r/ChronicIllness

i need a diagnosis for accommodations and i just want to know what's going on with my bodyyyy ahhhhhhh

basically the title. I’ve been in a really bad mental health spot and trying to reconnect with nature rather than be online all the time, but when I get cold I just get severely uncomfortable/in pain due to my issues; like 40-50 degrees with wind can be uncomfortable for me, but I really feel best when im sitting in the sun. anyone else deal w this? Or have good alternatives?

i’ve been sick for so long now and doctors are always concerned and then read that i’m mentally ill and suddenly all my symptoms aren’t real or all in my fucking head why do they try tell me how i feel only i know how i feel i hate doctors so much ive never once had a good experience with one

And for me it’s just getting worse with age.

I’m 53 - I have a long history with digestive issues (stomach through to rectal area) always told its ’IBS’ as all test come back clear but boy of boy it’s every day,give me a break!

I also have endometriosis, adenomyosis, a long long history of anxiety, ocd, panic disorder and depression and was diagnosed with inattentive adhd last year, joint hypermobility which is probably EDS but my GP won’t take me seriously (in the U.K. so no private health). I have also been enjoying the glories of perimenopause the last 6 years which has literally been the straw breaking the camels back so to speak.

Throw in 5 years of school refusal and meltdowns from my son (who is asd but thankfully better now he’s 21 and out of school) and the last 8 years helping to care for my mother who is now in advanced Alzheimer’s, I can safely say that I feel absolutely F*****

Every day is ground hog day full of unpredictable digestive woes, anxiety, depression, weird bodily symptoms which start off more anxiety and panic.

I only feel better in the evening and at night when everything is dark and peaceful, day time hours are my nemesis for some reason.

Does anyone else feel like this? Like they just go onto autopilot every day just pushing through until they can crash out and rest? I feel so sad that I dread each day because of how I feel physically and mentally/emotionally.

No amount of eating well, keeping hydrated, exercising, meditation (or medication!) etc brings me any relief from this.

I don’t expect to feel fantastic every day especially as I get older but it all feels like such hard work and I’m done with pretending I’m ok.

(Sorry for the rant, I’m just feeling so sorry for myself today lol).

Hi,

I’m not really sure how to start this, but I guess I just needed to say it somewhere people might understand.

I’ve been living with type 1 diabetes for about 35 years now, so I’m used to dealing with health issues and the ups and downs that come with it. It hasn’t always been easy, but it was something I had learned to manage over time.

Recently though, I was diagnosed with cancer in the lymphatic system, and it just feels like everything hit at once.

I’m currently going through treatment and I’m not able to work right now. Some days I feel okay and try to stay positive, other days I’m just completely drained, physically and mentally.

What’s been hardest isn’t just the physical side, but how overwhelming it all feels together. Managing a lifelong condition is one thing, but adding something like this on top of it is… a lot.

I do have a few supportive people around me, and I’m really grateful for that. Still, there are moments where it just feels heavy and hard to process.

I guess I’m just wondering if anyone here has gone through something similar — dealing with multiple serious health issues at once — and how you cope with it mentally.

Thanks for reading.

I have been diagnosed with endometriosis, fibromyalgia, RA, hEDS and MCAS, and I’m in constant pain. I have recently started pushing myself to go out with friends and notice how they’re all able to walk easily, sit for long periods without pain, and talk about sex being enjoyable, while it’s excruciating for me. I can’t stop crying about how jealous I am that other people get to enjoy life without constant pain and I’m so angry that I have to deal with this everyday. Has anyone else felt this way?? What can I do to change this mindset??

My partner has CVS. He’s currently in an episode 4 days so far and today’s it’s just gotten out of hand. Unfortunately he’s one that can force himself into an episode for attention by chugging liquids to make himself throw up.. I suffer for migraines, PCOS and endometriosis. I’ve been fighting a migraine the past week and a half which he knows. Today has been especially bad for it due to weather change and I have a cyst on my right ovary which is very painful. Despite all this I still make sure he takes his meds for his stomach and daily pills. Take care of him rub his back all that jazz.. what do I get in return.. no help at all. Him whining and throwing up in front of me on purpose. 7 animals to take care of of by myself. A hot water tank drained due to him just sitting in the water letting it run. Every single towel, cloths and hand towel use and needs to be washed. I tried to put my feet in hot water to help with the migraine and he takes over that.

