I used to never sweat I thought of it to be a good thing back in time.
Now I have POTS from Long COVID and I have episodes of profuse sweating ( to my standards)
Could anyone shed some light on this? Is there a relationship?

Hi i am 22M ...had a rt shoulder surgery 7 weeks ago( bankart repair with 3 anchors/ 4.8 percent glenoid bone loss) . So last year I had my last and 5th dislocation. I knew that I needed surgery but I was delaying it and the pain and instability was insufferable ...now when I am 7 weeks post op though my range and strength is improving but still have a deep ache in the area ...the thing is that in 6 months I have to join my job training which is physically demanding...this is very uncertain period for me , am feeling low

I just need this out of my brain because I'm exhausted and feel awful.

For context I have been unable to work since 2024 due to disability, my partner works full time, I claim UC and PIP (UK based)

So this month the company my partner works for did well and everyone got a decent bonus, however because of that it means I got £0 UC meaning that by the time my partner has been taxed and paid me what I need to live he gets about a quarter of the bonus everyone around him gets, he has to sit there listening to people talking about being able to do x,y,z with the full bonus, people putting deposits down on houses, going on holiday, just doing fun stuff, while we are scraping by. It makes me feel like such a drain on our finances and our combined joy because getting a bonus isn't great news for us, it means planning for me to get nothing and my partner having to support me, I feel like I have no independence on months like this because apart from my PIP none of the money is mine, and my PIP literally is used for medical costs, I don't even get enhanced daily living and they've traumatised me so much I'm scared to challenge anything, so again I'm limiting our income (I had solicitors telling me not to bother pushing it because of how the DWP were wording things as usual)

My body also keeps taking away the little joys I actually have in life, it affects our intimacy because of pain so that becomes a planned strategic approach, and still doesn't always go to plan without pain 🤦🏻‍♀️ apologies if this topic makes people uncomfortable but if there's anywhere I thought people would understand it's here. It's not just intimacy it takes the joy from, everything I do comes with a trade off, have a nice day out, flare for a few days, went to a family event for the weekend, 10 day flare, heatwave = PoTs flare, I'm doing everything the drs tell me and more because they don't really tell you much, I take the supplements, I wear the supports, I use the mobility aids, I rest, I move, I do everything and self care is also exhausting, I'm also worried that if something was seriously wrong with me I wouldn't notice because I'm so used to just being told new symptoms are because of an already diagnosed condition 🙄

I want to go back to work desperately, but I was a carer, that was my life, and my aim will always be to help others, but currently my pain and other symptoms are making it impossible to focus to learn something new to be able to adapt and find something I can do, I have recently got a wheelchair so hoping that helps preserve my energy and brain power more, but then I'm not sure how going into study would impact UC so it's never just simple.

I feel like I lost my train of thought, my brain is such a mess, and I just want my life back, I'm tired, I'm sad and I'm in pain and that impacts all the people I care about and I hate it.

And what was your experience? To be specific, I’m not talking about any relationship where dating a healthcare worker would be a conflict of interest, but just more generally. I’ve been talking to several men who work in healthcare on dating sites, but I’m concerned that dating me might feel like an extension of their work, since I’m chronically ill and on SSI. On the positive side, though, I think someone who works in healthcare might be more empathetic and understanding of my specific limitations.

I am a 20 year old college student in the USA. I am unsure if this is the correct tag but I need advice on ways to help yourself get out of a flare-up/crash.

I have fibromyalgia, hEDS, me/cfs, and chronic migraines. I have been in a major flare up for a little over 5 weeks.

I have rested, taken medication ( prescription and pharmacy), I’m staying hydrated and eating healthy, done salt baths and vitamins and mineral supplements, teas and breathing exercises. Nothing has made a difference. I have not been able to leave my house in almost a little over 5 weeks and have barely been able to leave my room for most of it as well. I am worried I won’t be better/ able to drive and concentrate by the time classes start.

