u/aoiwanai

location: PA
my state job (PA commonwealth) sent me a letter saying i don’t qualify for fmla because i haven’t worked there long enough yet and need another two months before i’m eligible. because of that, the medical leave for 6 weeks my doctors told me to take is being put in as unpaid leave instead.
my doctors have already faxed over my notes and paperwork supporting my leave. i was recently in a car accident which gave me a severe concussion and i’m still going through medical testing, including upcoming mris, mras, and other appointments like physical therapy because of ongoing health issues that were exacerbated by the accident.
what’s freaking me out and confusing me is that the letter says employees on leave without pay have limited rights to return to work. when i’m cleared to come back, i only get my job back if there’s a position available. if there isn’t, my employment can end. I also was expecting to get paid by the end of this week since i do have PTO, i had no idea i wouldn’t be getting paid during this.
i didn’t just decide to stop working or take time off for no reason. i’m following my doctors’ recommendations and trying to deal with my health, and now i’m facing being unpaid and possibly not even having a job to come back to when i’m better. i’m apart of a union at my job and im thinking about bringing this to them but im just so confused. is there anything i can do? am i misunderstanding this?

this is what i was sent in the mail;
“Your absence does not qualify as leave under the Family and Medical Leave Act (FMLA) and cannot be approved. After commencing leave without pay (LWOP) absence, employees have limited return to work rights. Notify this office when you are released to return to work so that we can determine if there is a position available. If a position is not available, you will remain on LWOP absence until a position becomes available. If no position becomes available, your employment with the commonwealth will end at the exhaustion of the LWOP absence entitlement. If you do not act by July 14, 2026, you may lose your rights to LWOP absence and the absence may be charged to absence without leave (AW), which may include disciplinary action up to and including termination.”

hi, i’m 21F and i’m waiting for rheumatology/neurology rn. i’m HLA-B27 positive, ANA 1:80, low vitamin D, and i also have PCOS/mild insulin resistance, IBS, chronic pelvic/bladder symptoms, and suspected endometriosis. not asking for a diagnosis, i’m just trying to see if this sounds familiar to anyone with MCAS/histamine issues or if it’s worth asking for allergy/immunology.

one of the main things is i get random itching/burning/pinching feelings in my skin and then i’ll notice these hive-like raised bumps in random places. they start off itchy or pale/white, then turn red or darker and can stay in the same spot for days before fading. I get them every single day. i also get random itching even before i see anything on my skin and sometimes without any bumps.

i’ve noticed possible food/drink triggers too, like chocolate, graham crackers, lemons/citrus, energy drinks, coffee, peanuts, ketchup, and processed foods and this has been since childhood.

i also get these heat-triggered/random near-fainting episodes that doctors have called possible dysautonomia/pre-syncope. during them i’ll suddenly feel hot, shaky, sweaty, nauseous, dizzy/vertigo, short of breath, palpitations, blackening vision, worse tinnitus or temporary hearing changes, and this impending doom/body-giving-out feeling. laying down, cooling off, and throwing up helps. my temperature regulation is also horrible and i can go from hot to freezing really fast.

heat also messes with my ear/head. lately when i get too hot, my left ear can start hurting really bad, the same ear where i had popping/fullness before. then the left side of my head can start hurting too and i’ll get a headache and a stuffy nose. it doesn’t really feel like normal allergies because it seems more triggered by heat than being outside or around something.

other symptoms i have are rapid unintentional weight loss, around 60 lbs in 6 months, chronic fatigue, brain fog, low appetite, morning nausea, hair loss, easy bruising, random visible muscle twitches, mottled/purple-red hands or feet with cold/in the shower, my veins in my hands also become very noticeable and my hands become red and swollen looking when they are down at my sides sometimes. chronic neck/back/shoulder pain since childhood, morning stiffness that gets better with movement, balance issues/legs buckling, sometimes leaning/stumbling when i walk, my left arm drifting down when i hold both arms out with my eyes closed, tinnitus/ear pressure/itchy ears, dry gritty red eyes, occasional dry mouth, and light sensitivity.

workup so far: thyroid, anemia, diabetes, Lyme, and CRP were reportedly normal/negative. CT/ultrasounds normal. back X-rays only showed mild scoliosis. cardiology 48-hour monitor wasn’t concerning, but i didn’t have one of my typical episodes while wearing it

21F, HLA-B27 positive — not diagnosed officially yet

Hi, I’m 21F and I’m waiting for rheumatology and neurology. I’m not asking for a diagnosis, but I’m wondering if anyone with ankylosing spondylitis/axial spondyloarthritis or HLA-B27 positivity has experienced anything like this, especially involving the neck, skull base, neurologic symptoms, dysautonomia-like episodes, or possible craniovertebral/cervical instability.

