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564d

Ever have a symptom no one could tie to anything?

Top reply
    • jaesun

      253d

      i lost 16 pounds, and all the doctors ive met with (general primary, urologist/ ob, & 2 urgent care docs) all have literally said “i dont know, thats weird” and never ran any tests, until i mentioned it again but with the inclusion of involuntary vomiting symptom, i get a CT next week. im just frustrated and tired because ive been arguing with them for literally the past 4-5 months that i have the issue and not just in my head

    • jaesun

      253d

      i lost 16 pounds, and all the doctors ive met with (general primary, urologist/ ob, & 2 urgent care docs) all have literally said “i dont know, thats weird” and never ran any tests, until i mentioned it again but with the inclusion of involuntary vomiting symptom, i get a CT next week. im just frustrated and tired because ive been arguing with them for literally the past 4-5 months that i have the issue and not just in my head

    • Luciano

      256d

      💕

    • Luciano

      256d

      Ok

    • SeerClub

      263d

      Yeah… my back and legs twitch if I stay still. This doesn’t happen in my sleep though. It has caused me serious walking problems and comes and goes so it’s never ever consistent. The first two times it happened it was six months of having to use a wheel chair. Now it’s typically shorter but that’s only if I take the time to rest and not do physical activity (back then I was a high performing athlete). I always called them my stutter steps but it’s started happening in other places in my body now and it’s more frequent but for shorter times. Every doctor has said it’s just my pots causing my body to decide between my legs and my vital organs but I’ve also never heard of this happening to another person with POTS.

    • CatherineDerry

      263d

      It took me YEARS to find a doctor who listened to me about my back pain and took it seriously. She ordered tests and I got diagnosed with several problems.

    • cupcake1234

      450d

      If I get really nervous I feel so sick 😥but I'm OK now sort of ❤️

      • FTW

        450d

        @cupcake1234 An old boss of mine would get the runs if he got that way. Not many knew about it. We had some pretty good heart to heart talks about our mental health issues.

    • SwordInTheDarkness

      451d

      Late last year, I was in and out of the ER with pain in my leg that no one seemed to believe was real. It was real, but it turned out it was due more to anxiety as a result of what my new psychiatrist recognized as the first signs of BPII, than to any injury. It's a horrible feeling to be hurting with no physical evidence as to why. I was uninsured last year (some BS happened during re-enrollment at the start of 2022, long story), and ER doctors thought I was just trying to get drugs. I'm very fortunate, though: this year's insurance kicked in just in time to get me proper help. Now I have a whole team of good docs on my side. 😊

    • Ryan310

      451d

      Dozens

    • PercyKourage

      451d

      I have random bouts of time that I just ✨ forget✨ everything. I'll realize it's been an hour and I have no idea what I did during that time. It's not just not doing anything and staring off into space, I work, drive, clean, cook, eat, and live during these periods, but suddenly I have no idea what I did, when I did it, or when I started to zone. My psychs can't figure it out.

    • Meeeeeeeeeeeeeee

      452d

      Tired all the time. The professionals brush it off as 'probably something to do with your conditions or a side effect of your tablets'. I just want to feel properly awake.

    • Bakon

      453d

      I have had issues for years with what I describe as electric shock and my new doctor finally said she thinks it could be narcolepsy so we're getting some tests done. I am so relieved that I finally have any lead at all. I was almost fired from an old job because I missed work too much due to extreme pain and not being able to move and I have had so many other issues like this.

    • Katharina

      454d

      Tonsil stones for me but no one’s been to pin down the chronic stones so it’s my guess it’s a milk sensitivity and I’m trying to experiment

    • BoneDustWoman

      455d

      Yep, I get these flushes on my ears and cheeks, usually just one side at a time. They don't itch, but they're significantly warmer than the rest of my body. One of my coworkers gets them too, but neither of us knows why it happens.

