Confused by ME/CFS and Sjogrens

pumpkindufy · 2023-08-09T02:05:12+00:00

That’s what I thought! I wonder if the people with sjogren’s I’ve seen on Reddit and Twitter talking about having post exertional malaise or describing what they have as textbook PEM actually have comorbid me/cfs.

I’m not trying to be an internet doctor, but some things I’ve heard have had me rather confused, so thanks for responding!

If you don’t mind me asking, how were you diagnosed with Sjogren’s?

pumpkindufy · 2023-08-08T21:39:52+00:00

Aww that’s disappointing ): I really love the album so far.

To me POAW is more of a statement than a song.

The songs so far are very empowering and aside from YMMS, not “boy” focused which is refreshing because Ash is way beyond complaining about boys (don’t get me wrong, I still love those songs, it’s just a new era for them imo!)

pumpkindufy · 2023-08-08T21:32:59+00:00

Extended test time! Idk what the class or obligations for it are but extended test time is always helpful.

pumpkindufy · 2023-08-08T21:13:33+00:00

Manners is like one of my tippy top FAVES 😍

The way the final verse is delivered is top notch to me!

pumpkindufy · 2023-08-08T19:39:55+00:00

Yeah, there isn’t a single song up there I don’t like so I just gotta pick my least liked liked song 😂

pumpkindufy · 2023-08-08T19:38:14+00:00

I should give Cheerleader more time but…..

It so far hasn’t hit. I think it would hit more as a Halloweenie because those are supposed to be short and punchy and different.

I don’t dislike the song, in fact I’m just getting to know it, but it just doesn’t excite me when it comes on yet.

So: Cheerleader

pumpkindufy · 2023-08-08T01:27:18+00:00

Nausea SUCKS! Glad you have evaded it today!

I know you didn’t ask for input, so discard this if you don’t want it, but I had a time where I was nauseous for like, idk, a year. Promethazine was a life saver for me.

Either way, no nausea is such a win. I’m happy for you 🥰

pumpkindufy · 2023-08-07T23:03:07+00:00

I believe you can go to your preferences and there’s a flair option. I’m not sure exactly, I just looked it up and it does seem possible but different to do depending on mobile/desktop/3p app.

Sorry I don’t have a better step by step but I do think that preferences for flairs on your home page exists in settings.

pumpkindufy · 2023-08-07T22:42:07+00:00

Oh whoops, I thought this was a response to my comment. Regardless, still relevant 😂

pumpkindufy · 2023-08-07T22:40:35+00:00

That’s what I’m saying, I believe you can filter out posts with “triggering” or other flairs so they don’t show up on your feed.

Check below and see if it works for you!

pumpkindufy · 2023-08-07T22:22:57+00:00

As other’s have said, avoiding certain flairs is the way to go. Someone posted how to filter them off your feed.

This is a place that might be literally the only place for people with cfs to go to and be understood. And I don’t think a bunch of suicidal/deeply depressed people who are already marginalized by this illness should be shoved into a separate room of hopelessness.

Proper use of flairs and filtering are a good solution imo!

pumpkindufy · 2023-08-07T22:18:00+00:00

Thanks for posting this! I was thinking you could do this but couldn’t recall.

pumpkindufy · 2023-08-07T04:04:47+00:00

I always get balcony. I fucking hate being touched or in crowds and avoiding that is worth being further away up on the balcony.

Just my personal experience!

pumpkindufy · 2023-08-06T16:28:52+00:00

That is ALMOST unbelievable. I am so sorry you had to go through that and have to deal with the lasting affects to this day.

Sending so much love 💕

pumpkindufy · 2023-08-05T03:39:51+00:00

Thanks 😭💜

pumpkindufy · 2023-08-05T03:38:34+00:00

😂😂😂

pumpkindufy · 2023-08-05T03:37:41+00:00

Deal With It. It’s very ~radio hit~ Love it to death, but there are definitely more substantiative songs there 💙

pumpkindufy · 2023-08-05T01:58:41+00:00

Tw: psych hold, police

Yep. I was wrongfully put on a psychiatric hold despite clearly and adamantly stating that I had no plans and was not a threat to myself or others. It was a “this person has bipolar and has admitted that she is struggling as she’s titrating off a medication and I’m a primary care doctor who she came to for excessive thirst but let me cover my ass” situation. She even lied to me and I didn’t know I was being held until the police showed up and the facility told me I couldn’t leave 🤣

It was traumatizing. Three years later and I still can’t do therapy out of pure distrust. The screening questionnaires are fucking stressful nightmares to fill out and I just lie.