My biggest concerns are rapid unintentional weight loss and recurrent near-fainting/dysautonomia-like episodes. Over about 6 months, I lost around 60 lbs unintentionally, going from about 176 lbs in March 2025 to about 124 lbs by September 2025. My weight now fluctuates between 120–127 lbs; today I’m currently 121 but was 127 four days ago. Around this worsening period I also developed/worsened chronic fatigue, brain fog, decreased appetite, persistent morning nausea, hair loss, easy bruising, decreased exercise tolerance, generalized weakness/pain, and random burning/pinching/itching pains throughout my body.

I get recurrent near-fainting/lightheaded episodes that doctors have described as possible dysautonomia/pre-syncope. They can be triggered by heat, physical work, standing/walking, or sometimes happen randomly, like while walking around a store or laying in bed. During episodes I feel suddenly hot, get a sense of impending doom, palpitations, sweating, blackening vision, dizziness/vertigo, nausea/vomiting, shortness of breath, worsening tinnitus or temporary hearing loss, and feel like my body is about to give out. Lying down, cooling off, and vomiting usually help. I also have poor temperature regulation and switch between feeling hot and freezing within minutes or seconds.

Some symptoms seem possibly neck-position related. I get very nauseous lying sideways on a soft cushioned breakroom chair with my legs over one arm and my back/neck pressed against the other arm. I also had one episode during intimacy where pressure was applied to my neck, and my right side suddenly tensed up and became extremely painful to move or do anything, while my left armpit/upper chest area started twitching enough that my partner could feel it. I also get headaches/head pains at the base of my skull near my ear that can feel throbbing, zapping, or stabbing, and I sometimes feel like my head involuntarily jerks to the right. It feels tic-like but random/inconsistent, and I’ve asked a friend if she could see this when it happened in front of her and she said no.

I’ve had chronic pain since childhood. The earliest I remember is around age 9, when I developed severe shoulder pain that never fully went away. Over time it turned into chronic neck/back/shoulder pain and has worsened significantly in recent years. I have morning stiffness that improves with movement, upper buttock/glute/thigh pain, intermittent thigh numbness, random calf tightness, legs/calves giving out or buckling when walking, intermittent twitching/muscle spasms around both shoulder blade/upper back areas, and frequent need to crack my fingers, toes, shoulders, neck, and back because they hurt. Sometimes cracking my fingers feels like it relieves pain in my neck/shoulder/back.

I also have balance/coordination issues: clumsiness, stumbling, sometimes leaning to one side while walking, and if I try to walk heel-to-toe like on a tightrope, I can’t stay balanced and sway to the sides. I sometimes have difficulty speaking/stuttering more than usual. I also get a ticklish/butterfly-like sensation in my hands and arms, especially when making a fist, and it can feel hard to make a fist because of that sensation. It can travel halfway up my arms. If I close my eyes and put my hands out in front of me with my palms up to try and keep them up, my left arm tends to drift downward and won’t stay in the same position.

My hands become mottled and tight with cold exposure, like cold weather or washing my hands with cold water, then turn purplish/reddish-blue rather than completely white. My veins become more pronounced/visible when this happens. My feet also turn purple/reddish-blue in the shower. I also get random (unrelated to water temp or anything) single hive-like raised bumps in different areas. They usually start itchy, sometimes with a burning/pinching feeling, and then can darken and stay in the same spot for days before fading.

Since around January 2026, I’ve had ear symptoms including tinnitus/ringing, ear fullness/pressure, and weird popping/crackling in the left ear. The popping/fullness improved and may have been from a foreign object in my left ear, but it resolved before ENT so I never got a clear answer. My ears still itch and sometimes hurt. I’ve noticed especially in hot temperatures my left ear, where I had the popping/fullness before, will hurt really badly and the left side of my head will start to hurt too and I get a headache. My nose will also get a bit stuffy, but it’s not allergies from outside or something; it seems triggered by heat. ENT also mentioned possible auditory and vision processing disorder because I’ve been having trouble understanding what people are saying or what I’m looking at. For example, one of my jobs is cleaning, and I saw someone with a similar color pattern to a duster we use and was fully convinced I saw our big metal cleaning carts right outside the door with a duster showing, but it was actually a man with similar colored clothing. Audiogram was mostly normal except mildly decreased cochlear function, which they said may contribute to tinnitus. ENT also noted extra jaw movement, and it hurt when she pressed near my jaw while I opened my mouth.

I also have dry/red eyes especially in the inner corners that feel like a piece of sand is in there or something, occasional dry mouth, light sensitivity, and the balance/coordination issues mentioned above.

For background, I have PCOS and mild insulin resistance. I had elevated testosterone in Dec 2023 and insulin around 15–15.6. I was prescribed metformin and Yaz in the past but didn’t take either consistently and stopped Yaz a long time ago. I’ve had irregular periods since my teens. I started my period around age 9, initially regular/heavy, then around age 15 they became irregular, including skipping up to 9 months, sometimes monthly then skipping again, or bleeding for months. I get flu-like symptoms with almost every period, including cough, low-grade fever, lots of clear mucus, and sore throat.

