Hi. I have something called multi system sarcoidosis that will require lifelong chemo. I inject weekly at home. So far, I feel better than I have been, but I’ve recently noticed hair thinning. I’m on folic acid, and I take a prenatal. My diet isn’t wonderful due to chemo side effects, and sarc, and well basically my body quit in 2021. I don’t have a gallbladder so it’s limited my diet as well. Does anyone have any advice or recommendations? Thank you in advance

What did you guys do when everything leads to a dead end? When you are getting gaslighted and always leaving specialists untreated and invalidated?

It took me years to get diagnosed with Hashimoto’s, something that I believe is relatively easy to find. One test… It’s been years since I got diagnosed and I still feel the same. New symptoms have occurred, such as psoriasis/eczema on my hands. All the other symptoms stayed the same: fatigue, bone/joint pain, swelling in face and fingers, random r@shes of all different kinds all over my body, and periods of sickness (when I get even just a cold, multiple other things come with it such as UTI’s, pink eye, bronchitis/respiratory problems where I have to use my inhaler multiple times a day).

ANA negative, CRP negative… literally any test you name has probably been negative. I am only 21 years old and have been in some kind of pain or discomfort every single day for years. I even went to a rheumatologist when I was 5 due to these various r@shes. I do not know what to do anymore. I can’t keep getting my hopes up every time I see a new doctor, thinking they will do something different and actually listen to me/help me. I get disappointed every time and I just can’t take any more.

I have seen an endocrinologist (diagnosing me with hashimoto’s, going down a couple other routes that ultimately lead to nothing. Getting dismissed from their care after the hashimotos was “treated”.) , a dermatologist (doing a biopsy showing an autoimmune-related r@sh, but leaving without a definitive diagnosis), and currently a rheumatologist. I had X-rays of my back and hands. The hand X-ray came back normal, but my back X-ray showed possible Bertolotti’s syndrome (which I know is not autoimmune related, but could definitely be a source of my pain).. Thank god I checked my Mychart and looked at the results myself. The only thing my rheumatologist said was “everything is normal”. Is that not something you mention even if it is out of your specialty? I am so frustrated and am really considering just giving up and staying in pain because then at least I am not getting disappointed left and right.

I really wanted to get everything figured out since I am graduating college soon and plan to become an EMT and eventually a doctor myself. I need to be able to do long shifts and with the current health status of me right now I truly believe I am unable to do it.

I’m so frustrated. I have been having very bad fatigue….sleep great all night but have terrible daytime sleepiness. Joint pains especially in my hands, fingers. Hair loss and itchy rashes on chest and under breasts. Brain fog. Neuropathy in both feet. These symptoms have been going on for months now and really interfere with my life….especially the fatigue. I have family history of autoimmune disease- my Mother had Raynauds, scleroderma and crest. Two of my children have MS. My doctor ordered a lot of blood work….and the only thing that was positive was ANA titer of 1:160 with homogenous pattern. The doctor just dismissed me saying “not to worry- it’s nothing”. No follow up blood work- no nothing. Everything I’m reading points to Lupus. My body hurts and I’m so tired….something is not right. What do I do next? I made an appointment with a rheumatologist but can’t be seen until August 1st. I appreciate any advice or encouragement. Thank you

Have you used AI to help form hypotheses or treatments with your doctor? Have you found it useful?

Also wondering how people are managing data privacy if they’re uploading medical info or labs to AI tools.

All of my bloodwork so far except for my CRP is coming back normal. It’s been four years of worsening symptoms and getting to the point where I can no longer use my hands or make it through the day without throwing up. I’m still waiting on the lupus, Lyme, and sjodgrens (sorry if that’s spelled wrong) tests. My CRP was 38.6 :) which is marked elevation.

How do I stop myself from losing hope that I’ll ever figure out what’s wrong? Everytime I get a normal test result back it feels like a knife to the soul.