    • Atheris

      456d

      Yes! I used to be obsessed with television shows like Mystery Diagnosis. They have me hope that good doctors are still out there if you just keep looking. Never take no for an answer and always keep advocating for yourself. No one knows your body better that you.

    • TeacupMouse

      456d

      Yes, my physical feeling of hunger vanished in August 2021 and it never came back. 😓 Unexplained weight loss, and they reckoned it was just stress or an ED. But I wasn't stressed, I don't have an ED, I think it may be vagus nerve related tbh maybe it got damaged. But no one believes me when I say I never feel hungry, I can't even remember what it feels like now. 😓

      • Bakon

        453d

        @TeacupMouse one of my medications replaced the feeling of hunger with nausea for a while. I still get it sometimes it's annoying because I also have blood sugar issues.

      • Atheris

        456d

        @TeacupMouse seriously? I don't feel hungry often myself. Most times I eat because my SO puts food in front of me. I generally go from fine to incapacitating migraine due to low blood sugar without the actual "feeling hungry" part. I do occasionally but it's hit and miss.

    • IAng

      456d

      The fact I’m always tired.

    • Lamunchkin

      457d

      Lower back pain and migraines. Wait one more low iron deficiency.

    • ZeePea

      469d

      Stomach issues

    • runawayren

      469d

      my nausea!!

    • SerenaS

      470d

      Yes,

    • faustmare

      470d

      I'd always felt dizzy when standing up, ever since I was a child. I never brought it up to anybody though, because not only did no one see it when it happened, but I knew that no one wouod be able to tell me why it was happening, or be able to fix it. Later, like later meaning last year, I finally did my own research and realized that scoliosis causes dizziness when simply standing up. Boy oh boy did I realize how much I'd been gaslit all my life about my pain and health...

    • Marjo

      471d

      Yes and it happens all the time! This is why you need to be your own Advocate! Keep pursuing until you find an answer for your symptom!! I’m the perfect example of a person who presents abnormally! It actually started when I presented with a “Text Book” case of the Measles! Since then I have had so many Health problems that I could write a small novel or present as a Cat with 9 lives!!

    • EliteLexy

      472d

      At 40 years old, I have finally been diagnosed with Conversion Disorder. Everyone thought it was just epilepsy. Turns out, I may have never had Epilepsy or only as a very young child

    • Kadair

      472d

      Yes! Recently was just told my episodes were from my GAD. Just a rare form of my body shutting down.

    • SkylerRose

      474d

      Or just assume it's only mental illness

    • MidlightTheNightFury

      475d

      Yes

    • Pain_Warrior89

      477d

      Many

    • Hamster99

      477d

      Got sent to specialist after specialist bc they all thought my array of symptoms weren't tied together... last year I got diagnosed with POTS and they're 90% sure I have EDS so I am on a 3 year wait list to see a Dr to get the gene test.

      • Marjo

        471d

        @Hamster99 please share your diagnosis abbreviations! It’s important for others to be able to understand and know what symptoms you experienced! It may prevent someone from seeking continued medical interventions!!

    • CSweet94

      479d

      Digestive Issues…actually tied to my Bipolar Disorder 🤦🏻‍♀️

    • PickleNew

      479d

      Yes, my unbearable headaches chest and kidney pain

    • kateafranklin

      479d

      Yes. My randomized low grade fevers.

    • lasaaagna

      480d

      not one specific thing but I get paranoid about everything bc I never know what is an issue and what isn’t, especially because of the complete lack of resources for things like swyer syndrome so I never know what’s going on with me? I get made fun of for it by my family and stuff but I find this quite hurtful tbh (because yeah maybe being worried about a slight bump on my leg sounds stupid now that I say it but they said the same thing when I was worried I didn’t have my period and turns out I have a rare disorder with a high chance of cancer so)

    • Belleromeo

      480d

      All of my symptoms, for literally 10 years

    • Mysteria

      482d

      Whenever I drink any alcohol I get a deep burning pain in my arms and legs that makes it almsot unbearable and no one has figured out why. At least I’ll stay sober lol

