Reddit mentions: The best chronic fatigue & fibromyalgia books

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’ve collected these over the past couple of years, and these are all of the best ones I’ve found:

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

This one is very short and effective. It helped my extended family understand the severity of ME/CFS:
http://solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf.

This book helped me and my family understand, but obviously it’s a much longer read:
https://www.amazon.com/dp/0897932803/ref=cm_sw_r_cp_api_bOIxBb3163914

This one Is helpful for friends and family of people with ME understand better, as well as helpful for people with ME to get a better understanding of the condition and experiences patients go through:
https://katarinabrandt.wordpress.com/2018/03/25/helping-me-helps-all-of-us

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

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

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 but also is super helpful to help people understand your limits and light/sound sensitivity: https://www.thegracecharityforme.org/documents/

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. ;)

I can really relate- I've tried so many things and kept things that haven't helped, and thrown them out once they expired. Probably thousands of $$. I rarely have luck with supplements- I find they almost all increase my brain fog. The thing that helped me most was IV Glutathione. I'm one of those who are extremely sensitive to anything I ingest, so IV's have been better.

There's a woman who wrote a book about supplements and CFS. She has a private facebook group called "Fellow Travelers," and there are others there who have had some improvement from the stuff she recommends. She worked with a naturopathic doctor to come up with the list. One of the things she recommends most often is Ubiquinol. It's a highly available Mitochondrial targeted antioxidant. If you join her facebook group, she gives you the supplements list for free. If you're interested in her book (it's short- easy to read for those of us who can't so well), you can get it on Amazon. It's called Find Your Way: A Guide to Healing While Living With Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia, by Clarissa Shepherd

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.

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.

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

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.

If you want to read more, here is a great place to start.

Dr. Stephen Stahl's of UC Sand Diego Illustrated series

Illustrated ADHD

Illustrated Chronic Pain and Fibromyalgia

The remaining 6 books of Stahl's Illustrated

Dr. Stephen Stahl is one of the foremost experts on something called psychopharmacology, aka how we think these drugs work and what makes one drug different from another even if they are part of the same class. He writes two textbooks meant for doctors,

• Dr. Stephen Stahl's Essential Psychopharmacology which explains how the meds work and a general understanding of the disorders with the most recent science, and
  
  
• Dr. Stephen Stahl's Prescribe Guide which covers 3 to 8 pages per drug of everything a doctor needs to know about the medicine and how best to do things like titration, what specific side effects usually mean, if this med fails do you augment it with a second med or do you switch etc.
  
  Now while those are awesome two books, the Stephen Stahl Illustrated Series is much of the same content but at a Advanced High School Student / Basic Undergraduate Level of Biology. That said it is jam packed with information, and you will be like absorbing amount of information. Take for example these sample pictures from the ADHD book
  
   
  
   
  
   
  
  Do note most of the ADHD meds can help with some aspects of sensory processing but usually not as much as the SNRI or Gabapentin / Pregabalin.
  
  SNRIs stand for SERT Reuptake Inhibitor+NET reuptake Inhibitor.
  
  
• Now many SNRIs have different ratios of how they block SERT and NET, some block a lot of SERT with little NET, some block a lot of NET and a little SERT, and some are in the middle.
  
  SSRIs stand for Selective SERT Reuptake Inhibitor, they have little to no effect on norepinephrine and dopamine
  
  NRIs stand for selective NET Reuptake Inhibitors. Note they are not called SNRIs for that is a different thing and thus the selective part is dropped from the name. NRIs are also known as NERI (using two letters for the NET) or adrenergic reuptake inhibitor (ARI)
  
  
• An ADHD medication Strattera is a NRI
  
  
• In most brain areas Dopamine is controlled by a reuptake protein called DAT (I am talking the brain stem, the mid brain, the striatum, the emotional brain), but in the prefrontal cortex NET actually controls the reuptake of dopamine so medicines that inhibit NET also increase dopamine in some brain areas but not others.
  
  
  NDRIs are medicines that selectively block the NET and DAT reuptake transporters. There are two styles of NDRIs, temporary NDRIs that only last in your blood for a few hours or minutes which often have stimulating effects, and the long acting NDRIs that stay in your body for days and require you taking the pill for several weeks before they are fully in effect.
  
  
• Concerta, Ritalin, Focalin are of the first category and are an ADHD Stimulant whose active ingredient is called Methylphenidate
  
  
• Wellbutrin, Zyban, Buproprion and a few other names for the same drug is a slow acting NDRI. It is used officially for depression as a monotherapy or an adjutant to SSRIs (it often counter acts any loss of libido or erection problems that sometimes occur with SSRIs) as well as a quit smoking medicine due to its NDRI effects and its effect on a specific acetylcholine receptor that is related to nicotine. That said we know it treats ADHD but the amount of people that benefit from Bupropion is smaller than the amount of people who benefit from Methylphenidate or Amphetamine.
  
  There is another class of stimulant medication for ADHD that are Norepinephrine and Dopamine releasing agents. Amphetamine fall in this category. How they work is complicated and I will not explain here but they work partly as reuptake inhibitors with slightly different ways than Methylphenidate but also they promote norepinephrine and dopamine release by activating a specific receptor called TAAR1 which then in turn modifies things inside the nerve cell and in some combinations of those things inside the nerve cell can cause Dopamine and Norepinephrine release.
  
  
• Amphetamine medicines for ADHD include Adderall, Dexedrine, Vyvanse, Evekeo and others. Do note that the success rate of Amphetamine and Methyphendiate are practically the same but even though they are almost the same they treat different people. About 2/3rds of ADHD people respond well to methyphendiate meds, about 2/3rds of ADHD people respond well to Amphetamine meds. But overall if you try both classes of meds you can raise the success rate to 80% of ADHD people for some people only respond to 1 of the 2 types of medicines, and some people respond to both types.
  
