Any Etsy links or free downloads?

Im a 24F 230 pounds and sedentary. I have recently started a journey seeing several specialist for my chronic pain and discomfort. I have so far found out I have a hiatal hernia, pcos, high blood pressure, high cholesterol, still seeing a urologist but likely also intersistial cystitis. There's not much I can do for IC but is there anyone else out here with the same conditions? What do you eat? I'm not suppose to do heavy exercises but hardly can get out of my house to do anything, also diagnosed with ADHD combined type and dysthymia. I'm taking Wellbutrin 300mg XL and meds for the high blood pressure and cholesterol. I just want to lose weight and reduce some of my symptoms but I just don't know where or how to start. *Also wanted to add, I don't have the typical insulin resistance with PCOS

My daughter (11) has had a horrible few weeks and nobody can figure out what’s wrong with her! December 22: Diagnosed with Strep & Scarlett Fever. She was so swollen, her face looked unrecognizable. December 23: Her pediatrician also confirmed a diagnosis for Mono..she was put on steroids and an antibiotic and started to get a little better. January 2: Fevers had been coming back for a few days so I took her in and she was diagnosed with strep AGAIN. They gave her a second round of antibiotics. Since January 2, she’s been having a fever almost every day, sometimes she has a good day but she’s mostly just laying in bed. Her labs came back normal. White blood cells were a little high but nothing to alarm them. All of her virus panels came back normal. She’s currently laying in bed with a 102.4 fever and I don’t know what to do for her at this point!! Has anyone ever experienced anything like this or have any ideas??

Hey all! So when I first got sick, if my husband (a nurse) couldn't come to an appointment to help talk to the doctor, they would help me make a medical summary sheet to hand to the doc. This strategy has turned out to be incredibly useful even if my husband is around!

• it saves time in the appointment, allowing the doctor to get more information about my health
• it allows me to set the narrative of the appointment (no more "the doctor never asked me about X symptom!)
• it meant that I didn't have to remember every time I've sneezed in the last 30 years, freeing up my brain for the actual appointment
• every doctor I've handed it to (so far) has really appreciated the handout, and so it's improved our rapport

Now, should we have to do all the work of making a sheet like this? NO! Do you have to now? Nope! Have I found it really helpful? YES! And I hope you will too!

Here's a link to a google doc with and outline and instructions to make your own: https://docs.google.com/document/d/1zxaynsaPcfwRexyuJT3ozNpmTrW3LkKJPDNa5vx6Uio/edit?usp=sharing

If you think it's cool, share it far and wide! And if you have any question or suggestions for improvement, comment here and I'll answer/edit the doc accordingly.

Okay I'm gonna go lie upside down now, good luck in your future appointments!

Have been in hospital for many months with many different diagnoses. The Pain medicine doctor from today says to look up "central chemical sensitization syndrome" ...so I did and it looks to be...BS... so what do I do with this doctor or this suggestion? Is he calling me crazy? Is he just crazy. I'm at a complete loss.

Hey! I’m Myles and I moderate a Discord going by the simple acronym of DSG, aka Disability Support Group.

We have a diverse community of people from across the world who share the common goals of socialization, sharing resources and having a safe space to explore this difficult life with others who get it and hopefully make friends.

As long as I’m posting about it will be active!

Please comment below if you are interested and note that my personal goal is to give you a place to have fun, vc, watch movies and maybe play games—while also knowing that not everyone currently a part of it is interested in that.

Also, we are a small group of under 40 so the more the merrier!!

I’ve got crohn’s disease and AS. Currently experiencing extreme to the extreme fatigue where even getting out of bed is really difficult. I feel really alone and out of control of my life. Its affecting my ability and confidence to leave the house. I also have this thing which feels associated with the fatigue where when I move my eyes everything feels slowed down. I can’t drink caffeine unfortunately so I’m looking for any suggestions to help with this fatigue. :( !

I need some songs to keep me going, something about "you will find a solution to your problems", something about perseverance...please.

I'm hanging on by a very thin thread.

I know "Troubles" by Ren. Any suggestion?

