(Part 2) Best 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.
  
  

It sounds like you've realized that your body WANTS to eat because it feels like shit, but eating won't actually help. That's the first mental hurdle. Now you've just got to switch out your go-to foods for healthier versions so that when you do give into the binge (because that happens) it won't be so bad. I lost 35 pounds by just filling up on protein and vegetables FIRST.

I have a small history with eating disorders, mainly in the fact that if I count calories, things get out of control. So I don't count anything. I also don't let myself get too hungry - I'll eat 4-5 big snacks throughout the day, no real 'sit down' meals.

I also make sure I'm drinking enough water - I bought a few of these Contigo water bottles in the 32oz size, and I try to make sure I drink one bottle each day minimum.

I love to cook, but if I cook, I can't do anything else that day, so I eat a lot of packaged food and snacks, or fresh things that just need to be washed. I also eat things with a lot of flavor and spice -- bland food makes me mentally feel like I didn't eat anything, or that I'm depriving myself.

For protein I eat a lot of EPIC meat bars and canned tuna. Instead of eggs (because shells and sinks are unnecessary steps), I make a mountain of egg whites from the carton with sharp cheddar sprinkled/melted in, then LOTS of hot sauce. Sliced deli meats are great things to have on hand -- my deli has Lebanon bologna and lemon-pepper turkey, so I get those instead of the plain stuff.

For veggies, my favorite low-effort thing is IKEA veggie meatballs. But if you don't live near an IKEA, there might be another veggie meatball option at your store. I used to hate salads, then realized I just hated iceberg and romaine lettuce. So now I eat spinach salads (with carrots and olives and roasted red peppers from the jar and sometimes cucumbers). I don't use salad dressing -- just olive oil, balsamic vinegar, and garlic salt. I'll eat green bell peppers raw, like an apple. I eat a lot of apples, too. Honeycrisp are the best.

For good carbs/starches I make beans. Just dump 'em in a bowl in the microwave. Black beans with salsa is probably the healthiest option, but I also liked mixing Great Northern beans with canned sweet peas. Any bean with butter and some kind of hot sauce or salsa is gonna taste ok and be kind of healthy. (Not refried beans, though. Save that for a treat and/or really bad day. Load it up with cheese and salsa.)

To replace chips for salt cravings, I get these salt-and-vinegar almonds. They have lactose, for whatever reason, but other than a bit of bloating the first time I had them, they haven't really bothered my lactose intolerance. And they will low-key tear up your tongue in the BEST way (if you're into that).

I don't really have a sweet tooth, but the KIND bars come in all sorts of flavors and make great snacks. For a cold treat I get the Smooze fruit ices -- they've only got 10 grams of sugar.

I also really like the Thai Kitchen Instant Noodles. They're small servings, so sometimes I'd make two for a meal. Read the packages carefully if you have allergies, though --- the Lemongrass one has shellfish byproducts, which was a very scary and upsetting surprise for me.

Another important thing is just not to have the 'bad foods' (you know the ones) in the house. My dad left a bag of regular cheddar Goldfish here yesterday, and I ate the entire damn thing, despite my gluten and lactose intolerances. So I've been miserable all night. But today I will drink my water and eat my eggs and get back on track.

Sexplanations is a great channel and I'm so excited to see Dr. Doe make a video about Disability and Sex. It's a pretty giant overview, but hits a lot of important points that are applicable to CFS. This is a topic that's come up repeatedly on the chat groups and I thought it might be nice to bring here.

I especially liked her clarification that people with disabilities can be gay/straight/bi/poly/trans/asexual/kinky/vanilla/whatever - that sexuality is not defined by disability. As I've gotten to know people from this community (r/cfs) I've met people with many different sexual orientations and preferences.

Dr. Doe also talks about how people with disabilities are often desexualized which is something I certainly found as I got sicker.

And I appreciated her mention that some people fetishize disabilities in a harmful way. When I first started dating post-cfs I found this quite a bit (ick!)

I wish she had talked a little bit more about tactics for us to work around our physical limitations in our love lives. I've found this community very helpful in that area but haven't seen it talked about publicly very much. Perhaps in a future video.

----
As an aside, the book that Dr. Doe recommends at 5:50 (The Ultimate Guide to Sex and Disability) was actually shown to me by someone on here a while back. It's a good book and does a nice job of including energy disabilities. If you're starting to figure out how sexuality/dating/sex works with CFS it's worth checking out.