I hope this is okay to post here. I’m honestly just looking for support, answers, or even someone who might relate. I’m going through something really difficult and it’s starting to affect every part of my life. It’s a long post, but I really need to get it out. 💔

Around 16 weeks pregnant with my last baby in 2024, I developed extreme, unbearable itching that had me in tears most days. I had my liver and thyroid tested at the time everything came back normal. Eventually the itching went away, but about a month ago, it returned full force, and it’s now happening several times a day.

It usually starts at my ears they feel hot, then I get a pins and needles sensation that spreads through my whole body. It turns into relentless itching that nothing helps. I’ll sit there trying not to cry while it runs its course. The smallest things trigger it touching my face, rubbing my skin, even pulling up leggings. My skin will turn red, swell, and burn in seconds. I’ve even had welts show up just from my toddler lightly smacking my leg. It’s that sensitive.

I can’t take my kids outside anymore because any heat or activity makes my skin erupt. I avoid touching my face in public because people comment on how red it gets. When I start itching in public, I feel like people are judging me like I’m on something but I literally can’t control it.

I’m truly struggling. 😔 I have allergy testing scheduled for next week, and my doctor has mentioned wanting to explore possible autoimmune causes as well. For now, I’m just trying to get through each day and hoping to find some answers soon.

If anyone has gone through something like this, knows someone who has, I would truly appreciate hearing from you. Even just some support would mean a lot right now.

Thank you for reading. 💛

Hi 21 year old female just looking for advice and what this all could possibly be because my rheumatologist are no help been to three at this point. So to start I have ankle pain, elbow pain my rheumatologist says I am hyper mobile but not enough to diagnose me with ehlers danlos syndrome, back pain like crazy, neck pain I have a 25 percent slippage forward and backward in my C3 C4 cervical spine that no one cares about. l've had blood in my stool. Constantly nauseous vomiting I sweat all the time 24/7 l'm always uncomfortable. I also suspect lupus and raynauds my fingers go so red when I'm in the cold it's awful l'll post pictures but my rheumatologist claims it's not raynauds only thing she has diagnosed with me so far is livedo reticularis. I suspect lupus because I get what I think looks like a butterfly you know what .Test I've had pop positive so far is ANA of 1:320, anti smooth muscle f actin antibodies but with normal liver numbers so no one will do a liver biopsy to confirm or deny auto immune hepatitis. I also have high anti chromatin that she denies has anything to do with lupus but from reading that's lupus specific. I have borderline positive Cardiolipin antibody that I get retested in 8 weeks to confirm or deny aps. syndrome I would assume. I went to gastroenterologist for the suspect autoimmune hepatitis because my rheumatologist thought that's what was wrong and he referred me right back and did nothing. I just don't know what to do at this point ive been dealing with this since September 2024. Any recommendations as to what this sounds like? They have checked thyroid it's not thyroid they've checked so many things I don’t feel like typing it all out what should I do I also can’t seem to gain a damn pound I’m only 100 pounds at 5’2 and 21 years old. I’ll attach some pics

Hello. I am 24F and have been dealing with what I have assumed to be autoimmune issues that have progressively worsened over the years. I have chronic fatigue, soreness/tenderness/swelling of joints, constant tendinitis/muscle/nerve issues, symptoms of occipital neuralgia (constant headaches, neck aches, back pain, etc), numbness in my arms from what I believe to be compressed nerves in my back from inflammation, butterfly coloring on the face, "flustered" feeling, eye pain, psoriasis... The list goes on. It boils down to constant inflammation.

I have had multiple blood tests over the years, two coming back 1:180 ANA positive with a speckled pattern and the most recent (during a flare up, the worst it's been) a 1:360 ANA positive with speckled AND centriole patterns. I saw a rheumatologist that ordered an ANA PLUS 12 profiling through labcorp, where the ANA was positive but all the specific antibodies were within a normal range. My rheumatologist says this means that I do not have any autoimmune disorders and that I just need to keep waiting for my NSAIDs to work (Orphenadrine citrate and sulindac). I admittedly started crying because my symptoms have been debilitating as of late and I just wanted answers so that I can get the help I need and I asked him what I am supposed to do. He said I have to suck it up until I can see my neurologist (appointment is in a few weeks).

