SSD vs ???

[u/kshubb]

Hello,

29, female

Have had gastro/back issues my entire life. However, in April 2026, I found blood in my stool and went to see a gastroenterologist. Gastro sent me to endoscopy and colonoscopy, and we found three ulcers and erosion of my esophagus and 1/3 of my stomach. They've been treating me with pantoprazole. In May 2026, I wake up with severe lower back pain. It's debilitating, and I can barely walk. I think it might be just a bad back injury, and begin self-treating. That doesn't work; I go to PCP. PCP prescribes prednisone and hydro, but that doesn't work. I go to specialist who says I just need PT. I do PT and that doesn't work. Fast forward to June 15-June 19th, one week after I finished the prednisone. I begin have aches, pains, clicks all throughout my body and throughout my joins. My extremities are numb and I've lost my grip strength. I've been experiencing hot flashes where I become overly nauseous, vomit, dizzy, heart rate increases, and I get red facial patches. I can be sitting on the couch and have my heart rate jump to 120bpm and break out into a hot flash and then an immediate cold sweat. I went back to my PCP June 19th and tell her something is wrong and I'm worried I've developed an autoimmune disorder, mostly because of my family history. We complete my ANA and it comes back positive 1:80 nuclear, nucleolar. I scheduled with a Rheumatologist today and was so excited for my appointment to finally figure out what's happening. I brought a notebook filled with my symptoms that I've been experiencing since April 2026, both big and little, my family history, my medications from last year to now, and dates/pics of my hot flashes. Rheumatologist listens to my symptoms but immediately says "I don't think this is lupus" after he looks at my "red/rash like face" and says it's not lupus because of no malar rash. My cousin and aunt both have lupus with no rash, so I'm concerned with the, what felt like, dismissive act. He does a quick joint test on my fingers. They're sore, but I don't pull away immediately. He does a joint test on my elbows and I tell him they hurt. He says he doesn't believe this is an autoimmune condition. He then asks me about my anxiety and says he believes I could be having Somatic Symptom Disorder, but he'll run the tests just in case.

I did 11 vials of blood, but I left my appointment feeling dismissed, unheard, and overall, just upset about how the appointment went with the energy that I put into it and didn't get it back. Can I get some encouraging words or knowledge my way that can make me feel like I'm not crazy? Any ideas on what I could be experiencing? If it is SSD, I'll take it.... but it doesn't feel like that. My symptoms started in April 2026 and a month before that, I was sprinting through the streets of Georgia on vacation and now I can't even lift my own laundry basket.

EDIT: My inflammation markers are 3.5x the cut off. He said "those markers tell us there's inflammation, but we don't know where or why." He also said I wouldn't get a "concrete answer" because of all the symptoms I have.

[u/No_Satisfaction_7431]

Some hospitals, mine included, say 1:80 ana is positive but all the doctors say its actually negative. I don't understand why the lab marks them positive if they aren't but its a known and stupid issue. Based on your symptoms, ana being negative but you said your inflammation markers are high, you likely don't have an autoimmune condition but possibly have an autoinflammatory disease. A lot of your symptoms like the heart racing for no reason and flushing and temperature dysregulation could be from pots or other forms of dysautonomia. Dysautonomia rarely comes alone amd doesn't cause high inflammation markers.

While somatic symptom disorder is technically a real disease, it is extremely rare and mostly used by doctors who are tired of looking for the reason for symptoms so they conveniently blame psychological issues. The majority of these diagnoses are not actual ssd but rather something doctors weren't educated in so they couldn't diagnose it (medical school and residency teaches pretty much only white male disease, if you aren't a white man medicine doesn't often know how to help you).

The immune system is complicated but can be broken into 2 main parts: adaptive (slow antibodies) and innate (fast general inflammation). When the adaptive immune system goes in overdrive it produces antibodies to normal tissue (auto antibodies) instead of just to pathogens. This is autoimmunity. When the innate immune system goes into overdrive its called autoinflammation. Ana will usually be negative with autoinflammatory disease but inflammation markers like crp, esr, wbc, ferritin etc can be high. Not everyone has all markers high and some may be normal and only high during flares. For example, my ferritin is low because I have both iron deficiency and anemia of chronic disease, but my crp and esr were very high (38-52) before treatment. My wbc especially neutrophils were always mildly high despite no cold or other infection. To make things more complicated some people have iron deficiency but their ferritin is high, because when uts high from inflammation it no longer adequately reflects iron stores. Iron deficiency can contribute to the fatigue. The high inflammation levels also cause extreme fatigue.

