PDA

View Full Version : Nonfiction research- Fibromyalgia (CFS/other) treatment book?



Fenika
05-17-2013, 02:08 AM
Not sure if this should be here or perhaps CCs or ?

There are an increasing number of books on fibromyalgia out there, and some related disorders, and some overlapping symptoms (IBS being a big one), but I'm seeing a lack of in depth treatment strategies (or even a discussion of how to even begin to afford it).

I am learning veterinary acupuncture and starting to research how fibromyalgia is classified and treated in Traditional Chinese Medicine. Many books discuss alternative treatments but don't always go in depth or explain how the treatment might help or the range of expected results beyond 'it can reduce the pain.'

So I've thought about writing a book covering acupuncture, in depth acupressure methods to do at home, trigger point therapy, tai chi, yoga, and various food therapies (food therapy is something I'm seeing as quite overlooked beyond the basics and rather important from my experience). Certain types of massage would also be covered, particularly in regards to trigger points.

If anyone has experience with fibromyalgia, or a related disease, I have questions for you:

1) What are some important pieces of information you wished you knew earlier.
2) What alternative therapies have you tried? What are you considering trying? What has been your experience with alternative therapies?
3) What about the disease or the possible treatments would you like to know more about.
4) Are there any resources you found useful (books, forums, support groups, etc)
5) Can I PM or email you with future questions as this book (or possible books on other illnesses) takes form?

I'm thinking I could start seriously focusing on this project this fall or winter, but want to get some basic ideas and research started now.

veinglory
05-17-2013, 02:26 AM
This is just my personal opinion but I would hesitate to write about this condition without direct experience of treating it. It is a debilitating and highly idiosyncratic condition and there is a lot of conflicting advice out there already. And the FDA is riding anyone who makes what amounts to a treatment claim outside of a licensed practitioner or recognized pharmaceutical. Just my 2c.

Fenika
05-17-2013, 02:31 AM
Good to know. Are there specific guidelines for this? I know some treatment discussion in books exists.

I have experience being treated for fibro fwiw.

I could also look into editing the book and have more detailed chapters written by various OMDs... (Oriental Medical Doctors).

GeorgeK
05-17-2013, 02:37 AM
I suggest looking at physician level CME courses.

20 years ago it was taught that people with this affliction were malingering. However texts from the late 1800's said the same about diabetes.

There are a variety of theorized inciting factors from Ebstein Barr Virus to food allergens. Gradually the coalescence of thought about it is that it is probably an autoimmune problem triggered and or worsened by food chemicals. If the majority of symptoms revolve around the urinary bladder then it might be called interstitial cystitis.

If I were still practicing, I'd have the patients try plaquenil. Technically it's an antibiotic but started out life as an immune suppressant. It didn't pan out as an immune suppressant because it appears to only suppress hyperactive immune systems which weren't really in the literature much at the time that people were writing about it

veinglory
05-17-2013, 02:48 AM
There is a lot of stuff out there that technically contravenes FDA requirements but enforcement is patchy and they tends to focus on particular issues/campaigns rather than cover everything. If you write by proposal the publisher could probably help with establishing the things you can an cannot say or whether you can assume your book will not get targeted. You might consider a non-US publisher as other countries (e.g. UK) are much less restrictive.

Treatment in this areas is seriously in flux with a bunch of drug and non-drug treatments that seem to help some people and not others. It is fascinating to the extent that they are just beginning to work out what the organic cause of fibro is. But frustrating in that there is still a tendency to imply malingering because it is currently a subjective experience that is hard to demonstrate objectively.

Fenika
05-17-2013, 03:40 AM
I suggest looking at physician level CME courses.

20 years ago it was taught that people with this affliction were malingering. However texts from the late 1800's said the same about diabetes.

There are a variety of theorized inciting factors from Ebstein Barr Virus to food allergens. Gradually the coalescence of thought about it is that it is probably an autoimmune problem triggered and or worsened by food chemicals. If the majority of symptoms revolve around the urinary bladder then it might be called interstitial cystitis.

If I were still practicing, I'd have the patients try plaquenil. Technically it's an antibiotic but started out life as an immune suppressant. It didn't pan out as an immune suppressant because it appears to only suppress hyperactive immune systems which weren't really in the literature much at the time that people were writing about it

Wow, you MDs have way more available online than we vets do. Thank you for suggesting CE (continuing education).

Eastern medicine talks about imbalances in the body, and fibro certainly is a major imbalance on many levels. As I learn about acupuncture, what it has been proven to have effects on, and what it theoretically treats, I'm amazed by how comprehensive it is. Add to that other modalities and I am very interested in learning more and sharing the info.


There is a lot of stuff out there that technically contravenes FDA requirements but enforcement is patchy and they tends to focus on particular issues/campaigns rather than cover everything. If you write by proposal the publisher could probably help with establishing the things you can an cannot say or whether you can assume your book will not get targeted. You might consider a non-US publisher as other countries (e.g. UK) are much less restrictive.

