Complex Patient seeking answers

Hi! I’m new to the group so thought I’d introduce myself and my story. I tried to do the short version but it is a novel & I apologize for that… I’m always open to constructive feedback.

I am the odd person whose labs are normally great. Even when my joints are visibly tight/swollen my inflammatory markers are negative.

I have worked as a RN for the last 15 years but finally waived the surrender flag and resigned effective 12-2-2021 so to feeling progressively unwell and unsafe.

Back story & Timeline
*Diagnosed late 1990s with Hashimoto’s and subsequently had 3 subtotal thyroidectomies.
*Approx 2000 diagnosed with RA. I currently use Humira & Methotrexate weekly.
*Diagnosed Idiopathic Hypersomnia & Chronic Fatigue Syndrome approx 2009 though I had symptoms much longer.
*Summer 2019 I got Parvo (not the human kind) at work.
*March 2020 I suspect I had COVID but they would not test me.
*Oct 2020 - COVID positive. I never returned to my baseline
*2-2021 I was emailing my Dr telling him I didn’t know how long in could keep going.
*7-2021 I started getting blurry vision in both eyes which was intermittent. It was blamed on stress, too much time starting at the computer for work, and my thyroid.
*Fall 2021 Memory went downhill, temper got short, I went for organized clean freak who could have 20 guests without flinching to a house that is a jumbled mess and I don’t want my mom coming over. I developed anxiety, etc..
*Sept 2021 Things had continued to get worse. Dr ran a bunch of labs. Positive for CMV (cytomegalovirus) and had a positive ASO (200). Went on doxycycline for a month.
*Nov 2021 tendered my resignation from a career I love and miss. I was doing the head nod at stop lights, brain fog had gotten so bad I was telling my kids to put trash in the refrigerator, and I feared I would end up causing harm to myself or a patient. Dr agreed and told me to apply for social security. He also bounced me back to the rheumatologist thinking it was related to my RA. Rheumatologist bounced me back saying it was my thyroid.
*Dec 2021- Rechecked ASO and it had more than doubled to over 400 (not good) but no one seemed concerned.
-Started to get intermittent periorbital edema which, again, was blamed on thyroid.
*Jan 2022 Diagnosed with Sjogren’s and Raynaud’s.
*Feb 2022 Started to have swelling in both legs equally to the point I had to get stretchy pants and can’t wear my normal socks- not edema. Feels like it is muscular. Also Started to have some balance issues that were attributed to the fatigue.
* Feb 2022 Increased right wrist pain (previously have had 2 surgeries on the hand and wrist). Steroid injection done but didn’t help for long. CT showed torn ligaments; no idea how or when.
*March 2022- Started to have pain from the hips down, intermittent at first then most of the time. Searing pain that is like my muscle tissue has been shredded. Sometimes it is so bad my husband has to help me change position. Again, blamed on thyroid.
*May 2022 Distal ulna radius joint replacement due to no improvement in wrist. Hardware started to come loose after just 3 months and there is hypertrophic bone growth on the lateral side. 2 doctors have said I will never recover and will never be able to work as an RN again. I can only write or type a few words before having to stop.

* May 2022 Primary care doctor put in referral to Mayo.
*June 2022 - Mayo, AZ - I saw rheumatologist, endocrinologist, & neurologist. Chest CT & labs done.
* Only abnormal labs were CCP & ANA (due to RA), slightly elevated SCL-100, and MOG titer 1:100.
-CT also had small nodules which did not exist 12-2019. I had to wait to schedule MRIs until after insurance approved. -At follow-up pulmonologist was not worried at all and said to just have another scan in a year to evaluate.
-End of July the pain has changed from the hips down to the shoulder blades down. It was relentless. If I bendy over it was far worse. I barely gotten slept as I could not get comfortable. My Dr gave me good pain meds but they did nothing at all. I also started to get hot easily (usually cold) and break into a sweat using the bathroom.
-Pain went back to just the hips down after about 3 weeks, but the sweat/easily overheated remained.
-MRIs were negative, neurologist blew me off at follow up. He said the MOG 1:100 was a fluke due to overall levels of inflammation, even though CRP and ESR are negative.
-Mayo Rochester declined to see me since Arizona cleared me.
-I’m waiting to see if the specialist and Boston accepts the referral my local Dr sent.
-I am now mostly couch bound and am issuing a transport wheelchair for any distances over about 200 feet.
*Sept Stopped Humira (TNF inhibitor) & started new med Rinvoq (JAK inhibitor). Developed acne-like lesions of scalp, neck, chest, & breast leading to infection & multiple visibly swollen lymph nodes. Doxycycline taken for 2 weeks. Stopped Rinvoq med after 1 month with slowly resolving symptoms. Still on methotrexate.

**As of 10-30-2022 symptoms include
-Brain fog, inability to focus
-Mood changes & anxiety
-Unable to find words or use wrong words
-Worsened fatigue
-Pain, swelling, cramping from the hips down. Muscles feel tight.
-Severe dry eye unrelieved by restasis & severe dry mouth/tongue with several episodes of thrush & sores
-Urinary hesitancy & constipation (no pain meds in over 3 weeks)
-Raynaud’s
-Intermittent mottling and paling of various parts of the body (shoulder blade, legs, chest, arm)
-Intermittent burning sensation of the right shoulder. It is worse when anything touched it. There is no swelling or physical indicator for cause.
-Joint pain & swelling
-Vaginal dryness and difficulty achieving orgasm.
-Assistance often needed for position change, dressing, bathing, & shaving, opening bottles.
-Assistance almost always for transportation
-Assistance always needed for meal prep, cutting meat, paperwork, grocery shopping, cleaning, medication reminders, appointment reminders

🤦🏽‍♀️ wow! That was long & I even left some tons out! If you made it to the end, Thank you! I would love to hear your feedback.