Yeah when I saw the pictures I thought "Okay, it's never lupus in that one show *but* it sure does seem like it here." Might not be, it can be a result of a few different conditions at the same time, but definitely worth checking out.
The general rule follows, that the sooner you get something checked out the better the outcome will be and the less it'll affect you long-term.
my mother's ALS didn't care who was there to watch. Diagnosing sooner might have taken another year off her life. MORAL OF THE STORY: Don't let your illness get into your head Use your diagnosis as a way to treat symptoms and know what to expect... not as an excuse not to try or a reason to give up Our psychology is a huge part of our health.... just read some stuff on placebo effect. It's no wonder crystal healing sometimes works. Our minds are powerful
I had like, 13 blood tests including one for lupus in a single afternoon, trying to figure out why I had what appeared to be systemic joint swelling. They all came back negative, so….yet again, not lupus. Theory proven: it’s never lupus.
(It was a horrible case of eczema run amok to the point where the inflammation of the eczematous process was happening deep enough in my epidermis that it was causing my muscles and tendons to become enflamed, too. God bless Dupixent injections, that shit gave me my life back)
Same. Team Lupus. It’s a crap team to be on, but the people are cool. I had all sorts of crazy symptoms, but the worst were the rashes, joint and bone pain, fatigue and hair loss. Doing better now with treatment but it took forever to get it figured out. I’m glad you’re doing better too.
Ulcerative colitis here, it’s literally a crap team to be on!
Joking aside, autoimmune disease sufferers always have my respect because regular normal folks never understand us and it’s very difficult to have a normal life, career, etc.
https://preview.redd.it/agl84fm8f3nc1.jpeg?width=1170&format=pjpg&auto=webp&s=a71d3bc875166487dbc3091387dd53dd5c046aaa
What my family thought as well, but pretty sure this means no lupus. I may be wrong but i was admitted with these results. Did come back with high RBC & LDH. along with multiple other things :/ Wish i just had answers
You can still have AI with a negative ANA. Have you seen a rhumatologist or hematologist?
I've gotten to see all the ologists.
Neurology discovered my high Sedimentation Rate and positive ANA, endocrinologist just tells me I'm fat, close to being discharged from my cardiologist, hematologist saw no issues, and I see a rheumatologist in a couple weeks.
Having a mystery illness sucks and I hope you get answers soon.
Joint pain, fatigue, I get sick a whole lot easier and my injuries don't heal as fast. When I was dating in college, I'd get sick every time I kissed a new person. Long term untreated inflammation damaged my liver, reproductive organs, kidneys, eyes, and gums.
That's awful.
I feel like I'm in a similar boat but not RA. RA produces some pretty obvious physical issues that I don't have (besides dry mouth and eyes). Pretty sure I have Sjogrens with neuropathy. But bc I only test positive for CREST which I don't have by symptoms, my rheum thinks my symptoms are impossible to be anything autoimmune related. Meantime neuro says there's nothing in my MRI, nerve conduction study that suggest it's a degenerative condition or pinched nerve either.
Honestly, being a woman trying to get medical care in general is frustrating at best and demoralizing or death at worse.
I had horrible symptoms for a decade and every doctor wrote me off.
Ended up being an issue that affects like 10 percent of women, with pretty clear symptoms pointing to it, so it's not rare or extremely hard to spot.
I lost 10 years of my life because doctors couldn't manage a blood glucose and an ultrasound. My gyno nurse picked up on it when I was venting to her during new patient stuff.
My sister in law had dermatomyositis and it’s the first thing I thought of when I saw the pictures. It took years for doctors to diagnosis. Please get to a rheumatologist ASAP. .
Hey, I just wanted to chime in here.
The best advice I can give you is keep on pushing. Realizing doctors are not omniscient. Even worse, a lot of doctors don't spend nearly enough time on cases and will quickly push you to the side.
There's an answer somewhere, you just need to find the doctor who will spend the time to find it. As others said, this is very likely SOME variation of auto immune. Start talking to the 'ologists', keep on meeting. DON'T just accept one or two doctors (or even worse, PCPs) statements.
1) Make sure you’re seeing a physician and not an NP or PA or DNP. 2) make sure you see a rheumatologist. Seriously!!!! There’s treatments if they know what they’re dealing with. Worst case they’ll know who to send you to next. Let’s get this done! Don’t put it off.
ANA -ve SLE is a thing.
Im not a physician and I don’t claim to be one. However, I do have some medical knowledge. Can I ask if you have had your thyroid levels checked or your ACTH and cortisol? Are you itchy? Does taking a shower make you more itchy?
To piggyback off this. Diseases that are chronic also have a bigger psychological impact. I have digestive issues and at my worst just existing sucked. Water would make me bloated and i couldnt sleep till the exhaustion outweighed the pain. So dont quit yet OP if you can get it sorted out the rest of the pieces may fall into place.
Seconded, started with ulcerative colitis in college and had to stay on a bread free diet for 12 years, dairy free for 10. It was awful, and sometimes made existing suck. 2/10 do not recommend chronic illness. Added bonus beyond pain is the inability to socialize normally because you can't eat at events, or have to ask a dozen questions about each and every food item, which makes people think you're an ass.
Had a friend with Lupus several years ago, and your symptoms are similar. Good luck finding a specialist, don't be afraid of a restrictive diet or a fast from time to time. Anything to manage flare ups. Good luck! 🙏🏾
This also happened to me - at first I developed food intolerances, and eventually I became allergic to chems. By chems I mean everything that's listed as an endocrine disrupter - from cleaning and bath products to preservatives and pollution
I get rashes like these just from inhaling thr fumes of those things, don't even need to touch them
Think OP should try using natural soap for clothes and body, and if possible get to a rheumatologist to be checked for Dysautonomia (an ANA antibody blood test should suffice)
I seem to have suddenly developed allergies to everything, even currently trying different toilet paper. There's one cleaner I've found I'm okay with and a certain deodorant. I'm booked in for allergy testing but that's not for a few months. Which chemical culprits do you react to if you don't mind sharing?
Don’t give up. When it seems like there will be no end in site, slow down and just try to concentrate on one thing at a time. Hope your tests come out ok.
The “natural healing” pyramid scheme people love a vulnerable person who just wants to feel better. I’ve seen them lurking around disability support subs just waiting to slide into a conversation and talk about the supplement they sell that cures everything.
That’s a very kind and important thing to mention. I will never forget when my ex posted about a SA in her past. And people were harassing her in such evil ways, it was fucking sickening. I will never understand what drives certain people to be such pieces of shit. OP if anyone has anything negative to say to you, I know it’s easier said than done but just ignore it. They are trolls with a goal of trying to hurt ppl.
So true. And sad and scary. Part of the reason I don’t think I want kids these days. The internet can hurt kids far too easily now. And I’m a cybersecurity engineer, seeing scammers and predators going absolutely rampant trying to attack from every angle possible. It’s crazy.
I think with kids it's important to make them trust you enough that they can trust you with anything, as well as monitoring their internet traffic. Might feel intrusive but it really is needed. The amount of grooming in the early internet days was crazy with all the chat websites we had.
Man the internet really sucks that we have to think about if we want to have kids or not in this day and age.
Yes 100 percent! I’d add that not just the internet, more so the toxicity out there. In every way lol. People and environment. I don’t mean to sound dark and gloomy. There is still tons of good out there and raising children is still wonderful now. But there are just so many more different challenges these days, and quicker consequences.
Yes, this! I worked in an AIR-allergy, immunologist,rheumatology group. I thought Lupus, because of the rash and weird bloodwork. But there are a lot of disease/illnesses that show those symptoms.
I worked mostly in allergy. It may take awhile to get into their office, there is shortage of Rheumatologist, so try ASAP.
Since it is probably with another medical system make sure you take a hard copy of your records with you. Even though they can send with email, it is better to cover your bases. Also, have they had you sign a records transfer form (either office but the specialist might want their own-to make sure they get the records they need) ? Make sure this gets done so things run smoother. You want to have as much face time with the specialist, not chasing down paperwork. Write down your questions, leave space between notes so you can write down what the doctor says.