    • Starsunmoon

      482d

      I get terrible pains in my ribs, it is twice as painful as breaking a bone. All my other issues make it worse, if I’m hungry it comes on, if my IBS flares up it comes on, and I just can’t understand what causes these pains

    • AlwaysTiredPerson

      482d

      Oh yeah. That's why I'm diagnosed with Chronic Fatigue. They don't know what's going on with me 😥

    • LilyUnicorn

      482d

      All of my conditions are made ten times worse by my nerve damage in my back. Which they didn't realize until last year. Heart, stomach, back, migraines, esophagus.

    • Froggo12

      482d

      When I was younger (16-17), in gym and stuff, if I ran or worked out for more than 10 minutes straight my knees would start to pop and shift out of place to the point where I had to hit them to get them back. It happened some in middle school as well but not as bad. I went to multiple doctors and they couldn't figure anything out. It still happens if I run too much up to this day.

    • Ash.G

      488d

      I can't digest most foods properly.

      • Ash.G

        488d

        @Ash.G I also have unexplained severe sensory problems, joint issues (but they don't really dislocate as far as I know.) I have also fainted a few times.

        • Magpie42

          472d

          @Ash.G sounds a lot like EDS. I have it but don't dislocate. It isn't a requirement for dx.

    • MysticSpork

      488d

      I have complications with my kidneys, and no one can figure out why. Urologist just told me to drink more water. 😑😭

    • Ashcookie

      489d

      I feel I do but haven't seen a professional to say this

    • MarVell84

      489d

      Yep loads

    • avian

      504d

      every symptom of mine is a nightmare 😔 they're all really intermingled with each other and it's impossible to tell what's causing what. i have fibro and ptsd and other stuff that makes it impossible to know where pain comes from or insomnia or just. anything

    • MerlinTheWizard

      505d

      I have headaches all the time. I have no idea what the cause is....stress maybe???

    • Pixxy

      505d

      Yes everything I go to the Dr.

    • Olivebutter2236

      507d

      Hypothyroidism has some incredibly strange symptoms sometimes that I never knew were related until I started medicine for it and those weird things went away too. Since your thyroid controls most regulation in your body all sorts of things can get funky.

    • Keisha

      508d

      joint and muscle pain, as well as a headache in the same spot all the time. my doctors always talk about getting a head scan but to no avail.

      • Keisha

        508d

        @Keisha i also get cramps on the back of my skull behind my ear, and it feels like my ears also cramp every so often. i’ve told a lot of doctors and specialists about this but no one has an answer for me

    • Sillymongoose

      509d

      Whenever my heart rate gets too high during cardio (running and hiking up hills are the WORST) I get pain in my shoulder. Not the joint, but the muscle between my neck and shoulder joint above the clavicles. It feels like air bubbles are forcing their way though the fibers of my muscle. No doctor I’ve spoken to about it has heard of that, so I just avoid too much cardio.

    • str8outtacollagen

      509d

      Ever so often I get an electric shock sensation in my armpits ⚡️

    • Denotchka

      509d

      Sounds like low blood pressure. Be careful with your liquids and check your blood pressure.

    • Maverick_Meza

      509d

      My ability to nearly faint when I try to stand up, which looks bad as a highly competitive martial artist

      • Magpie42

        472d

        @Maverick_Meza or POTS.

      • Keisha

        508d

        @Maverick_Meza that sounds like severe anemia, i recommend getting bloodwork done

    • Yenn

      509d

      Throbbing leg pains down my shins. They feel like bad growing pains, but I’m obvs not growing!!