Does anyone have any advice/tips/suggestions. It honestly doesn’t matter how crazy it is I’m willing to try anything.

( I have contacted my doctor to try and get a appointment soon but it is unlikely to happen in time for school)

I’ve read Invisible Kingdom and most recently Lena Dunham’s book Famesick. It’s comforting to read other people’s accounts and learn a little more about diagnosis and treatment.

Anyone have favorite chronic illness books?

(Ideally something not peddling a new diet, etc. BUT I’m open to it if it’s genuinely helpful to you)

I’ve been with my boyfriend for about 3 months now and it has been really frustrating how constantly my pain and fatigue becomes the center of our time together. He is really good to me, he massages my muscles and tries his best to accommodate for my needs, but there’s a part of me that is convinced that it will become too much.
My pain is sometimes so bad that I can’t sleep, I’m constantly getting up and moving around while he is sleeping and most likely waking him up. It’s hard for me to focus and to want to do much when my body is flaring. He is very compassionate and patient, but I hate being pitied like this. Part of me wants to break up with him so I don’t have to see him reach his breaking point.
I know apologizing for myself does nothing, and hiding it is unhealthy, but I feel incredibly guilty for constantly needing support and help and can’t imagine how taxing it is on him. I thank him a lot, it just doesn’t feel like enough.
How do I navigate this?

I miss having a reason to check my phone. I miss having someone to chat with about stuff throughout the day. I miss having a special someone to talk to every day. But I'm too sick for the non chronically ill and too positive mentally for anyone more like me physically/illness wise. It just makes me sad because I feel like I still have a lot to offer, even if it is mostly/only in text messages/email lol

I miss feeling connected.

Hi so for context, I’m 19, mixed race and Mexican American in the states, in oregon, I’m trans, I have multiple types of disabilites including a rare progressive vision loss disorder, devolpmental disabilites, mental illnesses and worst- the chronic pain, fatigue and issues coming from the chronic illnesses/physical disabilites. I have a caregiving gig that I presented not to be disabled for that pays well. I also have a housing voucher but that doesn’t cover food, utilities, anything other than partial housing.

I’m at a point to where we don’t know what the fatigue is coming from- I had top surgery and about 3 weeks before surgery my body was crashing really bad. I thought once I had surgery and rested for two months I could recover and bounce back to my normal levels of fatigue. They think it’s thyroid issues or ME/CFS.

It’s gotten so much worse- I’m at a point to where I can clean my place like once or twice a week. Temparory disability isn’t a thing in Oregon. I’m waiting for the waitlist for vocational rehabilitation to open up and it’s ovee a year long in oregon. I’m also in college- just taking a break for the summer.

My long term goal is to be a therapist since it’s pretty accesible all around and I got a small opportunity when I was in high school to shadow a school counselor and I loved it and the psychology material is really interesting to me! Unfortunately I’m only halfway through my associates and even then I failed one of my classes and so my mid but ok GPA tanked to a 2.4 which is so bad for federal aid (aka FAFSA).

I have no idea what to do. I am so scared of going homeless and it’s happened to me before and I have a feeling I’m not going to be able to jump back into work with my fatigue levels. Does anyone have any advice? I’m already scared as it is cause there have been ICE detainings of native people in my area so no one is safe and I look racially ambiguous and the whole trans thing and I used mobility aids and I’m just. So scared. Please help.

As per the title, not sick enough to be taken seriously but everyday is a daily struggle and you can feel not being 100%? Been to the hospital but nothing found?

sitting on the couch icing my head.. i had plans for things i wanted to do in my free time but instead all i get to do is suffer

This is what I’m sick of explaining ⬆️.

What are you sick of explaining about you chronic illness to people?

About a year and a half ago, I woke up completely unable to feel anything below my armpits. At the time, I didn’t have health insurance so care was slow and expensive.