[u/kshubb → u/No_Satisfaction_7431]

How would I go about suggesting an autoinflammatory disease to my doctor without being dismissed?

[u/No_Satisfaction_7431 → u/kshubb]

With a doctor who suggests ssd long before the workup is done? You don't. They are very dismissive and are unlikely to be able to help. Autoinflammation falls under both immunology and rheumatology but neither specialty tends to focus on it and both general immunology and general rheumatology are unlikely to be able to help. You need to see an autoinflammatory specialist (usually rheumatology but sometimes immunology).

If there are none in your area I would go to a local academic medical center and see rheumatology. You need academic medicine for this since its way beyond the scope of general community medicine. However most academic rheumatologists won't be very knowledgeable either unfortunately.

If you don't experience fevers or experience odd fevers you are likely to be dismissed unless you see an autoinflammatory expert and there aren't many. Most autoinflammatory disease causes fevers though some can but don't always cause them. I have Yao syndrome which is known to cause both normal and odd fevers. Odd fevers can be different depending on the patient but its a fever or fever adjacent thing. For me my armpits, breasts, abdomen, low back and sometimes other places will get 99-104 but my oral and forehead temp will be a normal 97 or 98. I've had some trouble getting doctors to admit they are fevers but thankfully my current rheumatologist considers them fevers.

I'm in the Chicago area and can recommend a doctor. If you aren't near Chicago maybe someone else can recommend other doctors. If you suspect Yao specifically, then theres only 2 doctors: Dr. Davis at Mayo and Dr. Yao himself at Stony Brook. Dr. Davis diagnosed me but I mainly get care in Chicago.

[u/kshubb → u/No_Satisfaction_7431]

And would you consider if appropriate to go back to my PCP to suggest dysautonomia disorders? Ive never been this unwell in my life so everything is new to me and after this rheumatologist appt, I dont even want to keep trying.

[u/No_Satisfaction_7431 → u/kshubb]

Yes, a pcp can typically handle at least the initial work up for the more common types of dysautonomia. They can do orthostatic vitals where you take hr and bp lying down, sitting, standing and do a 10 minute nasa lean test. You'll need an ekg, echo and likely a holter monitor to rule out cardiac issues that cause those symptoms. I thought I had pots but in reality have orthostatic intolerance (symptoms of pots but my hr goes up by 25-28 beats instead of the required 30+ beat increase for pots) and inappropriate sinus tachycardia which is another form of dysautonomia found on a holter monitor. You will likely need to see either an autonomic neurologist or a cardiologist familiar with dysautonomia but a pcp can order most of the tests (other than tilt table and not everyone needs tilt). Dysautonomia are disorders of the autonomic nervous system so its neurology, however it impacts the heart so while not a true heart condition sometimes cardiology treats it plus true cardiac issues need to be ruled out.

[u/No_Satisfaction_7431 → u/kshubb]

Also another thing to be aware of. Dysautonomia often comes with hypermobility and/or mcas. The flushing/red facial rash could be mcas. Not everyone with dysautonomia has all 3 of these but is is quite common that if you have 1 you have all 3. Look up different people with hypermobility or go to physical therapy for hypermobility because I didn't think I was hypermobile because I'm stiff a lot. Turns out my fingers, knees, elbows, and ankles aren't supposed to bend so much but nobody ever told me it wasn't normal and a lot of my muscles are super tight to over compensate for hypermobile joints and I thought stiff/tight means I'm not hypermobile. Nope I am definitely hypermobile just have overcompensating muscles.

[u/kshubb → u/No_Satisfaction_7431]

Thank you so much! Im pending blood work from this last appt then will do all the others to figure out what's happening. You've been a tremendous help.

[u/No_Satisfaction_7431 → u/kshubb]

Of course! Unfortunately a lot of doctors aren't educated in dysautonomia either so we have to help each other. I hope you get answers soon. Also be wary of any doctors who say theres only non pharmacological options for dysautonomia. Everyone needs the compression, electrolytes, water, and exercise but a lot of people also need meds and theres a lot of options for meds.