I feel incredibly hopeless.

in reply to @morganjane I am so sorry about your predicament. I found this article for you this morning, it is really rather enlightening, and probably for many of us
https://medium.com/@jhousehay/just-start-over-2ab8f6399fb6

Unfortunately the modern medical model is broken. After fifteen years of countless tests, doctors visits and complete loss of my physical and mental health, along with the loss of my family and my freedom I somehow decided to try to figure out what was wrong with me.

It sounds overly simple but I just started Googling my symptoms, diagnosis, treatments and medications. I was horrified at how readily available the information and answers to my questions were and are. I have a great deal of experience doing research, (I owned an investment management firm for twenty years) but I didn't need any experience. The answers were right there. First page Google search.

In the investment business companies hide things. Digging is hard and requires a lot of experience to separate the nonsense from the actionable. Healthcare research is different. The information is everywhere. Yes, one needs to separate the biased from the unbiased but that is fairly easy.

If the research is sponsored by an entity that has a profit or political motive I reject it. One place to be careful is the FDA. The FDA does little to no research of their own. They get their data from Big Pharma and then decide based on that information. The FDA is a political organization. I give little credit to anything that comes from them. Doctors do, so I sometimes reference the FDA when I approach my providers.

In my experience most providers do little to no independent research, they do not have the time even if they were so inclined. Most providers know what the drug companies tell them. The exception does seem to be healthcare associated with teaching hospitals or institutions like Mayo Clinic that have a long history of public service.

I was dying from a host of physical and mental ailments.

As a result of the treatment and medications I was on I am completely disabled so I have the time. And no one is more motivated to ease my suffering than me. After spending the month of July doing research I went to my providers with what I found and told them what I wanted. Yeah, I ruffled a few feathers but after a little resistance they actually seemed relieved that someone was taking charge.

I am certain had this not happened I would be dead by now, probably by my own hand.

I am not out of the woods yet, but my trajectory is upward and I continue to make course corrections when necessary. I am well enough to have started a company providing research to other sufferers and their provider's. But you don't need me. No one does. No one is more motivated then the person who is suffering. All you need is an internet connection and the ability to read.

Would I prefer to have checked in to Mayo Clinic and let them work their magic? Sure! Unfortunately that is not an option for most people given the state of healthcare in the United States. It is imperative that I manage my providers. The days when I just do what they tell me are gone.

As an example two weeks ago I talked to my psychiatric provider about the fact that my sleep is all messed up from the meds I've been on. The very first thing she did was offer me two new sleep meds. I told her I would like to to do my own research before I take anything. No surprise, first page Google search turned up a page from Mayo Clinic clearly stating that the recommended sleep meds should not be taken with two other medications my provider knows I am on. This was easy validated by the second and third results.

Overworked, unconscious, medical providers along with my own negligence took everyone and everything that ever mattered to me away. No more! I need doctors to bounce my ideas off of, write prescriptions and order tests, other than that I am my primary care provider. No one else really knows what's going on with me anyway. The don't have the time.

You clearly have something systemic going on. I am not qualified to tell you what that is. But you are.

For what it's worth I believe you! I've been there too.

I wish you good health and peace.

Very sorry you’re having so many problems and not getting help.
Reading all of your symptoms my mind went to the late 80’s and my cousin.
My cousin was a bodybuilder and avid hunter when suddenly his entire life changed drastically nearly overnight.
He spent 7 years going to doctors and they all credited his symptoms to steroid use…
One day he happened to see a talk show about lymes disease and his symptoms (many as you described) fit the description. He also remembered a small bullseye bite mark (tick bite)he got on the leg while deer hunting.
They had a 1-800# to call and he made the call. He was referred to a specialist and sure enough 7 years of doctors, bloodwork etc and none of them caught the disease!
The specialist instructed him to bring all records to the first visit. His bloodwork for the past 7 years revealed lymes and none of them caught it!

Have you been checked for lymes or any toxins (mold or chemical)?

Wishing you the best outcome.

MOJO

I've been feeling sorry for myself all morning. The next test because there is ALWAYS a next test, which they seem to feel is urgent, can't get me in for 6 months so I'm pouting this morning and frustrated and wanting to JUST GIVE UP. ..give up on doctors and the fight of insurance and all of it. Then I read your post. We share about 95% of our symptoms. I've been bouncing between doctors and tests and misinformation and ' I think it's stress let's give you meds' or 'it must be fibro, you should exercise more' since the 2006. Eventually the body gets tired of not being listened to and it begins to get louder, so over the past year I started having non epileptic seizures, mini strokes (TIAs) and bruising up and down my spine without any kind of traumatic event. Yet no solutions from doctors. I had the opportunity to do a in depth Lyme test and my physician said yesterday he doesn't really believe in Lyme so refused to draw blood. My gastroenterologist a few weeks ago said that food intolerance has nothing to do with Gastro issues. What has happened to our system? When did it become this broken? I absolutely hurt FOR you because I am where you are and it sucks. But no matter what we have to step out one more day and have hope. Because Hope and Faith are all we have right now.

