Just looking for support after my doctors appointment today. I’ve had chronic pain issues since I was in my teens. I specifically remember experiencing the pain for the first time and the doctor telling me it was just stress that I carried in my upper back muscles. I was a teen so I took that as the answer. Then in my early twenties, I went back to the doctor to get on antidepressants, because I’m sure most of you understand that. At that appointment, I mentioned my pain being present for years now and especially bad in my knees and upper back. The doctor told me to take ibuprofen and sit more. That was frustrating because I told him ibuprofen didn’t work. Another appointment in my mid twenties where I again mentioned the pain and was again told to take OTC meds. I haven’t been to the doctor in 8 years for the fear of being ignored again. I finally sucked it up and went today due to the pain affecting my day to day life and being almost unbearable now. The doctor basically told me the pain was due to mental health because I have no familial history of chronic issues or autoimmune (I do have familial history of autoimmune). Anyway, she pressed on my abdomen and neck and asked if it hurt. Of course it didn’t because the pain is in my joints and leg/back muscles🙄. She ordered bloodwork but all of my “inflammatory levels” are normal. I’m extremely frustrated because I feel like I wasted more time and even money. If I can convince her to give me a referral, would a rheumatologist listen even if my bloodwork is normal? I just need answers or help because I’m in so much pain.

Hello,

I am trying to gathering information for my wife regarding JAK1 gene mutations and autoimmune conditions. If anyone on this sub has a JAK1 mutation, or resources / information regarding an autoimmune condition that is related, any help would be greatly appreciated.

She has been through quite a terrible few years, and after complex autoimmune and gene testing, done in our home state AND at Mayo Clinic Rochester - her specialists have determined that she has a Gain-of-Function JAK1 gene mutation that is causing her eosinophils to over produce, move to strange places in her body, then release their "attack" chemicals. Her body is in a constant state of attempting to contain these chemicals, and builds scar tissue around them. This tissue is literally everywhere in her body "in-between" systems. So in her pleural cavity, facia surrounding her organs etc. because the tissue is fibrous, it cannot be easily seen on modern day imaging(CT, PET etc.).

Her specialists are a bit stumped at this point. While they have identified her mutation, they have not been able to correlate it to a specific autoimmune condition.

I am seeking any information that you may have regarding a JAK1 mutation, or if you have been on a similar journey, do you have any resources that have helped you with a complicated diagnosis such as this? Hoping to avoid a future life threatening surgery due to this tissue growth, as she has been through enough of those already.

Thank you so much in advance!

they didn't accept my referral for knee place said gp has to do something more why is that plse

Hi Everyone,

I'm a student at QUT currently working on a project that aims to create a product that could support doctors and patients with getting Autoimmune diseases diagnosed.

To support this project, I'm looking to gain the clinical perspective (from medical professionals) to get a better understanding of the challenges that need to be overcome, and existing diagnosis processes.

If you have a second and have experience diagnosing autoimmune disease, I would highly appreciate your time if you could complete the attached survey.

The survey questions cover:

• Your experience with diagnosing autoimmune disease
• Challenges you encounter when diagnosing patients
• What patients can do to support their diagnosis journey

It's completely anonymous and should take <10 minutes to complete

Thanks in advance for your time!

https://docs.google.com/forms/d/e/1FAIpQLSfwUZ9x4LsU90PRyluokLobdrwtpQelsvvzOvmwo-ZG9KLrGA/viewform?usp=header

so, i got diagnosed with seronegative rheumatoid arthritis a month or so ago, based off symptoms like bilateral joint swelling in the hands, feet and sometimes knees, worse in the mornings, etc. but lately i’ve been experiencing something different. i’m having episodes of rapid, sudden redness, heat and pain come on in my feet, hands, knees, shoulders and even my ear! and it’s usually just one side, not both. but sometimes it is both 🤷🏻‍♀️ it feels so hot, like i’m burning. and the pain is more my entire bones, not just my joints. they also last anywhere from as little as 30 minutes to the longest being about 6 hours. not like my original symptoms that would last days to weeks. my doctor was kind of dismissive when i messaged her about it, saying i need to give the hydroxychloroquine more time to work. but it just doesn’t fit what i know about ra. i have a theory, but id like to hear if anyone else experiences this at all?