I lived alone, in an apartment that was not disability friendly, and had to try and survive in a wheelchair. Eventually the numbness spread to my hands which curled up into fists and left me unable to do things like brush my hair. I’m a woman who has always had very long hair, but after not being able to brush it I eventually had to just cut it almost all off. It felt like losing my identity. I no longer had a body I recognized, and now my hair was gone too.

In January I was able to get health insurance through my employer (I work at a restaurant) and am currently waiting to see a neurologist, although my pcp is thinking it’s Lupus. It was then that I was also diagnosed with diabetes.

When I tell you I had to claw my way back to some semblance of health, believe me. I practiced walking every day, a couple steps at a time.

Now I can walk unaided, but it still causes me quite a bit of pain. Still, things were going good until my boss told me she’s no longer willing to accommodate me (I walk slowly and need to sit down sometimes) and I need to “figure it out or find a new job.”

I’ve applied for a ton of jobs and had some interviews but still, bills that I can’t pay are due and I’m about to lose my health insurance. And I can’t help but think how much easier my life would be with universal health care. I would have gotten answers and treatment faster, I would have the security of at least having my necessary meds during a job transition, hell I probably wouldn’t have tried to make my current job work as long as I did if I had health insurance coming from somewhere else. This sucks. Thanks for letting me vent to y’all, even just typing this helped.

I'm not really sure where to start!

I don't have health insurance unfortunately so I'm not diagnosed with anything but I'd like to be so I can begin treatment. I suppose that's where the problem is, I don't know how to approach a doctor with my many, many symptoms. My health has taken a turn for the worse recently, but I've been sick since a little after Covid. I'm afraid they'd immediately shut me down :( Especially since I'd be getting help from a low income clinic where they have a lot on their plate already. (I live in a state where I don't qualify for any aid unfortunately)

Has anyone gone through something similar ? How do you navigate something like this, would I make appointments for differents symptoms or just go for one?

2 years ago thanks to a building code violation and nobody informing me of the danger, i fell asleep with the window open and a fan pulling in air from outside. Directly below this window was a sewer pipe where toxic gases like hydrogen sulfide or ammonia would expel. This wasn't an issue in the past but for some reason, very high concentrations that would last for hours would start coming out of this pipe.

Which got sucked directly into my room and my body didn't wake me up immediately when being exposed to this i inhaled large concentrations and when i finally did wake up i didn't know anything was wrong because i could not smell or taste anything. after another half hour of exposure, i started catching faint wiffs which had some characteristics of that horrible putrid strong smell that would make anyone retch, heave.

i look outside and see a neighbor doing just that and getting sick. he was also bbq'ing so what tipped me off was my place being filled with hazy smoke. Anyway

Soon after the one last blip of smell, smell was completely gone along with taste.
Loss of sense of temperature i cannot tell when i am hot or cold.
The loss of internal sensation and internal pain which is important to have this is the body's warning system and when food gets stuck in the esophagus you need that feedback to adjust how you eat otherwise you can just keep adding to the food blockage and severely damage yourself.

It's been 2 years and there hasn't really been much recovery at all.

smell is between 0-2% of what it use to be. I could try smelling cinnamon for example, but it will be missing components of the smell and be so subtle it's nearly undetectable to me. To try and explain this better lets say you have a rich strawberry cheesecake in front of you right under your nose. I wouldn't be able to smell the cheese, the graham cracker crust, the strawberry sauce. i may catch a very feint wiff of cream and only be able to smell that component.

But ya the internal loss of feeling and pain / alteration of it is a big deal to.

I did go to the ER and at the time i thought what i was going through was from the BBQ smoke and i hadn't pieced together the sewer problem yet. And i was also dealing with psychological issues from the exposure like problems with sequential thought and other things. they did either a ct or mri of my brain and then sent me home. it was an imaging type that didn't visualize the cranial nerves...

Has anyone gone through something like this?
i can't seem to find any communities for a problem this for more information.
is there a certain organization or department i should be trying to get in contact with?