I’ve also been diagnosed with IBS. I have chronic pelvic pain and endometriosis has been suspected. I’ve had pelvic/bladder issues since around April 2024 or possibly longer. Urinary urgency is the most consistent symptom, but the rest fluctuates, including bladder leakage, urinary frequency, stress incontinence, urge followed by leaking, feeling unable to hold urine, and dull/contracting pain with urination. I had burning/pain in the vaginal canal on and off for a few months, but that mostly improved, though I sometimes feel soreness when sitting a certain way. Antibiotics didn’t help and it didn’t feel like a UTI. Symptoms may be worse around my cycle, and I’ve had deep vaginal/pelvic pain when sitting.

Workup so far: ANA positive 1:80, HLA-B27 positive, low vitamin D. Thyroid, anemia, diabetes, Lyme, and CRP were reportedly normal/negative, though CRP was checked when I wasn’t in a flare. CT scan and ultrasounds were normal. Back X-rays only showed mild scoliosis that I’ve had since childhood and was told is not clinically significant. No arthritis was seen on X-ray, though my PCP suspected possible juvenile arthritis. I saw cardiology and wore a 48-hour heart monitor; they didn’t find anything concerning except slightly low sleeping heart rate, but I didn’t have a typical episode while wearing it.

My questions: Can ankylosing spondylitis/axial spondyloarthritis or HLA-B27-related disease cause cervical spine/craniovertebral instability or symptoms that feel neurological/autonomic? Has anyone had skull-base headaches, neck-position nausea/presyncope, tinnitus/hearing changes, balance issues, or limb symptoms related to cervical involvement?

Hi, I’m 21F and I’m waiting for rheumatology and neurology. I’m not asking for a diagnosis, but I’m wondering if anyone with ankylosing spondylitis/axial spondyloarthritis or HLA-B27 positivity has experienced anything like this, especially involving the neck, skull base, neurologic symptoms, dysautonomia-like episodes, or possible craniovertebral/cervical instability.

My biggest concerns are rapid unintentional weight loss and recurrent near-fainting/dysautonomia-like episodes. Over about 6 months, I lost around 60 lbs unintentionally, going from about 176 lbs in March 2025 to about 124 lbs by September 2025. My weight now fluctuates between 120–127 lbs; today I’m currently 121 but was 127 four days ago. Around this worsening period I also developed/worsened chronic fatigue, brain fog, decreased appetite, persistent morning nausea, hair loss, easy bruising, decreased exercise tolerance, generalized weakness/pain, and random burning/pinching/itching pains throughout my body.

I get recurrent near-fainting/lightheaded episodes that doctors have described as possible dysautonomia/pre-syncope. They can be triggered by heat, physical work, standing/walking, or sometimes happen randomly, like while walking around a store or laying in bed. During episodes I feel suddenly hot, get a sense of impending doom, palpitations, sweating, blackening vision, dizziness/vertigo, nausea/vomiting, shortness of breath, worsening tinnitus or temporary hearing loss, and feel like my body is about to give out. Lying down, cooling off, and vomiting usually help. I also have poor temperature regulation and switch between feeling hot and freezing within minutes or seconds.

Some symptoms seem possibly neck-position related. I get very nauseous lying sideways on a soft cushioned breakroom chair with my legs over one arm and my back/neck pressed against the other arm. I also had one episode during intimacy where pressure was applied to my neck, and my right side suddenly tensed up and became extremely painful to move or do anything, while my left armpit/upper chest area started twitching enough that my partner could feel it. I also get headaches/head pains at the base of my skull near my ear that can feel throbbing, zapping, or stabbing, and I sometimes feel like my head involuntarily jerks to the right. It feels tic-like but random/inconsistent, and I’ve asked a friend if she could see this when it happened in front of her and she said no.

I’ve had chronic pain since childhood. The earliest I remember is around age 9, when I developed severe shoulder pain that never fully went away. Over time it turned into chronic neck/back/shoulder pain and has worsened significantly in recent years. I have morning stiffness that improves with movement, upper buttock/glute/thigh pain, intermittent thigh numbness, random calf tightness, legs/calves giving out or buckling when walking, intermittent twitching/muscle spasms around both shoulder blade/upper back areas, and frequent need to crack my fingers, toes, shoulders, neck, and back because they hurt. Sometimes cracking my fingers feels like it relieves pain in my neck/shoulder/back.

I also have balance/coordination issues: clumsiness, stumbling, sometimes leaning to one side while walking, and if I try to walk heel-to-toe like on a tightrope, I can’t stay balanced and sway to the sides. I sometimes have difficulty speaking/stuttering more than usual. I also get a ticklish/butterfly-like sensation in my hands and arms, especially when making a fist, and it can feel hard to make a fist because of that sensation. It can travel halfway up my arms. If I close my eyes and put my hands out in front of me with my palms up to try and keep them up, my left arm tends to drift downward and won’t stay in the same position.

