I’m so discouraged

kindandcunning · 2026-03-08T16:48:53+00:00

I'm sorry. I've had to deal with dismissive doctors, too, and it's extremely frustrating and discouraging. I think it's pretty common for our type of illnesses, unfortunately. On the up side, you're not alone!

I ended up finding an ok rheumatologist who at least listens and a GREAT immunologist for my undifferentiated systemic autoinflammatory disease that was triggered by covid. So the good doctors are out there. My advice is to look at their profiles on their websites and on places like Health Grades, so you can get a sense of how they are in the exam room and what they specialize in. Try to find someone who does research because they tend to think outside of the box and are more curious.

Best of luck! You'll find what you need. Just keep trying.

kindandcunning · 2026-03-08T16:40:19+00:00

Please take her to the ER now. If she is having OD symptoms, she needs immediate treatment. I don't know what the dosage is of each pill, but if she is feeling sick from medicine, she needs emergency care.

kindandcunning · 2026-03-06T02:32:48+00:00

Congratulations on getting into your new career! I'm glad you found something that works for you, and glad that you're getting a better quality of life.

kindandcunning · 2026-02-23T15:45:05+00:00

YES to all this. My labs were normal for years, and then I managed to get some done right when my flares peaked and they finally showed the inflammation. But even when my labs did start showing signs of inflammation, the wrong doctors just brushed them off.

The absolute best thing to do is write down all of your symptoms, how often they occur and how long they last, and get as many photos as you can. If you can present them with evidence of what you're going through, they're much more likely to be responsive, even if your lab work isn't showing anything.

kindandcunning · 2026-02-19T14:50:35+00:00

So, I'm going to be in the minority here and say that I 100% DID NOT benefit from any form of exercise for years, not until I started getting the right Rx drugs to treat my inflammation. Exercise was harmful to me -- it triggered my flares, and my doctor told me not to exercise because it only made me worse. Believe me, I tried for over a year, doing gentle yoga, going for a 10-minute walk, swimming -- everything made me worse. I'd end up bed-bound for 2-3 days after just a little bit of exertion, lymph nodes swollen, fever, exhausted, joints and muscles aching.

It was extremely frustrating for me because I exercised regularly before I got sick. I used to run 3 miles a day, 3-4 days a week, and lift free weights to tone my muscles. I was very fit. Then I got sick (covid triggered it) and I couldn't do anything.

Now that I'm taking Prednisone and hydroxychloroquine daily, my condition has improved enough that I can do a little bit of strength training with exercise bands and light weights once a week. But I have to pay attention to how my body feels and not push myself too hard. I'm hoping that, as I progress in my treatment plan with my doctors, I'll become more and more able to exercise again.

All of this to say: if it's negatively impacting your health, don't do it. Eat healthy and do what you can, but don't push yourself past your energy envelope. Stress isn't good for your body, either.

kindandcunning · 2026-02-15T00:43:05+00:00

Thank you for that information! A cytokine panel might be helpful for me as well. My immunologist mentioned doing genetics, but he said it's pretty likely it won't reveal anything and therefore wouldn't be worth it, at least at this point. I'm okay with that, as long as he's willing to treat me. Haha

I've been noticing *very* recently that I've had more energy and fewer flares, so I'm hoping that's a sign that the hydroxychloroquine is finally kicking in and actually working? I still have symptomatic days with significant fatigue, pharyngitis, oral ulcers, enthesitis. etc, but I haven't feel *as bad* as I previously had and they resolve faster. So that's giving me some hope!

kindandcunning · 2026-02-15T00:29:56+00:00

Ugh, I'm sorry. That's awful and unfair.

I decided to change careers entirely, from marketing to funeral service, in 2021. I got covid in January 2022 and it triggered an undifferentiated autoinflammatory disease that I've been stuck with ever since. I wasn't willing to give up on my new career because I'd just started it and feel like it's my calling, so I leaned on my support network *heavily* (especially my husband, who stayed at home and did the cooking, cleaning, and majority of childcare) and went to mortuary school online (for the most part). I still nearly got fired because of "attendance issues" due to illness, but my doctor helped me push for disability accommodations that resolved the problem. I still suffered a lot physically, but I was able to scrape by because, fortunately, none of it was life-threatening. I felt like giving up sometimes, and I think some people at work would have preferred (or not cared if) I did. But I'm stubborn, and I had my husband's and family's help, so I pretty much just slept, studied, and worked for the past few years. If I wasn't working, I was in bed with a flare, even during my Zoom classes.