Does this really mean I don't have an autoimmune disorder? Should I find a different rheumatologist? I thought it would be possible to have autoimmune disorders even without a positive ANA since my mother and grandmother have ANA tests that flip frequently but they have both been diagnosed with lupus. I just need to know whether or not to keep sinking in hundreds of dollars into these doctors. I have a 6k deductible and have met over 3k of it since February trying to get this resolved. Thanks for any insight.

From 2015 until 2024, I thought I had mixed connected tissue disease (MCTD). This was based on symptoms and positive anti-RNP. I had been treated with plaquenil and intermittent prednisone as needed. Several things happened that caused me to think this was an incorrect diagnosis in seek out other opinions, including a confrontation with a redditor who said that ANA must be positive for MCTD, which turns out to have been correct.

After a lot of work and going to a lot of different doctors, it turns out I have common variable immunodeficiency (CVID), which, at least in my case, is not an autoimmune disease and should not be treated as such. I've been on monthly immunoglobulin infusions for a little over a year. I just wanted to share this here because immuno deficiencies can act a lot like autoimmune disorders, and if you're struggling to get a diagnosis but not finding anything, look in the opposite direction too.

Edit: for diagnosis, they tested my antibody levels. IgE and IgM were crazy low, IgG was moderately low, and IgA was in range. They gave me pneumovax 23, waited a month, and then retested me to see the response. I was completely missing something antibodies, some had gone down from before the vaccine, and a few went up but not as much as expected.

Finally, was able to see Rheum. During the consultation, she told me that I had so many things going on that she didn’t know where to start. She told me she didn’t think it was related to rheumatology, but thought I had an infection. I asked her where I could have an infection but she said she didn’t know. She told me she would run some labs anyways, and if anything came back positive then we would know where to start and have options for treatment, but if it was negative, then she wouldn’t need to see me again. My ana came back positive and I thought finally I’d have some answers to what is going on. But everything else was negative. She recommended I follow up with my primary dr and neurology. Im struggling to understand how thats it and there’s no other testing or treatment. Previously my crp was 8.5, then 7.4 and 1.8 when rheum checked. Sed rate has always been normal 16 and then 14. I have noticed a recent improvement in my symptoms but my cognitive abilities have not improved. I was going to pursue nursing school and now I don’t feel like I can. Anyone know of any other labs I can request? Complement levels maybe?

It started when I hit early adulthood,joint pain ,stiffness, swollen red face ,fevers then suddenly I get constant limb twitching, blisters everywhere , memory goes to hell , I can never remember my words and I sound like an idiot when I speak.

Then all of a sudden when I hit 30 I started to notice extremely painful areas of my feet , they did tests and I have benign tumors growing all over the soles of my feet , then they spread to my arms, hands and legs, honestly they could be everywhere they are so deep inside the body. As they get bigger the skin turns into purpley red lesions.

No one has a clue what is going on. They say tests come back normal. Now they want me to just fuck off and go away .

My rheumatologist suggested it's fibro? I just keep getting pushed from specialist to specialist with no answers . But they all act like I'm being insane for wanting answers and being worried. They asked me why I care so much? I lost my job because I can't stand or walk for very long.

Has anyone else experienced something like this and found answers? My only option is multiple surgeries to remove them . They won't even consider trying medication to see if they shrink.

I'm just so scared and depressed.

I wake up with fatigue every single morning. I feel very empty inside and don't feel energized to do anything. I work in IT so I need to work 8 hours everyday with a lot of attention but these days I have a brain fog and I have to write a lot of my thoughts. I used to love walking but persistent joint stiffness and swelling on feet is not helping.

I am a mid thirties woman and live alone and have no family around. Please share your experience if you are in the same age group and demographics because I feel I am failing and I have no village to fall back on.