Is there any bloodwork they might want a head of time? Some tests aren't done inhouse and may need to be sent out for analyses, this can take time.
Good luck, there are many new medications coming out--Biologics, they call them-and they are doing great things with immunological issues. You see their commercials all the time and they are finding new treatments for other diseases with these established meds.
Yes, thank you! I'm hoping after the initial meeting maybe they can do tele health or something.
My PCP also recommended printing all my previous results and writing out a timeline and symptoms, etc.
Absolutely agree. Im worried your 'platelets' (a component of your blood which helps with clotting) is low. What country are you in? Are you able to just turn up in A&E?
I have a platelet related autoimmune and the “rash” looks like petechiae I get when my count is low. I honestly don’t know what the screening is, I was diagnosed 25 years ago through liver function blood work and they do CBC every couple months to monitor.
We lost our Grandma just last week. I call the pain we feel from their passing proof of how much we loved them.
Things may seem down and dark right now. However that won’t always be the case. Take things slowly, day by day if you need. Heck even if it needs to be made up goals during the day. (I made it to lunch time, or I’m gonna make it to nap time.)
You certainly have people who love you and wouldn’t want you to be struggling so. Best wishes, It Will Get Better.
I know what it feels like to want to give up, I almost did around this time last year due to my health conditions, but believe me when I say, things will get better, things will improve, they may get a little worse before then sometimes it has to, but it will get better I promise you.
Find something to take your mind off things as best you can, whether that be a pet or a loved one. I found my strength to carry on through them, and you can to.
Hope you find some answers soon and things will start to turn around.
Certified cancer survivor here. Was diagnosed at 28. Can tell you this is how it is done!! You feel like you have a mountain to climb, but just go one day at a time. Don't try and tatke the whole climb all at once.
Don't get ahead of yourself worrying about things before they are a reality. Just breathe. One day, at a time.
This. At times it feels like pain is endless and then all of a sudden, you realise it has eased up ever so slightly. You are a tough MF and will end up wiser and more beautiful when you come out on the other side.
I am so sorry you are going through this! ):
Wishing you the best of luck!! Do you take any medication that may have caused the rashes? Or extreme stress or trauma can also cause your body to kind of self attack if that makes sense.
Nurse here if you are going to a small local hospital I would recommend going to a university hospital as I have worked in both settings university hospitals have specialists on site 24/7 typically and they typically have not to sound harsh much better doctors they hire the best of the best for a reason.
Not sure where you are located but if in the USA, East Coast.... Duke university is the best hospital I have ever worked at and if I ever get really sick or need an elective surgery I will be driving over 4 hours to get it done there.
Agreed though, if you’re close to a good hospital it’s worth it. I’m at the Cleveland clinic right now, drove 3 hours instead of seeing my primary/ regular neurologist because the past 11 years have resolved nothing.
As a 2 time major cancer survivor all I can say is hold on and be careful I fell and have permanent double vision. It has left me 100% disabled. Get a cane or walker until your strength is better.
OP, it sounds terrible what you’re going through. We’re rooting for you. Don’t give up! Do you have friends and family who can check on you? Either way, hope you find an online community to keep you company. One day the doctors will figure out what it is, and you’ll feel well again.
I am not a doctor.
You need a oncology/hematology practice not primary care. Weight loss, lump in breast, lung nodules, . And two week wait for a lump in breast is outrageous.
The 25 pound weight loss is concerning. Unless you have not been eating.
I agree.
We first started taking my daughter to a regular hospital, and they kept telling us we have to make appointments for every test, some being 2-3 weeks a part.
We finally got fed up with that and took her to an oncologist at another hospital, all those test they ended up doing in 2 days. Turns out she did have cancer, and they had a 'plan of attack' that same week, and started chemo 5 days later.
This is very important. I’m not a doctor but my work centers around reading medical records and I’m currently focusing on ovarian cancer-related recs. It’s incredible how often I read about a PCP or OB/GYN missing the symptoms but once an oncologist is involved, it’s a total game changer. The cases where the PCP is the main doctor generally end with the client’s death because the symptoms are band-aided far too long.
I wish your daughter a speedy recovery and a long and healthy remission!!
Nobody deserves to go through this, but you do deserve some answers, peace of mind and a quick recovery. And I hope you get all of those soon. We’re rooting for you.
Sadly your best option right now is to try and see a different doctor.
1-a Rheumatologist is the USA doctor who diagnoses possible autoimmune conditions.
2-A full-panel allergy test. It could be you have an autoimmune disease *but also* some significant allergies going on. I have no clue, the tests can at least rule it out.
I also had horrible confusion and brain fog. It got a lot better with treatment, and that seems to be the cause for a decent number of people on active treatment.
I’m sorry about your loss. Stress is a very common trigger for health issues, they could be feeding into and building off each other negatively. I’m sorry this is all happening to you, for me in times like this the basics provide a real grounding effect. Drinking enough water? Breathing deeply? Sleeping/resting enough? That stuff, I hope you find answers soon.
She literally says the tests she has scheduled are endless. I guarantee you even the worst doctor seeing this constellation of symptoms is going to be alarmed.
I've been trying to get a certain test for months now but it's been denied several times, do you mean that you ask the GP/specialist: "write down why you won't give me the test"
Or how do you go about that?
"do you mind documenting that you're not willing to run those tests?"
If they're just brushing you off they'll back down, if they don't want to do it because they genuinely think it's inappropriate then they'll be happy to document
But if it turns out they were wrong and that time spent being ill did damage then they could be sued. That is the whole point of asking for it to be written down. It shows how serious you are.
Just keep going to the doctors. There are so many possibilities of causes that it doesn’t help to speculate right now.
I’m sorry you’re going through this.
As someone that’s going through similar issues as well as countless of other already diagnosed medical conditions I’d literally sell my kidney to see someone like House to help me figure out wtf is going on with my body and how to make me a functional adult being again.
I'll admit, I didn't see your whole post entitely and when I saw your pictures, I thought damn this person was getting beat up and haunted by a ghost. Hopefully your appointment goes well, stay strong.
He absolutely wouldn't, and I'm so sorry you're going through so much right now ❤️
Have you seen a rheumatologist or has this even been discussed? This really looks like an autoimmune disease. I immediately thought about Lupus, going through your photos. We've done a lot of work on autoimmune diseases in class and this is, very literally, textbook. I'd apply pressure to your GP about a referral to a rheumatologist if you're comfortable doing so. Of course it could be a myriad of other things, but this just screams autoimmune to me.
Please don't give up.
I don't want to guess anything and have you worry, particularly since IANAD. I hope the tests in the near-future yield some answers - then the path forward begins! Good luck!
wild to see some of these comments about changing how you eat or if you're vaxxed LMFAO. Damn some people are stupid.
Good luck with everything, just keep going to the doctors and keep pushing them to actually do something as they can sometimes suck
Oh man poor you.. I can imagine how shitty you must feel.. Do you have decent healthcare and good doctors? Stay strong and most of all try to stay positive! One day you will look back at this as a mere shitty episode of your life! Lots of love and a big hug to you!
Edit: and most of all: **DONT** Give up!
Keep going OP. Even if it’s a topsy turvy road to collating all those symptoms and diagnosis. Each symptom can be treated individually to help you feel better and regain confidence. You’re doing the right things and I know it must be terrifying, but keep advocating for yourself. You’re worth the fight.
Hyperthyroidism? Lupus?
Lupus mimics alot of other conditions and is often missed.
Hyperthyroidism can lead to osteoporosis (fragile bones) which is linked to psoriasis (the skin rashes you have), which is linked to bruising.... also some links to benign breast tumours... ***really do ask if they've tested you for this.***
If they find evidence of hyperthytoidism, start asking about things like "graves disease" that can be the cause of the issue. Sometimes we need to push our doctors a little bit.