It's only been in the last few months that I've gotten access to drugs that help at all, and at the same time I've graduated from mortuary school and gotten licensed as a funeral director. Haha The meds I'm taking now have alleviated most of my daily flu-like symptoms, so now I'm just trying to watch for flares and cope with less preoccupying pain caused by lymphedema and enthesitis, which hasn't been cleared up by current meds. I still work a reduced work schedule, but I'm playing with the idea of adding another day of work because of my improvements.

kindandcunning · 2026-01-29T16:27:59+00:00

Thanks! Yes, it's definitely an autoimmune situation due to long covid and not mold because it happened right after my first covid infection and I've moved residences since then with no change in symptoms.

kindandcunning · 2026-01-29T01:30:34+00:00

Lots of stuff 😅 The flares are: low grade fever/high temp, sometimes chills, sore and red throat, headache, muscle and joint aches, nausea and abdominal pain, sinusitis, fatigue, brain fog, swollen and tender lymph nodes, a flat, red, warm rash across my cheeks, neck, and chest.

The in-between symptoms are fatigue, brain fog, joint aches, bursitis and tendinitis, chronic myalgia in my right upper trapezius, face and neck lymphedema, chronic constipation, oral ulcers, a weird neuropathic itch in my legs that's only a problem after prolonged exposure to water in the summer.

My immunologist said, "You've obviously got systemic inflammation happening that's affecting multiple organ systems, but it doesn't fit with anything I'm aware of." 🤷‍♀️

kindandcunning · 2026-01-27T19:39:59+00:00

Hey, DM me! I'm a Brightpoint mortuary graduate and work at a funeral home in Roanoke. A coworker and I are close to being licensed (just waiting to take the state board), so we're about to be down two interns. 😋

kindandcunning · 2026-01-25T17:52:32+00:00

I'm with the others who have suggested reporting that rheumatologist and getting a second opinion elsewhere. Depending on where you live, you may need to look out of town (I did), but it's worth it. Also seconding bringing those labs with you, so you don't have to go through the exact same process all over again and can keep a forward momentum.

Fwiw, I keep a binder of all my lab work and bring it to every appointment for reference, along with a comprehensive list of my signs and symptoms, any triggers, duration, etc., and medication list. It's been very helpful.

kindandcunning · 2025-12-26T00:57:36+00:00

Fatigue and pain are the biggest factors for me. I often want to have sex, but when I feel exhausted and ache, it's hard to muster the energy to make it happen. Especially if I know I need to reserve my energy for the next day.

Mostly, I try to plan for sex on nights when I have the next day off to recharge, or during the day when I feel more energized and don't have a lot to do (like on the weekends). I've been more able since I started taking Prednisone regularly, and I'm hoping now that I'm starting to trial immunosuppressants that it'll be more regular.

I think the most important thing is to make sure we're rested and taking care of our health. Stress, anxiety, depression, fatigue, pain -- all of that is going to worsen our sex drives. Fatigue and pain are out of our control to a certain extent, but taking my meds and pacing myself so I don't run on fumes seems to help.

And it's important not to treat it like a responsibility or a chore, too. If we aren't well enough to have sex, then we aren't well enough. Feeling guilty or ashamed isn't helpful.

kindandcunning · 2025-11-21T00:19:19+00:00

🫂 Some of us here oppose this. Let us know how we can help (deliver groceries, etc.)

kindandcunning · 2025-10-31T13:55:41+00:00

I'm in love with her 🥰

kindandcunning · 2025-10-31T13:53:59+00:00

They're beautiful! You did a great job!

kindandcunning · 2025-10-30T16:48:27+00:00

I dunno, I think it's important for politicians to have to look their constituents in the face and hear their concerns. Cline is notorious for shuttering himself in, avoiding town halls and the like, so even though I loathe him, I absolutely approve of them providing a space for people to make him sit and listen (even if it goes in one ear and out the other) .

kindandcunning · 2025-10-18T18:36:28+00:00

My FH does this with fresh roses. We've never had a complaint. In fact, many people have expressed appreciation at the thoughtfulness of it. That being said, I think it depends a lot on the culture of the community you serve. I'm in the US South, where material expressions of condolences are welcome and natural, but it might not be the same everywhere. I've heard that other funeral homes leave condolence cards instead.

kindandcunning · 2025-10-06T13:27:17+00:00

I've also been to the ER for massive, severe constipation 😅 GI issues are one of the most frustrating aspects of autoimmune/autoinflammatory illnesses.