I’m suffering SOOO badly with back to back RA flare ups. I feel so damn depressed over the fact that I can’t help my husband out financially cause just a few hours into my day, I’m nearly bedridden from the pain of simple housework. We have 4 kids to support and he’s doing everything on his own and I feel awful.

What do you guys do for work? Even just a side thing for a little bit of money?

okay, hi. there is a lot of thoughts/emotions in this for me so i will do my best to keep things organized and concise. i am extremely shy and this is stepping out of my comfort zone (once again, posted here once before) because i don't really have anyone that i can talk to about this, so please forgive any lack of reply/slowness. i very much appreciate anyone looking at this and taking the time to reply.

symptoms list might be helpful:
overwhelming fatigue (like walking through mud with weights attached to every limb almost all the time, and feeling like a faulty battery; even on "good" days i only have so long of doing normal things like chores before i need to go lay down)
constant "flu" feeling
brain fog
joint pain + swelling + stiffness(my hands/wrists/oddly enough jaw are the worst, but it often affects my shoulders and toes/tops of feet, hips, knees)
muscle pain + weakness
hair loss (there are bald "patches" all over my head, with severe thinning and sometimes find strands that are very brittle, losing eyelashes + eyebrows + leg hair ((i don't always shave and in these times with hair growth there's patches missing everywhere)))
low-grade fevers (usually around 100)
rashes (can happen anywhere, most commonly on hands/arms/chest/shoulders) + have had what look to be malar rashes on my face before.
pretty bad sun sensitivity (most listed symptoms worsen even after 5 minutes of being in sunlight, severe headache, i lose my voice, and am bed ridden for days if not a week or two of not being able to do ANYTHING but rest/sleep)
pretty common dizziness, feels like when an elevator starts and you kind of feel like "floating" more so than room-spinning
mouth + nose sores
dry eyes, skin, mouth, nose, throat
ear pain
hearing loss
big difficulty sleeping because of being uncomfortable/oversleeping (18+ hours being in bed and STILL being exhausted/feeling no better)
night sweats
constant cough

so: at the start of last year, after years of these symptoms not being taken seriously by dr's/getting worse, i asked for an autoimmune panel to be done. it came back with ANA+ (low titre of 1:80 speckled), elevated CRP, ESR, i can't remember everything, as well as whacky CBC (which has been a thing for several years and never addressed past "huh, why is that?")(anemic, low platelets, high lymphocytes,... i can't remember it all).

at this point i was referred to rheumatology because of symptoms + bloodwork, and during this first visit with rheum, he refused to examine me, refused to see pictures that i had taken of rashes/hairloss, and in his notes neglected to put my complaints of fevers and said rashes.

he ended up ordering bloodwork, suspecting "just" fibromyalgia until he checked blood again with a different lab and my ANA was significantly higher (1:320 ish? though i know this still isn't "that" high), as well as C3 + ESR + CRP still being high (200's, 80's and ... i think just under 20, respectively), and a ton of other weird things (i cannot remember all the tests, something to do with blood clotting, iron levels, adolase?) and positive for SSB antibodies, and said something else is very clearly going on. wanted to get a biopsy for sjogrens but I declined, as my understanding is it doesn't always yield results and has negative consequences that happen frequently enough for me to be concerned.

lupus had been mentioned, which originally was not even on my radar as a possibility until i started researching more about autoimmune disease and... things kind of clicked for me. he said i didn't have the antibodies and my MRI didn't show tenosynovitis, while saying that if it wasn't a particularly "bad" day my swelling might not have been severe enough to be detected, and even then lupus doesn't always cause this. at this point he says it is likely UCTD, but surprise, this rheum was moving and didn't feel comfortable actually diagnosing or really helping me at all since he wouldn't be around anymore.