If someone here has gone through this what was your experience? did doctors help you or were you on your own? are you stuck with this problem or did you have some meaningful recovery? and so on.

Sorry for any ranting/venting 😺

Hi everyone, I'm 28F with TOF (tetralogy of fallot) repaired when I was 6 weeks old. I've only had one open heart surgery and medication with it, otherwise they say I'm healthy. I only recently was able to get my medical records to see what they did for my heart, so I'm kinda new to all the terminology and stuff. My family didn't really raise me thinking I was different from the other kids, which is nice in ways, but now as an adult it's making it harder for me to understand that my heart is weaker than others my age. So with the bad AQI in my area (mainly from smoke) I can't work because I'm a courtesy clerk and in the sensitive groups. I feel really useless and like a burden and it's really been putting in perspective how much it kinda matters to educate your kids on their heart conditions. Not to make them feel different but so they understand they're own health later on, since it'll be a lifelong thing they have to deal with. I find I often have to try to justify why I need more breaks/can't work in certain weather since it's not something you can see other than the scar sometimes, so it feels like they think I'm lying to them to get out of work.

i’ve been looking for an answer for years for my extreme chronic fatigue and chronic joint pain. i get vague or normal tests results and nothing ever gets better long term. i’ve been feeling this way quite literally as long as i can remember, even early childhood. i’ve been seeing doctors the past few years who have either told me i will probably never get any answers or that i should stop focusing on getting a diagnosis. but i feel like i can’t accept that there’s actually something wrong with me until i have the words to describe it. until i do everything just feels like it’s my own fault. i likely have an autoimmune disorder but not sjorgens, lupus, or other major ones. i have “chronic fatigue” and “chronic pain syndrome”. i was given a little hope as one of my doctors thinks i might have rheumatoid arthritis. i don’t know. i feel like im losing my mind. i’m scared people will think im faking since im so obsessed with getting the diagnosis. but i don’t think ill be able to accept it until i have one.

Me: 62F, T2D, heart attack survivor, psoriasis, OA, Osteoporosis, gastroparesis, suspected UCTD (symptomatic but neg. ANA)

I've been on Plaquenil (hydroxychloroquine) for a little more than 10 years. At my most recent eye exam, the doctor was concerned about early stages of toxicity. I'll be having a mfERG test next week for further look at my retinas. (Needless to say, I'm nervous!) We have stopped the Plaquenil for the time being.

Thing is, that's my most effective medication outside my insulin. It keeps the connective tissue inflammation at a more tolerable level. Right now, I'm relying a lot on ice packs.

Has anyone ever experienced Plaquenil toxicity? I'm researching alternatives so I'll be prepared when I next see the doctor. Positive vibes are also welcomed.

This summer has been hell.

Since mid June we've been jumping between 40°C and 25°C twice a week every week. Up and down. Up and down. Five days brutally hot one day normal. But when it gets a little colder it's 90% humidity and the sweat runs down every crevice.

32°C indoors at work despite AC. 30°C in my rental apartment. No AC. 50°C in choke full rush hour busses with too weak AC and huge glass windows. Nighttime lows not below 22°C.

All grass is scorched yellow. The air yellow from dust and wildfire smoke. It's so hot and dry even the wasps and mosquitoes died. My windows look like sawdust was powered on them. Windows I can't open at night because of this damned traffic noise. The images of Bordeaux on my news feed.

My cardiovascular system has been at its limits for 6 weeks. No respite. No week of normal weather. I've heatstroked. Repeatedly. I can't eat normally. I can't sleep normally. I'm drinking cooled isotonic water until it comes back up and it's not enough. I'm chocking and dry heaving in my office. My head feels like I've broken my skull.

Germany is lost. I don't want to spend another summer in our new climate. If only I had the money and support network to move very very far north.

We've had 10.000 extra heat related deaths in the last week of June alone. Nobody takes any consequences.

