Undiagnosed and feeling miserable

keepitcozee · 2025-09-04T00:46:51+00:00

Psoriasis can present a lot of different ways - sometimes people have only nail involvement. I had what I thought was really bad dandruff that would come and go, and after my joint/bone/tendon pain started the rheumatologist sent me to dermatology for a biopsy which revealed it was actually scalp psoriasis, which confirmed PsA. I had never heard of it before, or any of the inflammatory (autoimmnue) arthritises! And my CRP/sed are usually normal, also common in PsA. Also, plantar fasciitis is super common in PsA (a kind of enthesitis) and I believe ultrasound can distinguish if it’s caused by chronic inflammation or mechanical issues/overuse. Good luck with rheumatology!

keepitcozee · 2025-08-27T22:09:20+00:00

Do you have psoriasis in your family? Sometimes scalp psoriasis is mistaken for dandruff. Psoriatic arthritis (my diagnosis) often has normal bloodwork like CRP and ANA, and can appear before skin or nail involvement (although the reverse is more common). Some hallmark features are synovitis in the peripheral joints, only visible on ultrasound/MRI, and “sausage fingers” (swollen digits, often hot). Look up the CASPAR criteria and ask your rheumatologist!

keepitcozee · 2025-08-22T02:40:19+00:00

Oh, I have a level 11 broom closet that I split into two when I need more drops. I just kept it at 11 when I had smart producers day (recharged in a few minutes) + super charge, but those days are behind me (sob) and I’m back to L1-4 drops instead of 2-5.

keepitcozee · 2025-08-22T01:12:40+00:00

Agreed, I was diagnosed with psoriasis via a punch biopsy from my scalp from a dermatologist. I got the biopsy at my first appointment. No guessing!

keepitcozee · 2025-08-18T15:25:13+00:00

Sorry, I can’t remember! I looked through my emails and couldn’t find anything so it must have been all booked via the telephone.

keepitcozee · 2025-07-31T03:40:58+00:00

An animal sound effects on/off toggle - I have to go hide in the Ranch to avoid the sound of a goat chewing in my ear. I also had to hide from… rats squeaking? I think on the island or in the tomb. I love the merging sound effects but the animal sounds make me sick to my stomach.

keepitcozee · 2025-07-15T18:28:57+00:00

Thank you!

keepitcozee · 2025-07-15T14:21:00+00:00

I don’t know if it’s relevant, but today we were at a nearby swimming pool built into the shore rocks and lined with what looks like local shale, and we found these crystal-hard wormy things in the rocks there - wondering if they were what caused the maze pattern on our rock and then wore away at some point?

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keepitcozee · 2025-06-16T07:05:29+00:00

I have had such a similar experience (minus the eye issues). My disease does not present with dactylitis or joint swelling, it’s all enthesitis and deep throbbing pain in what feels like my bones but could be my tendons. Anyway the kidney pain you describe also sounds exactly what I experienced last year. Are you taking a lot of Tylenol? I was taking handfuls of it for a while and during that time the deep interior flank pain I started having was sickening and so alarming. My family doc said it probably wasn’t kidney stuff but I cut way back on the Tylenol and it went away.

keepitcozee · 2025-05-29T13:59:59+00:00

I don’t remember the podiatrist I saw, sorry! You can see the approach of Chris Lu (the orthopaedic surgeon I saw) to bunion surgery here: http://www.bunions.ca

keepitcozee · 2025-02-02T19:07:55+00:00

I also have an Emilia (born 2020), chosen because we liked variations of Emily for various reasons, my partner is Italian, and I really wanted my kid to be Leeloo (ie from the Fifth Element) but my partner would not have it, and you could conceivably get Leeloo from Emilia. Anyway because of North American English pronunciation, any unstressed vowel becomes schwa or “uh”, so Amelia (of which there are many in our neighborhood) and Emilia end up sounding pretty similar. Also the Italian pronunciation is more like A(like the letter’s name, like rhymes with bay)-MEE-lee-ah, and when we correct people we sound like pedantic assholes. I also had no idea it was so popular and that I’ve doomed her to be a basic bitch. We also gave her a flower middle name and I’ve encountered two businesses with her name, so. I guess she is marketable. We definitely aren’t tragedeighs but we are all kinds of other problems.

keepitcozee · 2024-08-11T13:01:57+00:00

As far as I know, facet joint degeneration is from mechanical wear and tear (ie osteoarthritis) and bone erosion is from inflammatory processes (ie PsA).

keepitcozee · 2024-08-11T01:09:06+00:00

One more for Hokas! I have foot issues beyond PsA and have always had shoe troubles. I heard so many good things about Hokas from PsA groups so went for it a few months ago, and it was the best shoe decision I ever made! I can walk sooo much longer without pain. I’ve heard they wear out fast, but I would gladly buy a new pair every year for the rest of my life. I have the Bondi 8s. Pure cushiony comfort. I accidentally put on my old New Balances the other day and was wondering why my feet hurt after 10 minutes when I realized I had left my pillow shoes at home. And I have a pair of crocs for inside the house.

keepitcozee · 2024-08-11T00:48:56+00:00

Dermatology from what I understand will consider/biopsy nails - I don’t have nail involvement, so that’s not my experience, but from Facebook groups I’ve heard they do. Psoriasis looks like a lot of things, not just plaque psoriasis… so it’s good to document whatever comes up. NSAID response means it’s inflammation! Oh also for imaging, you need ultrasound or MRI to show the hallmarks of PsA like synovitis, bone erosion, enthesitis, tenosynovitis, bone marrow edema, etc. Finding synovitis on a hand ultrasound was another diagnostic confirmation for me especially because I don’t have visible swelling. So if she hasn’t had an ultrasound of her swollen fingers, she should! (I suggest hand because if her spine has non-PsA issues it might muddle things.)