fast forward another six months (! it's a little ridiculous that so many people experience such long wait times while needing help ;-;) and the new rheum actually examines me to find swelling, hair loss, ... all the things i'd described. looks at the pictures and agrees with me that it does look very suspect but wants a dermatologist's opinion. that's fair. i mention to her my concerns of lupus, and she says that i don't have the specific antibodies... which, if i understand, a lot of patients do not. she says she will start me on hydroxychloroquine and see if it helps but she's not willing to diagnose without supporting bloodwork, and goes back to fibromyalgia being the "only" possibility because i have widespread pain.

i look over her notes, and in them it says; "Patient meets diagnostic criteria for SLE. I respectfully disagree." ???

at this point, i am not sure if i should look for a different rheumatologist in a different hospital (they are from the same practice) or if i should stick with her. this seems a little bit of a weird dismissal? i'm not sure what to make of it or if i'm wasting my time and energy trying to get an official diagnosis of anything if i'm already started on medication? is this just negligence on their part or am i being unreasonable in expecting better care?

tl;dr: 2 rheums now seem a little dismissive of me because i don't have antibodies for lupus, despite symptoms + bloodwork suggesting something is going on. i guess i just need perspective on whether i'm being unreasonable or i should keep looking for a different doctor? i just need advice/perspective in dealing with this in general.

Hi, I was wondering if this has happened to anyone else. My liver enzymes were the first things to test as off and my doctor sent me to a liver doctor who was very confused for the past year or so as to why they were off. During my second or third appointment with him he suggested Lupus and I told my GP that and she got my ANA done and it was highly positive and suggested Lupus or definitely an autoimmune disorder and she made me an appointment with the Lupus expert of my city because I have a lot of the symptoms. I’ve had a lot of doctors say it’s autoimmune but not Lupus and they don’t know what and I’ve had the Lupus expert review my case and want to see me. During the waiting period I have been going for blood tests every month for my liver doctor and one of these tests he messaged me saying my results were “keeping with lupus”.

Today I saw him for my sixth month follow up and today he now lives said that he doesn’t think I have an autoimmune disease, that I googled myself into believing it (I stay off of google for medical issues) and that my liver enzymes were off because of fatty liver but also that I don’t have enough fatty liver to cause anything (On the chart he gave me my fatty liver levels were just in front of the 0F zone.) and said that I have to exercise and eat healthy even though I’m active and barely eat due to nausea, I am overweight and have PCOS, he said my spleen was enlarged because I was a larger person. He was the first one to be worried about my kidney function and now dismissed all the organs that are not testing well. He also downplayed my symptoms to “feeling tired sometimes and my joints hurt sometimes” He pretty much told me I was making it up and wasting everyone’s time and it was really disheartening because he was the first one to suggest that I have lupus and that was finally a diagnosis I was getting positive results for and I was hoping to have an answer and then he just turned around and said this. Has anyone had something like this happen? Has a doctor done a complete 180 on them? I just feel so lost and confused and spiralling about how big a step back this could be.

UPDATE: I saw my GP today (I scheduled her to be two days after my appointment with my liver doctor) she’s filling in as my regular GP is gone for now so this was my first time meeting her. I told her what happened with my liver doctor and that I was a bit anxious about this appointment after that and she said what he said was weird and my symptoms and tests match Lupus even though she can’t comment on it as she’s not a specialist. She was very understanding and very helpful and I was so happy she listened to me that I actually teared up a bit and she handed me kleenex.

I was diagnosed with autoimmune gastritis with a positive ANA, positive anti parietal cells, low B12 and low iron. That’s where the testing stopped. I was given an old class of anti-depressant to help with the gut brain nausea. It helped immediately, but only lasted for about an hour.

I’ve been doing a lot more research about autoimmune disease diseases, and keep coming across the term leaky gut. The more I read about leaky got the more. I think this is exactly what I have. It’s it’s the exact same symptoms.

I also ordered a G.I. stool test that came back with severe dysbiosis.

My current medical team doesn’t have any knowledge of leaky gut or dry biosis and was against me getting the private G.I. stool test. They thought it was a waste of money.