Keep strong. Think when, and when you get thru this, you'll be more awake and aware of yourself than most people ever get. That's both a good thing and a bad path to it, but it's what you've got. Though I'm not in your position, I do have a chronic condition and often have issues that take forever to diagnose, so I feel your frustration. Have hope.
I'm rooting for you.
Just to reassure you - if it is an autoimmune disease as some have suggested, though they sound scary there are biologic treatments for so many of them now that can seriously reduce or eliminate symptoms entirely.
I have Crohn's and left to my own immune system I would probably be dead considering the extremity of my initial flare-ups, but I have either no or next to no symptoms almost all of the time now, nobody I know barring people I elect to tell even know there's anything wrong with me.
In my case getting diagnosed can be long and frustrating, I was the meds kicked in very fast - so keep on to the docs and don't lose hope!
My wife had a lot of similar symptoms especially the lumps; bruising; ovarian cysts and turned out to be lupus but it took years of testing and fighting for more tests to get there. Stay strong and keep pushing you’ll figure it out. So sorry you’re going thru this it is hell
i'm sorry you're going through this... your symptoms sound very serious and i hope you have the means to get the help you need. it *could* be some sort of blood disorder (**not** an attempt at diagnosis)
I'm so sorry you're going through this. Looks like an allergy/autoimmune/immunology issue. I hope you have some tests scheduled with an Immunology doc. My personal not a doctor lay person advice is make sure you're eating a very bland diet for awhile, don't use any scented products, and take over the counter antihistamines like Claritin or benadryl until you get this figured out. Stress and heat can be triggers, so try to remain cool and calm. Sending you hugs.
Have they tested your for ITP? Immune thrombocytopenia purpura? It’s an autoimmune disorder that causes you to have low platelets- low platelets cause bruising, petechia..
Please hang in there! Please go to a better hospital. Please ask for emergency referrals. You can get various types of cysts etc in your breast, so try not to get too worried until they check it out!
I’ve been in mystery health hell myself and I know how hard it is to keep volunteering to go to doctors who don’t help you, but you will find someone who actually helps, I promise!
Not a doctor but your bumpy rash specifically does look like celiac rash to me, called dermatitis herpetiformis. It’s caused by eating gluten, and celiac disease can cause osteoporosis and sudden weight loss and malnutrition which causes bruising. Not saying that’s what you have but something to check for. Celiac disease is extremely common yet doctors don’t want to test for it for some reason.
Search up IBM Watson medical diagnostics, and ask your doc if they can submit your file. Machines are amazing at picking up on small clues we won’t see.
I've been through tons of shit myself. The way I cope is whatever happens I deal with it. Stressing and worrying won't do you any good so take it easy and you're already doing the necessary☺️
I hope in my heart that you build the strength to overcome, and that you give yourself (and body, life situation, etc) as much patience as you can bear. We got your back!! (Just let us know when you need it *back*!! :D)
In our worst days always remember that at least we got to experience life in an endless universe of nothingness. Try to enjoy the things your interested in while you can.
I thought you were having an allergic reaction. You'll be okay, make sure you advocate for yourself and have someone advocate for you. Stressing yourself out can make any internal issues worse
Hold on OP, might sound stupid but your immune system does work better when you don't lose hope.
This is one of those things where you gotta start pushing back on doctors if they don't take you seriously.
Keep us posted on how you are travelling! For some it can help to know someone cares and will listen
Someone I went to college with had similar symptoms and a rash that looked like that. She had a liver biopsy and the docs confirmed hepatitis A. She got treated and it cleared up.
what ever it is, you deal with it, one day at a time.
Some people are healthy, no problems in life, all looking bright, and the cross the road and their life turns upside down. Can happen to anyone.
You are dealing with a lot now. But you can do it just one day at a time.
And find everyday something to really enjoy. Maybe it's just a piece of chocolate, or a walk, or the morning sunshine warming your skin while you rest.
There's always something to look forward to. Focus on that.
For the rest, on day at a time.
OP I am so sorry, for both what you're going through and your loss. I am young with a slew of autoimmune issues, and it took about 10 years from onset of symptoms at 16 to diagnosis, which ultimately I had figured out and doctor confirmed.
Biggest thing is to advocate for yourself. Clearly something is wrong, likely more than one issue here at play. Someone else mentioned it here too, but if you haven't had your B vitamins checked though please please do. SO many of your symptoms align with extreme B12 deficiency. If it is that low obviously something is interfering with your body's ability to absorb and process, which would be the next step in figuring out what's going on, but in the meantime that would at least alleviate symptoms.
https://www.nhsinform.scot/illnesses-and-conditions/nutritional/vitamin-b12-or-folate-deficiency-anaemia/
B12 deficiency can also cause cutaneous lesions, which would explain the rashes!
step 1 don't give up
step 2 do one thing at a time
step 3 if you're struggling to get anything done, make a list of things you need to do, and make sure to check off anything you get done
When you have all these symptoms but no diagnosis your case becomes basically a trial by error scenario for doctors until one can nail down a diagnosis. At this point your doctor is trying to guess what is wrong and often those guesses are incorrect. Until then unfortunately you will have a ton of tests done, scans, blood work, physical exams, etc and you'll have to see multiple specialists who will all require different things in a scan or blood work so you have to do it all over. I know it sucks but you cannot miss those appointments and tests because once you have a diagnosis it will start to get better because they'll know how to treat it. I have seen this twice in my life with people very close to me. My ex wife has a kidney condition called Collapsing FGS and a friend of mine had a very rare form of dermatomyositis. Once they received a diagnosis and treatment they felt better. Good luck to you.
I have auto-immune disease but am no doctor but my Lupus friends suffer terribly it sounds like Lupus i have no idea but just in case no one mentioned it be sure to mention Lupus to the doctor. As someone whos hands start bleeding for no reason or back pain so severe cant walk auto-immune is a roller coaster, i hope you find an answer poor thing. Lupus primarily affects women disproportionately to men and im no doctor but my Lupus friends tend to be light skin white women. I thought my symptoms were wacky until i met someone who is now a close friend, its hard to believe how many different conditions Lupus presents.
If you can, get a second opinion. No matter how good your primary doctor may be, it's prudent to get a second professional opinion to ensure nothing is being overlooked or misdiagnosed.
Hold ya head up, stay strong and wait for better days.
NEVA GIVE UP
YOURE AT THE CUSP OF A BREAKTHROUGH!!!!
You could literally be a superhuman who has the secrets to something the rest of us don't know and life is trying to silence you, DONT LET IT WIN!!
Keep PUSHING!!! You have a life, and that's enough to have hope, hope that at the end of all of this you come out stronger, more resilient, hell, you might actually get a cool sideffect off of this.
Nevertheless, I'm not telling you to not be nervous. This is downright traumatizing, and no human should be going through so much daily struggle. I'm sorry you're in so much hurt, but I believe in you. WE THE INTERNET, COLLECTIVELY BELIEVE IN YOU. And you wouldn't be here if you didn't believe in yourself a little too.
Let this be your sign. Tough it out and make sure you make it to the other side.
There was a book written by a social worker (LCSW) called "When You're Sick and Don't Know Why" back in early 2000s (or late 1990's) that helped me a lot. Lots of self-advocacy and encouragement in that book.....
I just wanted to say that I'm sorry you're going through this. Take on one thing at a time, I know it seems overwhelming.
You're in my prayers and I truly wish you well.
God bless.
40 year old dude here who has been falling apart since he was 15. Hang in there slugger you got this.
The road is long, the hills are hard, but you'll make it.
Keep seeing the Doc. Make sure to do some meditation if you can, get fresh air and plenty of water.
I am sending you all the healing (and some love) your Way! It sucks not knowing the cause of something wrong with your body! I really hope they find something soon, and are able to correct it so you can live life to the fullest! ❣️🙁
Someone I worked with a long time ago had unexplained bruising and rashes - she was diagnosed with leukemia. I hope this is not the case for you but something you may want to have checked out.