My hands become mottled and tight with cold exposure, like cold weather or washing my hands with cold water, then turn purplish/reddish-blue rather than completely white. My veins become more pronounced/visible when this happens. My feet also turn purple/reddish-blue in the shower. I also get random single hive-like raised bumps in different areas. They usually start itchy, sometimes with a burning/pinching feeling, and then can darken and stay in the same spot for days before fading.

Since around January 2026, I’ve had ear symptoms including tinnitus/ringing, ear fullness/pressure, and weird popping/crackling in the left ear. The popping/fullness improved and may have been from a foreign object in my left ear, but it resolved before ENT so I never got a clear answer. My ears still itch and sometimes hurt. I’ve noticed especially in hot temperatures my left ear, where I had the popping/fullness before, will hurt really badly and the left side of my head will start to hurt too and I get a headache. My nose will also get a bit stuffy, but it’s not allergies from outside or something; it seems triggered by heat. ENT also mentioned possible auditory and vision processing disorder because I’ve been having trouble understanding what people are saying or what I’m looking at. For example, one of my jobs is cleaning, and I saw someone with a similar color pattern to a duster we use and was fully convinced I saw our big metal cleaning carts right outside the door with a duster showing, but it was actually a man with similar colored clothing. Audiogram was mostly normal except mildly decreased cochlear function, which they said may contribute to tinnitus. ENT also noted extra jaw movement, and it hurt when she pressed near my jaw while I opened my mouth.

I also have dry/red eyes especially in the inner corners that feel like a piece of sand is in there or something, occasional dry mouth, light sensitivity, and the balance/coordination issues mentioned above.

For background, I have PCOS and mild insulin resistance. I had elevated testosterone in Dec 2023 and insulin around 15–15.6. I was prescribed metformin and Yaz in the past but didn’t take either consistently and stopped Yaz and metformin a long time ago. I’ve had irregular periods since my teens. I started my period around age 9, initially regular/heavy, then around age 15 they became irregular, including skipping up to 9 months, sometimes monthly then skipping again, or bleeding for months. I get flu-like symptoms with almost every period, including cough, low-grade fever, lots of clear mucus, and sore throat.

I’ve also been diagnosed with IBS. I have chronic pelvic pain and endometriosis has been suspected. I’ve had pelvic/bladder issues since around April 2024 or possibly longer. Urinary urgency is the most consistent symptom, but the rest fluctuates, including bladder leakage, urinary frequency, stress incontinence, urge followed by leaking, feeling unable to hold urine, and dull/contracting pain with urination. I had achey pain in the vaginal canal on and off for a few months, but that mostly improved, though I sometimes feel soreness when sitting a certain way. Antibiotics didn’t help and it didn’t feel like a UTI. Symptoms may be worse around my cycle, and I’ve had deep vaginal/pelvic pain when sitting.

Workup so far: ANA positive 1:80, HLA-B27 positive, low vitamin D. Thyroid, anemia, diabetes, Lyme, and CRP were reportedly normal/negative, though CRP was checked when I wasn’t in a flare. CT scan and ultrasounds were normal. Back X-rays only showed mild scoliosis that I’ve had since childhood and was told is not clinically significant. No arthritis was seen on X-ray, though my PCP suspected possible juvenile arthritis. I saw cardiology and wore a 48-hour heart monitor; they didn’t find anything concerning except slightly low sleeping heart rate, but I didn’t have a typical episode while wearing it.

My questions: Can ankylosing spondylitis/axial spondyloarthritis or HLA-B27-related disease cause cervical spine/craniovertebral instability or symptoms that feel neurological/autonomic? Has anyone had skull-base headaches, neck-position nausea/presyncope, tinnitus/hearing changes, balance issues, or limb symptoms related to cervical involvement?

TL;DR: 21F with rapid unintentional weight loss of about 60 lbs in 6 months, current weight fluctuating 120–127 lbs, recurrent near-fainting/dysautonomia-like episodes with heat intolerance, palpitations, sweating, blackening vision, nausea/vomiting, shortness of breath, tinnitus/hearing changes, and body temperature dysregulation. Also have chronic lifelong/worsening neck/back/shoulder pain, morning stiffness, head pains/headaches near the base of my skull/ear, hand/foot color changes due to temperature, balance/coordination issues, tinnitus/ear symptoms, dry/red eyes, occasional dry mouth, PCOS/insulin resistance, IBS, suspected endometriosis, urinary urgency/pelvic symptoms, positive ANA 1:80, HLA-B27 positive, and low vitamin D. Thyroid/anemia/diabetes/Lyme/CRP normal, CT/ultrasounds normal, 48-hour heart monitor normal but I did not have an episode while wearing it. Waiting for rheumatology and neurology.

