Rest absolutely but I had my back completely fail as I got out of bed one day, fell onto the floor and then couldn't move. The NHS left me in agony on the floor for 12 hours refusing an ambulance until they finally went off script when I asked how it was they expected me to drink water or sleep face down on the bedroom floor. The ambulance crew plied me with a lot of NO to get me up, then two shots of morphine so I could get to hospital, which was a waste as they didn't care to look at my back at all there and I ended up getting a private MRI a few weeks later. My GP provided some Tramadol the next day after I called him screaming in agony once the morphine ran out. I was in a stupendous amount of pain for the entire month taking Tramdol and then once the pain reduced and I stopped taking the drug I had the energy to move about a bit all be it extremely badly as my back was pretty badly damaged.
I wasn't doing much supplementation at that point, a multivitamin and then melatonin, 5HTP and magnesium all of which helped with sleep and I was using Fybogel for the constipation. Lots of rest, I didn't have a choice it was just months of staring at the ceiling in a lot of pain.
Took another 3 months before I was doing anything other than a few minutes out of bed. Joshua Leisk published the V3.2 HAPD in Feb/March time and I did the fasted version and within 2 weeks my headaches were gone and I was feeling a lot more energetic, Sodium benzoate still works on me as does LOLA and sudafed. I documented some of the progress I made in that thread, made about an 80% recovery until I didn't and crashed back, have been moderate every since. Currently gradually improving for the past 3 months or so but the vaccine kicked me back and something isn't right at the moment.
I currently do:
HAPD v3.2 - this keeps the headaches at bay and gives me baseline functional energy. Still the most important thing I do, its not as effective as it was but it still works.
5 HTP, magnesium, zinc, psyllium husk, melatonin, B12, K2
Anticoagulants - Bromelain, nattokinase - based on the microclots (which I seem to have based on what I gathered from my microscope today so its not been cleared by these drugs in ~2 months) LC theory I have been testing some of the pre protocol paper supplements.
Kidney dysbiosys - Cherry supplement, see the Markov Kidney infection thread but it seems to reduce down the bacteria in the kidneys.
Mirror of trial energy - BCAA+ protocol from an NHS trial, my analogue to what they are doing is called Mutant. Seems to give me a bit of an energy boost for some hours after its taken at the cost of some sound sensitivity.
I appear based on dietary testing and the BCAA+ to be a type 2 ME patient, that is glucose power is impaired, fatty oxidation isn't all that effective and I utilise BCAAs for energy.
Dietry - Kefir, Kumbocha, Kimchi, yoghurts rich in bifiodium all to try and improve the microbiome. Then a vegetable and meat diet mostly with coconut fats and glucose when I get a specific type of headache start.
I don't have a magic answer for you as to what brought me out really, nothing that happened at the time was anything but awful and should have made me worse.
A lot of my ME/CFS really seems connected to the gut, but every style of low carb diet has had little effect - from practically zero carb through strict keto to lazy keto to low carb-ish to higher carb lower fiber. Frustrating because I've been pretty disciplined and yet can't say I've had too much correlation. If I overdo the fiber, it makes my LES reflux worse, and if I overdo the carbs it can give me more energy drops, but in between like 10g of carbs per day and 200g of carbs per day (healthy ones) I haven't seen any major difference in ME/CFS symptoms or reflux.
Yeah, I don't know. Antibiotics helped me years ago, but not as much recently. I've tried various dosages of oil of oregano, andrographis, monolaurin, neem, black seed oil, etc. Seems to help a slight amount, but like most things it's not a big difference.
The intestinal tract has 100's of different bacteria that live there. Usually in harmony, with a balance of healthy and unhealthy bacteria. Many of the unhealthy bacteria cause inflammation when there levels become too high. This is called dysbiosis and can lead to increased intestinal permeability (leaky gut) from the inflammation.
Leaky gut allows excess toxins like lipopolysaccharides (LPS) to enter the bloodstream in higher than normal amounts. LPS are toxins found in the cell membranes of inflammatory bacteria in the gut.
