Tired of the gaslighting

Positive thinking, hydration, sleep, avoiding stress, support system, and diet/exercise are some of the things important to healing. It would be good to look up Medical Medium on Wiki or other sources before spending money on his products; he has no background in science or medicine, just conversing with angels. My brother believed his pancreatic cancer could be healed by eating sesame seeds and other online cures, although in his case chemo would have been worse (the "cures" did give him something to focus on for a while).

Not sure if this would help but there is a book, I recently read by Dr. Cynthia Li, called, "Brave New Medicine". She is a medical doctor who developed CFS and had to learn how to treat herself through all sorts of natural therapies. Might be worth checking out. You are correct in that most doctors don't have a clue on all of these auto-immune type illnesses. It is up to us to deal with everything. I have changed my diet and all of my activities and even had to quit my job. I know that diet is key - stay away from sugars (all except what may be found in low glycemic fruits such as berries). No processed foods, no seed oils and no grains, especially wheat (gluten).

I don't know what autoimmune issues you are dealing with and even if I did, I know that each of our bodies responds to disease and treatments differently. Having said that, here is what I have found helpful: I have worked with two acupuncturists- one was not good- one was. I have worked with the one I found helpful for several years. My pain levels have decreased and my energy increased. I have treatments monthly or every other month. When I have skipped treatment three to five months in a row, the pain returns in full force. So I work to keep my appointments scheduled regularly. I find Curcumin supplements helpful and have found what I eat and drink can also make a difference. I used to drink sugar laden, caffeinated soft drinks daily. I have had some degree of pain decrease and energy increase by ending this habit. I wish you the very best as you continue your journey to find answers that fit you.

What do you mean by Gaslighting? I know what means but medically?

I agree. Try a naturopathic doctor / functional medicine practitioner. Total game changer, as far as the experience.

@penn. I found this explanation, but there is so much more! Examples, people who do it, and more. Just google “gaslighting”.
Gaslighting is a colloquialism, loosely defined as manipulating someone into questioning their own perception of reality. The expression, which derives from the title of the 1944 film Gaslight, became popular in the mid-2010s. Merriam Webster cites deception of one's memory, perception of reality, or mental stability.

I don’t know who you saw but until I went to Mayo in Rochester, 6 doctors had no clue to what was causing so much disability!
Mayo found out with 1 test, that happened to be the treatment for a specific condition!
If I got better right away, they knew how to get it under control, and they did ….
Steroids ~ Drs don’t tell you make you gain a lot of weight & it disrupts your adrenal glands, along with the other damage you mention.
I found a doctor in Illinois that knew how to follow Mayos protocol & I began working again 5-12 hour days 🎉
When I moved to another state, I had to start ALL over from day 1 with already tried & failed meds & procedures!!
Who would think you’d have to start all OVER again, when something is keeping you employed & living your life in minimal discomfort?
Each new Dr wants their own trail of tests & procedures.
Maybe it’s b/c there’s a War on pain relieving meds, even for TRULY documented internal damage reported by Mayo!
All I needed was a nerve block that would last 6 months without medicines. So twice a year to stay out of a wheelchair!
So I felt your pain.
This is medicine today,
Everybody is a specialist & we have to go to each one like the walking wounded of the civil war, and I think it’s cruel & should be illegal.
I’d rather have 5 years pain free to work, play, travel & enjoy my family than 10 years limited to a wheelchair, & all alone in PAIN -
Maybe move to a better place. The better the hospitals in an area. the more access to better pain management doctors & diagnosticians who CAN give you an answer & begin treatment.

Have you ever been referred to a work up for POTS ?

@hollie Welcome to Mayo Clinic Connect! I’m glad you found the site. Do you have POTS and is it managed well?

I too was going to mention EBV I never knew I had it until the COVID vaccine caused a flare. I felt so horrible for so long and tried 5 drs. within 3 years. Finally asked for the test. Dr said I have chronic EBV which explained many things over my life span. Unfortunately our system doesn't focus nor treat EBV itself but as you describe push you from pillar to post. The UK has more literature on the subject but also falls short. I unfortunately like you once believed it was about helping and had a spinal fusion. Huge mistake(for me) Our medical do good things however many are waking up to how the system works. Not sure when it took this turn but it's so very sad. Saying you are not alone isn't enough and oh how you are not alone there are many of us...I'm with and hear you but real change needs to happen especially for our children and generations to come.