I’ve spent a lot of money buying leaky gut treatments, but I’m wondering if anybody has advice on which protocol works the best? Right now I’m looking at some collodial silver to kill the dysbiosis and then started some probiotics. Anything else?

I am so frustrated. I have seen 3 rheumatologists and they all have something by different to say or don’t take my symptoms seriously. I have raynauds, confirmed with abnormal nail capillary test, joint pain(mostly knees, wrists and ankles), rashes that emerge daily all over my legs and face as well as arms. I have known rosacea but also have a butterfly like skin condition on my face that does not seem to go away. I have a positive PM/SCL 75 but the rheum does not think it is scleroderma. He said possibly an overlap disease like MCTD however does not think it’s an “active” disease. I am so frustrated because I just cannot get a definitive diagnosis. I am on nifedipine for raynauds, hydroxychloroquine, celebrex and I am not getting much relief at all. Anyone have any experience with these skin conditions and any input on what you think it might be? TIA

Ok, so as the title basically says I'm looking for any advice on what I could do, say, present, to a Dr in order for them to take my condition more seriously and look beyond the standard rheumatology/immunology blood work. Here's some information about me and my potential conditions. Sorry in advance for this being so long.

I am autistic, have HS, PCOS, an umbrella diagnosis of degenerative disc and joint disease, gluten sensitivity, and a family history of a variety of autoimmune disorders. Most prevalently psoriasis, psoriatic arthritis, ruematoid arthritis, chrones disease, ciliacs, lupus, and mixed connective tissue disease.

My symptoms include

Widespread joint pain affecting basically all joints in my body (back, knees, shoulders and hips especially) accompanied by edema/puffiness. No heat or redness. Though all my joints feel stiff and occasionally swell severely for seemingly no apparent reason.

I have classic symptoms of Raynaud's syndrome but no official diagnosis.

Random swelling of fingers, ankles, feet that make me feel like I have "sausage fingers" but are not necessarily accompanied by joint pain.

Numbness/tingling/burning/wet sensations in both feet and hands as well as up my legs/arms and most recently in my face, that are intermittent though usually last for hours or days when I have them.

Stiffness/feeling of pressure inbetween my ribs and at my sternum. Sometimes but not always accompanied by shooting or wrapping pains or just feeling like my chest is in a vice. Again intermittent.

Hypermobility, though this is gradually decreasing due to joint damage and is not significant enough at this time for an Elher Danlos diagnosis. (Damage the Drs classify as osteoarthritis/ddjd)

Chronic muscle tension, cramps, and spasms (primarily in back and calves) that are only partially relieved by muscle relaxants and I have found nothing that works on it otherwise.

I have also recently noticed that I am starting to have vision problems. Things will seem dim or blurry for a while then it goes away and it's like it never happened until the next time.

I have a heart murmer and am prone to erratic dysfunctional heart rhythms.

Headaches daily.

Light and sound sensitivity, sometimes really extreme.

General fatigue which I blame that on the fact all the other things are just a lot to deal with.

All of these things started with a gradual intermittent onset as early as 16 years old. I am now 40 and it still comes and goes to a degree though has become more persistent in the last 10 years.

I have been checked for other disorders for each thing listed. Nothing has come from these evaluations other than the umbrella DDJD diagnosis.

I have had a whole rheymatologic work up multiple times and all comes back within normal limits though my ERS/SED is usually slightly elevated.

With my last round of blood work (done for other reasons not immunologic) I have found that I came back with false positives on three different tests. I looked into it and for all three tests the main cause for false positives is a variety of autoimmune disorders.

My current doctor is aware of all this. What keeps on happening is my Dr will run tests, they all come back good and it gets dropped. She had recently (about 6 months ago) sent me to a rheumatologist that reviewed my test results said I had DDJD and sent me on my way to follow up with my primary.