Hi, I’m looking for advice or guidance on what direction to go in medically. I know this is a lot, but my biggest concerns are rapid unintentional weight loss and near-fainting/dysautonomia-like episodes, along with worsening multisystem symptoms that I’m not sure how to connect. I’m 21F.

Over the past year, I had rapid unintentional weight loss of about 60 lbs, going from around 176 lbs in March 2025 to about 124 lbs by September 2025. My current weight fluctuates between about 120–127 lbs. Around this same worsening period, I’ve also had chronic fatigue, brain fog, decreased appetite, persistent morning nausea, hair loss, generalized weakness/pain, easy bruising, decreased exercise tolerance, and random pinching/burning/itchy pains throughout my body.

I also get near-fainting/lightheaded episodes that my doctors have described as “dysautonomia/pre-syncope” episodes. They are sometimes triggered by heat and physical work, but other times they seem random, such as while walking around in a store or laying down in bed. During these episodes, I feel hot, get a sense of impending doom, palpitations, sweating, blackening vision, dizziness/vertigo, nausea/vomiting, shortness of breath, worsening tinnitus or temporary hearing loss, and feel like my body is about to give out. Lying down, cooling off, and vomiting usually help. I also have trouble regulating my body temperature most of the time; I am constantly either hot or freezing and can switch between both within minutes or even seconds. I’ve also noticed recently that I can get very nauseous when lying sideways on a breakroom chair with my legs over one arm and my back/neck pressed against the other arm. I also had one episode during sex where pressure was applied to my neck, and my right side suddenly tensed up and became very painful to move or do anything at all, while my left armpit/upper chest area started twitching that my partner could feel. I also sometimes feel a ticklish/butterfly-like sensation in my hands and arms, especially when making a fist. It can feel hard to make a fist because of that sensation, and it can travel halfway up my arms.

I went to cardiology and wore a 48-hour heart monitor, but they did not see much abnormal in the rhythm or anything concerning, aside from a slightly low heart rate while sleeping, which I don’t think was by much. I also did not have any of my typical episodes while wearing the monitor.

I’ve dealt with chronic symptoms since childhood. The earliest I can remember is around age 9, when I developed extreme shoulder pain that never fully went away. Over time, it turned into chronic pain throughout my life and has worsened significantly in recent years. I also have chronic neck/back/shoulder pain, morning stiffness that improves with movement, upper buttock/glute/thigh pain, intermittent thigh numbness, random calf tightness, intermittent twitching/muscle spasms around both shoulder blade/upper back areas, and head pains/headaches at the base of my skull near my ear that can feel throbbing, zapping, or stabbing. My hands also change color/tighten with cold, like in cold weather or even when washing my hands with cold water. They get splotchy-looking, not a complete color loss, and then turn purplish/reddish-blue. I’m extremely pale, so it’s easy to see, and I notice the veins in my hands become more pronounced and visible when this happens. I also notice my feet get purple/reddish-blue in the shower, and I’ve noticed I’m constantly clenching my toes until I become aware of it and stop, then it happens again.

I’ve had back X-rays that did not show anything significant besides slight scoliosis, which I’ve been told I’ve had since childhood and is mild enough to not be clinically important. No arthritis was seen on the X-ray, though my PCP suspected I may have had juvenile arthritis. I am constantly trying to crack parts of my body, like my fingers, toes, shoulders, neck, and back, especially because they are so painful. Sometimes I feel the need to crack my fingers to relieve the pains in my neck/shoulder/back, if that makes sense. I also sometimes experience a strange sensation where my head involuntarily jerks to the right side randomly. It feels almost tic-like, but it happens randomly and not consistently enough for me to call it a tic. I asked a friend if she noticed it while I was talking to her, but she said she didn’t, even though it felt to me like my head was jerking a lot.

Since around January 2026, I’ve had ear symptoms including tinnitus/ringing, ear fullness/pressure, and weird popping/crackling in the left ear. The popping and ear fullness have improved recently and could have been from a foreign object in my left ear at the time, but it resolved before my ENT appointment, so I never figured it out. My ears still itch, feel bothersome, and sometimes hurt a little. I saw an ENT, and they mentioned possible auditory and vision processing disorder. My audiogram was mostly normal except for mildly decreased cochlear function, which they said may be contributing to the tinnitus. The ENT also mentioned some extra movement in my jaw, and it was painful when she held her fingers to it and told me to open my mouth. I’ve also had worsening vision/possible vision processing issues, dry/red eyes especially in my inner corners, sometimes dry mouth, light sensitivity, balance and coordination problems like clumsiness, stumbling, sometimes leaning to one side while walking, and occasional difficulty speaking/stuttering more than usual. If I try to walk as if I’m walking on a tightrope, I cannot stay balanced and sway to the sides. My legs/calves also give out or buckle when walking often enough that I’ve noticed it as a problem.

