Best chronic fatigue & fibromyalgia books according to redditors

Can you ask them to watch unrest with you? my extended family was pretty shitty about it until I showed them some fact sheets and it really shut them up. The best one on here to show them that’s short is the solve CFS one.

I’ve collected these over the past year, and these are all of the best ones.

http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf

https://www.cdc.gov/me-cfs/index.html

http://solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf

https://www.amazon.com/dp/0897932803/ref=cm_sw_r_cp_api_bOIxBb3163914

This one I wrote as a research paper for uni, but I wrote it bc there was nothing available at the time that encompassed my experience and the experience that I heard from so many other people. I wrote it to help friends and family of people with ME understand better:
https://katarinabrandt.wordpress.com/2018/03/25/helping-me-helps-all-of-us

https://www.meaction.net/resources/reports-and-fact-sheets/

https://www.unrest.film/

https://health.ny.gov/diseases/conditions/me-cfs/

http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf

http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf

http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

This one has good guides in case need to be in the hospital etc https://www.thegracecharityforme.org/documents/

The Fibromyalgia for Dummies book is actually quite useful. It helped me better understand. Understanding better means you can explain it better.

You might compare fibro to having the flu every day if you want a really short and sweet answer.

From what I understand, if the meal plan is followed, the body will "forget" about the allergies in about a year or so and then you can get re-challenged one food at a time. Eventually you'd be able to enjoy all the things you love to eat. I highly recommend his book. While it discussed treating fibro with antiviral therapy (which has done wonders for me), it also has a section on delayed food allergies you may be interested in.

"This is a must-read book for anyone who wants to know the disturbing history of the Chronic Fatigue Syndrome epidemic. Why have the CDC and NIH pretended that Chronic Fatigue Syndrome is a mystery for over three decades?

By the end of this book of inconvenient truths the answer is crystal clear. The shocking news and bold analysis in this page-turner could lead to a revolution in the science and politics of Chronic Fatigue Syndrome, fibromyalgia, AIDS, autism, and many other illnesses."

https://www.amazon.com/Chronic-Fatigue-Syndrome-Epidemic-Cover-up/dp/1984115251/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

The Mayo Clinic has a book on understanding Fibro and with "how can you help" for support people.

https://www.amazon.com/Mayo-Clinic-Guide-Fibromyalgia-Strategies/dp/1893005496

Hopefully that helps

I also had a problem with my parents not understanding my condition, so I placed a copy of [Osler's Web] (http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X) and some CFS-related medical journal articles in their bathroom so that while using the toilet they would have nothing else to do but read about CFS. They've been more understanding since then.

You could try doing something similar with articles describing post-exertional fatigue.

I haven't had experience with this myself, but I heard the author of this book on the Underground Wellness Podcast. Maybe you could find more answers there:

http://www.amazon.com/RETHINKING-FATIGUE-Adrenals-Really-Telling-ebook/dp/B00LGDETD4

Sorry for the length. You had lots of questions and thus I have lots of answers. The numbers really do not mean anything besides helping me write this.

 
 
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1. Propranolol. It is kinda like Propranolol and kind of not I will try to explain.
   
   

• Beta Norepinephrine Nerve Cells are cells mostly below the neck that operate bodily function such as your heart and lungs, your muscles, your digestive system. Some Beta Cells when exposed to higher levels of norepinephrine increase your heart rate and such. Propranolol is a beta blocker, it blocks some (but not all) of these receptors so the higher levels of norepinephrine do not trigger the higher heart rate or feelings of panic.
  
  
• Alpha 2 Norepinephrine Nerve Cells are mostly in your brain. There are multiple types of Alpha 2 receptors. A specific subtype of Alpha 2 receptors are called Alpha 2a which is located at your brainstem, your frontal lobe, your limbic system, and the cerebellum. When the Alpha2a receptor is triggered it increases electrical activity in these brain regions and clears up the electrical noise, this is the desired effect for ADHD. Alpha 2 receptors also serve another function, they tell your body when they have too much norepinephrine and to slow down or stop pumping it out. Alpha 2 agonists make these receptors easier to activate, thus you have less norepinephrine floating around to trigger things like your beta receptors which can increase blood pressure, heart rate, and feelings of anxiety.
  