      • frog_of_destiny

        509d

        @Yenn this could be a lot of things, but i had the exact same symptoms for years until i got medicated for it, it turned out to be an autoimmune disease in my hip called crmo. i really doubt it’s that because it’s a last case diagnosis, but it could be a bone tumor or something like that? i’m not super sure, but i definetly get what your going through, i literally was having tests done since like 4th grade on my right hip bc of this, it’s absolutely terrible, and i hope you get feeling better!!!! ice works for me, i put it on my hip because that’s the source of the pain, so you could try that? heating pads are also amazing. if you put a pillow between your legs when you sleep at night you can sleep a bit better too i found. this might not work, but take care of yourself, stay safe!!!

    • Foxtail

      509d

      Random sharp pain in one ear canal

    • lifeismid

      509d

      Joint pain/joint effusion in both knees ...it was because I apparently had parvovirus at some point

    • JessJesse

      509d

      Migraines

    • Fiddlesticks

      509d

      Ever since I was born really. Still no luck with a lot of things.

    • jqlcat

      509d

      I've been having problems with getting my period and I haven't had it in over a year and my doctor literally will not do anything, so I'm forced to like figure out what it could be and I'm thinking pcos. she gave me progesterone one time and it worked for like 5 days then I haven't had my period since

    • Ziggy_B

      509d

      Stomach pains every time I would eat and sometimes randomly but mostly when I ate. I was 10 years old and terrified to eat so I lost a lot of weight and doctors would say I was faking it to get out of school and ended up traumatized from going to hospitals for blood tests and passed out when getting blood drawn, ever since then I pass out every time I have a needle in my arms. It also gave me an ED but yeah.

    • Keeby

      509d

      Abnormal heart rate ✋

    • enjoyskyblue

      510d

      Deep aching pain in my collarbone. No known cause, been there for YEARS, never truly goes away.

    • tigershark98

      510d

      When I was a teenager, I had this pain that would start in the middle of my chest, a bit to the left, then over the course of several minutes would often spread up the left side of my neck and down my left arm. Sometimes, it would spread down my left leg as well. I told a doctor after this had happened many times, and was immediately told “it’s anxiety.” I was naive and believed her, and continued experiencing the pain for a year, eventually realizing that the “it’s anxiety” smelled like bullshit. I then had a Transient Ischemic Attack in my sleep at age 19. I brushed it off as unimportant. Then I began having severe heart palpitations while driving that would last for several minutes straight, “knocked the wind out of me”, and usually caused near-fainting. On one occasion a car was riding my ass when they started, I tried to keep driving but then had to abruptly pull into the ditch, slam the breaks and slumped over the steering wheel the second as I was off the road. I remained slumped over the steering wheel trying to breathe with painful, rapid palpitations for the next several minutes. This happened many times over the course of a year. I brushed it off again because I read that “heart palpitations are harmless” so I didn’t think to worry about it. I found out recently that my QT length on my ECG from the TIA years ago was 441, which isn’t extremely high but is seemingly getting into the abnormal range? My mom has DVT & very high risk of stroke (bloodthinners every day since age 30), my sister has an enlarged heart, Neurocardiogenic Syncope, and other heart issues, mom also had a syncope disorder as a teenager. I had symptoms resembling POTS for years as a teenager, but again had brushed it off as either eating-disorder related or as nothing, especially compared to my sister’s severe syncope disorder that was destroying her life. I have started to think that maybe these events could be connected. Probably something minor, if they are.

    • Tess123

      511d

      Geneticist and immunologist are game changers!!

    • colacola

      511d

      Yep. Still struggling to figure out the cause of my constant tiredness.

    • I.am.Lucy

      511d

      Yeah for a long long time. Got a name for it after 8years.

    • J.ess

      511d

      My heart physically hurts. It feels like it's being rung out like a wet towel while also being punched. But it's not heart burn, nor did they see anything wrong with my heart.

    • HM74

      525d

      I always wondered why I just couldn't sit still. Or focus on things that weren't my top interests, or why I would NEVER sleep, or why I was such a 'quitter'. I spent a good 10 years agonising over the simple questions of "why am I so weird? Am I broken? Is there something wrong with me?" until I got diagnosed with adhd 😕 then it all made so much more sense.

