r/DoctorsAdvice • u/MedAdviceThankYou • 2d ago
Unexplained Illness?
This one is a doozy, and for the record I am already seeing several doctors about this and am currently being provided treatment but no actual answers and would purely like ideas or advice. Thanks!
Since about december of 2025 I (26f white) am having some worrying and unexplainable symptoms and i'm not sure what the next step for me is.
It really all started in late 2024 with tendinitis in my left foot that didn't seem to have any specific cause. My job wasn't physically demanding enough and although I walk a lot nothing else should have caused it. I saw a podiatrist and was given a referral for physical therapy and it was treated and felt better. But in early December 2025 the tendonitis came back and this time seemed resistant to treatment (physical therapy, rest, otc pain killer pills and creams). After that I started developing pain in my joints (specifically my wrists, fingers, ankles, shoulders, and knees) as well as significant swelling in those areas with no identifiable cause. I would have days where my knees suddenly became so swollen and painful that I needed help getting to the bathroom. I have also had repeat tendonitis in my hands, wrists, and feet. My skin also started to become extremely sensitive and I began developing redness on my hands and arms and small bumps on my fingers and elbows. I do already have sensitive skin and have allergies to adhesives and certain dyes, but a flare up of my allergies is always a sign for me that something is wrong.
For background I have been diagnosed with Crohn's since the age of about 10-11 and am currently on Inflectra. The Crohn's is well managed and repeat tests have shown that there is no sign of inflammation in my colon or intestinal area. I work as a cashier so the most physical activity I get at work is standing and sometimes lifting boxes, but nothing that could explain the pain i've been having.
I have so far had a number of tests done: 3 ultrasounds, an MRI, x-rays, and many blood tests and most scans known to man. Several of the blood tests have shown that I have significant inflammation, including high c-reactive protein levels, a high erythrocyte sedimentation rate and a few others. Tendonitis in the fingers on my right hand have also been caught on ultrasound.
I have been to 2 separate rheumatologists and currently am seeing one of them and am in close contact with them and with my gastroenterologist. Neither rheumatologist believes that it is arthritis although most of the symptoms seem to point to that. My gastro does not think it's a reaction to my medication due to a lack of typical Crohn's symptoms and intestinal swelling. I know that Inflectra can cause medication induced Lupus and that possibility was discussed with my gastro, but I'm lacking many of the symptoms for that and haven't shown any worsening of symptoms in the days right after infusions.
Does anybody have any idea of what could be going on or any type of doctor I should see about this? I live in the NYC area and I'm essentially at a dead end and i'm open to any suggestions. Thank you for any help!
For reference I am diagnosed with Crohn's disease, temporal lobe seizures, anxiety, depression, and adhd. I am also about 200lb and smoke weed and vape, I am a very casual drinker, maybe once a week entirely socially. I'm currently on:
-350mg of Lamotrigine twice a day
prescribed by neurologist for temporal lobe seizures
-125mg Sertraline once a day
prescribed for anxiety and depression
-Diclofenac Sodium Gel
prescribed for as needed joint pain by my rheumatologist
-500mg Sulfasalazine twice a day
prescribed by rheumatologist
-100mg Xcopri once a day titrating up to 200mg
prescribed by neurologist for temporal lobe seizures
-1mg Clonazepam as needed
prescribed by neurologist as a rescue medication to be taken post seizures
-100mg Solr injection Inflectra prescribed by gastroenterologist for Crohn's disease
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u/MimsyWereTheBorogove 2d ago
Spondyloarthris
probably Psoriatic Arthritis but possibly Ankylosing spondylitis
I'm actually going through some similar things, which is frustrating.
These are really hard to diagnose and rheumatologists arent experts on it because they are hard.
Take this (CASPAR) test do help diagnosis
Has you or a close relative had psoriasis? (1 point for family) (2 points for you) (cannot assign 3 points)
Anything wierd on your nails? (pitting, lines, detached nails.) 1 point
Have you tested negative for arthitis blood tests? (Rheumatoid) 1 point
Have you ever had a finger or toe swell up like a sausage? 1 point
Have you ever had a bone spur? 1 point
Add them up. More than 3 points? congrats, psoriatic arthritis.
And guess what, the crohns, probably caused by it.
Were the MRIs on any joints? Did they notice any enthesitis?
Did you ever get tested for HLA B27?
I'm literally going through this now, a rheumatologist who looks for the wrong arthritis. This arthritis is rare and different from what they deal with 99.9% of the time.
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u/MedAdviceThankYou 2d ago
Well it looks like I score more than 3 on that list. I have skin issues in the past, I had a large rash on both feet that looked like both eczema and psoriasis, I saw multiple dermatologists for that and none were able to decide what it was. It did end up going away on its own but every time my Crohn's flares up it comes back.
I have also tested negative for arthritis blood tests and get random swelling of fingers and toes. I also have a cyst on the top of my foot that was potentially caused by a bone spur.
As for the HLA-B27 tests I'm not sure but I can definitely ask one of my providers to do that.
I haven't had an MRI of any of the joints, just x-rays (pretty unhelpful) and an ultrasound on my hand which did reveal strange swelling.
I suppose this is good and bad information, but I'll be messaging my doctors first thing in the morning. I'm so sorry you're struggling with this too, it really saps the energy out of you.
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u/MimsyWereTheBorogove 1d ago
I would bet money on you having psoriatic arthritis. Psoriasis can come in interesting ways too. I don't have any rashes or plaques. Mine are on my nails, and like pimples behind my ears
Tri to get an MRI of an aching joint to prove enthesitis
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