u/ShmoopyMoopy

Furthermore, both myself and a close friend are seeing improvement with our holistic docs - for my crushing fatigue and her hashimoto’s. Saw her hair growing back myself.

Good lord - I said she should go to a doctor, not a “healer” or some dude selling supplements as a hobby. Back off. And insurance companies didn’t cover the IVF I needed to have my baby, not because “science”, because MONEY. It’s my fault my genetic disease made it difficult to conceive, so I paid $20k on my own and had my darling girl anyway. The science was there just fine.

Oh boy. The minute we defend one idea or another by what insurance companies do, because they are “practical”, we may have lost our way. Most likely a functional med doc would take a hard look at nutrition and make huge changes to her diet. Insurance companies may not like that because it lacks the purchase of prescriptions. OP seems smart, I think she can probably manage to choose between a good doc and a quack.

I guess I’m confused why the tests would be considered to have no scientific basis if you are looking for candida overgrowth or too much mercury and it shows positive or negative? Or testing for a parasite? She can go to a real MD, with a real medical license and not be scammed - sometimes they are called functional medicine doctors or “holistic”. She deserves a chance to get a new perspective rather than just be abandoned by doctors who don’t know what to do if she doesn’t respond to their meds.

Maybe try a functional medicine doctor and get tested out the wazoo for nutritional deficiencies, parasites, heavy metals, gut bacteria issues, food allergies, etc. something is wrong and all the doctors you’ve seen are trying to treat the symptoms and not the cause. A functional medicine doc will do the opposite.

My parents tried to “cure” my thumb sucking with various forms of torture and so I switched to my index finger. I think they finally gave up after that.

I became dangerously thin after my daughter was born due to having postpartum depression, mono and an, unknown at the time, genetic disease. I looked very weird and I got tons of compliments - even my own mom said “it’s so good to see you looking cute again.” Gawd.

EDS? I hear ya. Me too. So sorry for your loss and the noodle collagen. I’ve had a stupid number of surgeries for a “healthy” person.

The petty thing: I taught my kid a joke to tell him that I knew he would both disapprove of and laugh at. The not-petty thing: I hired a Private Investigator to look into his new wife after becoming more and more alarmed by the crazy stories I heard about her, the way he was behaving and when ultimately it began to affect our kid. Turns out all the suspected lies were lies, and as I feared, he was trying to conceal that he’d married an absolute piece of trash. I sued him and now he’s lost time with our kid and all of his independent parenting decisions. He’s an idiot.

It’s soooooo great you’ve realized this and have decided to get better. My ex had Avoidant Personality Disorder and it has spiraled to the point where he’s lost a lot of custody of our child. He’s making himself, his family, me and worse, an 8 year old, miserable. It can be a very destructive issue. If you don’t decide to get better and get support from a therapist, it will get worse.

Aging is normal! And it’s not over til it’s over. I just signed with a modeling agency at 46. My wrinkles will be part of what gets me work. Wear sunscreen, eat healthy and enjoy your life. You are falling victim to marketing right now. Don’t let someone trying to make a buck mess with your happiness.

Hey y’all (yes,I live in Texas). I know, KNOW how hard it is to push for regularity in our days, but please don’t give up trying. Regardless of our CFS, we are biologically evolved to certain routines in the way we eat, sleep, etc. The more we move away from these rhythms, the more confused our systems become. I have seen a little hope lately in coaxing my body to realign with health - I’ve improved enough that I’m willing to share because I really don’t want to be the person that thinks I’ve found a cure with a supplement that helped for a week. We are evolved to sleep at night, rise with the sun, relax a good deal of the day and work hard for a few hours to survive. Science knows that we thrive best by waking at the same time everyday, get 7 hours of quality sleep, exercise daily, eat non-inflammatory foods - mostly plant life and some meats from animals who live outside factory farm settings, as we absorb stress-damaged molecules from those animals that our already struggling bodies are mining for resources to repair our damage. I know not everyone will like my advice, but I promise I got here out of 22 years of exhausted desperation. I will never have a perfect amount of energy, but I’m beginning to have more good days and I’m beginning to back off on my stimulants. I cut out all wheat, dairy, sweets and alcohol. It sucks, but all of those foods have an inflammatory effect on human bodies, whether they feel it or not. I added much more vegetables and fruit (but cut bananas in half), I watch my glucose swings like a hawk, I cut out diet sodas, and any processed ingredients - if I read something on the label that doesn’t resemble what Mother Nature produces, I do not eat it. I am not diabetic, but I respond to glucose/insulin swings like a train wreck - eat my favorite gummy bears? I can expect my next day to be a depression-brain fog-exhaustion-mess. I have done all of this without hope it would really help, as it’s not “prescribed” by a single doctor, but it is helping. I also spent a year or so nudging my sleep cycles in a better direction. For a long time it was “sleep as much as I can”. I did that - 7 years of sleeping 9-10 hours a day and never feeling better. Now, I am making sure I get up at the same time everyday with 8 hours. Some days that’s hard, but some days I actually pop out of bed. I try to get out in the sun or natural light immediately to set my circadian rhythm to prep for nighttime in the evening. It does help regulate your hormone release times. It may not work well for us CFS sufferers, but it is our natural state as humans, so I’m basically trying to give my body the tools it needs to “reset”. Some things I’ve medicated to give my body a shove to the right rhythm, like going to bed at 10:30. Don’t give up, because we simply do not have the support we need to recover, either with our families or doctors. It’s on us to get it done. It’s the most worthwhile thing you can do, even it you make one tiny change a day, that’s progress. And I’ll never ever give up all my meds, so not advocating for that, I just want us all to have a day or two extra that’s mostly good, if not more. I am almost exclusively following the nutrition advice of Dr Mark Hyman right now. And I’m experimenting with hot/cold plunges because of their ability to boost the immune system and put your body in repair mode. I guess I’m trying to say I’ve fought enough, to heal enough, to gain a little more fight. Ive made enough progress to put down the comfort foods and commit to “food as medicine”. It’s big for me. I hope all this helps someone else too.