I can’t help but feel extremely defeated and frustrated. I can’t even sleep in my bed while he’s in an episode cause he just wakes me up to tell me his stomach hurts. He will follow me around just gagging and stuff which doesn’t help with my nausea.

I’m not allowed to ask for any help from his family because he doesnt want them to know he’s sick (my family lives a plane ride away) I don’t have friends to talk to here.

When he’s happy and healthy he’s the most loving man I could ever have and can be supportive but when has an episode it’s like I don’t even exist to him.

Am I not understanding it? I can take care of myself but when he’s purposely doing stuff just so I have to do more it gets draining. Idk I’m tired of life lol

To add we’ve been together 5 years and are 24 years old

This is so annoying. Every time I eat something that's just a LITTLE too sweet or has a little bit too much fiber, I go through excruciating pain. it gets so painful and exhausting that I just pass out. I pass out, wake up for 15 seconds, hallucinate, then pass out again. I don't even know if I'm passing out or falling asleep at this point. worst part is that im in pain for hours!! the general discomfort afterwards lasts days!! i'm so over this!!

37 yo f

Dull left side pain for over a year. Worse in the morning. I thought for sure it was my bladder.

Cystoscopy- clear

Colonoscopy- IBS. Polyp benign.

CT in August showed:

-a 4 mm right upper pole renal calcification which may reflect calculus versus stone within a calyceal diverticulum

-a 1.6 cm left lower pole renal cyst

-There is a 5 mm right hepatic lobe cyst

- pelvic varices

I have herniated discs

-At the L2/L3 level, right foraminal disc herniation is identified resulting in right neural foraminal

encroachment without central canal encroachment.

-At the L3/L4 level, disc bulge is identified abutting the ventral aspect of the thecal sac resulting in bilateral

neural foraminal encroachment without central canal encroachment.

-At the L4/L5 level, right foraminal disc herniation is identified with disc bulge and annular tear resulting in

bilateral neural foraminal encroachment with moderate right neural foraminal narrowing encroaching upon

the right exiting L4 nerve roots without central canal encroachment.

-At the L5/S1 level, disc bulge is noted without significant central canal or neural foraminal encroachment.

-Hyperintensity is noted involving the right lobe of the liver measuring 0.6 cm likely representing a

hemangioma.

Pelvic & transvaginal ultrasound normal

(I'm going to repeat these as I have a history of cysts and possible endometriosis.)

The pain is pretty chronic left side in back and if I press the front I can feel discomfort as well. I've gone to PT for my herniated discs and I know I have a pinched nerve in my right leg.

I have an appt with an endometriosis doctor to check if that's related because it seems to be more active during my period but I'm not 100% sure. Of course my brain keeps going to worse case scenarios.

I lost my adoptive family (no loss to me anyway, they always treated me differently, abused me, etc.) after I became severely ill, both physically and mentally. They’ve said things like my therapist isn’t a real therapist, my doctor is a bad doctor because I’m not cured, gave me so much unsolicited (and cruel) advice, told me that I’m lazy and laziness isn’t a disability, that I just “diagnose myself with things I see online” (I don’t) I’m seen as a lazy crazy person who enjoys faking being ill in their eyes. A lot of their beliefs are upheld due to their wealth and no chronic mental or physical health conditions running rampant in the family, aside from addiction. When someone in the family does show signs of being physically or mentally ill, they’re immediately outcast. With me, it’s gone so much further than that. I’ve even lost the majority of my belongings and became homeless because of them. They want me gone.

I’m on state disability while awaiting federal, and even though the state considers me disabled, sometimes I still wonder if I’m as sick as I think I am or if it’s all in my head. I really can’t go anywhere aside from appointments and tests. I cannot see friends, I’m constantly in pain and exhausted. Having no family support makes it even worse.

I just wish I had family who cared. I’m so lonely and struggling a lot with my mental health. Holidays make things worse. I don’t even want anything to do with this family anyway. They’ve treated me differently and badly since childhood. It isn’t acceptance I want from them. I don’t want anything from them. I just wish I had a support system to get through things and I don’t. It hurts so badly.

