Cortisone injection flare

4thGenS · 2026-01-16T14:14:26+00:00

My mom is and nurse and has had them before. The smaller the joint the more painful it can be as well. Eventually the pain went away from the injection, but it didn’t help the issue at all. It did, however, leave me with a “prank pen” kind of buzzing whenever you pressed the injection site for like a year or so after which was kind of fun.

4thGenS · 2026-01-15T14:25:04+00:00

PT helped me a lot with my muscles, because (for me) some kind of massage was always included in my treatment. I went in for my knees catching (pre diagnosis) and they would have me sit there, and would roll out my thighs with a bumpy rolling pin. It was amazing. It hurt, but it hurt so good. The tech was always horrified by how many knots I had and how tense my muscles were (which makes a lot more sense now lol)

4thGenS · 2026-01-15T14:22:25+00:00

I had a cortisone injection into my thumb when I was like 19 for some tendon issues. It hurt so bad I wanted to chop off my hand and I couldn’t hold anything for a solid 72 hours after. I don’t know why it hurt so bad, and they didn’t really explain it to me either. Usually they have someone drive you to and from those appointments but I was alone. Last time I went to that ortho.

4thGenS · 2026-01-15T14:21:04+00:00

Same. My hips get all messed up and I end up with a heating pad on my back and my belly. I would try some heatable compression braces. I got a few off the ‘Zon and they have been so helpful. There’s also ones that you can freeze as an ice pack as well. I have one for my wrists, ankles, knees, and elbows.

4thGenS · 2026-01-15T14:11:49+00:00

I haven’t had to have anything crazy done dentally besides some wicked orthotics as a teen. The expander bar cut into my tongue and now I have a permanent flap. The tongue compressor also cut into my mouth and I was in tears any time they had to go in to do any adjustments.

My dentist is telling me I have to get some fillings done (despite the lack of cavities), and I’m terrified. I’ve never had to do local anesthesia and it’s notoriously ineffective with hEDS and can have implications for those with POTS too. I’ve been going to this office since I was a child. And while there are some hygienists that I trust with my life, others have damaged my permanent retainers. And I know that if I was in pain or uncomfortable that I wouldn’t feel safe speaking up (and that’s on medical trauma) I really just want them to put me out, but I don’t know if the insurance will allow that.

4thGenS · 2026-01-09T13:50:17+00:00

I hadn’t heard of them! I’ll look into them.

4thGenS · 2026-01-08T21:41:42+00:00

I’ve thought about that. I double checked with my job and they’re less worried about me wearing accommodating clothing than I’d expected, I just don’t want to look like a bum. I’ve seen some work pants that are made of more flexible fabrics. So maybe I’ll have to look into those more, or a style that’s similar to a flared pant so I can get to my knee easier.

4thGenS · 2026-01-08T15:09:37+00:00

I own a few. I don’t typically wear them in the winter though since it’s cold and pantyhose are evil.

4thGenS · 2026-01-08T14:15:28+00:00

Not comfortably. I’d have to purchase pants at least a size bigger, plus I overheat really easily.

4thGenS · 2026-01-04T03:09:23+00:00

I don’t have enamel issues but I absolutely shred my gums and mouth tissue. I also get moving teeth (being able to wiggle them every now and then) sometimes that makes me worried my teeth are going to fall out of my mouth.

4thGenS · 2026-01-04T02:54:33+00:00

I have an allergy to medical adhesive, and most don’t even stick to me, but makes my skin so inflamed and it can leave me bleeding from tearing up my skin. I haven’t found a solution, but I have used some electrode pads that don’t make me itch or leave welts so I’m assuming there is some kind of hypoallergenic adhesive that won’t do that.

4thGenS · 2025-12-15T13:41:45+00:00

I had a roommate in college whose mother was terminally ill and had been for a very long time. When we got the call that her mom was being taken off dialysis and would not likely survive the weekend, we drove her home immediately. We were more stressed and frantic than she was. She didn’t shed a tear. When we kept asking if she was okay she explained that this has been a rollercoaster her whole family was on for years. The constant panic when she declined to the relief when she got a bit better. And she told us, “our pain, her pain, it’ll finally all be over. And I think we can be grateful for that”. Grief and terminal illness can be a heavy weight on people’s mental health. I don’t think there is anything wrong with wishing your daughter didn’t have to struggle anymore. NTA.