Links to the book:

• US Amazon
  
• UK Amazon new or used
  
  edit: words brain hard fog GAH

You're not a fraud. You're helping yourself function better, and that is very important. With CFS its advisable not to push yourself too hard. After I accepted that I should no longer push, push, push through my exhaustion, I discovered my limits. I work within them and now have a happy and fulfilling life. I can actually plan things and attend 90% of the time now.

As for a cane, you can get something functional but cool. Something that illustrates your personality! I hated when I had to get one and kept putting it off. But I searched around and found something interesting and fun.

I now have several and they have become signals for my energy level. If I'm just a little tired but still welcome some conversation, I take an eye-catching one. People will comment on them and I can get some positive 'vibes' from others. If I'm exhausted and hoarding energy, I take a common darker colored one.

For men, they have some gorgeous shillelaghs and [walking sticks.] (https://www.amazon.com/SE-WS628-55HW-Walking-Hand-Carved-Howling/dp/B004UAP8G2/ref=wl_mb_wl_huc_mrai_1_dp) They even have hiking poles that are great if you like to go for a walk. I use two like ski poles when I venture into the woods.

You'll be amazed how much energy a cane can save you when you can barely hold yourself up.

I don't get that, but I feel super conscious of gravity, like I'm stranded on Jupiter or something.

Gotta exercise to build up your muscles. Yes I know how freaking hard it is. If all you can tolerate is a 5 minute exercise routine with 1 pound weights and super slow reps then do that. I did PT when I first got sick and yes it's entirely possible to build up your muscles and even your stamina. BUT, but, you can still trigger PEM, so start off very small and only increase gradually.

Also stretches to pull your shoulders together in the back. In yoga we call them heart openers. We do a lot of back thingies in yoga class. Neck and shoulder stretches are also beneficial.

I have a book of super easy back exercises that are gentle enough to do every day. When I was really sick I could only do about 5-10 minutes a day. Now I can do a whole chapter. https://www.amazon.com/Backache-Exercises-Arthur-Klein-Sobel/dp/B000OX62E6/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=&sr=

So from my understanding of the literature and talking with multiple doctors that specialize in microbiome it seems the ubiome tests are interesting but aren't yet validated and are thus inactionable (meaning you can't really use the data to make clinical decisions for if your bacteria levels are off or not). I also know they can fluctuate very vastly in results from one day to another.

The only microbiome tests that are actionable or those that screen for pathogens/dybiosis (i.e. worms, candida overgrowth, parasites, known pathogenic bacteria) such as Doctors Data test or GI Map by Diagnostic Solutions. In which case if you find something you can treat with diet, probiotics, elemental diet, antimicrobials/antibiotics/antibiofilm agents be it herbal or pharmaceutical and then support healthy bacterial growth w/ prebiotics. FMT too I suppose.

At the end of the day we only have but a handful of tools available to treat microbiota and if you think this is an area you should address then look into the treatments I noted above and either follow a good self help protocol such as laid out in "Healthy Gut Healthy You" or find a good integrative/functional medicine doctor that specializes in microbiome to help guide your treatment.

I have been able to upgrade my moderate CFS to Mild by addressing my microbiome dysbiosis (I had parasites and a low level gram negative bacterial infection and mild fungal overgrowth). Its a solid avenue to explore if you have CFS.

Lmk if you have any questions.

I'm sorry if any of these ideas are stupid or inappropriate . I'm just gonna give you a bunch lol.

• Ds
  You can get them pretty cheap, and it'd let him play video games in bed. And he can play some relaxing ones like harvest moon, pokemon, or animal crossing.
  Idk if he has the energy to do that though. Or if he likes video games. But emulated games on my phone have been a lifesaver for bordem and stuff.
  
  
• Heavy Blanket
  Most people with chronic fatigue have trouble with sleep and some with anxiety.
  I got my mom this for Christmas (she has chronic fatigue) She only was able to get 4 hours of sleep or something before (during the night-time) and would never feel rested. Now she sleeps alot better.
  
  -Plants
  Plants have shown to improve mood and stuff, so you could get him a low maintenance plant like a succulent. Idk if have the energy for it though...
  
  -Instant pot
  Can help him cook by himself? maybe? Again, idk what his energy level is... So idk if it'll be helpful.
  
  -Vegtable chopper and storage thingy
  if he can cook by himself, he won't have to tire himself out using a knife, and can store the veggies he easily preps for his meals.
  https://www.amazon.com/dp/B01HC7BNJA
  
  -Googleplay/ Apple Store gift card
  So he can purchase games, apps, and stuff.
  