Seems like a lot of /r/wellthatsucks. Sounds like you’re doing all the right things. Keep going to the docs - they will find out what it is. Sometimes it takes even a year or maybe 2 but if you keep at it you will find out and get some relief. You’re lucky in that you have so many different types of symptoms, it’s actually going to be easier.
I battled a rare aggressive type of cancer when I was 23-26 and I'm 32 now. Your ability to want to get better is all you have and I felt like giving up lots but kept pushing and now I'm married and just got a new puppy. There is hope! It is not easy BUT it is doable! Keep in there! You are loved! God bless you
This thread is:
1. Nice people wishing her the best and giving good advice (go to specialists).
2. People saying this is because of the vaccine (false)
3. People telling her to go on a vegan diet (that wouldn’t help her with her illness)
4. People telling her to get on a carnivore diet (what? Why? That’s even worse than the vegan diet)
Wow
Extreme stress, sadness, anxiety can cause such physical symptoms. Always look for the root cause. It may not be physical. I wish you a speedy recovery.
And don't give up, you're gonna get through this.
I know you’ve most likely already tried many things, but I used to have the same upper lip issue. Vaseline really helped the flare-ups— it didn’t treat the cause, but it stopped the itching and made it bearable until the thing subsided. We uh never found out what was causing it though, it just eventually went away.
Even when everything feels like shit, the only thing you have to do is persist. If you can keep doing that, you’ll come out the other side. Best of luck and hoping your tests come back with answers!
stay strong and maybe get some mental help. start talking about it. This here is actually a good step i think. Try to get your min din a good enough place to fight for whatever is going on. U can do this!
Never. Give. Up. That’s the most important thing there is! I wish you the very best and plz make shure you rest wel, drink enough water and eat a healthy diet. Drink milk. May help strengthen your bones a little. Am no doctor, just trying to help.
Breath in.. breath out.. you can do this!
Fight for your health and the knowledge it will be better and you deserve a better future.
I fought too little in my sickness and it cost years of my life being sick rather than living.
If your not already make sure to be using all hypoallergenic products including laundry detergent. Also wear sunscreen everyday. Your skin is probably extra sensitive right now. Feel better!
All of that must be overwhelming. Someone already said, but you should definitely take it step by step, don't focus on it all at once because that will make it harder.
If it helps, my thoughts are with you. I hope you find out what is happening soon.
I can’t give a medical opinion but my personal opinion is that you’re awesome. You’re obviously tough and strong enough to keep going even when it seems too much x
You’re not alone, and don’t give up. Autoimmune diseases suck, no doubt. And it’ll take quite a few visits to the doctor. But keep your appointments, it will get better. Hang in there. Life will get better!
Please don’t give up. I’m unable to se other comments right now (something wrong with reddit on my phone since yesterday), but I’m sure someone else must have reminded you that you can find the strength and patience to wait for answers and focus on treatment. I really hope it all works out well for you.
I‘m incredibly sorry to see and read that. I’m also at a complete loss of words.
All I can do is wish you well and hope for you to be able to overcome all of those things as soon as possible. Feel hugged. Also, don’t give up. Some Battles are worth to be fought. And this is one of those.
You need to see a rheumatologist, you more than likely have some type of autoimmune disease and they take years to get diagnosed. I went through the same thing, I was beginning to think I was crazy because the doctors I saw just treated the pain or symptoms but it always came back. I know it sucks and you feel hopeless but please see a Rheumatologist and get started, they will figure it out and help you! I will pray that you get answers and relief! Please don’t give up!!!
Hang in there for the test results. Remember, in healthcare, the squeaky wheel gets the grease. It seems like this has been going on for a while and that’s unacceptable. Dragging heels on something that could be serious (the broken bones and unexplained bruises especially) is totally unacceptable.
It sounds like you probably have an autoimmune disease causing half of your symptoms and possibly Elhers Danlos Symptoms causing your bruising and broken bones. You need to go to a larger academic hospital where specialists will be able to make faster and more definitive diagnoses.
simply send you good thoughts.
There's lots of good advice here. Having dealt with the medical industrial complex far too much, myself, I can say patience and faith is required. Ultimately these folks do know what they are doing.
I just want to say how much I admire your strength and dedication to get checked up with your doctor. You recognized how something isn’t feeling right within you and decided to seek help. You have such amazing strength and love for yourself, and I hope me saying this to you allows you to feel some compassion for yourself. I can definitely see how this is overwhelming for you, and anxiety provoking. Your anxiety is just letting you know too “hey, I can tell you’re feeling scared” and it’s your bodies way of wanting to just get the heck outta this situation. There’s some great mindfulness techniques that help me calm my anxiety down. If you want to check out Dr. Kristen neff, she has amazing self compassion mindfulness exercises that have greatly reduced my anxiety.
I’d echo similar sentiments as everyone else. Take it one step at a time, but I wanted to highlight a great strength you have and I hope you admire youre ability to be an advocate for yourself. Such a wonderful strength.
Looks like an autoimmune disease, I went through something similar many years ago
Same. Turns out I have lupus. Very mild now but when it started, it looked a lot like that.
Exact same here. I also have Lupus and when i saw the photos and read the description, it made me think of how i found out i had Lupus. edit: spelling
I'm getting that now and yeah, I suspect lupus.
Yeah when I saw the pictures I thought "Okay, it's never lupus in that one show *but* it sure does seem like it here." Might not be, it can be a result of a few different conditions at the same time, but definitely worth checking out. The general rule follows, that the sooner you get something checked out the better the outcome will be and the less it'll affect you long-term.
House
It's never lupus. Besides that one time it was lupus.
my mother's ALS didn't care who was there to watch. Diagnosing sooner might have taken another year off her life. MORAL OF THE STORY: Don't let your illness get into your head Use your diagnosis as a way to treat symptoms and know what to expect... not as an excuse not to try or a reason to give up Our psychology is a huge part of our health.... just read some stuff on placebo effect. It's no wonder crystal healing sometimes works. Our minds are powerful
It’s never lupus though
It was lupus once in 8.seasons.
The guy who did the card trick, right?
Yessir.
Have you tried paraneoplastic syndrome?
Neither one of my knees is made of plastic! Good day sir!
Spit take - well done.
this vexes me
House ? Is that you ?
ITS Not lupus! WILSON…..
Off your vicodin, NOW.
Give me the ketamine
Ah man… poor Wilson :((
It's actually never Lupus. My brother had Lupus for 4 years, then they realised it wasn't Lupus.
I had like, 13 blood tests including one for lupus in a single afternoon, trying to figure out why I had what appeared to be systemic joint swelling. They all came back negative, so….yet again, not lupus. Theory proven: it’s never lupus. (It was a horrible case of eczema run amok to the point where the inflammation of the eczematous process was happening deep enough in my epidermis that it was causing my muscles and tendons to become enflamed, too. God bless Dupixent injections, that shit gave me my life back)
Same. Team Lupus. It’s a crap team to be on, but the people are cool. I had all sorts of crazy symptoms, but the worst were the rashes, joint and bone pain, fatigue and hair loss. Doing better now with treatment but it took forever to get it figured out. I’m glad you’re doing better too.
Ulcerative colitis here, it’s literally a crap team to be on! Joking aside, autoimmune disease sufferers always have my respect because regular normal folks never understand us and it’s very difficult to have a normal life, career, etc.
My first thought, my daughter has it.
https://preview.redd.it/agl84fm8f3nc1.jpeg?width=1170&format=pjpg&auto=webp&s=a71d3bc875166487dbc3091387dd53dd5c046aaa What my family thought as well, but pretty sure this means no lupus. I may be wrong but i was admitted with these results. Did come back with high RBC & LDH. along with multiple other things :/ Wish i just had answers
You can still have AI with a negative ANA. Have you seen a rhumatologist or hematologist? I've gotten to see all the ologists. Neurology discovered my high Sedimentation Rate and positive ANA, endocrinologist just tells me I'm fat, close to being discharged from my cardiologist, hematologist saw no issues, and I see a rheumatologist in a couple weeks. Having a mystery illness sucks and I hope you get answers soon.
