasn't sure. And I've ended up with 8 of these that help quite a lot. Which is probably great compared to others. But I'm still hardly managing to work!

Another of my patients today had read my rough draft from earlier those summer and said the book really resonated with him and his experience.

That I will definitely not doubt, I'm not doubting your book at all.

It is like someone taking off the blindfold and showing you things that you never even knew were connected.

This definitely resonates with my experience: There are many things I'm finding out by - not trial & error but: informed guesses & error/success (very occasionally with the help of my 40 docs...). Has always been the case, even before fibro. Now by having Sjögren's suspected, I've realized that a lot of my issues are connected via sicca (dry eyes, mouth, throat, skin, stomach, praps gut). Doesn't help much, but a bit. I also assume that fibro might have something to do with auto-immune, with ATP, energy on the cell-level and the amount of oxygen that gets in the body.
But you surely aren't saying you are taking all the mystery out of how this syndrome works, because that'd be something which contradicts all research etc. I've read: It is a mystery and I guess will remain so for at least 20 years.

If you have fibromyalgia but your loved one doesn’t get it they should have a much better understanding of something

Errh, wait a minute: Isn't it more for physicians? Or do you mean different portions of the book? Or are you trying to somehow cater for everyone? Not sure that's possible.

The timeline for publishing the book: It is being reviewed by the editor. I then plan to have physicians review it to leave endorsements , have to pick a book cover, and add any final edits.

Despite or even because of my questions, I'll be glad to read it!

 

[sunkacola]

JayCS, thanks for writing that post. I wanted to write one pretty much like it myself but did not have the time and energy to do it so I am glad you did. I think a lot of the claims made in Drtohelpfibo's last post are rather over-the-top, and I always have my doubts when someone claims to have all the answers, especially when it applies to something as variable and unknown as FM.

If there were a way to reverse FM in most people, this would not be something that just one person writes in a book, it would be known commonly. I am sure the book will have good info in it for many people, especially for those who are recently diagnosed, but I would read it with a little skepticism and not expect it to have all the answers.

I will of course be interested in what the book says, especially to see what suggestions it makes that I have not included in my list of advice points for people. As long as he doesn't get people's hopes up that if they read his book and do what he says they will be cured. In my post I make sure to say that experimentation is key, and that there are some things, like diet, that will help everyone to feel better overall but may or may not ease the actual symptoms of FM, and that everyone is different.

 

[Drtohelpfibro]

Thanks for you feedback. Most physicians don’t have much experience or comfort with fibromyalgia. Many have a stigma about it. I’m guessing many, like yourself on this forum, have a better understanding than most. This book will be helpful for these physicians.
Reversals to the normal or mild range commonly happen in those who are able to implement the treatments. To the extent that one can implement each of these will vary. Someone’s predisposition to fibromyalgia is never cured but symptom severity can in many be put into a range of tof those who are not affected by fibromyalgia. Some will have large obstacles that may be extremely challenging to reverse more than a mild to moderate levels. Most of the patients I see are new to the diagnosis and need more education than many who are probably in the forum who have years of experience with it.
I had a chat with neighbor whose friend has fibromyalgia and is really struggling with it. I mentioned my book to her. This woman’s husband does not “get” fibromyalgia. His misunderstanding is the norm for friends and spouses. This book will be helpful for those who want to learn more and understand their spouse, family member, or friend that is struggling with fibromyalgia.
In regard to being over the top, I have been able to help many improve with a comprehensive approach. The improvement again is similar to the proproption of adherence. This is similar to reversal of heart disease. It does and can happen regularly through intensive lifestyle changes as demonstrated by Dr Dean Ornish and Caldwell essylstyn. The reversal was mild in those with 50-90% adherence, and high in those in 90+% adherence. Those with <50% adherence showed progression of disease. This also happens with hypertension through intensive diet changes to a Whole Foods plant based diet and is in proportion to adherence. I used to be what I thought was just honest but now consider cynical when patients would ask how long they would have to be on blood pressure meds for hypertension. I said you can never go off, its all in your genes, there is nothing you can do. I no longer say that because I’ve learned that it can be changed. Similar to fibromyalgia, most patients with heart disease and hypertension can be reversed.
Fibromyalgia is not a fun disease for many doctors to treat let alone for the patients to have. A recent new patient who was diagnosed years ago by a nice rheumatologist said, I will diagnose your Fibro but I am not going to treat it. You need to see your primary doctor. Managing fibromyalgia like many chronic diseases is a challenge for the providers and those living with it.
Medicine does a very good job for example, in treating an acute heart attack, but the best for preventing it in the first place. It is easier to treat an appendicitis or gallbladder disease with a a high success rate through surgery. Compliance with surgery is essentially 100% compared to comprehensive implementation of treatments for fibromyalgia.
One last quick response about fibromyalgia like diseases, I am referring to the regional pain syndromes such as irritable bowel syndrome and migraines among many others.
There is no “magic cure” for fibromyalgia and don’t mean to imply one simple intervention that will cure fibromyalgia. In medicine that typically would be a medication or surgical intervention which doesn’t exist For fibro. Unfortunately, as a patient I saw today for follow up of fibro myalgia and doinG much better than she was 6 months ago mentioned was the several surgeries she had which now looking back were probably unnecessary and only prolonged her struggles and Delayed appropriate diagnosis and management.
To summarize from the feedback I am hearing, that the title Conquering Fibromyalgia is a good title and the shorter subtitle of- Real answers and solutions for real pain is good.
The message is heard clearly, “please don’t be another snake oil salesman trying to Give us false hopes.
I know everyone has their own unique fibro story And don’t want to be presumptuous that everyone will be magically made better.
Take care and thanks greatly.