Imagine an older eye doc not using an SD-OCT scanner or autofluorescence. Apparently, many just insist on a regular fundus exam, or looking at a grid or in a VR headset to find out the hard way that part of your peripheral vision is permanently gone, and you might end up sucking at your favorite video games, unable to read a circuit schematic without a "phasing" effect from the blind spots, etc. And who knows if you might also lose the ability to read fine print. If SD-OCT can catch eye damage early before it affects your actual vision, why isn't that the norm? Plus you can find out the volume of your retinas!

Not to mention that it scares me that you will probably never see color the same way again, and that some advice out there seems to suggest turning up font sizes or adjusting lights.

And my biggest fear: a lot of studies point to light-related damage being a factor, as well as the fact that the medication impairs the lysosomes, which are necessary to clear the recycled pigments that can build up. Now I worry that afterimages or photobleaching will be the culprit, and people will be asked to give up driving at night, live music, or even video games with a lot of color changes. Even checkerboard floors push the poor cones into a see saw of light and dark, forcing them to work overtime to clear these chemicals.

It's sad to see so many young artists, biologists, pilots, hobbyists and professionals of all stripes on these meds, potentially at 1:5 risk of blindness by 40 or 50, perhaps forced to quit what they love because they can no longer do it. Or never seeing their favorite color again. I'm bothered by my regular blind spots!

I’ve been having terrible fatigue, joint and muscle pain, soreness off and on for the previous year, recent months have become very bad. I’m seeing a Rheumatologist in a few weeks. Is the redness in my face the appearance of a typical Lupus rash? Thoughts are much appreciated

Disclosures: The presence of any Paraneoplastic condition or related malignant condition at this point is not at all diagnosed and may well be far-fetched. That being said, I was hoping to explore a strange symptom.

Around 9 months ago, I had a sudden bony bump in my right wrist at the base of my thumb accompanied by varying degrees of pain, particularly with extending the thumb up. After an x ray looked clear and a brace prescribed by the orthopedic specialist to manage a suspected DeQuervains Tendonitis didn’t reduce the bump, the orthopedic specialist sent me for an MRI a couple of months ago. The MRI showed synovial / joint fluid all over that right arm, though no specific damage to the bone, cyst, tumor or any other internally visible reason for what you can clearly see and feel from the outside is a bony, hard bump on my wrist.

Following this, I was given a 8- or 9-panel screen for rheumatoid arthritis, from which the only item that came back was a positive RF. Notably, anti-CCP (which I understand correlates strongly with RA) came back normal/negative. I was then diagnosed by the orthopedic specialist as having RA, and have now had my first intake appt with a rheumatologist.

This particular rheumatologist recommends a pretty strict keto/paleo diet to manage inflammation before trying any medicinal treatments. Honestly, respect.

**However,** before I embark on that journey which will be annoying from a dietary standpoint, based on the oncology community’s experience, is it worth first just asking if my PCP is willing to order a blood panel for Anti-Hu, Yo, Ri, and CV2 to “rule out” paraneoplastic arthritis presenting in that wrist due to some kind of underlying malignant issue? (It is my understanding that those markers can help pin this down). From what I’ve read, though Paraneoplastic syndromes are very rare, they can tend to be more closely correlated with positive Rf and negative anti-CCP blood work, localized flare ups, and arthritic symptoms without bone damage than RA may be which are all things I’m experiencing.

For a little extra perspective, I’m a middle aged former smoker (of about 5 years, from starting about 21 years ago to quitting about 16 years ago). Not currently experiencing weight loss, night sweats etc. I do have celiac so I may have a certain propensity toward autoimmune conditions. The bump on the wrist stubbornly persists. No specialist along the way - ortho or rheumatologist - has suggested they suspect synovial sarcoma or any kind of cancerous condition specifically in the wrist causing the bump.

I guess I don’t know why I wouldn’t ask for this, and don’t know why the PCP might turn it down, other than maybe insurance limitations (I’m in the US) or because those panels are rare or something. Just hoping to rule out a major issue and make sure I really have to drastically cut sugar down / prepare for a long-term autoimmune issue when there could be something else going on. Any insights here would be welcome.

Thank you.

Hi! I have pernicious anemia (+blood test in 2022) that was lost in the shuffle between providers. My PCP just prescribed B12 injections and gave a referral to a Rheumatologist. I’m assuming they’ll want a full blood work, possibly a referral for an endoscopy to check for autoimmune gastritis. I’m planning on doing my first injection tomorrow morning and my first appointment with the Rheumatologist isn’t until end of September.