They have even seen proof of my health issues and still choose to deny it. TW: this family has also abused me my entire life and more than one family

member has SA’d me. I’m 27 now and still attempting to break free fully as my A mother still speaks to them and allows them to treat me however they want. I cannot cut her off for the foreseeable future, but I am fully no contact with the rest of both side of my A family. They also all took part in causing my CPTSD as well.

I am 22 and I got diagnosed with mcas and pots about a year ago. I had had them for some time but the symptoms didn’t really get bad until a little before I got diagnosed. Anyways, I spend one day of the week doing something enjoyable like seeing friends or going to see family and then I’m exhausted the rest of the week. Not to mention I can eat a total of like 6 foods at the moment and I’m super reactive to medication. I’ve always wanted to be a mom. I love kids and I always loved taking care of them like babysitting or tutoring. I don’t know if I’ll ever be healthy enough to be able to have my own kids. Even with fostering I don’t think I can take care of a kid I can barely take care of myself. I also have a boyfriend that I have been dating for years and I know he wants his biological children. I love him so much but I can’t imagine taking that away from him the way it’s been taken away from me. Anytime I seed kids now I start tearing up or will start really crying if I am watching them for too long. My friend is fostering some kids and I love them to death but I hurts my heart anytime I hang out with them. I don’t know how to deal with this. I feel like once I grow up I’ll have no job or a shitty one even though I got a degree. Also I feel like finding someone who would marry someone who is sick and probably can’t have their own children is hard to do. I feel like everything’s gone and I don’t know how to find a fulfilling life. I can’t have a big career, marriage and kids are iffy, my friendships are slowly fading, i can feel the pity radiating from my family, I can’t even volunteer to feel like I’m doing literally anything at all with my life except surviving. This sucks it’s not fair I know I would’ve been an amazing mother someday, it’s all I’ve ever wanted. Up until I got sick I was so hardworking and determined and I felt like I was really on a path to get to the life I’ve always wanted… now it was all for nothing. Well I guess not nothing my savings helped a lot for the medical bills but still.

i started my first job at 23 last week as a blackjack shuffler, i didn't have migraines for a few weeks before starting it and now i again have them daily + i got sick again and its making me feel so shitty. i hate that i need to be constantly standing. I'm doing training rn and im the slowest in my group, I get anxious and then I just fuck up everything and I feel ill. i feel so stupid and like such a failure for not being able to do something so stupid just because I'm in pain constantly. I kinda hope I don't pass training idk

last night when i came home i just started sobbing i feel so weak and disappointed in myself + i feel so out of place and alone

this job makes me feel so stupid for not being able to do it well like everyone else ugh

idk man

be careful if you take ondansetron (zofran) a lot it could potentially cause serotonin syndrome in high use.

love,

a chronically ill person

One of my very best friends has recently been diagnosed with a chronic illness that now affects their ability to feel which is making it hard for them to read as they can’t turn the pages of their book. Does anyone have a recommendation for something that could help turn the pages for them?

hi! I dont know what to tag this but im trying to get better at purposeful resting cause overdoing it with chronic illness is awful but we recently got a ps5 and im getting into gaming for when I cant move around very well as a fun distraction!

I really enjoy storyline type games with tasks and collecting and world playing etc. bonus points if you can add a lil fun companion and get to have fun character building too and was wondering if any seasoned gamers had any recommendations?

id love to get a bit more options to play and be excited about!

Does anyone else get this weird feeling in their nerves that feel like you’re being tickled without anyone touching you? Im not really sure how to describe it but its like I can feel the different tiny stands of my nerves and theyre all vibrating. Its not exactly painful but its unbearable and uncomfortable and I feel like im on fire.

Ok so I (20F) want to first say ik no one on here can diagnose me, I’m purely asking for opinions from other people’s experiences.

I’d also like to clarify I’ve been diagnosed with some things that may effect this (SAD, GAD, PSTD, RMDD, OSED, ADHD but idk about this one, Thoracogenic scoliosis of thoracic region, Recurrent otitis media of both ears, and hypertension.). I wouldn’t have listed all of them but I honestly can’t tell if they affect my pain, or they’re causing my pain, or somewhat symptoms of my pain. Also just to preface, I’ve been in pain as long as I can remember, but I feel it just gets worse over time.