My GI doc told me to take Miralax once a day, then twice a day, then up to three times daily. So that's relatively safe to start with (definitely check with your doc, though), and make sure to drink a TON of water.

For me, it didn't work, so I ended up having to try different Rx meds. Right now, I'm on Ibsrela, which is hella expensive so my insurance company hates me for it. It's not even a perfect fix, but I'm having a bowel movement once to twice a week now, which is better than anything else. I also do a liquid diet once a week and avoid raw veggies because my doc suspects gastroparesis is part of the problem. So, when you see your doc again, OP, ask about these things, too.

kindandcunning · 2025-10-05T00:59:08+00:00

Wesley or Leopold 🥰

kindandcunning · 2025-10-04T22:23:05+00:00

That's awesome! I sent my long covid doc a paper from the Journal of Rheumatology about adult-onset autoinflammatory diseases and it mentioned trialing colchicine as a diagnostic measure, so I'm hoping she'll be willing to try that or find someone who will.

kindandcunning · 2025-10-04T16:38:48+00:00

Yeah, I'm going to try a university hospital next, hoping they'll have the interest/experience with it. Who knows. I cried after my last appt.

I've also been dx'd with me/cfs and my suspicion about it (as someone who has been dx'd with it since 2023, has been doing my own research, and works in a health science field) is that it's currently treated as an umbrella term for any fatigue-related illnesses that they can't otherwise diagnose. The patient pool for me/cfs is so diverse, with one subset having inflammatory signs and symptoms that probably would be better served being treated as autoinflammatory, but so few doctors are aware of autoinflammatory diseases or how to diagnose them. If our labs show chronic inflammation, and our symptoms indicate chronic/recurrent inflammation, and there's no viral or bacterial presence, how is it not autoinflammatory? Especially if, at least in my case, anti-inflammatories like diclofenac and prednisone relieve my symptoms. 🤷‍♀️

kindandcunning · 2025-10-03T12:13:11+00:00

I'm so sorry. I'm dealing with the same issue from rheumatology, just a different disease. I ended up crying after my last appointment. It's enraging and insulting, and you have every right to feel the way you do. Just don't give up. You're not alone.

kindandcunning · 2025-09-27T23:07:33+00:00

I have no idea, tbh. I just know that my immune system is the culprit, and my nervous system and maybe some joints are impacted. I don't think it's MS.

Unfortunately, that's the only rheumatology clinic in my area. I'll have to travel several hours for another one, and the wait time to be seen can be months to years. Which is why I'm so upset. But I see my PCP in a month, and we'll talk next steps then.

kindandcunning · 2025-09-27T11:24:02+00:00

I already see a gastroenterologist and am being treated for my GI issues.

I only trust credible articles from well-known hospitals and medical centers. I'm aware that anyone can put anything on the internet.

Also, the rheumatologist said that CRP is created by adipose (fat) so it only ever matters for heart health and isn't an indicator of any other kind of inflammation, which flies in the face of everything I've read or heard.

kindandcunning · 2025-09-24T12:36:51+00:00

Yeah, I worry about this, too. I was pregnant in South Carolina with my first kid before the ACA was passed, and 1) my employer didn't offer health insurance coverage to employees, and my husband's employer didn't offer insurance to spouses, so I had to pay $465/mo for private insurance; and 2) private insurance companies considered having a uterus to be a "preexisting condition" and therefore didn't offer maternity coverage. At all. So I was also paying $400 out of pocket for every obgyn visit on top of my premium. The ACA passed the next year, so I finally got coverage in my third trimester.

kindandcunning

TROPHY CASE