    • DoveCuster

      525d

      I was diagnosed with sle lupus

    • Locien

      525d

      My vertigo and random nausea 😭 Its been a few years

    • BeaJay

      525d

      I had a series of vague symptoms from the time I was about 18 years old. I got diagnosed with lots of different things that never really fit or the tests were negative or inconclusive. Then shortly after I turned 39, I thought I had had a stroke. I had just started seeing a new doctor and she sent me for a MRI right away then to a neurologist. The neurologist did more testing and finally I got conclusive results. I had multiple sclerosis. I've been living with my diagnosis for 16 years now. I would never wish MS on anybody but I was so happy to get a name to put on all these vague symptoms.

    • SecondChance

      525d

      Yes

    • WiccanWitch

      525d

      Being to sensitive, now I know why but always told bot to be so emotional.

    • KiwiPlaneDino

      527d

      just random sudden shots of pain. like randomly part of my hip will just spasm into pain for 10 seconds and go away in random parts of my body

    • PDKB_Angels

      527d

      Quite a few

    • sophieluna

      529d

      Yes. So so many

    • 2ndbreakfastclub

      530d

      Sometimes my hands will randomly go numb- like really numb, for around 10 min or so at a time- or their half numb ans it feels like a tendon from my wrist is preventing movement like trying to clench your fist, it's really painfull and stays for about 10 ish mins or so several times a day, it's wierd

    • MaryLemon

      532d

      Yep. Currently dealing with that. Fingers crossed they'll find an answer eventually 🤞

    • hurt_copain

      533d

      Chronic fatigue. Everyone thought I was being dramatic, or I just didn't sleep, or even 'too young to be tired'.

    • Leopuppy

      533d

      In k-7th I had major anger issues and couldn't pay attention my mom and dad would always call me lazy or something, figured out I have adhd and bipolar and now i know how to handle myself

    • Tracks

      533d

      Yes, I have spina bifida and in a wheelchair, but 15 years ago I was in an accident and hit the back of my neck. Now my right hand shakes or has tremors when I get emotional, cold, try moving quickly ie trying to catch something. There are other things, but this is the main thing that I haven’t been diagnosed. I know it has to do with getting a blow to the head and bruising my brain/nerves getting bruised. I’m really curious to try and figure out what this is called tho.

    • witchykitty

      533d

      Yes I have! It took me 8 years and a torturous medical test that I will never do again no matter what the doctor's say to me, to finally get an actual diagnosis for my stomach problems. And I have plenty of other symptoms that have yet to be explained even though I practically live at the doctor's office. I'm a medical zebra.

      • A424

        531d

        @witchykitty can I ask what the diagnosis was? I also have stomach issues

    • steph2022

      533d

      I have one. .... my shoulders. Mainly left. Pops out . Hurts ... but I sort it at home.. and fine after. Another thing. When I was a child I used to pass out when I cried because I wouldn't breath.... 🤔

      • Magpie42

        472d

        @steph2022 look into Ehlers-Danlos syndrome.

    • SourLemons

      533d

      i often get this really, really sharp and sudden stabbing pain in my chest, usually in the left side where you'd typically feel a heartbeat. my breath catches and inhaling hurts when it happens. no patterns for when it occurs, no warning signs either. i could go weeks without experiencing it or suffer it four times a day. i randomly came across an article about precordial catch syndrome, the description for which sounds awfully similar to what i have, but to this day i don't know. i'm not sure i'll ever really know.

      • meromeow

        526d

        @SourLemons ive experienced that off and ony whole life and precordial catch syndrome sounds pretty spot on

    • pianolover314

      534d

      I have muscle knots all over my body and are various sizes, they caused so much pain when I was running that doctor's thought I had fractures in both legs, docs were very confused after the bone scan, thought maybe comparison syndrome, then I was told I was just fat. The past two years I've worked with my rheumatologist and we haven't gotten squat

    • Shoyo1hinata

      534d

      One time I had a fever of 103°F I had really bad chest pains so I went to the doctor and they said I didn't have Covid19, strep throat, and the flu.