   
   
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2. Alpha 2 drugs such as Intuniv have been used for ADHD since the mid 80s. During this time these uses were considered off label for things like stimulants were more effective and the FDA signaled this. It is only in the last decade that the drug company has made ER (extended release) formulations that lasts multiple hours, and the ER versions of Alpha 2 drugs are much more effective than the IR versions. Some studies show close (but not superior) effectiveness to stimulants in some but not all aspects of ADHD, thus the FDA approved these drugs as a primary treatment for ADHD and as well as used as a combination . Multiple doctors are not familiar with all the new ADHD medications since many drugs are 12 years old or less. Here is a list of new FDA approved onlabel ADHD meds and when they were approved, Link.
   Here is a list of many meds used to treat ADHD
   
    
    
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3. Yes I have an autoimmune related issue called Ankylosing Spondylitis. My body attacks my joints and causes bone to form there, even if treated it causes chronic inflammation and pain sensitivity. It is in a family of autoimmune problems called Spondyloarthropathy, including JRA, Inflammatory Bowel Disease, Crohn's, Ulcerative Colitis, inflammation of the Tendons, and many others. Many people with Spondyloarthropathy have the HLA-B27 gene, half of my extended family has one form of Spondyloarhtroapy.
   
    
    
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4. I have Sensory Processing Issues since the age of 2, 15 years earlier prior to my autoimmune issues. There are many causes of sensory issues and we are only beginning to start to understand them. Two developments in the last 10 to 15 years is we now have two new medications for specific subset of sensory issues called neuropathic pain. Neuropathic pain is when you experience painful stimuli from things that should not cause painful stimuli. There are many causes of neuropathic pain such as autoimmune I issues (like my AS), diabetes, vitamin deficiency (such as the b vitamins and the omega 3 fatty acids used to repair nerve cells), infection, fibromyalgia and a few others.
   The new developments is the use of SNRIs and two specific anti-convulsants called pregabalin and gabapentin. We have learned that specific serotonin and norepinephrine receptors modulate what is the pain threshold to go up traveling up the spinal cord, thus by using an SNRI we can change what this threshold of pain is thus weakening or eliminating certain types of pain. Oh SNRIs also do other things in the brain not spinal cord that help with pain.
   With the anti-convulsants pregabalin and gabapentin they work a different way. You have multiple types of sensory nerve fibers, and you have specialized subsections for painful nerves called Aδ. These anticonvulsants meds make the threshold to send the pain signal be higher before the pain signal goes up the spinal cord.
   Now two last important things about sensory processing. The other sensory nerve cells not related to pain have something called a myelin sheath that acts as insulation for those nerves. This sheath speeds up the nerve signal but also insulates the nerves so they do not by accident trigger the painful nerve types by crosstalk. Things like inflammation or certain nutrient deficiencies change how the body repairs this myelin sheath and thus you get far more cross talk. The most extreme form of this is Multiple Sclerosis is a condition where this myelin sheath is not repaired and you get painful symptoms and cognitive decline. I am not saying you have MS but just trying to illuminate a point by showing the most extreme form of it.
   The other part of the sensory processing is how you can modulate the nerve signals with things such as pressure (blankets and vest) and other forms of sensory input such as a TENS unit. Remember you have multiple sensory nerves, well they all come to a “gate” where they combine into one type of nerve. Well this nerve can only except one type of input at a time so it prefers to send the nonpainful signal for often this information is more important than the painful signal (things like pressure, balance, temperature etc). This is called the Gate Theory of Pain, and many OT / PT teach ways you can trigger the nonpainful versions like vests and blankets to autistic and asperger children.
   
   This book is a good explanation of treating types of painStahl's Illustrated Chronic Pain and Fibromyalgia
   Here is two samples, Chapter 2: Neurobiology of Pain and Chapter 5: Pain Drugs
   Note he has a similar one for ADHD which I reviewed here and posted sample material Link. Both of these books require some medical knowledge but not a medical degree to understand (late high school, early college level of biology). The pictures, graphs, tables and diagrams are invaluable for explaining everything.
   
   One last thing both of thoses type of meds I listed above the SNRIs and the anticonvulsants are often given to Aspergers or Austistic kids anyway for they work as mood stabilizers, depression, and many forms of anxiety such as social anxiety disorder, panic disorder, and generalized anxiety disorder. Those two types of meds reduce symptoms in about 50% of patients.
   I am personally on Cymbalta, I was put onto it this year when I switched docs for my autoimmune problem, my new doc knew this type of stuff but my old doc did not for it was far too recent for him.
   