I have PCOS and mild insulin resistance. Prior labs showed elevated testosterone at one point, with total testosterone 67 flagged high in Dec 2023, and insulin around 15–15.6. I was previously prescribed metformin and Yaz in the past, but I did not take either consistently and stopped Yaz a long time ago, so I don’t think they are major factors. I’ve had irregular periods since my teens. I started my period around age 9, initially with regular/heavy periods, then around age 15 they became irregular, including skipping for up to 9 months, sometimes monthly and then skipping again for months, or bleeding for months, which they say is from PCOS. Importantly, I get sick with flu-like symptoms almost every period, including cough, low-grade fever, a lot of clear mucus, and sore throat. I have also been diagnosed with IBS before. I have chronic pelvic/menstrual pain, and endometriosis has been suspected before. I’ve had pelvic/bladder issues since around April 2024, possibly longer. Urinary urgency is the most consistent urinary symptom, but the rest fluctuates and is not always present, including bladder leakage, urinary frequency, stress incontinence, urge followed by leaking, feeling unable to hold urine, and a dull/contracting pain when urinating. I had burning/pain in my vaginal canal for a few months on and off, but that has not happened in a while, Antibiotics were not helpful, and I did not feel like it was a UTI. Symptoms may be worse around my cycle, and I’ve also had deep vaginal/pelvic pain when sitting a certain way usually with my legs up.

Labs so far showed positive ANA 1:80, HLA-B27 positive, and low vitamin D, while thyroid, anemia, diabetes, Lyme, and CRP were reportedly normal/negative. My CRP was normal at the time of testing, but I was not in one of my flare-ups then. I’ve also had a CT scan that came back normal and ultrasounds that were normal. I’m wondering what doctors could make of this and what should be considered. I have a rheumatology appointment in August, I’m waiting for a sooner appointment, and I’m supposed to be referred to neurology soon.

Hi everyone. I’m not looking for a diagnosis, but I’m wondering if anyone here has experienced a similar combination of symptoms or had a workup that started like this. My biggest concerns are rapid unintentional weight loss and near-fainting/dysautonomia-like episodes, along with worsening multisystem symptoms that I’m not sure how to connect.

Over the past year, I lost about 60 lbs unintentionally, going from around 176 lbs in March 2025 to about 124 lbs by September 2025. My weight now fluctuates between about 120–127 lbs. Around the same time, I started having/worsening chronic fatigue, brain fog, decreased appetite, persistent morning nausea, hair loss, generalized weakness/pain, easy bruising, decreased exercise tolerance, and random pinching/burning/itchy pains throughout my body.

I also get recurrent near-fainting/lightheaded episodes that my doctors have described as possible “dysautonomia/pre-syncope.” They can be triggered by heat or physical work, but sometimes they seem random, like while walking around a store or laying down in bed. During these episodes, I feel suddenly hot and unwell, with a sense of impending doom, palpitations, sweating, blackening vision, dizziness/vertigo, nausea/vomiting, shortness of breath, worsening tinnitus or temporary hearing loss, and like my body is about to give out. Lying down, cooling off, and vomiting usually help. I also have trouble regulating my body temperature in general and can switch from hot to freezing within minutes or seconds.

I’ve also noticed nausea with certain positions, like lying sideways on a breakroom chair with my legs over one arm and my back/neck pressed against the other arm. I had one episode during an intimate moment where pressure was applied to my neck, and my right side suddenly tensed up and became extremely painful to move, while my left armpit/upper chest area started twitching enough that my partner could feel it. I also sometimes get a ticklish/butterfly-like sensation in my hands and arms, especially when making a fist, and it can feel hard to make a fist because of that sensation.

I did see cardiology and wore a 48-hour heart monitor. They didn’t find anything concerning rhythm-wise, aside from a slightly low heart rate while sleeping, but I also didn’t have one of my typical episodes while wearing it.

I’ve had chronic symptoms since childhood. The earliest I remember is around age 9, when I developed severe shoulder pain that never fully went away. Over time it turned into chronic neck/back/shoulder pain and has worsened in recent years. I also have morning stiffness that improves with movement, upper buttock/glute/thigh pain, intermittent thigh numbness, random calf tightness, intermittent twitching/muscle spasms around both shoulder blade/upper back areas, and head pains/headaches at the base of my skull near my ear that feel throbbing, zapping, or stabbing.

My hands also change color and feel tight with cold exposure, like cold weather or washing my hands with cold water. They get splotchy-looking and then turn purplish/reddish-blue, but not completely white. I’m very pale, so it’s easy to see, and my hand veins become more pronounced/visible when this happens. My feet also get purple/reddish-blue in the shower. I’ve also noticed I’m constantly clenching my toes until I become aware of it and stop, then it happens again.

I’ve had back X-rays that only showed slight scoliosis, which I’ve been told I’ve had since childhood and is mild enough to not matter clinically. No arthritis was seen on X-ray, although my PCP suspected I may have had juvenile arthritis. I constantly feel the need to crack parts of my body like my fingers, toes, shoulders, neck, and back because they hurt. Sometimes I feel like cracking my fingers relieves pain in my neck/shoulder/back. I also sometimes feel like my head involuntarily jerks to the right randomly. It feels tic-like, but it isn’t consistent enough for me to call it a tic. A friend said she didn’t notice it, even though it felt obvious to me.