    • Nimah

      534d

      I have really bad leg pain, especially in my knees that no doctor can be bothered to figure out what it is.

    • Embers

      535d

      Yes. I have this pain in my side. It's right under my rib cage and can become unbearably painful. It has caused me nauseua at times and gotten so bad that I curled up and screamed in pain. They still aren't sure what it is even after ultra sounds, x-rays, etc.

      • Starsunmoon

        482d

        @Embers I have the exact same thing! It’s so unbearable and really hard to explain like oh sometimes I get this terrible pain in my ribs but it’s not a heart attack but I am unable to stand 😭

    • Tracks

      535d

      I developed this shake in my right arm after hitting my head in 2006. No one’s been able to diagnose me. I just know it’s brain damage.

    • TabbysMom

      537d

      Yes! I have severe neuropathy. I am not diabetic. Have some significant OA in my back but docs say not enough to cause neuropathy. So no "reason" for the neuropathy. With RA, RLS, FMS, I was sure I knew what pain is. Nope. I was wrong!

    • Rayningtigress

      538d

      My bone marrow being dried out.

    • bluejjayy

      538d

      Yes! I've spent the past 5+ years struggling with these random "episodes" where i would lightly dissociate, zone out, not be able to talk say much, then my limbs would all go very heavy/numb. It was not complete paralysis, as i could still feel my limbs, but they felt extremely heavy and I couldn't move them for about an hour. It would start it my legs and eventually move up to my head and arms. They are very few and far between (usually months between each episode) but every Doctor had never heard of them before

      • Olivebutter2236

        507d

        @bluejjayy also sounds a lot like cataplexy in narcolepsy.

        • Magpie42

          472d

          @Olivebutter2236 I agree.

      • bluejjayy

        538d

        @bluejjayy So sorry it sent before i finished! I eventually had a psychiatrist tell me they were called "Leaded Paralysis Episodes" and are a symptom of atypical depression. It is very rare and I am yet to find anyone else who suffers with this condition, please reach out if you have 💕

    • faexay

      538d

      Severe joint pain since I was 14. Doc told my mom I was lying for attention, she took me to another doctor who said it looked like rhumatoid arthritis but I'm too young for the dx. So not that they don't know so much as they don't believe me

      • Atheris

        456d

        @faexay Never take age as an exclusion. Biology is weird. It could be that doctors have legal or ethical reasons why they are not allowed to diagnose minors with some conditions

    • BeeOy

      540d

      sometimes i randomly feel really high, and my doctors don’t know what to say to that.

    • ItsErin

      550d

      I have low body temperature that is usually 34 and the doctors didn't believe me or my mother but now they've realised it's a symptom of CFS and Fibro

    • Pixxy

      550d

      Isn't that the name of the game with Mast cell activation.

    • mossbug

      550d

      why sometimes my chronic pain feels like inflammation but all the blood tests said there was none

    • Kittypop

      553d

      Oh yeah, don't even get me started...

    • KittyKat123

      555d

      Does anyone take gabapentin for fibro? Has it treated you well? No bad side effects? Can still go to work ok?

    • SeerClub

      555d

      I have a walking issue and have since I was around 12-13. My lower back would spasm and my (typically) right leg will kick out and I’ll lose balance. I was a high performing athlete, and was about to start training to be on the Olympic soccer team. Doctors didn’t believe me though and I was constantly told to “look at myself in the mirror before I go to bed and tell myself I can walk again.” Tried it a lot and it’s never worked. 10+ years now and I still have the issue and the twitching has gotten worse and now will happen all the time in my fingers and hands along with my legs. If I stay still for 5+ minutes it will kick up more where other people notice. Still haven’t found out what causes it but when it happens the only safe way to get around is a wheelchair… so I have a completely unconnected symptom to my diagnosed disorders that doctors still can’t figure out today and tell me it’s all in my head.