I could not agree with you more and very well stated!
For those of us with long Covid however, the research is not really there yet to help us with solutions.
I spend hours looking, looking to try to figure the “key” to my recovery. I have found an Integrative medical practice that is really trying to help me. But, this is all new to everyone.

I would encourage you to continue to do as much of your own research as possible. You will find information that your doctors do not have. They simply do not have the time. Researching what is going on with me does two very important things that have as much to do with me still being alive as does the information I find.

I learn what questions to ask. How a care provider reacts to my questions tells me a lot about how much they actually "care" and if they are humble enough to consider ideas that do not come from them. The arrogance of one doctor combined with my negligence destroyed my life and the lives of my wife and children, not to mention the effect it had on my investors, clients and the community.

Hubris is what drove Icarus to fly to close to the Sun. It cost him his life. For my children's sake, I don't want it to take mine. Beware hubris in healthcare providers.

That's were the second part comes in. I suffered for a long time with no answers. As treatment after treatment failed I became hopeless. If you are suffering from Long Covid I suspect you know the feeling. Researching what is going on with me gives me a feeling of having some agency over my life. I feel like I fighting back and that gives me hope.

I've been lucky, I found a lot of answers. It doesn't mean I am out of the woods. I am still fighting for my life but at least I am still in the fight. Somedays that's all I have.

There are a few other things that help.

I keep a pretty set schedule:

I get up at 4:00am, whether I want to or not.
I eat, meditate and read until 6:00.
I exercise from 7:00 to 10:00 (I really only exercise for two hours the rest is Sauna and wasting time).
I have my morning snack from 10:00 to 11:00 at local coffee shop.
From 12:00 to 4:00 I do research and write for my company and a book I am working on.
5:00pm is dinner.
6:00 to 7:30 I read and sometimes watch a little television.
8:00 is bed time.

I also plan and track my diet very closely. Good nutrition and exercise are the foundation of everything else.

I believe that whatever kind illness someone is suffering with, having a plan can help them get through the day and have some control over their life. I know that is what it does for me. Without my schedule and the little bit of hope I get from doing my own research I would have taken my own life by now.

I had Covid, it almost killed me. From what I know of Long Covid I suspect you are suffering greatly. I am sorry! I know that doesn't help much but there are people who care. If you keep digging you'll find that some of the leading institutions in this country recognize Long Covid as a real and debilitating illness that can destroy the suffers life. The proper treatment won't come fast enough but my research leads me to believe it is coming. Hang on! There are people who love you!

Yeah, I'm talking to myself too.

I hope you find the peace and good health you deserve.

It sounds like it could be a heavy metal poisoning or something along that line. I see you have tats too so you might consider that as a possible igniter of your symptoms especially if you got the tats prior to symptoms. It never hurts to find out. Whatever it is, it seems to have been going on quite a while. It could be chronic fatigue syndrome too. Hope you find out soon.

Have you been tested for Lymes or a parasite?

I'm so sorry. I'm going on 18 years without an answer. Some days are harder than others and days like today (another doctors appointment) are the worst. If the disease doesn't kill us I think frustration will.

Unfortunately, it is soooo true what you've shared about seeing doctors who are dismissive, whom we grew up to think would have common decency and concern (if not compassion) for at least pursuing, if not ultimately resolving, our lived symptoms/conditions.

We are going to them, living these symptoms/concerns, and subjecting ourselves to dismissiveness, coldness, and invalidation, only to continue on the treadmill (if we still have the energy) to find a professional who is capable and will take on the need to find answers. And, on top of this, I'm not even talking about serious, chronic conditions.

I cannot imagine, and frankly (after another dismissive, what-should-have-been regular visit) don't have the emotional energy to consider how on earth a person is supposed to deal with this Sisyphean task of getting professional, effective care when they may be at their worst in the midst of pain and sickness?

The lack of accountability for compassionate, competent, effective care is disheartening, to say the least, and borders on the criminal ("gross negligence"), I should say, in the worst cases.

Why must we fight these emotional battles, on top of the physical ones? (Because we have no choice.)

Here's to enduring the struggle to be heard, and attended to in a professional, competent and solution-oriented manner.