u/AugustGlows

I'm wondering if anyone else has a diagnosis journey similar to mine. (not looking for a diagnosis)

When my symptoms started, I ended up getting my ANA tested as a first step, and it was 1:320, and a year later, it was 1:640. I have a family history of autoimmune disorders (mainly RA). My symptoms have never really fit the traditional inflammatory diseases, though. Instead of joint pain and swelling, I have deep nerve and muscular pain that doesn't target any of my joints. Though some pieces fit into a few diagnoses, my symptoms and testing never led to anything.

My rheumatologist did some tests, and all came back mostly normal (except for my consistently positive ana). I saw a second rheum later on, and she suggested the issues could be neurological (potentially MS) instead.

I'm now going through the whole process again with a neurologist.

Did this happen to anyone else? I know some neuro diseases can have a positive ANA, but getting to this point has taken years and has been confusing.

Did any of you start with a rheumatologist but end up with a neurologist for treatment and diagnosis instead? Thanks : )

Hello! Have any of you experienced random butterfly facial flushing? Especially episodes that last only for a day?

This started happening to me about 6 months ago, and I can't find any specific links between episodes. I get a hot red flush across my cheeks and bridge of my nose, but it only lasts for a day at most. The redness is smooth to the touch, but burning hot. When I check my cheek temperature, it's usually between 101 and 103 degrees, but my forehead stays at a normal temperature.

I just can't find a link between each episode, and tend to have one at least once a week. I thought it was migraine-related, but it happens outside of migraines. I then considered food intolerance, but I've had this happen on days when I haven't eaten. The same goes for stress- I've had it pop up when completely calm and not show up under extreme stress.

Has anyone else had this problem? I also have neurologic issues, so I'm not entirely sure if it's autoimmune, but I want to hear about any of your experiences.

Not looking for a diagnosis, just want to know if this short-term butterfly flush has happened to anyone else. Thanks : )

Basically, what the title says. I'm not looking for a diagnosis- just curious if anyone has had this happen to them.

For some background: I had my ANA tested four years ago after experiencing some long-term symptoms that were consistent with some autoimmune disorders. It was positive, but further rheum testing was normal. Over the years, multiple doctors have tested my ANA, and it has remained positive and high every time. My last rheum told me that because it has been so high and consistent for years, it's not a false positive, even though my other bloodwork was mostly normal. Eventually, my rheum suggested my issues could be neurological instead, because nothing specific popped up in my bloodwork.

Now, four years later, my same symptoms are still present (some have gotten worse with each flare), but I've recently developed a consistent butterfly-shaped flush on my cheeks that worries me. Four years ago, the specific lupus blood test came back as negative, and I didn't have any facial redness then.

I'm going to schedule an appointment with my pcp for the redness. I know that my flush could be something completely unrelated to my ANA and symptoms, but it is a red flag for me.

Is it worth it to get retested and go down the rheum rabbit hole again? Can negative rheum tests become positive years later? I'm curious if any of you have had similar experiences or have any insight. Thanks : )

Edit: Thank you all for your responses! Additional Info: My ANA has been 1:320 or 1:640 every time, and it has never been negative.

TW: discussions of medical trauma and brief mention of sexual abuse

Right now, I get trigger point injections in my pelvic floor every few months, and they work very well for me. They happen while I am under twilight sedation, so it doesn't trigger any extreme anxiety for me. However, my urogyn explained that this is not a long-term solution on its own.

I see a chronic pain doctor as well and have a variety of medications that sometimes help.

The number one thing both doctors recommend is pelvic floor physical therapy. I know it works well for a lot of people, but I am TERRIFIED.

Unfortunately, I was diagnosed with PTSD due to improper and excruciating gynecological procedures in the past. It's to the point where I had a panic attack and threw up before my simple yearly exam. I also had an incident regarding inappropriate sexual contact when I was younger, which doesn't help with the anxiety.

I'm currently being treated for PTSD, but I cannot shake the fear of pfpt. It's hard to imagine doing internal treatment when my trauma stems from painful internal exams and procedures in the past.

My Dr. recommended a physical therapist who is very trauma-informed. However, I would have to drive myself nearly an hour to the appointment, meaning I couldn't take an emergency anxiety pill or muscle relaxer beforehand.

I know that I don't have to start internal work until I am ready, but I don't think I will ever be ready. I discussed maybe doing internal work alone at home as a compromise, but even that sends me into a panic. My doctor said that any pelvic floor physical therapy is helpful, but I won't improve without internal work.

Does anyone have any tips on how to get through this? I know this treatment will probably help, but I would almost rather live in extreme pain than go through with it.

Hello! This is my first reddit post, so please forgive me for any errors.

***TW for medical trauma.

I've had anxiety and depression since I was a kid. I see a psychiatrist for medication management, and he is fantastic. During these appointments, we do more talking about me and my issues than usual for a psychiatrist, but it's not a full therapy session.

Recently, I was diagnosed with PTSD due to traumatic medical procedures that were done without my informed consent. These procedures were excruciatingly painful and invasive.

Unfortunately, I have a chronic health condition that requires these same painful, invasive treatments nearly weekly. I cry for days before and after the appointments, and have panic attacks to the point of throwing up. I have emergency anxiety medication, but can't take it if I drive myself. The pain and trauma are so bad that not even my meds help.

The problem is that the trauma repeats itself multiple times a month. No matter how I try to relax or think positively, the reality is that the treatment is painful and triggering every time.

My psych recommended seeing a therapist for PTSD treatment. The only problem is that I have extreme trauma from therapy.

As a kid, therapy was used as a punishment by my parents. If I misbehaved, I was dragged kicking and screaming to random therapists. They would pull me out of school to go to "the dentist" and then drop me off at a therapist instead.

I had a lot of anxiety as a kid and definitely needed some help, but the way my parents went about it really traumatized me.

I'm an adult now, and the thought of therapy still makes me angry and sick. However, I cannot tolerate my medical treatments at all.

Against my better judgment, I saw a therapist for the first time today. I cried the whole way to the office. He was nice enough. I warned him that I hate therapy and only want to discuss how to move forward with my treatment and not discuss my other unrelated traumas and mental illnesses. Overall, it was uncomfortable, but I didn't cry or have a panic attack during.

However, when I left the appointment, I was so angry and upset I could barely think straight. I went home and sobbed and wanted to rip apart my room and break anything in sight. It was a full-blown angry meltdown, which hasn't happened since I was a teen. I had a panic attack and was the angriest I've been in over a decade.

So now I don't know what to do. I feel so angry and disgusted at myself for even going. I hate that I told him about my life and feel like I lied the whole time, even though I told the truth. I never want to see him again. I don't want him to know about me. I'm so angry at myself for even thinking this could work.

I don't know what to do. I know I need some form of treatment along with my meds, but I can't do it. How do you go to therapy when therapy itself traumatized you?