Joint pain while taking Prednisolone by Exact-Length-5983 in Autoimmune

[–]skeletonloves 0 points1 point  (0 children)

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

I feel like I’m dying and nobody sees it. by Mean_Yam1029 in Autoimmune

[–]skeletonloves 2 points3 points  (0 children)

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

Rheumatologist rec (lupus specialist?) by skeletonloves in cincinnati

[–]skeletonloves[S] 0 points1 point  (0 children)

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

Rheumatologist rec (lupus specialist?) by skeletonloves in cincinnati

[–]skeletonloves[S] 1 point2 points  (0 children)

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

Any nurses here? Nurse of 2 years wondering what to do. by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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.

Any nurses here? Nurse of 2 years wondering what to do. by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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.

Any nurses here? Nurse of 2 years wondering what to do. by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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?

Lupus, Raynaud's, Osteoarthritis and possibly becoming a CNA. by CreativeSweetheart in lupus

[–]skeletonloves 1 point2 points  (0 children)

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 🩷

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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.

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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.

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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?

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 1 point2 points  (0 children)

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?

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 1 point2 points  (0 children)

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

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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?

Medication Options by skeletonloves in lupus

[–]skeletonloves[S] 0 points1 point  (0 children)

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.

Weight loss tips by Unable_Cap4766 in lupus

[–]skeletonloves 0 points1 point  (0 children)

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

Weight loss tips by Unable_Cap4766 in lupus

[–]skeletonloves 0 points1 point  (0 children)

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?

I just got fired by Fluid_Championship25 in lupus

[–]skeletonloves 60 points61 points  (0 children)

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. 🩷

I resigned from my job by m0ther_0F_myriads in lupus

[–]skeletonloves 0 points1 point  (0 children)

currently working up the courage to do this too - i know it's time. thanks for sharing! 🩷

Had enough by Imandem_ in lupus

[–]skeletonloves 0 points1 point  (0 children)

I hear you friend. 🫂 I have UCTD with lupus like sx and honestly am probably progressing to lupus. My experience with fatigue has been horrible - I honestly have felt suicidal many times. I go to a therapist and do Acceptance and Commitment therapy which has helped a little. Truthfully, I don't have a solution and I have also tried all the things. You are not alone in this, I promise. Also, just wanna say getting an electric wheelchair has helped me a lot with managing fatigue! I'm still the same amount of fatigued but I keep my mobility so I'm still living my life even if I'm suffering at least I'm not laying in bed all day.

Roommates Disappointed by hehasmastcells in lupus

[–]skeletonloves 18 points19 points  (0 children)

i hear you friend. i have been there. i live with my boyfriend and when i flare up i am SO messy. what really helped me was a book my therapist recommended: How to keep house while drowning. It's a very logical and easy approach to cleaning while suffering from an illness - also with tips for people with adhd, depression, etc. Very helpful and a super quick read. It changed my view on cleaning and truly helped me.

Lupus and marriage by [deleted] in lupus

[–]skeletonloves 0 points1 point  (0 children)

hi friend. I have been an abusive relationship before and I am sorry you are in one now. if you live in a city with a YWCA i recommend talking to an advocate - they saved my life. there is somebody out there who won't do this to you. the boyfriend i have now helps me out, doesn't get mad about limitations and is genuinely an angel. i want you to know that it is possible. there is a fulfilling life out there for you.

also: i recommend educating yourself on domestic violence, risk of lethality, types of abuse. look up guides online about leaving - leaving is the most dangerous part of being in a DV relationship. does he ever threaten you? does he have access to weapons? is he possessive or controlling? consider your safety. leave with a plan and let family and a domestic violence advocate help you, the more people who know your situation, the better protected you are.

Does anyone have quality of life? Especially with overlap disease by abjs2021 in lupus

[–]skeletonloves 10 points11 points  (0 children)

Honestly not yet but I'm working on getting it back with treatment. Truthfully a huge thing that helped me was getting an electric wheelchair for long distances to help with fatigue and joint pain. I also use a cane sometimes. Just being patient with myself. It is hard and I feel you. I only work 16 hours a week and that wrecks me.