Since around January 2026, I’ve had ear symptoms including tinnitus/ringing, ear fullness/pressure, and weird popping/crackling in my left ear. The popping/fullness improved and may have been from a foreign object in my left ear, but it resolved before my ENT appointment so I never got a clear answer. My ears still itch, feel bothersome, and sometimes hurt a little. ENT mentioned possible auditory and vision processing disorder. My audiogram was mostly normal except for mildly decreased cochlear function, which they said may contribute to tinnitus. ENT also noted extra jaw movement and pain when she pressed near my jaw while I opened my mouth.

I’ve also had worsening vision/possible vision processing issues, dry/red eyes especially in the inner corners, occasional dry mouth, light sensitivity, balance/coordination problems like clumsiness, stumbling, sometimes leaning to one side while walking, and occasional difficulty speaking/stuttering more than usual. If I try to walk heel-to-toe like on a tightrope, I can’t stay balanced and sway to the sides. My legs/calves also give out or buckle while walking often enough that I’ve noticed it as a problem.

For background, I have PCOS and mild insulin resistance. I was prescribed metformin and Yaz in the past, but I didn’t take either consistently and stopped Yaz and the metformin a long time ago, so I don’t think they explain this. I’ve had irregular periods since my teens. I started my period around age 9, initially regular/heavy, then around age 15 they became irregular with skipped periods up to 9 months, sometimes monthly then skipping again, or bleeding for months. This has been attributed to PCOS. I also get flu-like symptoms with almost every period, including cough, low-grade fever, lots of clear mucus, and sore throat.

I’ve also been diagnosed with IBS before. I have chronic pelvic/menstrual pain, and endometriosis has been suspected. I’ve had pelvic/bladder issues since around April 2024 or possibly longer. Urinary urgency is the most consistent symptom, but the rest fluctuates, including bladder leakage, frequency, stress incontinence, urge followed by leaking, feeling unable to hold urine, and dull/contracting pain with urination. I had burning/pain in the vaginal canal on and off for a few months, but that has mostly improved, though I sometimes feel soreness when sitting a certain way. Antibiotics didn’t help and it didn’t feel like a UTI. Symptoms may be worse around my cycle, and I’ve had deep vaginal/pelvic pain when sitting.

Labs/workup so far: positive ANA 1:80, HLA-B27 positive, low vitamin D, normal thyroid/anemia/diabetes testing, negative Lyme, normal CRP at the time of testing, though I wasn’t in a flare then. CT scan and ultrasounds were normal. I’m waiting for rheumatology, trying to get a sooner appointment, and I’m supposed to be referred to neurology.

Has anyone had a similar mix of dysautonomia-like episodes, weight loss, chronic pain/stiffness and been diagnoses with an autoimmune disorder, and if you have what were you diagnosed with?

Thank you

Hi, I’m looking for advice or guidance on what direction to go in medically. I know this is a lot and I will bold important parts, but my biggest concerns are my rapid unintentional weight loss and near-fainting/dysautonomia like episodes, along with worsening multisystem symptoms that I’m not sure how to connect. I’m 21F.

Over the past year, I had rapid unintentional weight loss of about 60 lbs, going from around 176 lbs in March 2025 to about 124 lbs by September 2025, and my current weight fluctuates between about 120–127 lbs weekly. Around this worsening period, I’ve also had chronic fatigue, brain fog, decreased appetite, persistent morning nausea, hair loss, generalized weakness/pain, easy bruising, decreased exercise tolerance, and random pinching/burning/itchy pains throughout my body.

I also get near-fainting/lightheaded episodes my doctors have described as “dysautonomia, pre-syncope” episodes. They are sometimes triggered by heat and physical work and other times seem random, like walking around in the store. During episodes, I feel hot with a sense of impending doom, palpitations, sweating, blackening vision, dizziness/vertigo, nausea/vomiting, shortness of breath, worsening tinnitus or temporary hearing loss, and like my body is about to give out, and according to witness I get very pale. Lying down, cooling off, and vomiting usually help. I also cannot regulate my body temperature most of the time; I am constantly either hot or freezing, and I can switch between both within minutes or seconds on and off. I’ve also noticed recently I can get very nauseous when lying sideways on a breakroom chair with my legs over one arm of the chair and my back/neck pressed against the other arm, with the chair itself facing forward. This has been happening recently every time I'm on my break at work which is how I figured out the correlation.

I went to cardiology and wore a 48-hour heart monitor, but they did not see much abnormal in the rhythm of my heart or anything concerning, aside from a slightly low heart rate probably while sleeping, which I don’t think was by much. I also did not have any of my typical episodes while wearing the monitor.