Me question is: Should I wait to do the injection? Will that interfere with being able to diagnose anything? I don’t want to wait because PA is not fun. I also don’t want to mask anything that needs to be found.

Thank you in advance!

hi, I have Grave's disease. I went to get other autoimmune biomarkers tested. My ANA is positive 1:160. Dense Fine Speckled pattern is noted. This pattern suggests the presence of DFS70 antibody which has a low prevalence in systemic autoimmune rheumatic diseases. ICAP nomenclature: AC-2,4,5,29.

RF is normal. Anti-CCP Ab, IgG/IgA is normal. Do I need additional tests? I am very worried.

Hi all!

26f 150 lbs 5’6.

Complex case but working diagnosis is Relapsing Polychondritis and will be seeing Cleveland Clinic soon for full eval. Systemic symptoms for 2 years of severe progressive sensorineural hearing loss, inner ear pain and pressure, mastoid pain and pressure, out ear burning and itching with redness sometimes distinct line sparing lobe sometimes not, headaches, migraines, low grade fevers, idiopathic chronic urticaria, new onset rosacea and eczema, non erosive polyarthralgia, severe burning of hands with no visible symptoms, trigeminal neuralgia, episodic peripheral neuropathy, possible nasal chrondritis, severe episode of chest pain told likely costochondritis.

That’s the background but…

Specifically interested in opinions on possible cause of recent hospitalization. Had gradual onset of several days of epigastric tightness and perhaps gut dysmotility but no changes in bowel habits. Then awoke with 103 fever, severe nausea and 150 heart rate though the day. That evening I had sudden onset of severe uncontrollable rigor spasms followed by repeated vomiting. Sepsis was suspected originally.

All blood work and imaging at hospital came back completely normal, including head CT, head MRI (except trace mastoid effusion), abd xray, abd CT, spinal mri (did not tiny pulmonary nodule which was gone with follow up static chest ct, cardiac echo and lumbar puncture.

I got 2 DVTs and 2 SVT clots while there. Assumed provoked due to midline and regular IV (on of each type of clot in each arm). I also got severely symptomatic intracranial hypotension from the lumbar puncture.

Additionally mid-stay I had these rashes show up overnight on my legs. Non itchy completely asymptomatic. Stayed for maybe two days then left. But they left bruises behind. I still have a faint bruise from the large one over a month later. I did receive various medications while there including antibiotics so it’s possible it could be drug related, but the remaining bruising was odd.

They finally gave me a steroid injection when nothing would help the positional headaches from the intracranial hypotension and that ended up helping significantly with everything- night and day difference.

Two weeks after discharge I had gradual onset of mild chest tightness bilaterally then suddenly awoke with severe crushing chest pain. When I tried to stand upright it felt like someone dropped sandbags on both sides of my chest. Mild tenderness on palpation but not severely painful, but debilitating if I tried to stand upright and still hurt lying down. Resolved immediately with upping my prednisone. Doc said probably costochondritis but I was thrown off by lack of sharp pinpoint pain.

The hospital team, my rheumatologist and neurologist all have no idea the cause of my symptoms. Best guess is a virus they didn’t happen to test for but they literally sent out testing for dozens and dozens of viruses.

Any thoughts would be helpful!! It was quite scary and I’m anxious having no clue if it could happen again. Thanks! Pics of rashes in hospital, samples of ears, and episode of suspected nasal chondritis and previous facial rash/rosacea all added.

Hey all,

Here is another follow along video I have done in the AxSpa/PsA (Ankylosing Spondylitis) series.

A lot of patients don't know where to start with early morning stiffness and what spinal mobility to complete.

I hope this helps someone today

Any questions please feel free to ask!

I (20F) was diagnosed with Hashimoto's about 2 years ago, and that was the start (not even, it started far before) of my autoimmune journey. I always had autoimmune symptoms but did not find out about autoimmunity until I was diagnosed with Hashimoto's. It took until four months ago for me to find out I had an extremely high positive ANA and be referred to a rheumatologist. It took until 2 weeks ago to be seen by this rheumatologist, and he did not listen to anything I said and ended up insinuating that I was a liar.

My first visit(2wks ago) he poked me everywhere to test for pain, twisted my joints which very much hurt, ordered more bloodwork, and injected me with my first ever intramuscular steroid injection for autoimmune activity. I had hope, finally, that someone was on my side and actually going to help me find out why I am in so much pain and do something about it.