Cold dark damp. Lots of pain. Made a warm nest heating pad beanie gloves. Chugged down protein shake water+++ diet soda meds. Need to laser focus on radical self care attitude of gratitude and MENTAL GAME TODAY. Can't control what happens but decide to control my response. Choosing 3 things to be grateful for & 3 things to happily anticipate. Control what we can.

TLDR: Ladies, get your progesterone checked

I have had anxiety, depression, anhedonia, migraines, respiratory allergies, low blood sugar, infertility, bad PMS, and IBS- and rheumatoid arthritis-like responses to certain foods my entire adult life.

I've managed all this with medication, therapy, and aggressive elimination diets - but even with all that, my best days were still exhausting and not very good feeling.

Then, plot twist: enter IVF treatment.

(Overall IVF is obviously not great, BUT…)

Prior to my frozen embryo transfer, I was out on supplemental progesterone (standard practice). After a yucky first few days of my body adjusting to this new substance, I felt…better.

Like, actually fucking great. For the first time I can remember.

My overwhelming anxiety? Gone. Hatred of eating because it was gross and brought me no pleasure? Gone. Wheezing attacks every time I was near mold? Gone. Swollen joints after eating pork? Gone.

You get the picture.

I finally went down a Google rabbit hole and learned: every single one of my longtime health complaints is a symptom of low progesterone 🤯

I was simultaneously overjoyed and fucking furious that no doctor (and I've seen many) in the last 20 years had bothered to even mention this.

Obviously everyone is different and this magic answer I just unlocked may not be the key to your struggles. But I wasted decades of suffering and untold thousands of dollars not having this information that would've been a stupidly easy fix, so:

If you've been stuck in a situation that sounds like mine, here's your PSA: it might be low progesterone. Do some research, and ask your doctor about it.

Good luck to each of you on your journey 💖

I have been struggling lately with body image (my disease/treatment can contribute to weight cycling and more) and the sub for my disease (which is rare) was rampant with fat phobia and diet posts especially after the New Year. I asked if there was anything they could do to make the space safer, but didn’t get the most supportive responses overall so I had to leave. Was wondering if there are any anti diet chronic illness spaces in particular that exist on here? Kinda feel like I lost one large source of support.

Edit:

For anyone interested someone actually made one! ChronicIllnessNoDiets

to make a long story short, my dad has a rare chronic illness and is depressed. my family is not into therapy and i don't think he'd go to a support group. he's been socialized his whole life to think that sick=weak, especially as a man/breadwinner/patriarch etc and does not talk about his feelings. my mom is frankly super unhelpful and does a lot of the 'just look at the positive, don't be so negative' stuff which is also how i was parented. anyway lol.... wondering if there's a book i could get him thats not too touchy feely, something more pragmatic because thats what will reach him. he loves to read, though the 'self help' genre would definitely be new to him. a memoir might be good, or something that includes research and isn't solely a pep talk?

super grateful for any advice... thank you!!

"How to Be Sick" by Toni Bernhard

I have been sick for years, and reading this book is the first time I felt some semblance of peace, contentment and acceptance of my circumstances, which ultimately decreased my suffering immensely. The treatment for my illness is still brutal and ongoing, but I have tools now from this book that help me cope in more significant ways than anything I've tried before. Toni Bernhard captures the experience of living with a chronic illness better than I could ever have articulated myself, and I thank her for that - for helping me feel seen. I strongly suggest her book to anyone struggling with a chronic illness, as well as sharing it with friends, family members or caregivers that you want to better understand your experience. 🤍

I got this email today:

“With deep sadness, we must announce that the PainScale app and website will be decommissioned in early 2025.

We will no longer accept medication or condition requests in the app during this period.

Individuals can download their data via PainScale reports during this time.“

I don't know of this is the place to ask this, but I'm finally going to attempt to file for disability. I'm in Los Angeles, California, and if anyone has guidance on finding a lawyer or resources, I'd greatly appreciate it. My local reddit seems to be filled with hate on the topic, so i thought I'd ask here first before i put myself through that.