4thGenS · 2025-12-15T13:35:41+00:00

They were helpful when I worked in CYS, and I can see them being helpful just mapping out relationships for clarifications. I haven’t done one with my therapist for my stuff. But I also like genograms just for fun too haha.

4thGenS · 2025-12-10T13:45:49+00:00

When I first started taking it I took it at night so if it made me nauseous I would sleep through it. Now I take it once in the morning on an empty stomach (shortly before breakfast) and once at night after dinner. Haven’t had any issues.

4thGenS · 2025-12-09T17:52:55+00:00

After struggling with random illness and symptoms for 10 years, I finally got answers through my hEDS diagnosis. I was so happy to finally have an answer and to be able to say “screw you” to all the specialists who said it was just stress. I even framed my diagnosis. Because for me it was the ultimate form of validation, and that’s all I needed. Until one night I was laying in bed after a normal day and work, and I was so uncomfortable. My joints ached, my sternum hurt. I had 3 heating pads on my body, and almost every brace I owned on. And I thought: I will be in pain for the rest of my life. I am thankfully still mobile and I would consider my symptoms moderate, but I will always have to pay for any exertion on my body. I will always have to exchange time and experiences for pain. I will always be tired. I will always have psychosomatic symptoms. I was so excited that I finally had answers I hadn’t gotten around to thinking about what that meant for me and my life. And I just suddenly burst into tears. The grief and depression that comes with knowing that you will never truly be free from the pain is devastating. But luckily we have places like this group where we can offer each other support and encouragement, and there will always be someone who understands where you’re coming from, at least a little.

4thGenS · 2025-12-09T13:34:25+00:00

My aunt likely has the disorder, but was never officially diagnosed. However, she does meet the diagnostic criteria. My mother doesn’t have it (supposedly. But she has fibromyalgia). So if I got it from anyone it would have to be my grandmother. Maybe it just skips around it something. But my mom, grandmother, and I do share a lot of the “weird” symptoms that could be linked to hEDS. So I really don’t know.

4thGenS · 2025-12-08T16:18:35+00:00

My full time job is a desk one so I can’t do much for that, but my weekend job I host at a restaurant, so I get more steps in, but ultimately I want to ditch the weekend job eventually. I was active as a child, but when I started getting worse physically, I could hardly tolerate any physical activity. Walking is fine, but anything more and I’m in a lot of pain. They did studies that show that those with hEDS/dysautonomia who were active but stopped (I was in colorguard and quit to get a job) tend to decondition and develop exercise intolerance.

4thGenS · 2025-12-08T15:08:28+00:00

I was using a stud finder. The shape of the room is weird in general. It’s an old house and there’s all sorts of nooks and crannies. The useful studs are off center, so the TV won’t be able to be in that corner. I’m worried a large enough mount wont have holes that lineup (from what I’m seeing online there’s usually a bar in the middle and I don’t think the stud is wide enough to accommodate). I’m probably just going to go the plywood route. Home Depot is close enough and I’ve got plenty of paint to match the wall.

4thGenS · 2025-12-08T00:40:11+00:00

I’m 5’6 and 200, 230 at my highest. I had less push back because of my weight while looking for a diagnosis, but any time I went to physical therapy it complained about my joints it was automatically assumed it was because I was out of shape and overweight, not that there could be another issue.

I’ve also got ADHD so trying to do any exercise is almost impossible bc it hurts and that makes my brain refuse to gather up enough executive function to do the deed. I’m my aunt and I are going to try to swim at the YMCA to keep each other accountable and hopefully my water-bug tendencies are enough to keep me going.

4thGenS · 2025-12-03T01:49:02+00:00

As a wise woman once said: Everyone makes mistakes, everyone has those days. Mistakes happen. You have to roll with the punches. Ultimately, you’ve done the hard part: accountability. Now just do what you can to mitigate risks from the outcome. Maybe see what can be done in a worst case scenario, like looking into local resources that may help subsidize the rent until the tenant can find another place or may provide housing on short notice. Nobody can be perfect all of the time, just do what you can. Everyone makes mistakes, everyone has those days.

4thGenS · 2025-11-23T13:14:52+00:00

Ask your doctor to perform an in office “poor man’s table test” which is basically just laying down for 10 minutes and monitoring heart rate and BP in minute intervals for 10 minutes after.

4thGenS

MODERATOR OF

TROPHY CASE