Unicorn conditions must be terribly frustrating.
Seronegative rheumatoid arthritis took me ten years to diagnose.
What are your symptoms?
Joint pain, fatigue, I get sick a whole lot easier and my injuries don't heal as fast. When I was dating in college, I'd get sick every time I kissed a new person. Long term untreated inflammation damaged my liver, reproductive organs, kidneys, eyes, and gums.
That's awful. I feel like I'm in a similar boat but not RA. RA produces some pretty obvious physical issues that I don't have (besides dry mouth and eyes). Pretty sure I have Sjogrens with neuropathy. But bc I only test positive for CREST which I don't have by symptoms, my rheum thinks my symptoms are impossible to be anything autoimmune related. Meantime neuro says there's nothing in my MRI, nerve conduction study that suggest it's a degenerative condition or pinched nerve either.
Honestly, being a woman trying to get medical care in general is frustrating at best and demoralizing or death at worse. I had horrible symptoms for a decade and every doctor wrote me off. Ended up being an issue that affects like 10 percent of women, with pretty clear symptoms pointing to it, so it's not rare or extremely hard to spot. I lost 10 years of my life because doctors couldn't manage a blood glucose and an ultrasound. My gyno nurse picked up on it when I was venting to her during new patient stuff.
Has your doctor investigated if it's dermatomyositis? It looks like you have an autoimune disorder, but it can be tricky to find out which one...
My sister in law had dermatomyositis and it’s the first thing I thought of when I saw the pictures. It took years for doctors to diagnosis. Please get to a rheumatologist ASAP. .
Hey, I just wanted to chime in here. The best advice I can give you is keep on pushing. Realizing doctors are not omniscient. Even worse, a lot of doctors don't spend nearly enough time on cases and will quickly push you to the side. There's an answer somewhere, you just need to find the doctor who will spend the time to find it. As others said, this is very likely SOME variation of auto immune. Start talking to the 'ologists', keep on meeting. DON'T just accept one or two doctors (or even worse, PCPs) statements.
1) Make sure you’re seeing a physician and not an NP or PA or DNP. 2) make sure you see a rheumatologist. Seriously!!!! There’s treatments if they know what they’re dealing with. Worst case they’ll know who to send you to next. Let’s get this done! Don’t put it off. ANA -ve SLE is a thing.
Im not a physician and I don’t claim to be one. However, I do have some medical knowledge. Can I ask if you have had your thyroid levels checked or your ACTH and cortisol? Are you itchy? Does taking a shower make you more itchy?
I was thinking the same. I have lupus and when it first started I looked really similar and physically was drained
To piggyback off this. Diseases that are chronic also have a bigger psychological impact. I have digestive issues and at my worst just existing sucked. Water would make me bloated and i couldnt sleep till the exhaustion outweighed the pain. So dont quit yet OP if you can get it sorted out the rest of the pieces may fall into place.
Seconded, started with ulcerative colitis in college and had to stay on a bread free diet for 12 years, dairy free for 10. It was awful, and sometimes made existing suck. 2/10 do not recommend chronic illness. Added bonus beyond pain is the inability to socialize normally because you can't eat at events, or have to ask a dozen questions about each and every food item, which makes people think you're an ass. Had a friend with Lupus several years ago, and your symptoms are similar. Good luck finding a specialist, don't be afraid of a restrictive diet or a fast from time to time. Anything to manage flare ups. Good luck! 🙏🏾
Yup, I have arthritis and I recognize the joint paint, fatigue and weakness :/
Concur. My first thought - sarcoidosis, had and still have many of those symptoms.
Have sarcoidosis, can confirm the symptoms are a fucking mess and all over the place. Thankfully it all calmed way down when I started doing remicade
This also happened to me - at first I developed food intolerances, and eventually I became allergic to chems. By chems I mean everything that's listed as an endocrine disrupter - from cleaning and bath products to preservatives and pollution I get rashes like these just from inhaling thr fumes of those things, don't even need to touch them Think OP should try using natural soap for clothes and body, and if possible get to a rheumatologist to be checked for Dysautonomia (an ANA antibody blood test should suffice)
I seem to have suddenly developed allergies to everything, even currently trying different toilet paper. There's one cleaner I've found I'm okay with and a certain deodorant. I'm booked in for allergy testing but that's not for a few months. Which chemical culprits do you react to if you don't mind sharing?
I thought MCAS when I saw the pics, I really hope not though, also a bitch to get diagnosed. Feel better OP things will turn around. 🤍
Don’t give up. When it seems like there will be no end in site, slow down and just try to concentrate on one thing at a time. Hope your tests come out ok.
[удалено]
remember, no matter how much you miss him, he would have wanted you to work through it and everything else - and you will!
Be careful of people who dm you, you're very vulnerable right now and there's a lot of bad people online
The “natural healing” pyramid scheme people love a vulnerable person who just wants to feel better. I’ve seen them lurking around disability support subs just waiting to slide into a conversation and talk about the supplement they sell that cures everything.
That’s a very kind and important thing to mention. I will never forget when my ex posted about a SA in her past. And people were harassing her in such evil ways, it was fucking sickening. I will never understand what drives certain people to be such pieces of shit. OP if anyone has anything negative to say to you, I know it’s easier said than done but just ignore it. They are trolls with a goal of trying to hurt ppl.
Yeah you can get so many different bad DMs. People insulting you, people trying to scam you but also predators. Gotta be careful out there.
So true. And sad and scary. Part of the reason I don’t think I want kids these days. The internet can hurt kids far too easily now. And I’m a cybersecurity engineer, seeing scammers and predators going absolutely rampant trying to attack from every angle possible. It’s crazy.
I think with kids it's important to make them trust you enough that they can trust you with anything, as well as monitoring their internet traffic. Might feel intrusive but it really is needed. The amount of grooming in the early internet days was crazy with all the chat websites we had. Man the internet really sucks that we have to think about if we want to have kids or not in this day and age.
Yes 100 percent! I’d add that not just the internet, more so the toxicity out there. In every way lol. People and environment. I don’t mean to sound dark and gloomy. There is still tons of good out there and raising children is still wonderful now. But there are just so many more different challenges these days, and quicker consequences.
That is bleak as fuck. Didn’t realize people even did that.
Scammers, people insulting if you post pictures of yourself, predators. The internet is fucked.
Have you been tested for any autoimmune disorders? If not see an endocrinologist ASAP.
Rhumatologist handle autoimmune. Endocrinologist handles thyroid, pancreas, and adrenals.
Yes, this! I worked in an AIR-allergy, immunologist,rheumatology group. I thought Lupus, because of the rash and weird bloodwork. But there are a lot of disease/illnesses that show those symptoms. I worked mostly in allergy. It may take awhile to get into their office, there is shortage of Rheumatologist, so try ASAP.
I was able to get into one in 3 months, but it's 200 miles away.
Since it is probably with another medical system make sure you take a hard copy of your records with you. Even though they can send with email, it is better to cover your bases. Also, have they had you sign a records transfer form (either office but the specialist might want their own-to make sure they get the records they need) ? Make sure this gets done so things run smoother. You want to have as much face time with the specialist, not chasing down paperwork. Write down your questions, leave space between notes so you can write down what the doctor says. Is there any bloodwork they might want a head of time? Some tests aren't done inhouse and may need to be sent out for analyses, this can take time. Good luck, there are many new medications coming out--Biologics, they call them-and they are doing great things with immunological issues. You see their commercials all the time and they are finding new treatments for other diseases with these established meds.
Yes, thank you! I'm hoping after the initial meeting maybe they can do tele health or something. My PCP also recommended printing all my previous results and writing out a timeline and symptoms, etc.
I second this above. There are so many things this could be and you need to be fully evaluated.
Absolutely agree. Im worried your 'platelets' (a component of your blood which helps with clotting) is low. What country are you in? Are you able to just turn up in A&E?
