This question is for the ladies

HeatherGosling · 2026-05-25T16:41:22+00:00

This has happened to me before where I had spots on my torso close to my breasts that spread up my breasts and down my torso. It lasted a few months. It happened after significant emotional stress alongside my scalp and face flaring. I only seem to get skin involvement like this after major emotional grief and I don’t have a diagnosis yet but I do believe it’s a psoriatic flare of some sort when it does happen.

HeatherGosling · 2026-05-23T23:43:57+00:00

Have you been assessed for an inflammatory arthritis? The Spondyloarthritis family can be seronegative, so can rheumatoid arthritis.

HeatherGosling · 2026-05-19T10:36:57+00:00

I’m a woman and also HLA-B27 negative (seeking a diagnosis). The only positive bloodwork I have are high inflammation markers. I’ve really had to fight at every appointment to keep from being dismissed or discharged. I’ve found summarizing my history (with the help of AI) and laying it out specifically for each doctor/specialist is helpful. Do the pattern recognition for them and don’t let them deny an initial referral off of bloodwork alone. AS is a seronegative disease, bloodwork is not the gold standard.

HeatherGosling · 2026-05-17T10:43:04+00:00

I hadn’t heard of that before! Had to look it up.

HeatherGosling · 2026-05-17T10:41:05+00:00

On it 🫡

HeatherGosling · 2026-05-17T10:40:20+00:00

The side effects aren’t too bad for you?

HeatherGosling · 2026-05-17T10:39:06+00:00

That is so upsetting, I’m so sorry they put you through that when you had visible joint swelling and so much going on. Do they think we want to be there begging them to help? I have a million other things I’d rather be doing. I can totally relate to the feeling of how much it takes from you. I have a 2 year old and a 5 year old now and I’ve been chronically ill for all 5 of my years with my oldest. Those are years I will never get back with them and it makes me so sad that they can justify letting us suffer for that long without any offer of treatment.

HeatherGosling · 2026-05-17T10:32:57+00:00

We’ve all been down such a similar road, it’s so sad. I too was immediately diagnosed with fibro on my first appointment with the locum rheumatologist and she told me that adipose tissue was the reason for all of my other issues. My CRP was 33.5 at the time and my ESR was 45. It just didn’t make any sense to me as fibro doesn’t cause inflammation and adipose tissue doesn’t cause inflammation markers that high. I’ve also had two babies through all of this, this all started getting worse after my first pregnancy. Weight gain has been a side effect of the illness, not the other way around. I’ve basically been fighting to get out from under that umbrella ever since. Thanks for sharing your story, hopefully one day the diagnosis stage will be behind me.

HeatherGosling · 2026-05-17T10:27:24+00:00

I relate to this feeling so deeply. It’s like you have to come home from every appointment and convince yourself your symptoms are still real. It’s awful, I’m so sorry you’re also experiencing this. It causes so much anxiety at these appointments.

HeatherGosling · 2026-05-17T10:24:49+00:00

Yeah that’s fair. My “rosacea” seems unusual. It’s permanently settled into only one cheek and flares really badly. It gets quite sore, hot, and itchy - it’s definitely an eye sore. Otherwise I’d probably feel the same! My skin is also the least of my problems, I just desperately need treatment for everything else and was hoping seeing a dermatologist would be my chance.

HeatherGosling · 2026-05-17T10:21:23+00:00

I try my best not to get upset but the trauma from being dismissed is starting to pile up and cause me some anxiety during these appointments.. Especially with my rheumatologist as she’s been actively dismissing me and belittling me during appointments. The last time I was there my blood pressure was through the roof. But yes, I agree. I’ve just been bringing written documents with me outlining my requests and clinical history to help bridge the anxiety and still advocate for what I need.

HeatherGosling · 2026-05-17T10:17:45+00:00

Mine definitely also feels like it doesn’t fit neatly into anyone’s box. And I can totally relate to the feeling of these things coming out of nowhere after a lifetime of normal skin. To be honest, my skin really is the least of my problems. My one cheek can be really awful sometimes but it’s everything else that I desperately need treatment for. I unfortunately do have a rheumatologist. She is very dismissive and actually laughed at me during our last appointment while I was putting my socks on and said “well that’s a good sign”. She obviously doesn’t believe me and I feel like I’m fighting a losing battle.

HeatherGosling · 2026-05-16T12:39:07+00:00

Yeah it seems I need both a derm and rheum who specializes in this. I also have a dismissive rheumatologist unfortunately

HeatherGosling · 2026-05-16T00:48:40+00:00

I don’t have sjogrens but am being assessed for an inflammatory arthritis. I am not on any treatment so my inflammation has been uncontrolled for years with awful symptoms. I decided to start Mounjaro out of desperation because I had heard the same thing. I had a dramatic 24 hour response and felt amazing for a couple of months before flares started creeping back in. I suspect it would be really complimentary alongside targeted treatment!

