I don't know what to do next - I'm tired

I sent you a private message. Let me know if I can help in any way. You are not alone.

@bswpb I live in Little Elm out near Frisco

I'm a 77 year old female who has been suffering for decades, one diagnosis then no it's not that you have anxiety so I just pushed through till 5 years ago a Rheumatologist did tests and I have RA and Sjogren's plus a list of stomach problems too. I just quit going because all the meds made me sicker and the doctor wasn't a "sharer" and gave me no help at all so I do feel your pain. Doctors won't do the work it takes to figure out how to help and they mistrust everyone and you get judged when you first see the doctor, good luck.

I'm so sorry to hear all you've been going through. I was diagnosed with Lupus when I was 24 (55 now). It seemed that even while in remission I had very very similar symptoms going on. My Rheumatologist did a trigger point test - basically just pressing trigger points to see if they were reactive - they ALL were. Apparently this along with symptoms that are much like Lupus (including insomnia) can indicate Fibromyalgia. You can have Fibromyalgia and Lupus at the same time, as a matter of fact it's very common to have one or both. My sleep study at 24 and again at 34 did not reveal apnea but at 54 it now does. Losing weight does help with apnea. I was around 125 all my life and am now am at 175. It doesn't mean that I didn't develop the apnea for other reasons but weight loss could help. I now have an APAP machine to help but I'm hoping if I lose the weight it will help.

Fibromyalgia is no small diagnosis - the condition can be brutal. I know it may feel like he was blowing you off but it's a real condition. The main difference between it and Lupus is that Fibromyalgia does not affect my organs and Lupus does. A primary care doctor can treat fibromyalgia much less expensively than a Rheumatologist and is not a rheumy disease. Pain mgmt could also help - they can give you a 2nd opinion on the dx and also do trigger point injections to help with the pain. Also if you start getting sleep (with a CPAP, APAP and/or by losing weight you'll feel better - not perfect but much better. Our bodies and minds will always feel better with sufficient rest.

If you had a neg ANA test it doesn't mean that you do not have an autoimmune disease. You could later test positive and the other blood work could point in that direction but I hope not for your sake.

Thoughts, prayers and a gentle hug.

Angela/Draginfli

@margaret216 I find I have to do lots of searches on my own to formulate questions to bring to my doctor. I'm still in disagreement with her diagnosis of Relapsing polycondritis. Especially since she has never seen herself. And, she has not seen fixed drug reaction which I had confirmed years ago with a biopsy. They can look extremely similar. And both spots popped up after I carelessly too Naproxen which had been determined the source of my FDE. We have to be out advocates. I'm building a care team that includes my naturopath primary, rheumatologist, cardiologist, dietician in addition to the dermatologist.

@kizu
I'm sorry that you're going through this and feel that your condition is not being taken seriously. That is difficult on top of not feeling well. Your primary care physician should be your advocate for seeing a specialist and should have a referral system for the usual specialists. If they are not willing to help you, then maybe you need to find a new primary care doctor. You sound desperate to be heard and diagnosed properly. If you have to drive an hour or more to do so, then that is what you will have to do. Try to find someone to go with you and then try to find something to do at that location that makes the trip more enjoyable. The bottom line is, if you want to be treated for your condition, you have to go where there are doctors available. I don't mean to be blunt, but they are not going to come to you.

@artemis1886 kind of a long commute…wonder if you could do telehealth?

Does anyone know anything about IGA deficienc?

Oh Kizo, I am so sorry to learn what has been happening (& continues to happen) to you. Being brushed off by a physician--yes, that happened when I was suffering from Long Covid,---for 2 years--before it was 'accepted' by that doctor. Thankfully, I'd already left him. -- My #1 source of information, understanding (AND kindness), plus positive attitude building, comes from MD's who've studied with Dr. Andrew Weil. And some of them I've never seen in person--we do Telehealth appts. Here in Calif they're part of the 'integrative medicine' department associated with Univ. of Calif or Sutter Health. Have you done a search for licensed MD's--in your area-- who specialize on integrative health? I am NOT talking about naturopaths. -- Congratulations on losing a lot of weight! Please don't give up. -- Consider walking daily, noticing the natural beauty of outside....Daily--I meditate (you might like Tara Brach's YouTube guided meditations)--daily I make a list of 3 things I'm thankful for..Each list is different from the day(s) before. --Sending you a cup of herbal tea and a hug. --PS: I've had health challenges for 35 years.

@margaret216
Please don't dismiss all doctors as dismissive and judgmental. Doctors are capable of having the same faults as everyone else in society. You found one who works at a job. I have been lucky to have doctors who have a profession and take their Hippocratic oath seriously. If you change doctors, you may find the care and the answers that you deserve. Giving up only hurts you.