First of all, ik this is a lot to TW: DEATH. My mother died at 56 (a few years ago for me) from her chronic illnesses. She had many illnesses including Ulcers, Migraines, Osteoarthritis, Rheumatoid arthritis, Nephrolithiasis, Heart disease, COPD, Osteoporosis, and I’m pretty sure other things that I wasn’t even aware of. It was a very slow elongated death, and they never knew what to do to help fully.

Back to my own experiences. I feel like I’m 50 yrs old in a 20yr old body. I’m in constant pain some where. Heat and light makes me feel dizzy and nauseous. My lower and upper back always hurt somewhere, but it’s mostly my neck. Especially the left side. Im constantly constipated unless I take laxatives. Constant headaches (sometimes dull, sometimes sharp, and sometimes other versions.) even with headache medicine. I also have near constant jaw pain. When I go out to dance with friends I’ve fallen to the floor and almost passed out on multiple occasions. Most foods hurt my stomach whether it nausea or bloating or both. I feel dizzy and tired most of the time, but moving around or certain things (like it being hot or bright) makes it worse. A lot of my joints hurt, especially my fingers. I also feel like some areas of my body bend to much (most my waist back area, and my hands, and my shoulder sockets.). I can basically bend my hands backwards. Also sometimes If I relax my shoulders too much and I’m holding something a bit I can feel my shoulders kinda dislodge or something? It’s not fully, and ik they dont fully pop out of socket, but they become loose feeling,. I can even do it on command with my right one (it becomes loose more easily too). You can see it when I do that. That’s been happening since I was veryyyyy young. Honestly there’s probably more I just can’t think of right now.

I haven’t gone to the doctor in probably a year or more, but I used to go a LOT from like 14ish - 17ish(?). Around 15(?) I had to go to the ICU for EXTREMELY high blood pressure. Idk exactly what they tested for but it was apparently “everything” and they got no answers. Around the same age I also had to get ear tubes put in for chronic ear infections. It helped but both my ears still feel off ig? But idk for sure. Apparently I’ve had ear issues since I was a literal baby, so maybe I just don’t know what normal ears feel like? Also around 17(?) i got an endoscopy but all they said I had was lactose intolerance.

Anyway, free to ask more questions if yall want to. I would just like to know if any of you relate and have any suggestions on what it could be, or any advice maybe? Ik i need to go back to the doctor (which I’m RLLY trying to convince myself of) but it feels like they really just don’t care or can’t figure it out. It’s extremely exhausting, on top of everything I’m trying to deal with.

Hello all. I'm 19F. I just got diagnosed with Chronic Heart Failure with Preserved Ejection Fraction, which basically means that my heart is too stiff to relax to let enough blood flow into my heart. Anyway, I have an amazing support system with my family, but I've been trying to think of ways to tell my friends. They are very easy going and funny people, so I don't want to just drop the revelation in the group chat. I just don't know how to tell them without completely changing the dynamic of our friend group. I don't want them to worry about me. Does anyone have any advice on what to say? Should I even tell them? I think that maybe the reason I don't want to tell them is because I haven't fully accepted that it's real.

For context, I’ve been recently diagnosed with non-radiographic axial spondyloarthrtis and possibly UCTD. My garden and yard really went downhill last fall and it honestly broke my heart because I’ve been really proud of the way we transformed our 2/3 acre property.

I started Rinvoq two weeks ago, and I’m also on Xolair, Wegovy, Singulair and sulfasalazine. This past week I’ve almost started feeling normal outside of fatigue.

This weekend I planted strawberries in new 2’ raised beds with my kids. My husband got them set up and covered with a chicken coop to keep the deer out.

Today I got out in the front garden and cleaned up some sedum and covered them with net wastebaskets so the rabbits can’t eat them. Also got my rabbitbrush pruned up. I only spent about 30 minutes. My husband made me use my kneeler/garden seat and I was honestly annoyed, but I think it helped my back a lot. Annoyingly. 🙃

I worked in the shade, before it got too hot, and I came inside, drank water, and I don’t feel half dead!

I really hope my bad hip cooperates and I can get out again tomorrow. Baby bites! 🌱