      • Atheris

        456d

        @SeerClub This may be totally wrong but have you tried drinking tonic water? I get very bad restless leg syndrome and one doctor suggested it. I don't know why quinine helps but it seems to.

      • Rowboat

        553d

        @SeerClub have you thought about a pinched nerve?

    • lostinbmore

      555d

      I have been suffering with mysterious nerve demyelination. My doctor said that I have the symptoms of a 70-year-old even though I'm only 50. I've had lumbar punctures, about 15 high contrast MRIs, X-rays, pet scans and on and on with no final diagnosis. The doctor said he is calling it atypical multiple sclerosis for lack of a better diagnosis. I don't have any of the markers of MS and all the testing has not revealed anything like lupus or Lyme disease or any of the other things that might be a cause of this.

      • Atheris

        456d

        @lostinbmore That sucks. Please don't stop searching. Make your doctors think outside the box.

    • strawberrydog

      555d

      I have recently been having lower leg and back pain and my mom is unable to get an appointment with my doctor :(

      • darkstarrynight

        510d

        @strawberrydog could be chronic pain tbh

    • mieu

      556d

      I'm still not sure what the episodes could have been but they were ruled non-epileptic, not nystagmus, and not tardive dyskinesia by a neurologist and labeled "convulsions", much more general by a psychiatrist. There was speculation this could be a side effect of abilify but I never got any real answers. The episodes seemed to be brought on by stress and driving (stressful) but that's all I know. I have never met anyone else with the same problem so any insight is appreciated. 💕

      • Atheris

        456d

        @mieu Vagus nerve issue?

    • infinityoncb

      556d

      Nausea. I get it while eating a lot, even if it’s just after one bite. It makes me dread having to eat.

      • Rowboat

        553d

        @infinityoncb look into MALS

    • AudaCity

      556d

      I had a lot of random issues for my whole life and just this week I had my Neuro psych eval and now we know it's Schizoaffective Disorder, along with some other mental illnesses that make my life do challenging

    • sageblanl

      556d

      My psychosis, no one in my family is diagnosed with much because they refuse to believe in mental health. I still struggle with seeing and hearing things, and another is not being able to stay awake.

    • Marry_Me

      556d

      Yes

    • Weneli

      557d

      Yes

    • Clockwise

      557d

      In school my teachers would diagnose me with developmental contive delay but I noticed signs of ADHD and autism

    • Waterlemon

      557d

      everyone told me I was super lazy. I got diagnosed with narcolepsy and now my doctor tells me to take naps. funny how things change lol

    • Jo420

      557d

      My bones and muscles ACHE all the time, it’s manageable for the most part with pain meds, making sure I walk, pot and icy hot but man does it suck. Ive also always had a very heavy, irregular period that makes me to to throw up and cry constantly anytime it’s happening. I’ve been to the doctor a few times for both the issues but I’m 20 and I have yet to find anyone to take me seriously. So it’s not necessarily that my symptoms can’t be tied to something and more so I can’t find a doctor to take me seriously considering my age. I had a doctor throw some possibilities out like arthritis or fibromyalgia but no clear answers.

      • Atheris

        456d

        @Jo420 Just keep demanding answers. Don't take no for an answer and eventually you will find a doctor that actually wants to do their job.

    • Brian513

      557d

      Acid reflux maybe

    • m0cha

      557d

      This is gross so warning, but I throw up in my mouth constantly. No clue what the problem is, it just happens a lot and my entire life. I’m always forced to swallow it down bc it’s so often and would be weird to constantly go to a bathroom to get rid of it.

      • Atheris

        456d

        @m0cha Do you know if you have a hiatal hernia? I do. Part of the stomach sits above the diaphragm instead of under it so stomach acid gets trapped. It sucks. You could also have a weakened cardiac sphincter (the opening to the top of the stomach).