When I and many of us with ME/CFS take herbs that kill inflammatory bacteria in the gut, it often causes a worsening of our current symptoms.
When the bacteria are killed off with herbs, these toxins (LPS) from the cell membranes can enter the bloodstream causing an immune system reaction, which worsens symptoms in many of us.
This worsening of symptoms from the bacteria dying off and their toxins entering the bloodstream, we often refer to as "die-off" symptoms.
@ljimbo423 seems to have his problem figured out. Personally, after all these years I believe there are many different things that be combined to create our lives. Some things work and some don't....and we keep a log (and can you believe I threw my away in a fit of anger years ago?).....until we find something that may help.
I absolutely would try to have your daughter sit in a chair for a time, or even walk from wall to wall in her bedroom....even if it's 2 steps to begin with. There is a very fine line between not doing anything and our body falling apart and our body falling apart b/c we've don too much. We try to slot in there as much as possible. I find that's been a constant source of concern for me. I can go from walking about a mile, to being bedridden....so I do have some movement to keep myself going. Start off carefully, that's the only rule.
Youtube as Woof! says, is a wonderful tool for us....we can spend hours on it. I'll definitely watch The Hornet King....and I welcome anything that provides laughter. Why lose another part of ourselves if we can avoid it? Plus it does make us feel better, no question of that. I have wide ranging interests, particularly in books, so that's a source of joy for me. If your daughter can't read, can you read even a partial chapter/day to her? I exercise my brain (which needs it after autoimmune encephalitis) by reading the same part of a book over and over again until I remember it. I also make certain to learn something new each day....who knew the world was so full of information?
Touch: So important to us as humans. Does she have an animal to curl up with her, or even you snuggling up or holding her hand if she can't bear more than that? I do think we have to re-learn these lost capabilities, so a thorough inventory of what's needed should be undertaken. It's also true that some people in the worst stages of this illness can't bear touch, sound or many other things. You'll also find their stories...and if you can't, write in and someone will give you the information page.
Tell your daughter that researchers are working on this problem.....we have more information coming in now than ever before, albeit the answer probably won't appear tomorrow. We even have some of our own now trying some of the newest therapies. Personally, I feel grateful to them and hope there will be a good outcome, especially for them and younger patients like your daughter. Me? Time has passed me by, but that's no reason to want to help others. Wishing both of you well. Yours Lenora.
When meditating try just staying in the various senses instead of having a predetermined point of focus like e.g the breath. This requires less mental energy so it can be done longer than the usual way of doing it. If she has some negative thoughts that demand her attention then try doing some CBT to get some distance.
I just want to point out that this isn't a guaranteed treatment for ME. Low-carb may work well for some people, but others may do better on high-carb. Some on low-fibre and some on high-fibre. Figuring out what is best for your daughter is a matter of trying different things and seeing what works best for her. This is also an ongoing process, since ME changes over time and what worked well at one point will stop working and may even cause worsening at some point, so it's important to retest occasionally.
I keep retesting yummy foods&treats, hoping for the best. For some reason, I haven't felt a strong urge to retest whether I can eat broccoli or cauliflower without problems...
@Sizzle - I don't recall seeing how old your daughter is - what interests and stimulates her may be different than what was important to me when I first got so sick. I was in my late 30s when things fell apart, ME/CFS-wise. In the span of a week, I lost the ability to walk up my driveway, do much at work (I had my own professional practice), ride my horses and do much more than sit around, weak and easily exhausted. Just eating a meal left me without sufficient energy to walk...a real kick in the butt for an active, super-motivated person.
The keys to GRADUALLY recovering from severe to moderate over several years, for me:
(1) complete de-stressing professionally. This meant selling my practice and retiring WAAAAY too early (not that I had any choice...the more I tried to push through, the weaker I got.)
(2) rest, rest, rest, rest on a couch (lots of book reading and listening to books-on-tape)
(3) excellent nutrition - just my own way of taking care of myself. I never ate much processed food, but I did eat a lot of nonessential baked goods that I weaned myself off.