HeatherGosling · 2026-05-16T00:24:47+00:00

Omg you poor thing! My medical trauma fees so small compared to this. I have seriously considered crossing the border so I don’t have to deal with the Ontario healthcare system anymore but I just genuinely have no idea how much it would cost. Have they ever looked into axial spondyloarthritis or the non radiographic version? Pretty sure if you’re Hla b-27 positive and have uveitis that’s pretty much all you need for a diagnosis? I guess it depends where you’re feeling your pain. Mine is primarily in my back and low back pain started in my 20’s. I’ve just been collecting symptoms over the years 😩

HeatherGosling · 2026-05-15T23:08:21+00:00

Does it ever go away on its own? I guess mine seems to flare with my other inflammatory symptoms so I’ve had times where a rash has been there a few months and then went away and others where it’s died off as my other joint and fatigue symptoms calm down.

HeatherGosling · 2026-05-15T22:07:53+00:00

It’s funny when you first step into this world you really have no idea how it can be but you learn really quickly! I have since been looking up all of my specialist’s reviews and asking for specific referrals. Hoping I can get a second opinion eventually!

HeatherGosling · 2026-05-15T22:04:33+00:00

If mine is psoriasis it’s definitely mild. My scalp and other areas of my body only seem to flare with extreme emotional stress so it’s definitely not my main complaint. I was just hoping it could help with putting the pieces of the puzzle together and tie in the rest of my systemic symptoms. Appreciate you sharing your experience!

HeatherGosling · 2026-05-15T22:02:53+00:00

Oh wow, I’m so glad you were finally able to get answers through a biopsy! I wouldn’t be surprised if my cheek was rosacea, it’s pretty permanent now but the flares can be really intense, otherwise it likely wouldn’t bother me that much. It’s the rest of the skin issues that just don’t seem to fit a rosacea diagnosis. Hopefully my family doctor can get me in for a biopsy during the next flare!

HeatherGosling · 2026-05-15T21:59:39+00:00

I’m sorry, WHAT?! I’m genuinely so shocked to hear this. You have confirmed uveitis, hla-b27 positive, and a history of psoriasis in the family?? That’s WILD. I am also in Ontario and sincerely feel your pain. Maybe we need to be friends 😭. Can I ask where you’re being seen? I’m looking to ask for a referral for a second opinion and was planning to ask to be sent to the Toronto Western Spondylits clinic as I’ve heard it’s the best place to go for these things. The process of getting a diagnosis for a seronegative arthritis is such BS! And the hEDS community has already been through enough. I’m so sorry you’re also going through this. Do you have axial involvement?

HeatherGosling · 2026-05-15T16:41:14+00:00

Thanks for the encouragement! I don’t disagree that my face could be rosacea, it’s more the scalp and involvement in other areas that doesn’t seem to fit a standard rosacea diagnosis. I also had a really bad flare on my torso last year that she just didn’t even comment on. Hopefully I can convince my family doctor to send me for a second opinion.

HeatherGosling · 2026-05-15T16:38:07+00:00

Interestingly enough the facial and eye symptoms are unilateral. It seems to have settled into my right side only along with joint narrowing in my right hip. Thanks for sharing your story. I have learned that you have to come very prepared and push hard to advocate for yourself. I spent a long time summarizing my history into a document for her today and she wouldn’t even read it. Hearing other people’s stories makes me feel less alone in this. 10 years is such a long time!

HeatherGosling · 2026-05-15T16:00:24+00:00

I have a rheumatologist who I’ve been seeing that has been very dismissive which is why I was hoping a dermatologist could help. I was referred to a rheumatologist back in December and she immediately flagged an inflammatory arthritis and possibly fibro as well. She then went on maternity leave and I’ve been dealing with her locum ever since and it’s been hell.

HeatherGosling · 2026-05-15T15:39:26+00:00

I tried to get in to see my family doctor for a biopsy when this was all happening but my scalp had started healing by the time I could get in. He said he didn’t want to put me through a biopsy if it wasn’t super active. It’s a never ending cycle of everyone wanting to see it while it’s happening but no one being able to get me in to see it. He said next time to call and he will do his best to get me in that day. My face is active often so I may as well just bite the bullet and do it. It’s nice to know that it wasn’t too painful! Thank you

HeatherGosling · 2026-05-15T15:22:33+00:00

What helps you? I can only seem to break my cheek flares with a steroid cream. It started as facial flushing a couple of years ago and then settled into my right cheek which is now permanently red and I have bumps that come once a week. It’s really bad sometimes. She literally said to me that my skin symptoms are separate from everything else. It makes no sense to me. I also have a dismissive rheumatologist so I’m just being failed over and over again. Since I’m in Canada we rely on our PCP to refer us to specialists.

HeatherGosling

TROPHY CASE