However, my second visit (1 wk ago) didn't go great. The steroid injection he gave me made me feel a bit better for one day but then I entered a pretty bad flare the following days after and am still recovering from it. I had also written up a document for him containing all of my symptoms and examples of how they affect me. I asked if I could email it to him via the patient portal for his office and he said yes so I did. I was with him for maybe 5-10 minutes, if that, during this visit. He ended up not saying ANYTHING, genuinely anything about a potential diagnosis or asking me further about symptoms, and just saying he will try me on Plaquenil by next week (this week) and see how I respond. That's it. No further information or questions, no further testing or imaging, nothing.

My bloodwork all came back normal except for ANA 1:640 with homogenous and speckled pattern. When my PCP originally ordered autoimmune bloodwork for me originally, I was also strongly positive for centromere antibodies but have since tested negative. My WBC is typically elevated and still is.

Even up to this point I still have had zero tests done for anything more than bloodwork and an US of my thyroid 2 years ago. No cardiology, pulmonary, colonoscopy, endoscopy, neurology, imaging, xrays or scans, ENT, dermatology, even a biopsy for my mouth ulcers. Nothing.

I left my second appointment scared, confused, and alone. So I turned to Reddit.

I made a large post about my symptoms and was immediately comforted by my community of fellow chronically ill people and made to feel that I'm not crazy, and possibilities of what it could be. But one response stood out to me in particular. It explained a lot of reasons for why my symptoms are so severe, why I seemed to have mild autoimmune activity one year ago and suddenly got sicker so quickly and suddenly had raging autoimmune activity, and why I have so many symptoms that wouldn't necessarily be explained by an autoimmune condition ON TOP of the autoimmune symptoms and activity that I did/do have... that I now believe was heavily exacerbated by this thing........

MOLD. I WAS EXPOSED TO MOLD FOR 10 MONTHS STRAIGHT; LIVING IN IT, BREATHING IN IT, SLEEPING IN IT EVERY DAY AND NIGHT IN A TINY WARM HUMID SPACE.

Not only did I NOT know that I had a mold problem (it can grow inside of walls and even be invisible to us and I thought I eradicated the mold that was there), that I was breathing tons of it in for 10 months straight, but I had NO IDEA that mold can be incredibly toxic to the body. I mean it is fungus after all!!! Especially if you are sensitive to toxins (such as by having autoimmune problems) or ingest a large amount of it (such as by letting it live with you for 10 months rent free). Suddenly the symptoms I had made sense and even symptoms I didn't know were symptoms/weren't normal and suddenly all the months of confusion and pain made sense!!! I was a sensitive individual with underlying autoimmune activity who was exposed to a large amount of environmental toxins that caused not only symptoms of toxicity but exacerbated my underlying autoimmune activity and autoimmune symptoms as well.

I email my rheumatologist with my new information. I type up a long message about how I think my autoimmune symptoms are being exacerbated by mold toxicity. His response was that he doesn't "do mold" and that I would need to see a naturopath. I have never not once in my life heard of needing to go to a naturopath for a fungal infection or for toxic poisoning. Had I told him I was exposed to high amounts of lead, pesticides, carbon monoxide, would his response have been different? What is the freaking cover up of mold and the effects of mold exposure?! r/ToxicMoldExposure literally has 18k visitors and 900 contributions per week and I have NEVER heard of mold poisoning.

My rheumatologist follows up his message by saying the only way to know if it was mold exposure is if I left the environment and get better. But I did!!! I just didn't realize or connect it because I was leaving a very stressful home situation as well as leaving the mold that I did not know about. But then as I started connecting dots and realizing I likely started feeling a little better also because of no longer being exposed to mold, but even my cats symptoms improved dramatically as well.

I got my cat when he was a kitten, he was a rescue. He quickly showed respiratory and GI symptoms, which I thought were just genetic since he was a rescue. YES I DID TAKE HIM TO THE VET SEEING THESE SYMPTOMS AND THEY SAID HE WAS OKAY, WHICH HE IS. However, within the month of us leaving the environment, his respiratory symptoms almost entirely cleared up. Which is further evidence for us having been exposed to toxic mold and developing these symptoms because of it.

I started going on deep dives about mold exposure and mold infestations. I came to realize that almost all of the people who have had such similar experience, had to throw away their clothes entirely. Not even that but almost everything they own. Because mold spores and mycotoxins sink into porous items and stay there. I thought, no way, my clothes are fine because I've literally been wearing them and it's been okay. The clothes that were literally soaking in that hot humid room a few feet away from the active mold infestation, the one right next to the mattress I slept on every night for 10 months.