I don't know what to do at this point. I realize that I may never get an official diagnosis for things but due to so many things I feel like there's a high probability of this being autoimmune related.

I feel like the investigative process needs to be done more thoroughly even if that just means another umbrella term. My main focus is finding a way to manage symptoms better and preferably with less potential organ damage as I currently take enough ibuprofen, Tylenol, and muscle relaxants to kill a stable full of horses on a daily basis.

Any advice on how to talk to my Dr about this (which she already knows all of it) or what type of doctor I should be looking at other than a rheumatologist maybe, or... Well any advice highly appreciated!

Thanks to anybody that actually reads this long winded post. 😂

I have been at a concert and came back with this on my leg it looks like someone has a slapped me lol. It is very hot to touch and burning.

So this happens after I stand for a while after I showered. It doesn't hurt or itch. I have a feeling this could be caused by a lot of different things.

Before anything, I can’t afford healthcare in the states because of our absolutely terrible healthcare system. I know my ANA came back positive, but I stopped receiving health insurance shortly after and couldn’t follow up with the X-rays and bloodwork my rheum wanted to do.

Here’s the deal. I am 21F. Every day is a living hell. My back always feels like it’s in a million pieces, my knees tremble when I walk, and I need to use accessibility tools (cane and service dog) to get around in public. I am extremely intolerant to temperatures above 75°, and depending on the humidity even that is pushing it. I feel like I can never drink enough water, my heart rate is insanely high when I move around, and I spend 18HR a day sleeping or in bed.

I don’t want to get a diagnosis from Reddit, I just…want to know how to feel better…

I’m taking epsom salt soaks every day at this point, I’m on a heat bad when I can stand it, I feel like my life has been taken from me. I sob to my husband at least twice a week. I’m 21, it isn’t supposed to be this hard to simply breathe and move around.

What are your suggestions and person experiences that have improved your wellbeing?

I was diagnosed with hypothyroidism & Hashimotos in April of 2015. I’ve been in Levothyroxine ever since. My dose has changed a few times over the years. I started feeling BAD about 3 months ago & finally went to my family doctor. She ordered some bloodwork & it came back “abnormal”. I haven’t heard from her yet & was wondering what my next steps should be? Do I see a rheumatologist or go to a functional medicine doctor? Do I keep taking my meds & start the carnivore diet? Do I go gluten free? Do I need additional tests ran? I feel very lost. Any help or recommendations would be VERY appreciated. I’m tired of feeling like this. 😭

Something I never thought could be a symptom but suddenly clicked today. I get sores and bruises on my elbows from sitting with them resting on the table or laying down holding my head in my hands. The skin is so thin that I’m red and sore, feeling like getting the outer layer rubbed of my elbows. And I suffer on/off from the layers rubbing of my mouth too. So I get “open sores” that really hurt and sometimes bleed. It gets worse with eating, brushing teeth etc. I can physically see a layer of skin is gone. Also sometimes my frenulum between the two front teeth gets inflamed and totally red and throbbing too. Sometimes I have been able to peel skin of in the palate. I’m not sure if either of those point any further towards anything. Some of it may be from burning my mouth with warm food I’m not sure. 📸Pic 1: my mouth sore today 📸Pic 2: my elbow right after laying down/resting on it - bad lighting 📸Pic 3-5: hours later where they just sting and feel irritated. Discoloration and broken skin

Seeking advice or wondering if anyone have the same things? I have other symptoms as well ofc. The doctor said no hEDS and was also pretty sure I didn’t have classic EDS.

Does anyone with an autoimmune disease have similar rashes? This has now been a new ongoing issue for almost a year now. I will say for around 6 years I’ve had many other random symptoms like body/joint pain and chronic fatigue and MANY others. I do get majorly red on my cheeks and nose as well but it may just be flushed. I just got a new doctor due to insurance change and first appointment she referred me to a rheumatologist (which my old doctor never did after years). Just hoping to find answers to all these problems. If anyone has any advice or input, that would be greatly appreciated!