I’ve dealt with chronic symptoms since childhood; the earliest I can remember is around age 9, when I developed extreme right shoulder/neck pain that never fully went away. Over time it turned into chronic pain throughout my life, and it has worsened significantly in recent years. I also have chronic neck/back/shoulder pain, morning stiffness that improves with movement, upper buttock/glute/thigh pain, intermittent thigh numbness, random calf tightness, and hand color changes/tightness with cold, like in cold weather or even washing my hands with cold water. My hands get splotchy-looking, not a complete color loss, and then they turn purplish/reddish-blue. I’m also extremely pale, so it’s easy to see. I notice when this happens that the veins in my hands tend to get more pronounced and visible. I also notice my feet get purple/reddish/blue when I am in the shower, and I've also noticed I'm constantly clenching my toes until I become hyperaware of it and stop until it happens again. I sometimes notice myself leaning onto the side of my foot when standing instead of having my foot flat normally as well. I’ve had back X-rays that did not show anything significant besides slight scoliosis, which I’ve been told I’ve had since childhood and that it is mild enough to not be clinically important. No arthritis was seen on the X-ray, my PCP suspected I may have had juvenile arthritis. I am constantly trying to crack every part of my body, like my fingers, toes, shoulders, neck, and back, especially because they are so painful. Sometimes I feel the need to crack my fingers to relieve the pains in my neck/shoulder/back, if that makes sense. I also sometimes experience a strange sensation where my head involuntarily jerks to the right side randomly. It feels almost tic-like, but it happens randomly and not consistently enough for me to call it a tic. I asked a friend if she noticed it while I was talking to her, but she said she didn’t, even though it felt to me like my head was jerking a lot.

Since around January 2026, I’ve had ear symptoms including tinnitus/ringing, ear fullness/pressure, not being able to hear/understand people, and weird popping/crackling, though the popping and ear fullness have improved recently and could have been from a foreign object in my left ear causing the popping at the time, but it resolved before my ENT appointment so I honestly never figured it out. My ears still itch, feel bothersome, and sometimes hurt a little, but I also get small stabbing-shocking pains in my ears like I do all over my body. I saw an ENT, and they mentioned possible auditory and vision processing disorder; my audiogram was mostly normal except for mildly decreased cochlear function, which they said may be contributing to the tinnitus. She did also mention some extra movement in my jaw and it was painful when she held her fingers to it and told me to open my mouth. I’ve also had worsening vision/possible vision processing issues, dry/red eyes especially in my inner corners, dry mouth, light sensitivity, balance and coordination problems like clumsiness, (hitting my head on things above me, tripping, running into poles/door frames I can clearly see are in front of me) stumbling, sometimes leaning to one side while walking with my feet sometimes going over the other like im crossing them by accident, and what feels like occasional difficulty speaking/stuttering more than usual. I also don’t know if this matters, but if I try to walk as if I’m walking on a tightrope, I cannot stay balanced and sway over to the sides, and my legs/calves give out or buckle when walking often enough that I noticed it to be a bit of a problem.

I have PMOS (PCOS, yay name change!) and mild insulin resistance; prior labs showed elevated testosterone at one point, with total testosterone 67 flagged high in Dec 2023, and insulin around 15–15.6. I was previously prescribed metformin and Yaz in the past, but I did not take either consistently and stopped Yaz a long time ago, so I don’t think they are major factors. I’ve had irregular periods since my teens: I started my period around age 9, initially regular/heavy periods, then around age 15 they became irregular, including skipping for up to 9 months, sometimes monthly and then skipping again for months, or bleeding for months, which they say is from PCOS. Importantly, I get sick with flu-like symptoms almost every period, including cough, low-grade fever, a lot of clear mucus, and sore throat. I have also been diagnosed with IBS before. I have chronic pelvic/menstrual pain, and endometriosis has been suspected before. I’ve had pelvic/bladder issues since around April 2024, possibly longer. Urinary urgency is the most consistent urinary symptom, but the rest fluctuates and is not always present, including bladder leakage, urinary frequency, stress incontinence, urge followed by leaking, feeling unable to hold urine, and a dull/contracting pain when urinating. I had burning/pain in my vaginal canal for a few months on and off, but that has not happened in a while, though it does sometimes feel a bit sore when sitting a certain way. Antibiotics were not helpful, and I did not feel like it was ever a UTI. Symptoms may be worse around my cycle.

Labs so far showed positive ANA 1:80, HLA-B27 positive, and low vitamin D, while thyroid, anemia, diabetes, Lyme, and CRP were normal/negative. My CRP was normal at the time of testing, but I was not in one of my "flare-ups" then. I’ve also had a CT scan that came back normal and ultrasounds (abdominal and transvaginal) that were normal besides PCOS. I’m wondering what other doctors could make of this and what should be considered. I have a rheumatology appointment in August, I’m waiting for a sooner appointment, and I’m supposed to be getting referred to neurology soon.