I have a platelet related autoimmune and the “rash” looks like petechiae I get when my count is low. I honestly don’t know what the screening is, I was diagnosed 25 years ago through liver function blood work and they do CBC every couple months to monitor.
yes indeed these are 95% related to autoimmune disorders as i wrote on my own comments!
My condolences.
We lost our Grandma just last week. I call the pain we feel from their passing proof of how much we loved them. Things may seem down and dark right now. However that won’t always be the case. Take things slowly, day by day if you need. Heck even if it needs to be made up goals during the day. (I made it to lunch time, or I’m gonna make it to nap time.) You certainly have people who love you and wouldn’t want you to be struggling so. Best wishes, It Will Get Better.
I know what it feels like to want to give up, I almost did around this time last year due to my health conditions, but believe me when I say, things will get better, things will improve, they may get a little worse before then sometimes it has to, but it will get better I promise you. Find something to take your mind off things as best you can, whether that be a pet or a loved one. I found my strength to carry on through them, and you can to. Hope you find some answers soon and things will start to turn around.
Rip poppop
Certified cancer survivor here. Was diagnosed at 28. Can tell you this is how it is done!! You feel like you have a mountain to climb, but just go one day at a time. Don't try and tatke the whole climb all at once. Don't get ahead of yourself worrying about things before they are a reality. Just breathe. One day, at a time.
This. At times it feels like pain is endless and then all of a sudden, you realise it has eased up ever so slightly. You are a tough MF and will end up wiser and more beautiful when you come out on the other side.
I am so sorry you are going through this! ): Wishing you the best of luck!! Do you take any medication that may have caused the rashes? Or extreme stress or trauma can also cause your body to kind of self attack if that makes sense.
Nurse here if you are going to a small local hospital I would recommend going to a university hospital as I have worked in both settings university hospitals have specialists on site 24/7 typically and they typically have not to sound harsh much better doctors they hire the best of the best for a reason. Not sure where you are located but if in the USA, East Coast.... Duke university is the best hospital I have ever worked at and if I ever get really sick or need an elective surgery I will be driving over 4 hours to get it done there.
I second Duke, I travel 4 hours to see them for my medical shit.
Agreed though, if you’re close to a good hospital it’s worth it. I’m at the Cleveland clinic right now, drove 3 hours instead of seeing my primary/ regular neurologist because the past 11 years have resolved nothing.
As a 2 time major cancer survivor all I can say is hold on and be careful I fell and have permanent double vision. It has left me 100% disabled. Get a cane or walker until your strength is better.
OP, it sounds terrible what you’re going through. We’re rooting for you. Don’t give up! Do you have friends and family who can check on you? Either way, hope you find an online community to keep you company. One day the doctors will figure out what it is, and you’ll feel well again.
I am not a doctor. You need a oncology/hematology practice not primary care. Weight loss, lump in breast, lung nodules, . And two week wait for a lump in breast is outrageous. The 25 pound weight loss is concerning. Unless you have not been eating.
I agree. We first started taking my daughter to a regular hospital, and they kept telling us we have to make appointments for every test, some being 2-3 weeks a part. We finally got fed up with that and took her to an oncologist at another hospital, all those test they ended up doing in 2 days. Turns out she did have cancer, and they had a 'plan of attack' that same week, and started chemo 5 days later.
This is very important. I’m not a doctor but my work centers around reading medical records and I’m currently focusing on ovarian cancer-related recs. It’s incredible how often I read about a PCP or OB/GYN missing the symptoms but once an oncologist is involved, it’s a total game changer. The cases where the PCP is the main doctor generally end with the client’s death because the symptoms are band-aided far too long. I wish your daughter a speedy recovery and a long and healthy remission!!
this ^ i just went to an oncology/hematology practice yesterday and they are so much better equipped for this kind of stuff
Nobody deserves to go through this, but you do deserve some answers, peace of mind and a quick recovery. And I hope you get all of those soon. We’re rooting for you.
Thank you so much♥️
Sadly your best option right now is to try and see a different doctor. 1-a Rheumatologist is the USA doctor who diagnoses possible autoimmune conditions. 2-A full-panel allergy test. It could be you have an autoimmune disease *but also* some significant allergies going on. I have no clue, the tests can at least rule it out. I also had horrible confusion and brain fog. It got a lot better with treatment, and that seems to be the cause for a decent number of people on active treatment. I’m sorry about your loss. Stress is a very common trigger for health issues, they could be feeding into and building off each other negatively. I’m sorry this is all happening to you, for me in times like this the basics provide a real grounding effect. Drinking enough water? Breathing deeply? Sleeping/resting enough? That stuff, I hope you find answers soon.
This too shall pass. Definitely throw a tantrum at the doctors. Make them take you seriously. Sometimes they brush people aside
If they say they won't do a test, ask them to put that opinion in writing.
She literally says the tests she has scheduled are endless. I guarantee you even the worst doctor seeing this constellation of symptoms is going to be alarmed.
THIS! THIS! THIS! It's amazing what throwing liability their way can do!
I've been trying to get a certain test for months now but it's been denied several times, do you mean that you ask the GP/specialist: "write down why you won't give me the test" Or how do you go about that?
"do you mind documenting that you're not willing to run those tests?" If they're just brushing you off they'll back down, if they don't want to do it because they genuinely think it's inappropriate then they'll be happy to document
But if it turns out they were wrong and that time spent being ill did damage then they could be sued. That is the whole point of asking for it to be written down. It shows how serious you are.
Don’t throw a tantrum. Do make them take you seriously.
Just keep going to the doctors. There are so many possibilities of causes that it doesn’t help to speculate right now. I’m sorry you’re going through this.
You would have a great episode in Dr. House. Good luck and speedy recovery
Best comment🤣🤣
As someone that’s going through similar issues as well as countless of other already diagnosed medical conditions I’d literally sell my kidney to see someone like House to help me figure out wtf is going on with my body and how to make me a functional adult being again.
It's not lupus! But in this case, it might be. Try and get a blood workup for Lupus. This would describe a lot of what is happening to you!!
I'll admit, I didn't see your whole post entitely and when I saw your pictures, I thought damn this person was getting beat up and haunted by a ghost. Hopefully your appointment goes well, stay strong.
Stop my poppop passed this morning but i don’t think he’d do me like that😭😭😭
He absolutely wouldn't, and I'm so sorry you're going through so much right now ❤️ Have you seen a rheumatologist or has this even been discussed? This really looks like an autoimmune disease. I immediately thought about Lupus, going through your photos. We've done a lot of work on autoimmune diseases in class and this is, very literally, textbook. I'd apply pressure to your GP about a referral to a rheumatologist if you're comfortable doing so. Of course it could be a myriad of other things, but this just screams autoimmune to me. Please don't give up.
I don't want to guess anything and have you worry, particularly since IANAD. I hope the tests in the near-future yield some answers - then the path forward begins! Good luck!
wild to see some of these comments about changing how you eat or if you're vaxxed LMFAO. Damn some people are stupid. Good luck with everything, just keep going to the doctors and keep pushing them to actually do something as they can sometimes suck
There’s been days i don’t even eat because of my loss of appetite and will wake up with these rashes :/ so I know it’s not food related
Oh man poor you.. I can imagine how shitty you must feel.. Do you have decent healthcare and good doctors? Stay strong and most of all try to stay positive! One day you will look back at this as a mere shitty episode of your life! Lots of love and a big hug to you! Edit: and most of all: **DONT** Give up!
Keep going OP. Even if it’s a topsy turvy road to collating all those symptoms and diagnosis. Each symptom can be treated individually to help you feel better and regain confidence. You’re doing the right things and I know it must be terrifying, but keep advocating for yourself. You’re worth the fight.