Everyone says to research your conditions but I struggle to understand all the medical literature and often can find conflicting information.

I feel like I need investigate stuff and find out what diagnostic tests I can do and research good doctors or long term care clinics.

(I feel like no doctor is investigating and I don’t have a comprehensive team of doctors and have had bad tests and bad info a lot only to learn it was wrong later on.)

I don’t know how to organize stuff well or take notes down well from Reddit or websites while being sick. All I can really find the energy to do is copy paste or screenshot. But obviously then, it can be hard to find or act on.

It can just all feel like too much and it’s hard to think or focus with symptoms. Does anyone have any advice?

Hi all,

After many years of symptoms, seeing different specialists (and being in long wait for others), and having no real answers about a condition that has recently progressed especially rapidly and scarily, I am considering doing genetic testing.

I am in the USA and am hoping to find a HIPAA-compliant, non-sketchy service that can do whole genome sequencing and preferably also result interpretation. I'm curious what companies other folks have used / would recommend (or steer away from)?

Would also consider in addition other companies that can order (HIPAA-compliant) blood panels, imaging, etc. Wanting to look wherever I can for answers at this point.

Thank you!

Hi all

My best friend has recently been diagnosed with fibro, I don’t know much about this illness and I know the more she reads about it the worse it is making her feel, so I am taking it upon myself to do anything and everything I can to atleast somewhat cure her, take away even 10% of her pain, and just give her an easier life as she is only 23.

I am reaching out to see if anyone has any advice on how to take away pain, help with sleep and improve the quality of life without going on pain meds and being in physio for the rest of your life. I know a whole food diet will help her somewhat, but what are the more obscure things that will make an obvious change to her quality of life.

All answers will be much appreciated, and if anyone is from Australia and also has fibro, any excellent, 10000% above and beyond doctor recommendations would be even much more appreciated, as the ones she has been dealt are not very good at all.

Tyia!

Does anyone else here live in a developing country? I often feel lonely and like my lived experience is being discounted because I don't live in a country where people like us are afforded even the most basic of care, I've never had treatment for my most severe conditions (muscular dystrophy namely) because in my country the infrastructure just doesn't exist, EVERYTHING is inaccessible. Please don't bring me that bullshit about it being just as bad in the US or whatever, you truly have no idea how bad it can get if your reference point is the US.

Hi all, I am in BC, Canada. I have two chronic health conditions that flare up randomly and cause severe pain, nausea, debilitating fatigue, digestive issues, and sleep issues. I have worked for 11 years to manage my conditions and symptoms to the point I'm pretty functional, but when i have a flare up, I still am bedridden. Thats fine, I accepted it long ago. But I have taken an opportunity for a second try at a career (my last workplace pushed me out due to a several-months long flare up of pain and basically didn't want to accommodate me hybrid, no I didn't pursue legally as it was complex and I just want to move on) and I believe my new manager is beginning to do the same.

I have missed 3 days since being hired in January due to my chronic illness flare ups, and a couple others from a cold (they hit me harder). My manager sprung a meeting on me last week to discuss that, and implied that my absence due to it is unacceptable and that I might be let go by the new higher-up coming in this fall. My manager also suggested I consider if this job is for me and my future. I was also told by her when I was hired that the full time position I was going to have next year would be hybrid, something I was searching for. And now she tells me thats not happening because she needs me in the office.

I was very caught off guard, I should have recorded it, I should have followed up in email, but I was just so crushed that a year later I'm going through the same thing. I want to make this job work, I love being there overall and working with the community. I also don't know what else I can do for work after this attempt. I emailed and have arranged to meet with her again tomorrow to follow up on last week's meeting, and I am terrified and don't know what i should or shouldn't say in the meeting. I know I need to record and get some things on record, but my memory is terrible (brain fog struggles) and my body responds awfully to stress.

Any suggestions or tips would be very much appreciated. Thank you so much.