  -Lying down laptop stand?
  https://www.thisiswhyimbroke.com/lying-down-laptop-stand/
  
  -Gooseneck phone holder, so he doesn't have to hold his phone https://www.amazon.com/dp/B01M1JXNTT
  
  
• Saw this: https://www.amazon.com/Tens-Handheld-Electronic-Pulse-Massager/dp/B007TOJ948/ on a gift list... Its supposed to help with chronic fatigue and chronic pain. Idk about the science behind it though... so idk
  
  -These cool prism glasses that will let him read laying down and stuff? Idk how to explain it https://www.amazon.com/Skywill-Far-East-Industries-Spectacles/dp/B0006ZZCJI
  
  -Mop slippers??
  
  -Cool night light projector
  I see some ones that project ocean waves, or stars.
  
  That's all I can think of right now... I'll edit if I can think of anything else.

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!

Sure I'm happy to answer! I'm sorry you got it so young. Also that you fought so hard to keep on performing- that must have been really baffling and upsetting. I was lucky in that I knew what I had almost immediately due to my dad having something similar. I think it's healthy that we're retaining muscle tone, but may be causing symptoms because of its metabolic needs. Though I always take CFS theories with a grain of salt, Dr. Myhill's work has corresponded the best with my own experience- you can see her writing on what she believes are the metabolic causes of CFS: http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure


As for the diagnosis, it depends what you mean by official. My main MD agrees and has written down that I have it, but I don't have any special paperwork. I basically talked it out with my doctor. I was concerned I had it because I was very tired and had intense PEM, and my father has similar issues so I knew about it. My doctor ran many many tests for alternatives, all that I personally researched and requested, and they came back negative. Basic blood tests, sleep apnea, thyroid, lyme disease, STDs, hormones and later an MRI which ruled out Lupus and MS. I sort of diagnosed myself? My doctor was a General Practitioner, not a specialist. He is a very intelligent man, but he let me decide for myself and agreed with me that it was most likely I had CFS. I've done most of my own research and decided what action to take on my own, because very few MDs know much if anything about CFS. However, I have been believed for the most part. I think a Neurologist would be more trusted than an GP for an 'official' diagnosis, but there are so many symptoms and potential causes that I feel more comfortable with a GP.

Where do you live? I live the USA and getting disability is very challenging, usually relying on a very specific test.

I've had CFS for three years. I also had a brief spell six years ago that lasted 3 months. It started with what I believe was Mono (it showed up on a test that I had had it). However that ended. My current bout came after a very serious four month depressive episode (the 3rd in my life) but no physical illness.

I hope this helps! If you have any more questions feel free to ask. I haven't had any tests in a while, but will try a few just in case. I suddenly stopped being able to drink without feeling odd, so I'm going to get my liver checked, and also check for H.Pylori, a very common bacteria, because I've become more interested in the "2nd nervous system" located in the gut.

I really recommend ginger for nausea (ginger ale or ginger beer with real ginger is great, I also use pills and chews). It's the only thing that has actually helped me. I don't get headaches much, but I have this silly thing called a 'headache hat' and I love it.
https://www.amazon.com/Original-Headache-Hat-Wearable-Headaches/dp/B00FGWLDR6

Do you have shooting pains in the limbs or joint pain? I also have fibromyalgia and have some tips for you if you have it too. I've found colostrum (I take it in lactoferrin) helpful for muscle pain in general.

• Find something new and fun to do.
  
• Find something new to learn about and to be interested in.
  
• Learn to cook something different and good.
  
  One activity that comes to mind is birding. People usually associate this will tramping about in forests and fields but of course birds are everywhere.
  
  I have a simple feeder in my yard, and binoculars are always ready nearby. There is a lot going on out there and the more you learn, the more you see and hear.
  
  I have also taken to growing flowers from seed. This is not an ambitious undertaking - I am currently growing a pot of dwarf sunflowers, a catnip plant, and some 'cat grass' for my critters to chew on while we wait for the snow to melt outside. The only infrastructure investment was a $60 grow light from amazon. I'll surely get drawn deeper into the hobby, and it's about as satisfying and low-energy an activity that you could ask for.
  
  I've also entertained myself far beyond my expectations with this. Hey I'm not proud. A cardboard box was the only necessary addition. If you can't keep them all in a playing card at ten meters, it's you, not the equipment. The secret is an imperturbable zen-like calm. I'm still working on it.