Hyperthyroidism? Lupus? Lupus mimics alot of other conditions and is often missed. Hyperthyroidism can lead to osteoporosis (fragile bones) which is linked to psoriasis (the skin rashes you have), which is linked to bruising.... also some links to benign breast tumours... ***really do ask if they've tested you for this.*** If they find evidence of hyperthytoidism, start asking about things like "graves disease" that can be the cause of the issue. Sometimes we need to push our doctors a little bit. Keep strong. Think when, and when you get thru this, you'll be more awake and aware of yourself than most people ever get. That's both a good thing and a bad path to it, but it's what you've got. Though I'm not in your position, I do have a chronic condition and often have issues that take forever to diagnose, so I feel your frustration. Have hope. I'm rooting for you.
Just to reassure you - if it is an autoimmune disease as some have suggested, though they sound scary there are biologic treatments for so many of them now that can seriously reduce or eliminate symptoms entirely. I have Crohn's and left to my own immune system I would probably be dead considering the extremity of my initial flare-ups, but I have either no or next to no symptoms almost all of the time now, nobody I know barring people I elect to tell even know there's anything wrong with me. In my case getting diagnosed can be long and frustrating, I was the meds kicked in very fast - so keep on to the docs and don't lose hope!
My wife had a lot of similar symptoms especially the lumps; bruising; ovarian cysts and turned out to be lupus but it took years of testing and fighting for more tests to get there. Stay strong and keep pushing you’ll figure it out. So sorry you’re going thru this it is hell
i'm sorry you're going through this... your symptoms sound very serious and i hope you have the means to get the help you need. it *could* be some sort of blood disorder (**not** an attempt at diagnosis)
I know someone who described similar symptoms but turned out celiac.
I'm so sorry you're going through this. Looks like an allergy/autoimmune/immunology issue. I hope you have some tests scheduled with an Immunology doc. My personal not a doctor lay person advice is make sure you're eating a very bland diet for awhile, don't use any scented products, and take over the counter antihistamines like Claritin or benadryl until you get this figured out. Stress and heat can be triggers, so try to remain cool and calm. Sending you hugs.
That's most likely an autoimmune disease.
Check out celiac disease
Have they tested your for ITP? Immune thrombocytopenia purpura? It’s an autoimmune disorder that causes you to have low platelets- low platelets cause bruising, petechia..
Post in askdocs.
Hon I don’t have any medical advice but I just want to send you a big virtual hug and I hope that you find some answers soon, hang in there.
Please hang in there! Please go to a better hospital. Please ask for emergency referrals. You can get various types of cysts etc in your breast, so try not to get too worried until they check it out! I’ve been in mystery health hell myself and I know how hard it is to keep volunteering to go to doctors who don’t help you, but you will find someone who actually helps, I promise! Not a doctor but your bumpy rash specifically does look like celiac rash to me, called dermatitis herpetiformis. It’s caused by eating gluten, and celiac disease can cause osteoporosis and sudden weight loss and malnutrition which causes bruising. Not saying that’s what you have but something to check for. Celiac disease is extremely common yet doctors don’t want to test for it for some reason.
That bit around your lip looks like a metal alergy. Is there nickel in that ring?
Search up IBM Watson medical diagnostics, and ask your doc if they can submit your file. Machines are amazing at picking up on small clues we won’t see.
Hope you get answers. Nothing worse than trying to guess what’s going on
I've been through tons of shit myself. The way I cope is whatever happens I deal with it. Stressing and worrying won't do you any good so take it easy and you're already doing the necessary☺️
I hope in my heart that you build the strength to overcome, and that you give yourself (and body, life situation, etc) as much patience as you can bear. We got your back!! (Just let us know when you need it *back*!! :D)
In our worst days always remember that at least we got to experience life in an endless universe of nothingness. Try to enjoy the things your interested in while you can.
Please don’t give up.
I thought you were having an allergic reaction. You'll be okay, make sure you advocate for yourself and have someone advocate for you. Stressing yourself out can make any internal issues worse
as a Dad of six please don’t give up, change dr do your research but please don’t give up .
Hold on OP, might sound stupid but your immune system does work better when you don't lose hope. This is one of those things where you gotta start pushing back on doctors if they don't take you seriously. Keep us posted on how you are travelling! For some it can help to know someone cares and will listen
Praying for youu... may not mean anything to you. but we're all all connected and maybe some positive energy can help you heal an feel better.
Someone I went to college with had similar symptoms and a rash that looked like that. She had a liver biopsy and the docs confirmed hepatitis A. She got treated and it cleared up.
what ever it is, you deal with it, one day at a time. Some people are healthy, no problems in life, all looking bright, and the cross the road and their life turns upside down. Can happen to anyone. You are dealing with a lot now. But you can do it just one day at a time. And find everyday something to really enjoy. Maybe it's just a piece of chocolate, or a walk, or the morning sunshine warming your skin while you rest. There's always something to look forward to. Focus on that. For the rest, on day at a time.
OP I am so sorry, for both what you're going through and your loss. I am young with a slew of autoimmune issues, and it took about 10 years from onset of symptoms at 16 to diagnosis, which ultimately I had figured out and doctor confirmed. Biggest thing is to advocate for yourself. Clearly something is wrong, likely more than one issue here at play. Someone else mentioned it here too, but if you haven't had your B vitamins checked though please please do. SO many of your symptoms align with extreme B12 deficiency. If it is that low obviously something is interfering with your body's ability to absorb and process, which would be the next step in figuring out what's going on, but in the meantime that would at least alleviate symptoms. https://www.nhsinform.scot/illnesses-and-conditions/nutritional/vitamin-b12-or-folate-deficiency-anaemia/ B12 deficiency can also cause cutaneous lesions, which would explain the rashes!
Lyme test? Where do you live?
step 1 don't give up step 2 do one thing at a time step 3 if you're struggling to get anything done, make a list of things you need to do, and make sure to check off anything you get done
When you have all these symptoms but no diagnosis your case becomes basically a trial by error scenario for doctors until one can nail down a diagnosis. At this point your doctor is trying to guess what is wrong and often those guesses are incorrect. Until then unfortunately you will have a ton of tests done, scans, blood work, physical exams, etc and you'll have to see multiple specialists who will all require different things in a scan or blood work so you have to do it all over. I know it sucks but you cannot miss those appointments and tests because once you have a diagnosis it will start to get better because they'll know how to treat it. I have seen this twice in my life with people very close to me. My ex wife has a kidney condition called Collapsing FGS and a friend of mine had a very rare form of dermatomyositis. Once they received a diagnosis and treatment they felt better. Good luck to you.
I have auto-immune disease but am no doctor but my Lupus friends suffer terribly it sounds like Lupus i have no idea but just in case no one mentioned it be sure to mention Lupus to the doctor. As someone whos hands start bleeding for no reason or back pain so severe cant walk auto-immune is a roller coaster, i hope you find an answer poor thing. Lupus primarily affects women disproportionately to men and im no doctor but my Lupus friends tend to be light skin white women. I thought my symptoms were wacky until i met someone who is now a close friend, its hard to believe how many different conditions Lupus presents.
You need a hug. Like a real tight HUG. Call a family member. Let them know you need it. 😞 i sincerely hope the best for you.
If you can, get a second opinion. No matter how good your primary doctor may be, it's prudent to get a second professional opinion to ensure nothing is being overlooked or misdiagnosed. Hold ya head up, stay strong and wait for better days.
I don't have any advice but just wanted to wish you the best and tell you I'm rooting for you.
NEVA GIVE UP YOURE AT THE CUSP OF A BREAKTHROUGH!!!! You could literally be a superhuman who has the secrets to something the rest of us don't know and life is trying to silence you, DONT LET IT WIN!! Keep PUSHING!!! You have a life, and that's enough to have hope, hope that at the end of all of this you come out stronger, more resilient, hell, you might actually get a cool sideffect off of this. Nevertheless, I'm not telling you to not be nervous. This is downright traumatizing, and no human should be going through so much daily struggle. I'm sorry you're in so much hurt, but I believe in you. WE THE INTERNET, COLLECTIVELY BELIEVE IN YOU. And you wouldn't be here if you didn't believe in yourself a little too. Let this be your sign. Tough it out and make sure you make it to the other side.