    
    
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5. Immune problems modulate the brain. When your brain notices lots of immune triggers it thinks your body is sick and it starts doing things to conserve energy but these things are anti-productive for focus, planning, and mental flexibility.
   While some immune responses repair the brain, others when overexposed can actually be neurotoxic.
   Think of you having a cold or flu, were you really wanting to solve math problems during that time? Not all that mental grogginess is the fever talking. Autoimmune problems do not cause ADHD, they just make ADHD worse. Autoimmune problems seem to be more common in Asperger/autistic patients.
   Furthermore we know that chronic inflammation and/or chronic pain can lead to depression and depression causes changes in the brain that make ADHD worse. In fact we now have neuroimaging that if this depression or chronic pain is untreated it leads to reduction in the gray matter in the brain in specific spots and half of those spots are ADHD affected brain regions. (The brain regions connected to ADHD that are decreased are the Dorsolateral Prefrontal Cortex, the Anterior Cingulate Cortex, and the Striatum of the Basal Ganglia; non ADHD regions are the Brainstem and the amygdala which has to do with emotions, pain, fear)
   
   Good Luck with your Son.

See a different GP each time until you lock onto a good one, quite possibly one that is the hardest to find appointments for. I've had more luck with younger docs over the years, anecdotally. Still, there will probably be nothing at all they are allowed to do for you, with CFS, presuming your standard, basic blood tests are even vaguely normal. In my health authority area, anyway (Warwickshire), supplements (e.g. CoQ10) that were previously prescribed are now blacklisted (and ADHD provision no longer exists at all, but that's a separate whinge).

You'll need a good, very supportive GP on your side if it comes to claiming Employment Support Allowance (the forms and 'medicals' for which seem tailor made to have blind spots for CFS). If you thought convincing your family/GP was hard...

Anyway, if (as I see from some of your other posts) you do have POTS symptoms, you may be able to get specialist treatment and prescriptions to help with that. A friend of mine, up north, does, although I think she was perhaps a little lucky, postcode wise.

Regarding CFS in general, I've recently seen it described as a immune mediated brain disorder with strong links to the gut, and I quite liked the ring of that. There are usually major metabolic disturbances, if one is able to look closely enough, high oxidative stress (directly induced by exercise), inflammation, dysautomnia, gut biome imbalances/derangement, etc. Point being is that it seems to be a multi-system issue, where the body's balance is turned inside out, like an inverted umbrella.

Each of the previously mentioned components (nervous system, immune system, gut, metabolism) are kind of like like spokes that have been bent backwards. This is good, in that you can attack the problem from many potential angles, and possibly get little benefits from each intervention. But to put the whole lot right at once may require much more effort and co-ordination, as with an umbrella, and may be more prone to breaking in future, it seems (or already was, but hadn't been stress tested previously).

Edit: oh, and most mental/brain diseases may turn out to be similarly linked to gut dysfunction, it seems, for recent research directions. With depression possibly a an inflammatory state of the gut, feeding back to the nervous system, and back around, in a closed loop. So that diagnosis may not be far off, even if the available treatments still are.

Some specific notes:

Don't be encouraged to push yourself into exercise (via GET, etc), even when if you feel spontaneously great. A low level, and outside time in trees and sunlight are great psychologically, hormonally. Don't turn down CBT (or anything) out of hand, if offered. Show willing, if able, I guess. I've had neither, but if anxiety/thought processes are tripping you up, in particular, then sensible to address them. Meditate, even. Certainly stress can be a big drain of bodily resources.

CFSs are in desperate need of the nutrients (minerals, vitamins) from vegetables. The 'Free From' supermarket range is a great concession to the acknowledgement of food intolerance, and fantastic for those who have Coeliac disease, but tend to be even worth than regular processed foods, in terms of being empty calories, very poor nutrient density, etc. Try to make a best effort to increase intake of any vegetables that you already like, and find ways to prepare new others that might be more palatable. It's a long, ongoing process and it's hard work, at first. I only managed to start doing this properly myself after dietary exclusions gave me a whole new lease of life, a couple years back. And preparing food does use a substantial proportion of that extra energy, on most days, but worth it. Basically, something like paleo, or "stone age diet" seems to be the way to go, which aren't far off SCD (specific carbohydrate diets).

Get nutrients from a careful supplement program too (essential if diet is poor). Can be complex to implement with multi-faceted personalisation that you'll need to implement. Check out Dr Sarah Myhill. She's based in Wales, the only UK CFS specialist doctor I know of who seems to be worth a damn. I kick myself that I didn't manage to book in with her a few years back, before she became too inundated, after her book: "Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria, Not Hypochondria" - highly recommended, and much of that same great, well rounded info is available via her website.

To go into even more detail, including most of the many relevant supplements and an overview of the various theories and treatment plans for CFS, check this cheep ebook.