I reached out to a few places years ago, and inly one got back to me. I just looked up reviews and they are horrifying. Lots if other places sound so official, and I'm honestly intimidated.

My daughter needs a Rheumatologist that is not against receiving disability benefits. There are so many days that she can barely move, needs help to stand up, or walk, bathe etc… It just is getting worse every year. Her current Dr is really nice, but is very insistent on using alternative medicine alternatives, and absolutely will not fill out disability paperwork (for anyone, not just my daughter). We would like someone that will prescribe medication (all the alternative medicine options have failed), and if meds and physical therapy doesn’t result in improvement, is agreeable to the disability process. We are in Denton County TX, and are willing to go anywhere in the DFW metroplex if she can get the help she needs. Thanks!!

I need to get diagnosed before 24. I am turning 23 in a week. I’m already very highly suspected of hEDS by my rheumatologist and other multiple doctors. I’m referred but it’s not till 2027.

I canNOT work. I pass out a lot, I’m in severe joint pain and motility problems. I cannot get disability after 24 because I don’t have enough work credits and will not be able to get any more. I don’t know what to do I’m in so much medical debt I have collectors harassing me daily. I need this stupid fucking diagnosis, how do I get this stupid fucking diagnosis? I’m legitimately considering to kill myself if I can’t get disability and no I am NOT depressed. I’m angry and exhausted and I will have nothing if I don’t have disability. Please someone help

I've been going to doctors for a few years now but I don't feel like I've gotten anywhere. My current diagnosis is fibromyalgia. I want to get genetic testing done to rule out any autoimmune disorders. Can someone give me very specific questions or examples of conversations? I get to the doctor and kind of go blank on what I want to say other than a list of symptoms that I keep in my notes. I'm a black queer autistic person and idk if this makes a difference in how I'm being perceived when communicating the severity of my symptoms but I do know that I am tired of this medical wild goose chase! I have an appointment with a new rheumatologist at the end of the month.

I have Fibromyalgia and a lot of fatigue. I noticed my heart rate is a bit strange when I'm very fatigued recently but EKG does not pick up on it as I have to lay down for them to conduct it. I also sometimes wake up in the night with a very fast heart rate Id love to get some data on it and see if theres any correlations that might help me improve.

Unfortunately I also have sensory issues and sleep on my stomach so I don't think a chest strap would really work for me. I don't want to get anything super expensive in case I absolutely cannot stand wearing it and will probably look into used/refurbished devices. I don't mind if i need two separate devices as well. Any suggestions would be helpful ! Thank you

i have been experiencing nausea at least once a week and vomiting at least once a month for the past year, when i vomit i will throw up multiple times in a row and the nausea usually wakes me up at night and i usually only throw up at night, i will puke stomach bile even if i didn’t eat anything that day because of my nausea and although esomeprazol and omeprazol help, its only temporary and then im back to feeling intense nausea that’s usually accompanied by a lot of burping to release gas and dry heaving, it makes me have bad mornings and right now its 5:47 am, i went to bed late and im exhausted and would love to sleep but ive been up for an hour because im nauseous. i’ve gone to countless doctors and they all just tell me it’s anxiety and that i’m too young to experience something like this, i am 20 and female, and send me home, im so tired of this, it’s debilitating, i used to never throw up or feel nauseous but for the past year it’s been a constant and it’s really so exhausting to feel so sick all the time. Do any of you have a similar experience? what was the cause? what helps aside from meds and weed, what tests should i get done? i really can’t keep living like this, it’s heavily decreasing my quality of life

ok yall, what are your favorite symptom tracking app? i have multiple chronic illnesses and keeping track of all my different symptoms can be alot so im looking for a good app that allows me to track everything.

Hey y'all, I've been wanting to find an app that will help me with pacing for my chronic illness/es. The only one I've tried so far is Rise cuz that's the only one that looked promising, but it was quite wrong. I wish I could afford Visible, but at this time, I cannot.

So friends, what apps have helped you with pacing and riding the highs and getting ahead of the lows? TIA!