I went through my clothes piece by piece, smelling each one. I came to realize that every single article of clothing I owned was entirely soaked through and baked in with mold spores.

Nothing else had this musty sour mold smell except for the clothes that were in my old living space for months. Nothing else I wear, even things I wear often, the clothes of others, the pillow and blankets I've been sleeping with that have never been in that space, nothing nothing nothing else has the smell except for the clothes and those are the only porous items I still have from my old living space. You know what does have the smell, though, I noticed? Every single wet area that I walk by outside. I can walk by an area and freaking smell the mold from feet away, I'll smell it without even seeing a wet area and be able to smell it and turn my head exactly to where it is and there will be wetness or water and it will have the exact same smell as on those clothes (now discarded, yes, every single item of clothing I own...) Also, after smelling through all of my clothes for mold, I blew my nose to some black fuzzy mucus/snot and have had it again recently which is now a few days after smelling the mold clothes. Could have been fabric fibers....? Or a fungal infection getting aggravated from sniffing more fungus.

I realized that the past month and a half that I've been out of the stressful living situation + mold exposure, I hadn't been able to even start getting better because I was still wearing clothes with a ton of mold spores which are now a severe allergen to my body. The night that I threw away all the clothes and anything else that could potentially have spores is the first night that I slept well in months.

After telling my rheumatologist about all of this via email in the patient portal for his office, he basically said my email was too many words and that we needed to discuss it in person. So I waited over the weekend and was able to get in to see him today. THIS IS WHERE IT GETS BAD. No I'm serious, that all wasn't even the bad part.

The first thing that the rheumatologist says to me for this third appointment was once again that he doesn't "do mold" and went on to talk about it as if it was a myth or psudoscience. I told him that I understand he cannot treat me for the mold exposure, but that DOES NOT change the underlying factor of me having severe and high positive autoimmune activity and very severe autoimmune symptoms that are greatly interfering with my everyday life. We go back and forth for a while and he is running the conversation in circles.

He eventually tells me and writes down on my chart that he believes I have "mild lupus activity". Mild? Mild???? Mild???? Do I have hearing loss? So I question him, "would you consider my symptoms mild?"

"Ehh *shrugs a bit* yes, mild to moderate."

"Okay, can you please write down on my chart that you are saying I have mild symptoms despite me telling you that does not match my internal experience? I believe that my symptoms qualify as severe." I also told him that I don't believe he is looking into my symptoms enough or doing enough testing or imaging. I told him that it's very important for me to build a medical case file for myself so that I can apply for disability. He told me disability takes 2-3 years anyways so it doesn't matter (NOT ALWAYS TRUE ESPECIALLY IF YOU APPLY WITH ALL NECESSARY PAPERWORK READY).

He looked me in the eye and told me that he is positive that further testing or imaging done will only hurt my case because he is absolutely positive that it will all come back normal (including any GI exams, joint imaging, literally everything). He then told me that as a rheumatologist, he cannot order me anything more than bloodwork or refer me to any specialist either and that I have to personally talk to my PCP if "I" want to get further tests or imaging done and specify the tests and imaging I want as well, as if I went to medical school and am the doctor here! I cannot stress enough right now that I have had zero further testing or imaging done aside from bloodwork and simple quick breathing tests via a stethoscope. He said that because my labs are normal, and that my lungs sound clear using the stethoscope, that there is absolutely no possible way that my tests or imaging would come back anything but normal. He said he is 100% sure that I do not have any organ involvement or joint/muscle or tissue damage and that I do not have any of the "scary" (his words) autoimmune diseases. He said that because I didn't test positive for any antibodies other than high ANA that there isn't anyway I could possibly have another disease other than lupus or UCTD. I told him that I was worried about starting Plaquenil because I've had worsening vision changes since getting sick, and because I'm worried of having a systemic infection (fungus/mold!!) and even mildly suppressing the immunity my body could need to fight that off and believe it could be a contraindication. He made a big deal about the vision changes not mattering much and that "it would only cause problems after 10 years" (his words).

