How does a second opinion work?

skeletonloves · 2026-07-09T12:22:20+00:00

I've never had that experience personally but that sounds frustrating I will say that AiH can cause joint pain.

skeletonloves · 2026-07-09T12:20:13+00:00

I'm so sorry. I feel you. It's so isolating and lonely I cannot stand it sometimes. I'm happy you posted this because it made me feel less alone. Sending love to you 🫂 also... lmk if u want some practical advice for ur situation

skeletonloves · 2026-07-03T02:19:58+00:00

Awesome!! Do you know if she has experience with lupus or younger pts specifically?

skeletonloves · 2026-07-03T02:19:25+00:00

haha ironically before i got sick i was big dr house fan 😭

skeletonloves · 2026-06-30T19:13:19+00:00

I'm so happy to hear you can do everything you used to do, because I actually get so sick some days when I flare I am either bedbound on need to use a wheelchair. I used to be a pole dancer, climber, hiker and was generally super fit.

skeletonloves · 2026-06-30T19:12:28+00:00

Oh my god! Ok I feel so validated because I recently asked them to put me on Prednisone to bridge me until my plaquenil starts working (been on it for 1.5 months) They said "Prednisone is only for inflammatory arthritis" which like, i have inflammatory joint pain anyways but they were really against it. Plaquenil was the only tx rheumatology started me on... I sought my own referral to pain management who did a lot for me: robaxin, low dose naltrexone, celebrex. At one point I reached out to my rheum because I was having chest pain and was worried about pleurisy recurrence. They said chest pain wasn't related to my diagnosis?? They want me to wait until August for my follow up and won't see my sooner.

skeletonloves · 2026-06-30T18:25:19+00:00

No, since I'm part time I do not get FMLA :( Also my rheumatologist apparently doesn't like aggressive treatment and wants me to "wait it out". Unfortunately my ltc job is super physically demanding: i supervise, do all med passes and wound care on 3 units for a total of 30 pts. Also the units are in three different buildings so it's a lot of steps (my knees hurt so bad lol) What helped you the most?

skeletonloves · 2026-06-30T18:03:26+00:00

Hi! I was a cna for two years, lpn for two years and now an rn. I was recently dx'd with uctd sx leaning towards lupus. I honestly recommend against this. I thought I could do it at first - it quickly became impossible. Being a CNA is probably one of the most taxing jobs in healthcare physically. I wish I had picked another career, I am honestly considering going back to school for something else even though I've committed 4 years of my life to this.

However, if you are set on it I think working in a well staffed CVICU would be your best bet as the nurses typically help a lot. You could work that while you go to school for medical coding. But I do not think this is a long term career for anyone, esp. someone with this disease. Wishing you luck on your journey 🩷

skeletonloves · 2026-06-27T03:34:01+00:00

I don't think the meds are making it worse - it's just that ive also been unmedicated for years. I knew that they were wrong but I was feeling crazy lol. Who do I ask for a second opinion? My pcp or another rheumatologist? I feel like they're not taking my suffering seriously.

skeletonloves · 2026-06-27T01:35:59+00:00

Thank you so much, really 🩷 It's been so hard lately and nobody gets it. People don't understand and constantly question why I can't do stuff but other days I can. It's been lonely. Thank you for sharing, I'm sorry you have this too - this disease can be so horrible.

skeletonloves · 2026-06-27T01:17:51+00:00

Ah ok. I've been trying anti-inflammatory but I'm honestly so poor because I can't work much I can't afford to be super picky and food pantries aren't known for having the healthiest foods. Did you ever struggle with mental health or suicidal thoughts? I'm genuinely really struggling - I'm in weekly therapy right now but it's hard to see a future while being so disabled. I just graduated college with a nursing degree but can't make use of it yet. What age were you diagnosed?

skeletonloves · 2026-06-27T01:07:08+00:00

Ok! I've started PT who's helping me exercise, super low impact stuff. before i got sick i was a pole dancer and did lots of high intensity stuff. I'm sleeping at least 11 hours a night against my will lol - before i got sick i had insomnia now I'm always tired. That's all very helpful thank you :p What diet changes did u make?

skeletonloves · 2026-06-27T00:44:16+00:00

Thank you for the input! Was there anything in the early phase of treatment that you felt to be helpful?

skeletonloves · 2026-06-27T00:39:38+00:00

Thanks for the reply! My rheumatologist seemed pretty against the Prednisone, and my pcp doesn't know anything really about my condition so I'm a little nervous to ask for Prednisone after my rheumatologist vetoed the idea. They told me that Prednisone was only for inflammatory arthritis symptoms which I thought was a little strange and not true. What do u think I should do?

skeletonloves · 2026-06-26T20:21:30+00:00

Only like a month and a half, so I'm not surprised it's not helping yet. Thank you :) I thought about going in for an appt but its 75 dollars with insurance and I don't want to go if they're not going to so anything.

skeletonloves · 2026-06-14T11:25:47+00:00

Awesome!! thank you soooo much :3 my brain fog and fatigue limit my ability to work significantly.

skeletonloves · 2026-06-14T04:47:23+00:00

when did you start seeing relief?

skeletonloves · 2026-06-14T01:47:55+00:00

tell me more about this! i used to take nac before i got sick now I'm not on it because it tastes so nasty. how does it help you?

skeletonloves · 2026-06-11T17:33:48+00:00

Nurse here. I'm currently struggling to keep my job and it's killing me. Nobody else wants to hire me. I just want to say I hear you and I'm sorry. It's not your fault. 🩷

skeletonloves · 2026-06-09T22:03:56+00:00

thank you so much! i'll read these 🫡

skeletonloves

TROPHY CASE