(Part 2) Top products from r/cfs

I am exhausted at the moment and need to get to bed but for various reasons I would love to experiment with GHB.

• Is an antidepressant
  
  
• Is a nootropic
  
  
• Is a sleep aid
  
  
• Increases muscle mass
  
  Here is [a post] (https://redd.it/3b81l4) I made a couple of years ago. I'll clean it up, and add a few more comments if I am more functional tomorrow but I wanted to let you know I think GHB is well worth researching:
  
  –––
  I have suffered from insomnia all my life (either that or sleeping for 22 hours straight). It has had a major impact on my life. One interesting book I found on the subject is Insomniac
  by Gayle Greene, a professor of literature and women’s studies at Scripps College.
  
  
  >I can't work, I can't think, I can't connect with anyone anymore. . . . I mope through a day's work and haven't had a promotion in years. . . . It's like I'm being sucked dry, eaten away, swallowed up, coming unglued. . . . These are voices of a few of the tens of millions who suffer from chronic insomnia. In this revelatory book, Gayle Greene offers a uniquely comprehensive account of this devastating and little-understood condition. She has traveled the world in a quest for answers, interviewing neurologists, sleep researchers, doctors, psychotherapists, and insomniacs of all sorts. What comes of her extraordinary journey is an up-to-date account of what is known about insomnia, providing the information every insomniac needs to know to make intelligent choices among medications and therapies. Insomniac is at once a field guide through the hidden terrain inhabited by insomniacs and a book of consolations for anyone who has struggled with this affliction that has long been trivialized and neglected. – source (amazon.com)
  
   
  
  She also has a blog, www.sleepstarved.org containing information for the sleep-deprived.
  
  You can read an excerpt of the book [here] (http://well.blogs.nytimes.com/2008/03/21/the-wretched-life-of-the-insomniac/).
  
   
  
  In my younger years I had great deal of difficulty falling asleep. Now I fall asleep easily enough but wake at ridiculously early hours – this morning I was up at 2:30am. Anyone have any solutions?
  
   
  
  Edit: One interesting idea to come out of Greene's book was that if bipolar is a spectrum disorder, sleep disturbances may be on the tail end of the spectrum. As a child I drove my parents crazy staying awake at all hours. Now I rather fear that sleep deprivation is making me crazy : (
  
  Another mention Greene makes is of GHB, the only efficacious medication she found. It is purportedly also a potent antidepressant. I used to buy it over the counter to use as a sleep aid (I had no knowledge and no interest in using it recreationally) It was a godsend. Sadly now it is illegal (possibly Greene suggests to protect the lucrative sleep medication market) Used therapeutically, the drug was such a game-changer, in the past I toyed with the idea of a) learning to manufacture my own GHB from scratch or b) emigrating permanently to a country where GHB it is still legal. Has anyone else had any experience (non-recreational) with GHB.
  
   
  
  Edit 2: A review of GHB: The Natural Mood Enhancer
  by Ward Dean, M.D., et al.
  
  http://ceri.com/rev-ghb.htm
  
  From the review:
  
  >Many readers will be familiar with GHB (gamma-hydroxybutyrate) from articles previously published in Smart Drug News. Many readers may have read the book Better Sex Through Chemistry by John Morgenthaler and Dan Joy, which contained a large and comprehensive overview of the use of GHB as a prosexual compound. Given such exposure, a great many Smart Life News subscribers may be tempted to regard this new book on GHB as redundant. However, nothing could be further from the truth.
  >
  >The authors certainly cover all the pertinent nuts-and-bolts issues of GHB usage. They discuss numerous indications for GHB, including narcolepsy, depression and relaxation. They provide an in-depth review of the scientific literature on GHB’s use in treating drug and alcohol withdrawal and addiction. They also discuss GHB’s ability to stimulate human growth hormone (hGH). One application I found of particular interest is GHB’s use in women to facilitatate labor and childbirth. This use truly speaks to the truth about GHB’s safety.
  >
  >For the record, I have used GHB as a sleep aid and as a prosexual supplement. In both cases, I have found the substance to be effective and safe. After hundreds of doses, large and small, I’ve not a single complaint. I have personally compared notes on the use of GHB with dozens of people and have referred thousands to a variety of sources for the product.
  
  Edit 3: You can get a flavor of Gayle Greene's take on GHB using Google's search inside a book function. For some reason I can't link directly but if you click on the [top link a simple search provides] (
  http://www.google.com/search?q="Gayle+Greene"+GHB) they will take you there
  
  Edit 4: GHB: The First Authentic Antidepressant An interesting article about GHB's use as an antidepressant.
  
  

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/

Lots of great advice here already. I'd also suggest keeping a diary--which sounds like more work, I know--but in the long run, it will help you evaluate what helps and hurts your fatigue and pain management. You can keep it simple, just rate how you're doing on a scale of 1-10 in categories like overall fatigue, brain fog, joint pain, etc.