Edit - link to Dr Hyman’s info : https://instagram.com/drmarkhyman?igshid=YmMyMTA2M2Y=

I’m having a flair day for Mother’s Day, and I can relate to everyone here. But, my daughter just said to me, “how can you make me the happiest girl? By just being you.” Sweetness. She then follows up with “I said that to make you feel good and because it’s true.”❤️

Amazing! You look awesome - hope it feels good too.

One’s heart rate can skyrocket and it doesn’t mean death is around the corner. I sat in front of a cardiologist who was blown away at my heart racing because I stood up and walked three steps. He said it’s not dangerous, just weird and inconvenient. He prescribed nothing and even said taking a stimulant was fine if it helped improve my quality of life.

I’ve had POTS my whole life. My heart rate responds to exercise like normal people - it’s high when I’m unfit and gets lower when I work out. I’m not in danger of dying. I’m pretty healthy for someone which multiple conditions that make me feel like hell. Lol.

Ha! I once did a snorkeling tour where another couple was fully dressed in the water - socks and hats too. Pretty sure it was about sun protection, but I didn’t ask.

Yes, yes, yes. I try to take solace in the idea that all that pumping and organic homemade baby food are actually what’s still keeping my child alive today. Meanwhile, I just found a stash of pop tarts in her closet that I did not buy. Also, this explains why she puked up pink frosting and sprinkles at the gym yesterday - had to cut my workout short.

Gawd, I need your help moving my big plants.

As my sister says, I was all knees and elbows. I looked skeletal, but ate like a beast. Began to fill out around 17 or 18 and am slim/normal now.

I am so beware that I got rid of mine. Slicing off one fingertip was enough. Never again.

We use Our Family Wizard. It’s better than texting for my mental health, and it keeps an archive of communications and what’s going on with the schedule, etc. But it’s not free and both parents have to opt in. It’s worth it to me.

I guess I need to give it more time then, but i do wonder if I’ll ever “recover” from him. And what they did was a lot of stupid shit to end up pushing my 7 year old (at the time) into a rapid, escalating depression where she began threatening suicide. Telling her scary stories, pushing her to grow up faster, they even banned one of her toys because new stepmom thought it was evil. The kicker was that they lied to me and told me stepmom was a registered nurse, so we were supposed to defer to her medical opinion when it came to COVID, pinworms, etc. some of her advice was stupid as fuck, so I got suspicious and hired a PI - found out she was basically a lying grifter, a medical assistant (I.e. no degrees or actually real medical training) AND she took a flu vaccine from the docs office where she worked and injected my child with it at home. My effing buffoon ex husband still defends that she is a nurse. He said it in front of a judge after it was established that it was a lie. AND, he’s an attorney. He’s gone so far off the deep end of rational that there’s simply nothing I can do to parent with him. So I teach my child the best I can to survive the time she spends with them and worse, kinda manipulative the situation to spare her any pain I can. It’s pretty awful. My kid is now on meds and sees a psychiatrist.

It took me 42 years to get my diagnosis for a genetic disease. And, I still have trouble convincing doctors that it could be the cause of my physical struggles.

I’m always thinking people are just being stupid and then someone has point out to me that they are actually bad people with bad intentions. I have the hardest time computing that’s possible.