Treatment in this areas is seriously in flux with a bunch of drug and non-drug treatments that seem to help some people and not others. It is fascinating to the extent that they are just beginning to work out what the organic cause of fibro is. But frustrating in that there is still a tendency to imply malingering because it is currently a subjective experience that is hard to demonstrate objectively.

fMRI is showing interesting data, but how that can be applied is still up in the air afaik. Maybe researchers are making some headway.

Orianna2000
05-17-2013, 10:30 PM
1) What are some important pieces of information you wished you knew earlier.
That it wasn't just fibromyalgia causing my problems, but bipolar disorder, as well. Doctors assumed my depression was caused by chronic pain and didn't investigate further. Now that I'm being treated for both, I'm able to do considerably more with my life. Would have been nice to actually have a life ten years ago!

2) What alternative therapies have you tried? What are you considering trying? What has been your experience with alternative therapies?
I've been told that acupuncture is good, but I haven't had the time/money to try it. I've tried physical therapy, chronic pain workshops, relaxation techniques, pain medications, neurological medications, antidepressants, etc.

3) What about the disease or the possible treatments would you like to know more about.
I thought it was a disorder, not a disease?

4) Are there any resources you found useful (books, forums, support groups, etc)
I attended a local support group, but only once. I found that telling my story once was enough to get it off my chest. I haven't read many books about fibro, most of what I know is from my doctor. I don't care for forums and message boards that focus on chronic pain, because it gets depressing to see nothing but new threads about how someone's having a flareup.

5) Can I PM or email you with future questions as this book (or possible books on other illnesses) takes form?
Sure.

mirandashell
05-17-2013, 11:17 PM
1) What are some important pieces of information you wished you knew earlier.
That's there a lot of help available on the NHS if you ask your GP for it.


2) What alternative therapies have you tried? What are you considering trying? What has been your experience with alternative therapies?
None really. Other than relaxation techniques because I realised quite early that stress is a trigger. So I have tried to remove as much stress as possible from my life.

3) What about the disease or the possible treatments would you like to know more about.
Any chance of a cure?

4) Are there any resources you found useful (books, forums, support groups, etc)
The NHS. I try not to use forums as whinging about the pain is more stressful to me than helpful.

5) Can I PM or email you with future questions as this book (or possible books on other illnesses) takes form?

Yep.

Fenika
05-18-2013, 03:17 AM
Thanks Orianna and Miranda.

And yeah, it's a syndrome and no one can figure out if there's a viral or other disease triggering it. Oi.

GeorgeK
05-18-2013, 04:31 AM
Wow, you MDs have way more available online than we vets do. Thank you for suggesting CE (continuing education).

Eastern medicine talks about imbalances in the body, and fibro certainly is a major imbalance on many levels. As I learn about acupuncture, what it has been proven to have effects on, and what it theoretically treats, I'm amazed by how comprehensive it is. Add to that other modalities and I am very interested in learning more and sharing the info.



fMRI is showing interesting data, but how that can be applied is still up in the air afaik. Maybe researchers are making some headway.
Actually in my case it's been research and observation, paying attention to patients' complaints and finally being afflicted with a disease with no name. I was diagnosed with a variant of ALS wherein the pain syndrome (not typical of ALS but common for fibromyalgia) was associated with the denervation and muscle atrophy. Limbs became horribly painfully paralyzed. Gradually I began having trouble breathing and trouble swallowing..and then I didn't die on schedule. On an off chance of it being a variant of Neuroborrelliosis that failed to show up on tests I asked my doctors for a three month supply of doxycycline and then to be started on plaquenil on the weird idea that what I had was an atypical case of a tick disease that had progressed into an autoimmune disease.

Despite everyone's predictions I'm getting better. I had to relearn how to do everything from walking to wiping my butt. Some skills have not returned like fine motor skills, I can type but not write with a pen, but I can walk. I can feed myself. I can go to the bathroom by myself. I'd like to see it tried on other weird autoimmine things. Maybe I'm a fluke. Maybe I'm a signal flare

mirandashell
05-18-2013, 05:18 PM
Mine was definitely post-viral. I had a horrible flu-like illness that totally wiped me out for 3 days and took me about a month to get over. Six weeks after that, I still had pain in my legs. That's what prompted me to go to my doctor. They took loads of blood for tests and finally diagnosed Fibro. More because there wasn't anything else. A process of elimination if you like. That was 7 years ago, when there hadn't been much research.

Last year I was rediagnosed with CFS due to fatigue being my major curse, rather than pain. Makes no difference to me, really. I deal with it the same way.

And I'm aware that I'm lucky in a way cos I'm on the light end of the spectrum. I haven't had anything like what George has been through.

Fenika
05-18-2013, 06:44 PM
:Hug2: all around.

My fibro started with gi pain. Long before the pain there was indigestion every night.

Western and Eastern medicine have their strengths. I'm glad the integrative approach is taking hold more and more.