u/anxi0splantparent

Not sure what tag to use for this but basically I need all the help I can get with naps, they are so so helpful for my illness and I get SO fatigued but i struggle so hard? It sounds so silly with something that should obviously be so easy.

naps are always so elusive for me 🥲 i lay there for an hour or more with my eyes closed and never fall asleep and have tried calming music, background shows, silence, all of it. Idk how to embrace the napping but I could use all the advice I can get. Sometimes i get lucky and fall asleep for about an hour but its not often and light sleep🥲

So any tips for a chronic bad napper who desperately needs to get better at it?

Im feeling really frustrated because my inflammation marker levels have started to steadily rise over the last 3 months (jumped almost 100pts between the 2 tests) and ive been telling my GI that im struggling really bad with intense painful bloating, feeling like air is trapped, constant gastritis and GERD symptoms, nausea and lack of appetite, im basically living off snack plates and small portions right now.

i feel almost like my stomach is digesting slowly? Like i can barely go the bathroom for 2 or 3 days and am super constipated and then I can go 6 plus times the next day and yet STILL feel constipated or unable to go all the way? Its like a cycle and I genuinely am so confused

I have a follow up with my doctor later this month- but so far they saw my rising inflammation marker on the calproctectin test and just ordered a repeat one for another 3 months out- for the third time. Im worried we wont have a plan in place and ill have to reach a level of "bad" before we do something about it or figure out whats happening if theres more going on!

The last appointment i had where I discussed these symptoms and struggles in felt really brushed off and told it was probably just my IBS and sometimes these things happen and i can still eat the things that newly started causing me pain (i told them it was too painful why would i make myself suffer for garlic or honey and onion etc) and the intense acid reflux / gerd symptoms were due to the prednisone ive been on for a long time and to take a higher dose of my PPI which I did and had to lower back to what it was again cause it caused more trapped air and pain?

I told them last appointment i just dont want to miss something bad happening that could have been caught earlier- if I truly just cant eat stuff and a bunch of food causes me pain and issues digestion wise because of IBS then thats fine! I just wanna be sure and i really dont know how to advocate for myself in the best way and could really use some tips🥲

Hi!! Im looking at getting a 2 in 1 rollator wheelchair for outings that require more walking than i can tolerate and was wanting some real life experiences for pros and cons! I've seen the rollz 2 in 1 and was curious to see peoples experience with it but also any other recommendations and theyre pros and cons would be SUPER appreciated!

I have NMOSD and have been on prednisone for about a year now, everytime i ended up getting iv prednisone 3x last year the last time being in September, everytime i try to taper off to even 10mg (lower hasnt been possible yet) my body reacts really negatively.

I have symptom flare ups, my baseline seems to drop, and intensity levels go up on pain and other things.

We are trying to go so slow and my doctor is hoping to get me a round of IVIG scheduled so that way it'll help bridge the gap and my body can hopefully process this taper a little easier. Insurance has been a issue with that and its been scheduled and unscheduled 2x and I wont even mention the amount of phone calls back and forth😮‍💨

But even going slow this is rough, im worried the pain levels will keep getting higher and stay higher, im worried that my nmo will relapse without the prednisone to help boost my dmt, im worried that these flared symptoms and decreased mobility and energy are going to be my new new normal and ill have to play readjustments all over again.

I just wanna cry about it but cant even seem to muster up that. Im so nauseous everyday, have absolutely no appetite but still somehow want specific things (thank u pred✨️), my body is hurting more and the numbness, tingling, static, etc. is getting worse. My mobility is crashing again, the brain fog is FOGGING and Im fatigued as HECK plus this heat wave is not helping anything.

I know that this will pass and I have to get off prednisone no matter what (its causing some bad steriod induced things due to the length of time ive been on it) and i knew itd be hard, so im riding this plane whether its crash landing or not but I guess I needed to vent it out a bit🥲

I have the biggest craving for nesquik strawberry milk but their powder isnt gluten free and I cant do milk drink products (dairy free and gluten free) - does anyone have a dupe product they've found and love?? 😭

Hi! I have a sister disease of NMOSD but thought the question would be good here too- Whats everyones experience with neurophysio?