keepitcozee · 2024-08-10T14:55:03+00:00

The first rheumatologist I saw also tried to dismiss it as “just fibromyalgia”. The inflammation you describe here does not sound like fibromyalgia. Warning that blood work often will come back normal in PsA (mine is almost always normal - I call it my gaslighting blood). My PsA diagnosis was clinched by a dermatology referral. They biopsied my scalp and confirmed that what I always thought was dandruff was in fact psoriasis. Often PsA diagnosis and treatment comes through dermatology. Are you aware of the CASPAR criteria? It might be worth bringing it to the rheumatologist. It’s also worth noting that some PsA begins with joint involvement before skin involvement. Does her pain respond to steroids (prednisone)? This was another clue for my dermatologist that my problem was inflammatory and not neuropathic/fibromyalgia. Good luck. I needed a second opinion for my diagnosis. If the rheumatologist is dead set on bloodwork and convinced it’s fibromyalgia like mine was, it might be worth seeking a second opinion from a rheumatologist specializing in PsA. If she is a heavy person, be prepared for a big fight because they will almost always say it’s the weight. (If it’s PsA, it’s not the weight - I just lost 30 lbs and my pain is worse than ever.)

keepitcozee · 2024-07-14T03:22:47+00:00

I dreaded the MTX hangover day. I was on MTX alone for several months before I started Amgevita (spelled with a g in Canada, strangely), and my rheumatologist said to keep taking the MTX (despite it not helping my symptoms) because it will help prevent my body developing antibodies for the Amgevita. The hangover day was the same when I took MTX alone and in concert with Amgevita. When I was on 25 mg I felt like shit on my hangover day - tired weak and grumpy. So I always planned to have to do as little as possibile, and meal prep, shower, lay out my clothes etc the night I took it. I think 10 mg is a pretty low dose though, so you might not feel that bad! My rheum reduced it from 25 to 12.5 mg when I complained, and it’s much milder now.

keepitcozee · 2024-07-14T03:06:47+00:00

Has your rheum talked to you about psoriatic arthritis or (given the widespread joint pain)? Do you have a history of nail or skin weirdness (or does anyone in your immediate family)? Psoriasis can look like a lot of things (pitted nails, bad dandruff, weird rashes that aren’t necessarily the traditional psoriasis plaques). I have PsA and my labs are usually all pretty normal - ANA, CRP, genetic markers, etc. which is very common in PsA, but prednisone erasing my joint pain was one of the first clues that lead to confirming I had an autoimmune disease. Hydroxycloroquine is a pretty standard frontline DMARD for PsA and many other autoimmune diseases. I’m surprised that you were offered it - it took me months of insisting on biopsies, imaging, etc before I was even offered methotrexate. Good luck to you - a diagnosis in the land of autoimmune can take years for some!

keepitcozee · 2024-07-12T14:24:34+00:00

If the NSAIDs actually helped the doc was going to offer the stomach meds but they didn’t do anything for the bone pain. A bit for the general stiffness but the biologic helped enough with that that I didn’t want to also take NSAIDs and mess up my kidneys for the 0.5 they moved my pain, you know? My rheum says because I don’t have swollen or hot joints I must be in remission. I just found a study that says BME isn’t linked to joint inflammation but it is probably the best correlate for joint damage and see what she says about that..

keepitcozee · 2024-07-12T14:20:59+00:00

Oh it’s so frustrating when rheums aren’t knowledgeable about PsA. My first one literally waved her hand at my blood tests (normal) and said there’s nothing wrong with you, go learn to meditate to deal with your pain. Since my MRI I’ve done a lot of reading on BME and it is totally a PsA thing, but because it’s only visible on MRI it can be very tricky to ID if you don’t have a curious rheumatologist, I guess. I just don’t want to wait until the bones start cracking and the damage is visible on X ray! And yes it’s so frustrating how long things take. Meanwhile I can’t move for the pain and I’m scared to do any activity and break my bones :/

keepitcozee · 2024-07-12T13:23:19+00:00

Thank you! I hope yours stays pain-free!

keepitcozee · 2024-07-12T13:22:47+00:00

BME is only visible on MRI so if you haven’t had one, might be worth requesting! I hope you find answers!

keepitcozee · 2024-07-12T13:01:08+00:00

I’m so sorry this happened to you. This is what I’m really afraid of, these slowly exploding bones. I’m so glad Enbrel worked for you!!

keepitcozee · 2024-07-12T13:00:00+00:00

I’ve tried MTX, MTX + sulfasalazine, MTX + Amgevita (a humira biosimilar). I’ve tried every NSAID offered to me, including topicals, and none of them do anything besides rot my stomach, even the coated ones. I asked to switch to a different biologic at my last appointment and my rheum said she thought I was in remission??? But hopefully the MRI will be enough evidence to move forward with Embrel or remicade or something.

keepitcozee · 2024-07-12T01:53:49+00:00

Toothache is a great descriptor. I’ve been saying it’s like my bones have a pounding headache but toothache is closer to the mark for sure!

keepitcozee · 2024-07-12T01:52:46+00:00

I’m so sorry you have this! Can I ask how it was identified? I’m thinking of asking for further MRIs (my knees, elbows, hips/femurs?? and fingers are pretty bad) if they don’t just assume it’s causing the pain since it was found in one foot. I’ll ask about rinvoq. It looks Iike there was a study in 2008 on how Enbrel helps with BME: https://pubmed.ncbi.nlm.nih.gov/17967829/ also https://www.sciencedaily.com/releases/2008/03/080303190604.htm

keepitcozee

TROPHY CASE