I found this book to be extremely helpful. It’s a bit older but all of the info that I read from it holds up with new research. I think it was ahead of its time
Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide https://www.amazon.com/dp/0897932803/ref=cm_sw_r_cp_api_i_we9lDbJGNAB3B
Here’s a bunch of resources you might find helpful. I’m so sorry you’re feeling so sick. The beginning is the worst because of the adjustment period. You’ll want to get copies of all tests done so you can read for yourself what they’ve ruled out. Some doctors are much more thorough than others, there’s a lot of things that can mimic this disease, one of the main symptoms that you didn’t talk about is called Post-exertion Malaise (PEM) or Post-exertions Neuroimmune exhaustion (PENE). It means if you use too much mental, physical, or emotional energy, your symptoms will flare up and get worse. For example It’s like a horrible hangover of symptoms especially after exercise, but can be from anything when you over exert yourself. This is the hallmark symptom of ME/CFS and you need it for a diagnosis. As for the 6 months thing, different countries use different diagnostic criteria so some need it to last 6 months and some don’t.
I’ve collected these resources over the past couple of years, and these are all of the best ones I’ve found.
This one I wrote as a research paper for uni, but I wrote it bc there was nothing available at the time that encompassed my experience and the experience that I heard from so many other people. I wrote it to help friends and family of people with ME understand better:
This one has good guides in case need to be in the hospital etc https://www.thegracecharityforme.org/documents/
I’ve collected these over the past year, and these are all of the best ones.
This one I wrote as a research paper for uni, but I wrote it bc there was nothing available at the time that encompassed my experience and the experience that I heard from so many other people. I wrote it to help friends and family of people with ME understand better. The works cited on it might be really helpful for your appeal. There’s one that says that we have the worst quality of life of any chronic condition.
This one has good guides in case need to be in the hospital etc but has a lot of Data in them. https://www.thegracecharityforme.org/documents/
I saw an M.E. Action report recently about qualifying for disability, but I don’t have the link
Yeah it sounds a lot like what people with POTS and ME/CFS experience. POTS can be a stand-alone illness or a symptom of ME/CFS. Both are honestly difficult to get a diagnosis in, but the most import thing is to not push yourself to your limit bc it will only make you worse. As for worrying about your kids, they need you to be as healthy as possible and if bed rest or taking a lot of time for yourself is going to make that possible, it sounds like you need to do that.
Here’s a bunch of resources that will hopefully help:
I just came here to say that 80% of CFS patients also qualify for fibromyalgia so a diagnosis of one does not negate the other.
Here’s some resources you might find useful:
This book was very helpful for me and my family to understand what was going on:
Sorry I’m flaring up rn so I can’t write much but it sounds a lot like a disease called ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It’s usually triggered by mono or another viral infection but can have other triggers. The biggest theory is that every cell in your body with this disease does not make the energy it should. There’s a lot of symptoms other than fatigue needed for a diagnosis. Check out r/CFS , the community is v helpful. You might also check out these resources and see if it sounds like what you’re doing through. I have it and am sort of an expert on it (not a dr though) so maybe read through them and see if it sounds like it could be correct.
You’d have to find a doctor willing to run those tests, so probably finding a new doctor who wants to figure out what’s wrong. Most people see a lot of doctors before getting a proper diagnosis. It’s very common to get ME/CFS after mono, like it’s one of the most common triggers. I’m not saying you don’t have it bc I’m not a doctor and don’t know you but do you know have any other symptoms (sore throat, joint pain, muscle pain, chronic low grade fever, unrefreshing sleep, insomnia, post exertional malaise, cognitive issues, brain fog, cardiac issues)? It sounds like if anything you should read up more on ME/CFS to see if it sounds like you or not. You don’t have to have all of the symptoms all the time but having just fatigue wouldn’t qualify you for it.
Here’s some resources that might help. There’s a lot of good ones too in a pinned post on this sub.
These resources might be helpful for you to read as well:
This one explains antivirals and how long to take them and stuff: http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf
Yeah it sounds exactly like me. I got sick at 19 with mono and I'm 22 now. I have had ME the whole time but only got diagnosed last year. If I could give any advice it would be take it as easy as possible for the next couple years (quit your job, move back home, whatever you can do) bc the first 5 years are crucial to if you recover or not. I didn't take it easy enough now I'm bedbound. There is treatment but it is very dependent on you being able to rest full time.
Here's some stuff that might help:
Edit: sorry I thought you put this in r/CFS but you should repost in there as this is Super common with ME patients