Tired of the gaslighting

From my pcp: There are studies that show vitamin K helps vitamin D and calcium be deposited in bone rather than soft tissue. However, the only reason to take a vitamin is if your body is deficient in it. Vitamin K deficiency is very rare. So, except for rare cases where a person is deficient in vitamin K, there is no reason to take extra vitamin K. There is no benefit in having excess vitamin K.

The first sign of Vitamin K deficiency is significant bleeding that won't stop because it is needed to make blood clot. So, you most likely do not need to take vitamin K with vitamin D. From second dr: The claims of elevated cardiovascular risk with calcium and vitamin D supplementation are still in the controversial stage, and the claims that adding K2 helps reduce the risk are also (I believe) not well supported. I would like to defer the request for checking a vitamin K level to your primary care physician, because I am not sure how to interpret the results, and I am not sure of the medical necessity of such a test. I think (first dr) is more qualified to address this.

My goodness, I could have written almost the same. My life changed at the age of 21 after getting mono and “walking pneumonia” concurrently. I went from extremely active, athletic and healthy to barely able to work or go to classes. As years went by, experiencing so much of what you did and being dismissed or passed along by one doctor, specialist, etc. after another, my health continued to decline. I am now nearly 60 and still have no answers, am still blamed for my (untreated) chronic inflammation and resulting other health conditions. I have, too, recently given up having fought the system for 30+ years with nothing to show for it. I know that it is too late to experience anything approaching a full and satisfying or fulfilling life. I cannot regain my abilities, my youth, the money wasted on expensive doctors at the best clinics in the USA, nor do I have the energy to become excited and hopeful yet again only to be disrespected and ignored.
I do, however, know that evidence is growing about the role of Epstein-Barr and other viruses in chronic damaging inflammation and “mystery” syndromes, conditions and autoimmune diseases. That means that if the experts that should be paying attention to research are doing so, people a few generations down the road should not have to suffer the pain, financial and emotional drain, the infertility, intractable weight gain, and consequent depression that our generation has had to. So, I guess that’s the bright side of this.

My D levels do go low without supplements, so I'm always at least 2000 IU daily. More when we have colds.

But I haven't added the K yet. I may pick that up from Life Extension.

I do already have mild degenerative disc disease in my spine.

And yes, obese. I've lost 14 lbs since the surgery on Dec 19th, though. 🙂

I lost 100 lbs. My level of pain has not decreased. I know they like to blame weight on a lot of symptoms, but please don’t let your weight make you feel bad or responsible for being chronically ill.

Thank you. ❤️

I did have the hip pain already back in 2014 when I weighed about 75 pounds less than this. I was mildly overweight then.

(I was fine with my weight then. Charts weren't.)

cwitton1 @cwitton1, I GET YOU AND SHARE YOUR FRUSTRATION!! The world of medicine has changed drastically!
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Cwitten1, your words explain exactly what I am going through. I know that the anger and frustration I am feeling only adds to the problem, but I can't help it. We are sick and suffering, and the people supposedly trained to help aren't helping us.

Oh I’m so happy that you wrote into us. So thankful. The doctors have drug you through the mire and I am mad about it for you and I am sad sad sad for you. Years and years of neglect and down right abuse is what I heard in what you described in your 35 year experience and no good meds to manage your condition. And believe me we now and have had for years great medications for autoimmune diseases!! Most of us…surely I have had a bad experience with doctors that try to make you think that it’s “all in your head!” On my first airline flight I was 19 and sat next to a pilot. I was scared to death and oh so nauseated and he kept saying “it’s all in your head” and I kept saying I’m going to throw up. We touched down a couple of times before landing in Little Rock and as soon as we landed I threw up all over the beautiful lady to my left myself and guess who?? The pilot. Oh and I had on the most gorgeous blue dress and that was my first time to wear it. Now had the pilot been in reality he would have shown me the bags for throwing up..I still would have thrown up but we would have all been clean. So much for denying reality. Huh? I am on my fourth rheumatologist and he’s wonderful he listens and I have been in one form or another of remission or
Another for 5 years. But I was treated terribly as were you before I found this caring doctor. I also see someone for help with pain. Quality of life means everything after all the years in pain and suffering. Starting today I will commit to praying for you. YOU DESERVE THE BEST OF EVERYTHING. YOU NEED THE BEST MEDICAL CARE OUR COUNTRY OFFERS. I had decided to go to Mayo Clinic when I found this doctor. God bless and many prayers to you. Diane.

I can't take NSAIDs due to collagenous collitis (hard on intestines). If one has a damaged GI tract, then malapsorption is a side effect, including calcium, D3, and many others. I am 69 and have celiac so have to take extra D and calcium, and avoid all nasty gluten bits. I think dermatologists have a mantra that they must repeat multiple times a day, regardless of the reasons for a skin rash. It is "Its just dry skin". I used to think doctors were formatted like research scientists (me), evaluating everything to piece together the multidimensional jigsaw puzzle of us. Some are, but most are more like plumbers, seeing a leak and using the usually plugs and seals to fix it. One of the problems with getting older is that your "leaks" become more complex, and doctors just see snippets of you. One really has to learn medicine and research one's health to self advocate. I worked on my cars in my 20's and the mansplaining when I went to the garage was pretty extreme. One guy was shocked that I knew what multiviscosity oil is. Doctors can be dismissive as well, particularly with time and paperwork crunches they have to live with.

I am a professional geriatric manager as well as a pmr forum member and the mother of a daughter who had conplex issues I had to figure out myself. I agree with much of what you said and basically learned you have to figure things out yourself. So I take what can from docs, use it as appropriate but ultimately make my own decisions. If haven’t tried it pemf should help but cost is out of pocket.