It really sucks that your parents don't understand what you're going through. If you haven't already, it might be time for an "intervention" of sorts. Show them this post. Print out a few articles for them to read. Tell them in no uncertain terms that while being tired and achey might seem like a minor issue, the chronic nature of your symptoms is actually a huge problem.

An example most people can relate to: having a cold with a cough. It's annoying. Usually a cough interrupts a few nights worth of sleep. But if it lingers for a week, or two, or more--the lack of sleep compounds on itself, the cough never improves, and at that point all anybody wants is the cough to go away. It starts to drive a person crazy. And that's nothing compared to 24/7 365 fatigue and pain.

If you can get your parents to understand and give you greater support, wonderful. If not, find someone else who can be an advocate for you--a friend, another family member, or a trusted teacher. Bring that person to your doctors appointments so they can listen, ask questions, and chime in when you might be otherwise overwhelmed. I would have suggested your boyfriend, but it sounds like he's overwhelmed himself at the moment.

Another thought about doctors: you may need a new approach. Set small goals (i.e. reduce the frequency of afternoon naps), see what else they can offer besides medication. If they're inflexible and won't work with you and your needs, consider a new doctor.

Lastly, you may find that certain therapies or treatment alternatives don't work alone, but may work in combination. You have a lot on your plate, and it must be so overwhelming, but the only way you're going to find relief is to keep trying new things. I'd recommend checking out The Chronic Pain Solution for additional ideas. The author maps out everything from surgical intervention to posture practice to yoga, and more.

Oh, and whatever you do, stagger new treatments. I once started 6 supplements the same day and couldn't figure out which one(s) were working and which ones made me feel crappy. I now give myself a week (at least) to adjust before layering in another treatment (this goes for things like gentle physical exercise, mental puzzles, etc. as well). The diary will help you track your results.

You've done great work so far. Take a moment to thank yourself for being proactive about your situation. It's a tremendous feat, and you should be proud!

I have a little something to add to this.

There is this book called Plants and the Human Brain. It's pretty technical and arduous so I only read about half of it. But the take home message of this book is that there's nothing righteous about plants. Plants don't make the compounds that they make for our benefit, but for their own reproductive purposes.

Basically plants and insects co-evolved for a long long time - much longer than we have been around. So during this time there were no mammals, no birds, just insects. If you are a plant that uses flowers to reproduce you need to be able to manipulate insects to do the pollinating for you. At the same time you want your leaves not to be eaten by insects. So you make chemicals that you can use on insects. On one hand you want chemicals that deter insects, like poisons, for use where you don't want to be eaten. On the other hand you want chemicals that attract or reward insects for doing your bidding, like nectar or scents.

The reason why all these drugs that plants produce work on us is only because we have similar nervous systems to insects. They were never intended to be used on us, we just haven't been around long enough for plants to evolve the mechanisms. Plants and insects go back much further in time though, and it's our distant relationship to insects that gives us the similarities in nervous systems.

For your example of the orange tree, it's not making calcium for our bones. The orange tree doesn't care about our bones, it's doing it for its own survival and reproduction. So when we benefit from plants, that's just lucky for us.

The book is Plants and the Human Brain by David O Kennedy

https://www.amazon.com/Plants-Human-Brain-David-Kennedy/dp/019991401X

I found physical therapy made my fatigue worse. Yes I got stronger and able to stay on the treadmill longer, but it translated into more time in bed when I wasn't at therapy.

The widespread chronic pain and migraines can be controlled through appropriate antidepressants. Antidepressants will also help with anxiety. They can also help with sleep issues.

Have you tried birth control pills to regulate your period? If you do ask for ones that carry the least risk of blood clots. While all of them can increase clotting some are worse than others. I think it's more related to the type of progesterone as opposed to the dosage. Injectable birth control would also reduce your periods.

Have you been tested for thyroid antibodies? They ruled out thyroid in my case until I pushed for an antibody test. I read a lot of books about thryroid and pushed to have this test done despite normal TSH/T3/T4 because my symptoms fit so well. Found out I had Hashimoto's and now see an endocrinologist. He isn't giving me anything for it but I found out selenium has been proven to help people with Hashi's, and it has helped me a lot.

Consider that you might have food sensitivities/allergies that are making you ill. Have you tried an elimination diet? They're not easy to do but you might learn something. I actually went through the whole "yeast elimination" thing for a few years. Here is one book on the subject. They can't really test for yeast, but if you follow the recommendations and take an antifungal and feel better then it's probably yeast.

Related to thyroid and yeast, people have reported success with the GAPS diet. I haven't tried it so I can't say how well it helps.

As for sleeping, I just reread "Sleep Right in Five Nights". The section on medication is dated at this point, but all the other tips about managing your sleep are still valid. Counterintuitively, sleeping less will make you sleep better and you will feel less tired. But I understand what it's like to be so tired that you need to nap twice a day even after a full night's sleep.