  Alpha 2 Agonists are artificial forms of norepinephrine but they do not trigger all the types of receptors that norepinephrine can trigger. There are 9 main receptor types of Norepinephrine and they can be divided into 3 classes. Alpha 1, Alpha 2, and Beta. These classes fine tune each other with Alpha 2 often doing the opposites effects of Alpha 1 and Beta. Well the Alpha 2 receptor class, especially Alpha 2a is important for strengthening the electrical connections in the frontal lobe, but Alpha 2 is also used in other brain and body areas related to blood pressure, emotion and emotional control, and also to figure out what is pain and what is not pain.
  
  
• Intuniv is a long acting form of Guanfacine and is an Alpha 2 agonist but it is much stronger on the Alpha 2a subtype. Kapvay is a long acting form of Clonidine and is roughly equal activation of the Alpha 2a, 2b, and 2c subtypes. Both of these were originally used for treating blood pressure, both of these can treat ADHD. Intuniv often works better for ADHD for too much triggering of Alpha 2b and Alpha 2c receptors can make you tired. It is mostly the Alpha 2a and 2c receptors and the combination receptors these Norepinephrine receptors form with other neurotransmitters (these are called heterodimers) which are involved in pain processing. Thus usually Kapvay is a better pain medicine, ptsd medicine, detox from specific drugs medicine.
  
  ----
  
  So as you can see almost all ADHD meds mess with the norepinephrine system in some way and this can often help sensory processing but not to the same extent as SNRIs on average (but everyone is different and finding the right meds for you is trial and error).
  
  This is because in certain parts of the body your brain uses both serotonin and norepinephrine receptors and the cross talk between these receptors to determine what is temporary pain or noxious stimuli and what is long term pain but you should ignore and endure it (for example you are running for several miles, do not activate the pain receptors right now) and so on. Thus the effects of often SNRIs work better than SSRIs or NRIs alone.
  
  Besides the cross talk between serotonin and norepinephrine there are also combination receptors serotonin and norepinephrine form together with other neurotransmitters. For example Alpha 2a forms a combination receptor with the μ-opioid. u-opioid is one of the receptors that blocks pain by responding to your body's natural endorphins (endorphine stands for body made morphine) They can also be triggered by many opiod pain mediciations and too high of doses or you taking these medications when you are not sick can lead to addiction.
  
  Picture
  
  Picture 2
  
  Having these combination receptors allow both neurotransmitters to trigger an anti-pain response but what also happens is dependent on what neurotransmitter was triggering the receptor, how strongly it was triggering the receptor, and other factors involving the nerve cell. Often triggering the alpha 2a unit combine with the u-opioid tells your brain that even if I get endorphins it is not something where I am getting high but instead some other reason why it was advantageous to trigger these receptors. Thus do not try to recalibrate my brain for addiction and instead just block the pain.
  
  One of the things different about endorphins (made inside your body morphine) and opiod drugs like morphine is the amount and how long it stimulates specific receptors. Think of it like this for an analogy, one is you visiting a all you can eat buffet once a week and you still have portion control. The other is like going there every day and your body does not have an appetite shut off switch so you then overeat.
  
  ----
  
  Honestly most of the American recent prescription pain killer opiod addiction can be greatly reduced if two things happen.
  
  

1. Doctors understand how these drugs work by reading books such as I said above. Opioid medicines should ony be used as a temporary measure.
   
   
2. At the same time you treat them with an Opiod medication began a switch to a longer term chronic pain management such as adding a SNRI or Gabapentin if its going to be a neuropathic pain option, and if its a temporary problem like tissue injury treat the tissue, make sure the inflammation is low, and wean them off the opiods.

Here are all the local Amazon links I could find:


amazon.com

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amazon.ca

amazon.com.au

amazon.in

amazon.com.mx

amazon.de

amazon.it

amazon.es

amazon.com.br

amazon.nl

amazon.co.jp

amazon.fr

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"One of the earliest and most thoroughly-researched volumes on the emerging Chronic Fatigue Syndrome -- at the time called "Chronic Epstein Barr Virus (EBV) Syndrome." This powerful book is the result of over two-and-one-half years of investigating and reporting the Chronic Fatigue story at the very beginning of the epidemic.

Writes the author, "While reporting the story you are about to read, I became convinced that governmental health agencies have done everything in their power to ignore, suppress, and even actively cover up the fact that there is a new epidemic sweeping the United States-that claimed Gilda Radner as one of its first fatalities." Here, compiled into one volume, is Neenyah Ostrom's compelling and still-relevant research."

https://www.amazon.com/What-Really-Killed-Gilda-Radner/dp/0962414212

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.

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

Thanks for the reply.

As far as I can tell, 500mg shouldn't cost you more than about $50. But if you can buy hemp flower in your state, MAKING IT AT HOME is SUPER simple. And CHEAP. Basically you just add the plant material in olve oil and put on low heat for a few hours.

Private message me if you want the recipe.

Also, I've been reading about how parasites are a huge problem, and can CAUSE joint/hip/back pain. And the remedies are simple:

https://www.amazon.com/33-Ways-Get-Rid-Parasites-ebook/dp/B00CNWVUPC/ref=sr_1_2?s=books&ie=UTF8&qid=1527492293&sr=1-2&keywords=parasites&refinements=p_n_feature_browse-bin%3A618073011

> Fibromyalgia for Dummies

Thanks. I will check that out.

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

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

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.

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.

Here is the mobile version of your link

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.