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I have been doing PT regularly but I am still experiencing a disconnect with my right side leg weakness, balance, and cooperation (its bad balance and my right leg works but will stop working sometimes? It collapses or gives out on me a lot ironically in the knee and hip and ankle, and sometimes will just not move😅 -Like a broken cd skipping out parts of the song and giving out)

my neuro recommended it to see if it would help more especially since theres worsening to its stamina as i drop prednisone more and with too much usage of movement on it?

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Anyways- Id love to hear more of the difference between the 2 if you've gone to normal PT vs neuro PT, bonus points if what im describing with my right side is relatable and you have any advice or tips!

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Thank you so much and stay cool in this heat everyone!

Okay but does anyone else feel like blood draws keep getting HARDER? Ive had soooo many and they never phased me but after my flare ups and diagnos last year I feel like having to go monthly its getting more and more like sensitive?? Im nauseous afterwards and im like ?? I do this all tbe time? What the heck? 😂

Hi everyoneee!! Ive been on prednisone for almost a year now (in combo with cellcept) and have been experiencing hair texture change and thinning, I really wanna dye my hair but am worried i might cause more damage?

I was gonna use lunar tides over my natural color and no lightening and just hope it took but my hairs also really short so there's not really any hide away test strands I can do😅

Has anyone colored their hair while experiencing those side effects with pred? Or should I just wait until Im hopefully off officially and my hair gets a bit more time to be back to normal? (Hopefullyyy)

Hi! First time poster so please let me know if this isnt allowed but I wanna dye my hair again so bad, the problem is ive been experiencing hair thinning ans texture change from medications ive been on for the last year and im afraid of damaging it more than it can handle!

Id love to just color without lightening but am not sure if thats gentle enough or even what color I could achieve from my natural hair color being the starting point! Is there a more gentle hair color or am I damaging everything as a whole anyways? Is it even worth dying my hair without lightening it first??

For reference: I think Im between a 5 or 6 on the lightening chart (I'll add a pic in comments if I'm able to!)

Thank u!!

-signed someone just trying to get her whimsy back

I have a sister disease to MS - Neuromyletis optica spectrum disorder! Im coming up on a year of diagnosis in July but man does the acceptance part really come in waves! Some weeks are better than others🥲😅

I guess my mind says resting with pain is valid but fatigue is something I should push through- that im not doing well enough and basically have to defend myself against myself- HOW do you switch that mindset?

The fatigue is KICKING my as* and sooooo hard, my body also just flares up so many other symptoms like my leg collapsing and not working or my vision being worse and nausea, etc . the more tired/fatigued I am and im just - feeling SO guilty or like at fault? Feeling like im letting people down and my outward love language to others is acts of service and I feel like im not able to do it as much as I was able to and feeling like im resting TOO much when im not even resting actively as much as i feel like i could?

ugh the imposter syndrome is harsh and I just feel like i did something wrong everytime I have an ounce of energy that disappears when i do a task?

its almost like this is a second wind of imposter syndrome and im doing my best but whooo, i know others deal with this a lot but even though im talking about it in therapy i feel like ive received some really helpful advice from those who have gone through it themselves! 🥲

My mind says resting with pain is valid but fatigue is something I should push through- that im not doing well enough and basically have to defend myself against myself- HOW do you switch that mindset?

The fatigue is KICKING my as* and sooooo hard, my body also just flares up so many other symptoms like my leg collapsing and not working or my vision being worse and nausea, etc . the more tired/fatigued I am and im just - feeling SO guilty or like at fault? Feeling like im letting people down and my outward love language to others is acts of service and I feel like im not able to do it as much as I was able to and feeling like im resting TOO much when im not even resting actively as much as i feel like i could?

ugh the imposter syndrome is harsh and I just feel like i did something wrong everytime I have an ounce of energy that disappears when i do a task?

its almost like this is a second wind of imposter syndrome and im doing my best but whooo, i know others deal with this a lot but even though im talking about it in therapy i feel like ive received some really helpful advice from those who have gone through it themselves! 🥲