 

[JayCS]

Phew, for a minute I thought you were citing your stats for fibro, like I asked,
but now I see you are simply comparing ('proving') something unproven (help many with fibro)
with something else unproven (help many with heart disease)... Hmmm...
But you are citing names - albeit for something else - and (blood-fat-/heart-disease being a chance-finding on my fibro-way )
looking at these it turns out they are very similar to other recommended regimes,
but not more proven effective (and not helping me altho I am 100% adherent and was pretty much before anyway because of my IBS),
and *not evidence based, i.e. big studies, but personal stats - which do not count as representative...
Similarly your stats on fibro? If they really were evidence-based you could be directly citing studies too....

Most physicians don’t have much experience or comfort with fibromyalgia. ... ..This book will be helpful for these physicians.

So a sort of introduction, fibro made easy for people who don't really have a clue...
But any book or pamphlet from one of the fibro-organisations will do that... - I still can't see proof that you're going beyond that...
This is not the same as news-breakingly effective new treatment combinations...?
I see you're modifying part of what you said, but still claiming, without citing studies etc.:

Similar to fibromyalgia, most patients with heart disease and hypertension can be reversed.

"One last quick response about fibromyalgia like diseases, I am referring to the regional pain syndromes such as irritable bowel syndrome and migraines among many others."
Ehm: So *this is the blindfold you are taking from us?

To summarize from the feedback I am hearing, that the title Conquering Fibromyalgia is a good title and the shorter subtitle of- Real answers and solutions for real pain is good.

I'm starting to think it may be a good title in that it continues to be a warning... ;-) because you haven't really proven to me you're not a

snake oil salesman

yet... ;-) Don't want to be harsh... but "evidence-based" & "most ... can be reversed" etc. are very big words/contentions...

 

[sunkacola]

Once again, JayCS, you wrote what I would have but you beat me to it. I personally do not think this person has anything new to offer to us. No offense intended to the OP, I am simply stating my opinion. If the book helps anyone to better understand their spouse/friend/relative who has fibro, then it will do some good, and that makes it worthwhile for that. But I doubt it has anything helpful other than information about FM.

I also would like to know how the advice this book would offer differs, if at all, from the advice I offer in my post on advice. Personally, I don't know of anything other than those things, and variations or expansions on those things, that a person with FM can do to help themselves. If the books says to take a certain vitamin or combination of supplements, or any other one thing or group of things to do and says that will make all the difference, I don't believe it. Again, every person is different. While I know that the advice I give is good and is helpful, I do not make any claims about success, and always advise experimentation - some things may help one person and have no effect on another.

To the OP: I would like you to tell me what your book advises that is not included in my post on advice.
And, please, don't tell me to buy the book in order to find out your secrets. That would be a clear indication that these posts of yours are mostly for advertising your book, and that is frowned upon here.

 

[JayCS]

Just came to me: When I was on (psychological) mailing lists in the 90s, there were often one or two docs and other specialists who spent 1-2 hours per day helping people (and probably learning too), recommending things, an invaluable ressource. Just to contrast & clarify what's been happening here - up to now, at least... Or - drtohelp - would you like to correct our impression? You're very welcome!

 

[Flexecif]

The title is great. About the subtitle, have you considered trying shorter words like:

understanding and managing

managing gives the impression that you are in control. It sounds empowered that's what the reader should feel.

 

[Little Debbie]

I have fibromyalgia. And to the doctor who wrote the book, thank you and I wish you much success , I agree with Flexecif. And I’m glad there’s a doctor that gives a damn like you. At least you’re trying. And from what I’m learning in therapy, and already know deep down, is to change my way of thinking which can help emotional pain and the physical pain although I am nowhere close to any of that, but I do believe it works. My therapist is an army veteran 100% disabled from a horrible injury although you could never tell it.