I am sorry you are suffering. Being sick sucks. Good luck.

I've barely started reading it, but someone here suggested the book "How to be Sick" by Toni Bernhard.

I didn't have any long-term friends when I got sick, because I'd gotten sober just 3 years earlier and had to stop seeing pretty much all the friends I still had. Then I moved to a rural area 1300 miles away.

What helped most was (accidentally) finding a forum with people who had a similar interest. I made a post about a problem I had, and stuck around to read other posts because I found it interesting. Because I went regularly, I ended up becoming friends with several other regulars. We don't chat much, but they are available if I need them (which is both less than I want, and less than I used to need).

This is the one: https://www.amazon.co.uk/Learned-Optimism-Change-Your-Mind/dp/1400078393

Good luck. Also, for the depression cure, one of the steps he recommends is exercise. Obviously that won't work for us. Everything else he recommended helped me, even CBT. Note that this is NOT the same CBT that was done in the PACE trial.

Also, Myhill's book on Mitochondria really was a game changer for me. It took me almost a year to read it because on some days, I could only read a paragraph at a time. I don't know how much research you've already done, but at the time, I really knew nothing about ME/CFS and the book was a huge help. https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Fatigue-Syndrome/dp/1781610347

virtual hugs

Definitely worth looking into mast cell and histamine issues if Zyrtec helps you. Have a read of this https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615 and check out his YT video if you want to learn about MC disorders.

One of my issues that I've had to deal without throughout my diagnosis with CFS is copper toxicity. Ann Louise Gittleman wrote a book about copper imbalances called "Why Am I Always So Tired?"
http://www.amazon.com/Why-Always-Tired-Correcting-Breakthrough/dp/0062515942
It talks about how vegetarian diets are high in copper and low in zinc - thus creating a mineral imbalance. I'm not saying that copper is everyones issue but correcting my copper imbalance gave me some symptom relief.

pitsspecials is probably a sockpuppet of "sciencewatcher". He talks just like him. Just ignore him. He is just here to promote his own brand of quackery. He changes username whenever his current one falls in disrepute.

Edit: his name is David Jameson, he has published a book on ME/CFs titled "Mind-Body Health and Stress Tolerance" (no further comments needed) and he also has a homepage: mind-Body-Health.net

He is also prolific editor on Wikipedia, working tirelessly to ensure that CFS is portrayed in line with his brand of quackery.

This one?

http://www.amazon.com/Chronic-Fatigue-Syndrome-Jesse-Stoff/dp/0060922605/ref=ntt_at_ep_dpt_1

Looks like a 1992 edition; is there a newer one?

http://www.amazon.com/Root-Canal-Cover-Up-George-Meinig/dp/0945196199

I had 'CFS' a couple of years ago, and it cleared up immediately with tiny amounts of desiccated thyroid. I'm now taking quite a large amount of desiccated thyroid and thyroxine, but I'm in apparently perfect health. (Full time job, cricket both days of the weekend). No symptoms of thyrotoxicosis at all.

Even my GP agrees that I seem to be fine, although he's worried by my 0 TSH and high Free T4, but every time I try to drop the dose the lethargy, depression, aching muscles etc come back.

Could you tell me what you think of Gordon Skinner's 'Diagnosis and Management of Hypothyroidism'? It's aimed at doctors but very light-hearted in a terribly serious way. (https://www.amazon.co.uk/d/Books/Diagnosis-Management-Hypothyroidism-Gordon-R-B-Skinner/0954774515/ref=sr_1_1?ie=UTF8&qid=1502359925&sr=8-1&keywords=skinner+diagnosis+and+management)

Skinner reckoned that you could have the symptoms of hypothyroidism without having funny blood hormone levels, and that this condition would respond to thyroxine. He published an open trial with stunning results, which has sunk without trace. There was an attempt at a PCRT by some brave Scottish GPs, but they buggered it up and got no effect.

He is far from being the only person to claim this. I originally came upon and tried the idea through John Lowe treating Fibromyalgia with T3, but there are many others. (https://www.amazon.com/Metabolic-Treatment-Fibromyalgia-John-Lowe/dp/0914609025) Despite being a chiropractor, John Lowe seems to have been the most careful and thoughtful of all the people who've ever looked into this, and he also published papers, but all in bloody chiropractor magazines that I can't find.

In fact it looks to me as though the balance of the evidence in the medical literature is in favour of the idea.

I actually made a subreddit https://www.reddit.com/r/thethyroidmadness/ to post evidence and arguments to, but no-one's interested, so it's just a list of most of the things I found.

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.

https://www.amazon.com/gp/product/B000FH19QW
With this alternate "hammock" for the head because some of the reviews of the first device said bad things about the hammock part:
https://www.amazon.com/gp/product/B07YGPFGM5