And so I'm like alright, do you have a diagnosis, anything? He said it WILL be lupus or UCTD. He said if I respond well to the Plaquenil then it has to be one of those two. Mild to moderate. He won't even give me a diagnosis until I respond to the medication! So I asked him, what exactly is the diagnostic criteria for the other autoimmune diseases that you're saying it couldn't possibly be?? His words, is that you "need a good story" and an exam done. I'm like okay what???? And he explained that I would need bloodwork, specific symptoms, exams and testing, and response to treatment. I have high ANA, I have so many severe symptoms including very specific niche symptoms that would not necessarily be explained by just having lupus alone or at all, he refused to order me more tests and even discouraged it, the extent of a physical exam that he has done is poking me a bunch of times, twisting my limbs and causing a lot of pain, and listening to my lungs via stethoscope and that's it. He didn't even look at my mouth ulcurs or want to see pictures of skin sores/papules I would get. He completely dismissed everything, every symptom and every concern that I had and just wanted to write off my severe disabling and debilitating reality of pain and exhaustion and fighting to live everyday as mild to moderate lupus.

We go in circles again and again and he eventually feels the need to bring in another person as witness to the situation which I'm fine with because this is insane medical negligence. More and more circles and I ask if there is literally anything that he can do for me. He says, he can perscribe me the Plaquenil, or I can get a new rheumatologist.

He looks me dead in the eye, after all the pain that I've had to endure to get here. The exhaustion because I have to fight every single day just to do the littlest things. And he tells me:

"I do not believe that you have severe autoimmune disease. And now you need to leave."

I asked him if he had even read my email about my symptoms and he said he "thinks" so. I asked him about the positive centromere antibodies and he quickly snaps back saying that I actually am and have always been negative and that the test before (ordered by my PCP) was a poorly done test with a falsely positive result. I asked him about my high ANA with titer and pattern indicative of having autoimmune disease (from the labs he ordered and reviewed) and he just shrugged. EDIT: I thought this would be obvious and go without saying, but yes I did ask about my symptoms and why they are there and so severe and the only answers he gave are either that I'm lying or that he doesn't know.

Medical gaslighting is real and its scary. Nobody can tell you what you feel inside of your body, and if someone's words are not matching your internal experience then that is not the reality. The reality is what you are experiencing and feeling inside of your own body and daily life. He left off with a snarky sarcastic comment to me saying, "well, you would know better!" To which I made SURE to stress to him that not once did I question his credibility, knowledge, advice, or treatment or refuse it either. And the only thing that I disagreed on him with was that the experience that he was saying and writing down as me having (mild to moderate symptoms) did not match my felt internal reality and experience (severe disabling symptoms). I absolutely would not know better than a doctor about medical conditions and disease, but there is no doctor in the entire world that can tell ME how I am feeling in my body and how MY internal experience feels regardless of how it "looks on paper."

I was kicked out of the office building with not even the check out paper and definitely no schedule for a followup. I didn't even get to check out from my appointment. I have never ever been kicked out of somewhere so it was very new for me and I feel extremely guilty over it even though I did not act irrationally or yell or be disrespectful or anything like that and I was very careful with my choice of words, tone, and semantics. I cried a little bit but not so much that I couldn't speak logically and calmly. I feel sick to my stomach over what happened and I don't know if I feel betrayed or guilty or both.

I'm really not sure where to go from here, because this was genuinely my last chance. I'm basically homeless right now after having to escape a DV situation (the mold place), I'm finally just about to run out of my savings and I don't have any family or friends to turn to, I'm far too disabled to work any sort of job even remote, and getting on disability requires so much paperwork that I don't have and might never get especially now because of this situation with the rheumatologist. I've contacted every resource and organization I can find or was recommended to. I was turned away from every single one for being too disabled. I'm serious, it's because I'm too sick to live alone or work, and there is NO ONE that can help those like me who are also homeless and struggling with money on top of being extremely disabled. I've literally run out of options now and I truly do not know what to do. What happens to the people like me???? What happens to us????? What happens to me...???????

I see my PCP in a couple days, so I'm truly holding out so much freaking hope that she will actually listen to me and try to help me. I am in so much pain every day and I am so tired. I am just so tired, I am so tired.

EDIT: spelling n grammar EDIT 2: formatting. also check my replies in this thread for more info about why I'm not just looking for an internet diagnosis or instant fix to my symptoms, but just a young disabled person in severe pain being gaslit about the severity of, not my level of disease, but my level of symptoms and pain. I think anyone in this subreddit can relate to that.

So l didn't manage to go get tested for RA yet but my fingers are starting to hurt too so l'm almost positive l have it.I write to vent....l'm really upset about all this. I know from my mum it's a horrible disease and l'm still young for it 😭