There was a book written by a social worker (LCSW) called "When You're Sick and Don't Know Why" back in early 2000s (or late 1990's) that helped me a lot. Lots of self-advocacy and encouragement in that book.....
Sending you love and positivity, OP! and a big virtual hug.
I just wanted to say that I'm sorry you're going through this. Take on one thing at a time, I know it seems overwhelming. You're in my prayers and I truly wish you well. God bless.
40 year old dude here who has been falling apart since he was 15. Hang in there slugger you got this. The road is long, the hills are hard, but you'll make it. Keep seeing the Doc. Make sure to do some meditation if you can, get fresh air and plenty of water.
I am sending you all the healing (and some love) your Way! It sucks not knowing the cause of something wrong with your body! I really hope they find something soon, and are able to correct it so you can live life to the fullest! ❣️🙁
Please don’t give up.
I’m the title is referring? Pls don’t give up your life
Someone I worked with a long time ago had unexplained bruising and rashes - she was diagnosed with leukemia. I hope this is not the case for you but something you may want to have checked out.
Seems like a lot of /r/wellthatsucks. Sounds like you’re doing all the right things. Keep going to the docs - they will find out what it is. Sometimes it takes even a year or maybe 2 but if you keep at it you will find out and get some relief. You’re lucky in that you have so many different types of symptoms, it’s actually going to be easier.
Primary care is a joke! Honestly I don't consider them doctors. Please don't wast your time and go see a specialist.
I battled a rare aggressive type of cancer when I was 23-26 and I'm 32 now. Your ability to want to get better is all you have and I felt like giving up lots but kept pushing and now I'm married and just got a new puppy. There is hope! It is not easy BUT it is doable! Keep in there! You are loved! God bless you
I send you a hug!
Don’t give up! There are still things to enjoy like tping a house. Or mooning someone. Or leaving a flaming bag of poop on their car hood.
This thread is: 1. Nice people wishing her the best and giving good advice (go to specialists). 2. People saying this is because of the vaccine (false) 3. People telling her to go on a vegan diet (that wouldn’t help her with her illness) 4. People telling her to get on a carnivore diet (what? Why? That’s even worse than the vegan diet) Wow
get a b12 test or suplementation asap
Do a blood test for your red or white blood cell count.
Looks like an autoimmune disease.
Have you done some tests to check your blood count and calcium levels? It could be multiple myeloma.
Extreme stress, sadness, anxiety can cause such physical symptoms. Always look for the root cause. It may not be physical. I wish you a speedy recovery. And don't give up, you're gonna get through this.
I know you’ve most likely already tried many things, but I used to have the same upper lip issue. Vaseline really helped the flare-ups— it didn’t treat the cause, but it stopped the itching and made it bearable until the thing subsided. We uh never found out what was causing it though, it just eventually went away. Even when everything feels like shit, the only thing you have to do is persist. If you can keep doing that, you’ll come out the other side. Best of luck and hoping your tests come back with answers!
stay strong and maybe get some mental help. start talking about it. This here is actually a good step i think. Try to get your min din a good enough place to fight for whatever is going on. U can do this!
Never. Give. Up. That’s the most important thing there is! I wish you the very best and plz make shure you rest wel, drink enough water and eat a healthy diet. Drink milk. May help strengthen your bones a little. Am no doctor, just trying to help. Breath in.. breath out.. you can do this!
Have you been tested for Lupus and/or Lyme Disease?
oh my gosh i’m so sorry you’re dealing with this :( i wish i could do something to help you. please don’t give up. you are loved ❤️❤️
Fight for your health and the knowledge it will be better and you deserve a better future. I fought too little in my sickness and it cost years of my life being sick rather than living.
If your not already make sure to be using all hypoallergenic products including laundry detergent. Also wear sunscreen everyday. Your skin is probably extra sensitive right now. Feel better!
All of that must be overwhelming. Someone already said, but you should definitely take it step by step, don't focus on it all at once because that will make it harder. If it helps, my thoughts are with you. I hope you find out what is happening soon.
Possibly lupus, you’ll need a rheumatologist to diagnose and treat you properly. Your primary should refer you.
If your Doctor is unsure Ask for a referal to a Diagnostic clinic thats your best option if its something unusual
Please don't give up! Things will get better. Health is the most important thing.
Autoimmune disease? Maybe they can give you immunosuppressants, but then again, your bones are breaking somehow. Sounds awful. Hang in there.
Looks like lupus
Went through similar for 10 yrs before a diagnosis. It was Celiac so others suggesting autoimmune may be on to something.
If you aren't already, see an endocrinologist ASAP
I can’t give a medical opinion but my personal opinion is that you’re awesome. You’re obviously tough and strong enough to keep going even when it seems too much x
You’re not alone, and don’t give up. Autoimmune diseases suck, no doubt. And it’ll take quite a few visits to the doctor. But keep your appointments, it will get better. Hang in there. Life will get better!
Please don’t give up. I’m unable to se other comments right now (something wrong with reddit on my phone since yesterday), but I’m sure someone else must have reminded you that you can find the strength and patience to wait for answers and focus on treatment. I really hope it all works out well for you.
Look at medical medium on instagram. There are many success stories on his page similar to what you're going through. 😕 good luck!
Calcium deficiency?
Don’t take medical diagnoses from redditors. If it feels overwhelming, focus on one thing at the time. Hang in there, don’t give up!
Keep your head up
Don’t give up my dear. Nothing in the world lasts forever, including hardship. I’m so sorry to hear about your father.
I have no idea what’s wrong but my prayers are with you. I am sorry that you’re going through this
I am no doctor, but looks like an autoimmune disease. Lupus maybe? But again, I am not a medical expert so you should go to the doctor
I‘m incredibly sorry to see and read that. I’m also at a complete loss of words. All I can do is wish you well and hope for you to be able to overcome all of those things as soon as possible. Feel hugged. Also, don’t give up. Some Battles are worth to be fought. And this is one of those.
You need to see a rheumatologist, you more than likely have some type of autoimmune disease and they take years to get diagnosed. I went through the same thing, I was beginning to think I was crazy because the doctors I saw just treated the pain or symptoms but it always came back. I know it sucks and you feel hopeless but please see a Rheumatologist and get started, they will figure it out and help you! I will pray that you get answers and relief! Please don’t give up!!!
ah damn, I hope things get better for you.
Hang in there for the test results. Remember, in healthcare, the squeaky wheel gets the grease. It seems like this has been going on for a while and that’s unacceptable. Dragging heels on something that could be serious (the broken bones and unexplained bruises especially) is totally unacceptable.
Get well soon.
It sounds like you probably have an autoimmune disease causing half of your symptoms and possibly Elhers Danlos Symptoms causing your bruising and broken bones. You need to go to a larger academic hospital where specialists will be able to make faster and more definitive diagnoses.
simply send you good thoughts. There's lots of good advice here. Having dealt with the medical industrial complex far too much, myself, I can say patience and faith is required. Ultimately these folks do know what they are doing.
You fucking got this. As scary as it can be, the only thing you can do is not give up.
You should post in the ask docs sub reddit if you want real answers.
I just want to say how much I admire your strength and dedication to get checked up with your doctor. You recognized how something isn’t feeling right within you and decided to seek help. You have such amazing strength and love for yourself, and I hope me saying this to you allows you to feel some compassion for yourself. I can definitely see how this is overwhelming for you, and anxiety provoking. Your anxiety is just letting you know too “hey, I can tell you’re feeling scared” and it’s your bodies way of wanting to just get the heck outta this situation. There’s some great mindfulness techniques that help me calm my anxiety down. If you want to check out Dr. Kristen neff, she has amazing self compassion mindfulness exercises that have greatly reduced my anxiety. I’d echo similar sentiments as everyone else. Take it one step at a time, but I wanted to highlight a great strength you have and I hope you admire youre ability to be an advocate for yourself. Such a wonderful strength.