While bacterial and yeast overgrowth of the upper gut definitely does happen, it seems to be something that is overly jumped at, perhaps because of how uncomfortable and distressing GI symptoms can be. Certainly an aunt of mine, in the USA, claims to have been cured from her years long bout of fatigue after being treated with a targeted prescription anti-microbial/anti-biotic (Xifaxan, I think, plus some other things), but nuking the whole gut seems like burning down a village to save it. I've not found sufficient evidence for such an extreme measure, myself.

I've had IBS (D and C), related to food intolerances: diary, egg, yeast (confirmed by Yorktest IgG testing) and most notably, histamine intolerance. Cutting high histamine foods is one of the trickest, but easily most powerful interventions I've done. A rash after eating yogurts (a fermented product) flags this up for you too, in my mind. High (serum) histamine (via intolerance or mast cell activation disorder - MCAD) can cause all manner of crazy symptoms, from dysautomnia, halucinations, sleep disturbances, rashes, anaphalaxis, etc. If the upper gut is damaged and liver metabilism is impaired then histamine might not be getting broken down fast enough, it seems. Also, dysbiosis can contribute massively, and in any case, it seems quite common in CFS, especially along side other food intolerance and/or 'leaky gut'.

I'm suspicious of anti-acids - stomach acid is needed to sterilize ingested food, to help keep the small intestine free of microbes and for digestion of food. Poor break down may slow transit and feed overgrowth/imbalance, causing bloating (and ironically heart burn).

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Sorry, I've blurted a whole lot there. Hope some of it is useful and good luck. Given that you've not been ill for long, and you had sudden onset, I think your chances of spontaneous recovery are probably as good as they can be, anyway. And the field of study and treatment currently seems to be spooling up quite fast, now. :-)

I was diagnosed about the same time as you (will be 27 in the spring): Around 22 and in college. I also have a fused spine (L4-S1). The anti-depressant route never worked for me. The worst drug I was ever put on was Lyrica. Granted, I was on a ridiculously high dose (300mg twice a day), but still. There's a whole almost 2 years of my life I literally do not remember. My husband and I can joke about it now, but I know be being a zombie for so long was terribly hard for him. The drug that saved my ass was Savella. Bless that medication. I am currently off of it as I am pregnant (which was a fight all on its own...). I read lots of studies that suggested that pregnancy can throw firbo into almost total remission, and thankfully, that's been true for me. It will come back after the birth, but there's a chance it won't ever be as bad again. (Not to say you should go get knocked up, just sharing my experience. ;) ) I have joined ever fibro support group I could find, read endless books (This one was the most helpful for me: http://www.amazon.com/Fibromyalgia-Chronic-Myofascial-Pain-Survival/dp/1572242388/ref=sr_1_sc_3?s=books&ie=UTF8&qid=1320687580&sr=1-3-spell). Mostly I learned as much as I could so I could be an advocate for myself. I've learned not to be afraid of "firing" doctors. Pill pushers and pill scrooges make me equally angry. Try to be as informed as you can, but don't lose hope on bad days! My doctors finally convinced me to get a service dog almost 5 years ago, and that has made the single biggest difference in my life. We went to college together and he saved my butt many times. :) I'm happy to share any info on that front if you're interested. Best of luck!!!

EDIT: Forgot the companion book, it was also a wonderful resource when I was first diagnosed: http://www.amazon.com/Fibromyalgia-Advocate-Devin-Starlanyl/dp/1572241217/ref=pd_sim_b_1

EDIT #2: It should be noted that neither book is the most up-to-date, however the majority of the info presented is still spot-on and worth the read. My copies are both shot to hell with notes and highlights. ;)

If you want a better understanding of FMS, try to find a copy of this workbook. It's $25 new, but I got a near-mint copy on half.com for $4 including shipping. My wife said it's like reading a diary that she doesn't remember writing.

Yeah, it can be pretty painful - as my sister eloquently put it, "wow, your muscles are fucked up!" I've stopped asking her for help, because she either refuses to do anything or lectures me if I don't go to the gym on a near-daily basis to "help myself." My trigger points aren't as sensitive as yours, but a decent amount of pressure makes me see stars. I use this book and what I've learned from her to do myofascial release at home, and it really helps. The muscles in my neck used to get so tight that they would spasm and lock up, and I wouldn't be able to move my head for days. Using these techniques have kept it from happening for months, and it used to happen at least once a month.

I continue to battle with depression, so believe me, I know what you're going through and it sucks. However, just remember not to listen to your thoughts too much. It's your ego fucking with you.