(4) identifying and eliminating environmental triggers that made me sicker. For me, the most dangerous triggers were mold, mildew, scents & fragrances, smoke, cat litter, cedar, dust, dustmites and corn starch (a common additive to many items). When I eliminated all of these things from my home, I learned that I felt sooooo much better. Far from my old self, but not as bad as I was.
(5) Rolfing - a form of deep muscle realignment that helped with my fibromyalgia and cervical neck issues
I further simplified my life by selling my home and horse farm. I purchased a very-low-maintenance RV so I could live, month by month, wherever the weather was dry and 60 - 70 degrees (I found I was soooo much sicker if the weather was warmer or colder... my temperature tolerance was nil.) If I was feeling stronger, I'd drive (never too much at once) to a new location. When I was feeling weak, I stayed put. De-accumulating a house and farm's worth of things to maintain took a huge weight off my shoulders so I could concentrate on healing, and with time and the warmer weather, I began to feel a little better. I even got a battery-operated bike so I could move around a bit more.
Over the years I've found several dozen dietary triggers that I needed to avoid in addition to all those environmental triggers - common things like apples, cauliflower, shrimp, cucumbers, all grains (except oatmeal), grapes, all starches, and lots more. They all make my Sjogren's Syndrome, migraines and vertigo worse, so my life is better without them. Right now, I'm doing pretty good, diet-wise with a whole-foods diet (lots of veggies, fruits and nuts, plus oatmeal, eggs & a little fish)
If you've read all this to here and compared it to some of the other things posted, you'll see that each of us has taken different paths to get better. That said, we all agree...absolute rest for a long time is vital. An attitude that allows each of us to appreciate the best part of any day helps, too (just MHO). And once we regain a little strength, we need to be careful not to push ourselves out of our individual energy envelope or we'll lose it.
I had this too, now its just when I have PEM. You cant think straight, you cant even pray. Head is spinning while body in severe PEM/ PENE - mode and then suddenly adrenaline kicks in and makes everything even worse.
I wish I could give advice, what sometimes helped a bit was eating.if possible something that doesnt take much energy to chew ,doesnt crumble and can easily be held wirh hand.
I retired from a career executed with mild ME, but I got much worse after a major stressful event. Everyone in my line of work, they never retire. They keep going (like Dr. Fauci). I'm out of business at 65.
From that point on, the last four years has been
1) I can't read books
2) paragraphs are excessively demanding
3) magazine articles- can't read either
4) tried to paint but packed it up because I seem to crash after every effort to do a bit of art, or see the tip of the brush or conceptualize a plan. (art is a plan...)
5)between the eyes and brain, and the sickness, I have to be extremely motivated and interested in the topic to persevere thru the pain of reading.
6) I now can listen to maybe 3-4 songs in a row.
7) I only drive 4-5 blocks and really don't want to-its doubtful I will able to maintain my driver's license.
8) vision and mental processing of tasks means knitting one sweater wasn't fun and sewing, I used to be an impeccable seamstress, now nothing.
One of the worse thinking crashes I ever got was listening to three women chat in English and Spanish. I didn't even try to talk. I was sick for weeks with PEM after....
my apologies to everyone here. I can't seem to read the longer posts, but I want to.
HI @Wishful.....I'm also a book reader and that was/is my first love after my family. I love words, so I can't imagine life without books....but the fact is that I may have to at some point. In that case, I'm hoping that audio-books will replace what I can no longer read. @Rufous McKinney .....can you listen to audio books and have them register? Or if one's interest is gone; it's gone and stays that way. I'm scared about losing the ability to enjoy books. (Although they are hard to hold.)
Thanks guys, she is very severe now so tasks switching of any kind will be a problem I'm afraid
will suggest the "mindless yt", though she will probably say this is not possible
@BrightCandle if I somehow gave the impresission that I don't believe her, this is not the case
It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months. She crashed first week of November
Another thing that's starting to worry me.
If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?
I was on a trip for three months during which I was continuously crashed. PEM worse and worse, the symptoms intensified quite badly. That did improve after weeks of rest when I could get back home to generally very little stimulation.
Doesn't work to be around people every day. Even if I am not talking to them.