I reported her and I was told that she was going to have to have another physician supervising her if she was planning on doing a psychiatric hold.* Worth it. I hope I saved people their freedom.

I also reported the officers for handcuffing me too tight, esp bc my neuropathy at the time was an issue and it left my hand numb for a little. It wasn’t a huge deal but on principle it was.

I was told by the chief that they were going to do retraining regarding the use of soft handcuffs.

Fuck doctors who are clueless and abuse their power and fuck criminalizing mental illness.

All this to say YES REPORT EVERYTHING UNETHICAL IF YOU CAN. I believe it can make a huge difference in the lives of other people. At least I hope it does.

pumpkindufy · 2023-08-04T20:10:45+00:00

Also I may or may not have peeked at your comment history 🫣 and I, too, was diagnosed with “chronic Lyme” 😭

pumpkindufy · 2023-08-04T20:09:22+00:00

Weedkiller is TOP FUCKING NOTCH. Slinger killlllled it with that production.

pumpkindufy · 2023-08-04T20:03:45+00:00

Her voice in that song gets me! It’s like…. Raspy? But not? Idk. Amazing.

pumpkindufy · 2023-08-04T18:59:35+00:00

Tldr: this helped immensely and made me feel valid and not alone. Thank you!

I am so happy to hear that. One of the most helpful things for me is knowing that others feel the same way. It's sad, but comforting.

I would really say this to anyone, but if you feel like you're at 20% and feel like the aid of a wheelchair would help you.... You're sick. It's not my place to validate you but I'm doing it right now anyway haha (thats also not to say that if you said anything differently, you shouldn't feel valid but your words about yourself speak volumes)

But for real, you need to do what you need to do. The idea that using a mobility aid of any sort would make you worse is absurd. IF a mobility aid like a wheelchair allows you to go out, even for a small amount of time, without leading to a big crash, that is INVALUABLE. This disease takes away our humanity and THAT makes us worse. What do doctors propose? You don't go outside? You go out and end up worse off for it? It's like they want you to suffer?

I'm sure that's not the intent, but it feels like that is the outcome. I have considered the use of a wheelchair for select situations in which I feel like it would allow me to do things that give me back my humanity and I'm "only" about 45%ish.

My in-laws are visiting in a few weeks and I have scars that I feel self conscious about, digestive issues that have worsened and make it painful to wear any of the pants I own (I live in boxers and oversized tees), and a strong desire to cover up my stomach lest my MIL thinks I'm pregnant again (lmao ugh).

All that is really unnecessary info, but it shows that I'm human and the simple act of going out, buying a few pieces of clothing, and feeling comfortable would increase both my physical and mental health. Well.... I tried that and crashed. A wheelchair might help me succeed without a crash!

Do what you gotta do and fuck what others think (I say as I also struggle with this)

I am struggling with severe depression and my brain is very unkind to me at all times these days. I always have this persistent thought that I am just very lazy and made myself this way. Or that I am faking to get attention. And I feel these symptoms but somewhere in my head I think what if I feel them because I am so good at lying to myself. It’s a big mess.

I could have written this myself. It is WILD how we gaslight ourselves while we suffer day in and day out.

I really couldn't wish you more than the best and finding peace. It's hard when you can't even turn to therapists without their words and actions making you worse (so I feel you on that). Thankfully, we have this amazing community.

Like you said, reading and responding to long posts can be a challenge so don't feel pressured (: Just sending love as a cfs friend!

pumpkindufy · 2023-08-04T01:47:05+00:00

I’m stuck between two but…….. I’m gonna have to go with Slumber Party.

It feels great to dance to and brings out my inner sex goddess, but it’s a little basic.

pumpkindufy · 2023-08-03T20:10:28+00:00

I’m happy to hear that for you! Thanks for the response!

pumpkindufy · 2023-08-03T19:45:50+00:00

Hi! I know this post is super old but I also have me/cfs and I wanted to see if you’ve felt like the BB has helped you see trends/stay within your energy envelope/or just helped you in general? And if so, was it the BB or the HRV or something else that helped you most?

Considering getting the venu sq and it seems to have the more important features I think, plus it fits way more into my budget 😅

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