I've also heard about parasites being cause of depression in the book, This Is Your Brain On Parasites.
And I have wondered if CBD wouldn't kill the parasites over period of weeks, or moonths(?)
In the mean time, here's a book for you

(https://www.amazon.com/33-Ways-Get-Rid-Parasites-ebook/dp/B00CNWVUPC/ref=sr_1_2?s=digital-text&ie=UTF8&qid=1526131243&sr=1-2&keywords=parasites+cleanse)

I would check out Matt Stone's books. This book changed my life and could probably help you.

Hello, I'm also a chronic pain patient, as is my husband. You bring up many valid concerns. I have been researching the autonomic nervous system in regards to my illness (ME/CFS and Mitochondrial Disease) and also in regards to my husband's undiagnosed pain syndrome.

My opinion of the answers the researcher is giving are mixed. There are some aspects of their short explanations that I understand a bit better than someone who may have not been investigating the autonomic nervous system. The researcher is not really communicating very well about all the ins and outs of the autonomic nervous system, which I guess is difificult with an AMA. In addition, they are using some very inflammatory language about rewards and behavior, that is not helping their cause. I'm not 100% sold on all of their methods and conclusions and I'm generally skeptical when "psychologists," try to tackle these kinds of problems.

However, I encourage you not to "throw the baby out with the bathwater," so to speak, when it comes to the idea of being able to "hack" the autonomic nervous system through changes in routine and attitude. There's a field of study called "Neuropsychiatry" and a similar one called "Psychoneuroimmunology." Both are beginning to understand the autonomic nervous system as both a "top down" system, and a "bottom up system," meaning that communication from the interior body impacts sensation, but it also flows the other way, where sensation (which can be physical or emotional) can impact the structure of the brain/nervous system as well. They often use the term, "feeling states," instead of physical and emotional sensations, and don't differentiate between the two.

In the researchers defense, I don't think they're trying to insinuate that anyone "caused" their own pain, or is seeking rewards in the way you are describing. However, I also think they gave an oversimplistic and rather dismissive response to the very complex issue of opiate pain meds. I wonder if there is a language and cultural barrier at play in the mix.

I don't know anything about Loin Pain Haematuria Syndrome, and don't know if any of this stuff is applicable to your situation. But, if you're interested in understanding some of the ins and outs of the autonomic nervous system in relation to pain, I highly recommend checking out Dan Neuffer's book, CFS unraveled, which has info helpful for those not only with CFS, but also chronic pain. He also has a website with a free video series that describes much of what's in the book. It's called ANS Rewire, and though I believe you have to sign up to get access to the videos, they are all free.

To understand the idea of "feeling states" in relation to brain structures and how they both function and can be affected, I highly recommend this video by neuro-psychiatrist and professor, Mark Solms. It's about an hour long, but it will change your understanding of how your mind works in regards to pain, and other things as well.

I appreciate how challenging your situation must be, and I wish you well!

> Fibromyalgia for Dummies

Thanks. I will check that out.

https://www.amazon.com/Fibromyalgia-Dummies-Roland-Staud/dp/0470145021

I am going to throw my support behind Cymbalta, too. A few side effects getting used to it, but a week or two in and it helped a great deal, and I am on a really low dose of 60 mg/day. It is also an anti-depressant. I tried Lyrica a year or so ago, and it worked amazingly well for pain, but the side effects were too much for me.

Get your bf to give you a good massage, especially in the neck area. I get so tensed up there, that I need a professional to beat my muscles back into shape. (Also, no bf to make it free).

There is also a book I found, and bought, online through Amazon: http://www.amazon.ca/Breaking-Thru-Fibro-Fog-Fibromyalgia/dp/0986788104/ref=sr_1_1?ie=UTF8&qid=1373256918&sr=8-1&keywords=fibro+fog The book outlines a lot of interesting facts, like how Fibro symptoms are reported all over the world by all kinds of people, from all walks of life- how could they all be 'faking' the same set of symptoms?

Edit: I have noticed taking a lot of vitamin D also helps. Around 2,000 to 4,000 IU a day. No idea why it helps, but it seems to decrease pain.

Take a look at this:

http://www.amazon.com/Misdiagnosed-Adrenal-Fatigue-Steven-Zodkoy-ebook/dp/B00J7XXPEY/ref=sr_1_1?ie=UTF8&qid=1413840868&sr=8-1&keywords=Zodkoy

There's a section on PTSD patients that blew my mind. I see this doctor regularly even though he's in NJ and I'm in CT and he's helped me considerably.

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