      • Rowboat

        553d

        @m0cha sound like gerd/acid reflux

    • hydroepilepic21

      557d

      Its not really a symptom but when I'm sick I dont run a fever and I don't really throw up but I feel like could when I'm sick.

      • Atheris

        456d

        @hydroepilepic21 could be a hypothalamus issue? Not regulating temp well can be scary

      • Magpie42

        472d

        @hydroepilepic21 I rarely ever have a fever. I was once in the hospital with sepsis and colitis and my temp never got over 99.

    • LaurElizabeth

      557d

      I was nauseous and vomiting daily for maybe a year or more - had several tests went to so many drs it has since stopped but I’m still not sure why - was every morning when I woke up was terrible 😞

    • Charlisa

      557d

      Dizziness. Nausea. Ringing in ears. Let the games begin lol

      • starrybun

        555d

        @Charlisa These can be related to migraine even if you get them without the head pain sometimes. 😥

    • HisWillNotMine

      558d

      Dysautonomia can have a variety of symptoms. This sounds like blood pooling/ Livedo Reticularis. Showering can cause the blood vessels to constrict (causing the purple splotches) and then when they warm back up and dilate, the area looks red and feels warm.

    • darkstarrynight

      558d

      I have this throat pain. (It's like a sore/dry throat type thing.) And it seems to be connected to my emotions. It gets worse when I sing or I'm upset and cry or something like that. But it also feels like it's healing sometimes, I'll feel this unique feeling/aura in my throat that makes me think it's getting better. I've had it for 4 years but the doctors think "it's all my head" cause they can't spot anything. Also I have post nasal drip and that also sucks.

    • Pisforpotato

      558d

      Yes, and unfortunately, this makes it harder to explain myself to people and even harder for them to believe me. It seems that if it isn’t labeled, according to some, it doesn’t exist. Very invalidating, confusing, and discouraging.

    • CherryJanell

      558d

      Literally almost everything in my body. I've had tingling in my hands and feet, sometimes lips. Pain in my upper arms, neck, super low back. Sensitive to the touch skin. Facial flushing. Heat sensitivity and cold sensitivity. No one can tell me anything.

    • mermaidap

      558d

      pins and needles through my arms, hands, feet, and legs every time i moved. it’s subsided a little now but it was weird

    • Olivebutter2236

      561d

      When I stand too long or when I shower my legs get purple and white and splotchy and sometimes my knees get hot and red and itchy. I don't have pots and no one has ever been able to tell me why this happens.

      • HisWillNotMine

        558d

        @Olivebutter2236 please see my comment below about Dysautonomia. I meant to tag you in it and it won't let me edit it.

    • canadaisntreal

      561d

      yeah. memory loss, at least the extent that i have, i guess? no doctor has ever seemed as concerned about it as i feel like they should, though. i guess they don’t live with my brain literally all the time or are even near me a lot. also i have some (fairly minor?) weird physical things. like i have had periods of my life (like a few months maybe? idk i don’t remember lol) where i have fairly frequent(?) very sudden, very heavy nosebleeds. just had one today for the first time in a while. also i have this thing that’s kinda hard to explain (also kinda comes in waves) where i have this occasional sudden sharp kinda stabbing pain near my ribs on one side. i can’t breathe during them at first because it hurts and inhaling makes it much worse. but it stops when i inhale deep enough? it only lasts for maybe 5 seconds? 10? it’s pretty hard to explain.

      • darkstarrynight

        558d

        @canadaisntreal omg the Rib thing. I have chronic pain. And what you described sounds like a pain spike.

    • Scribbling_Kitten

      561d

      I hate going to my doctor because I've had so many issues and no results. I called him and told him I have so many issues that I can't even really remember what they are and that I feel like my issues aren't being resolved. Well he basically said was I empathize with you, go get mental help. Basically blaming my issues on my mental disabilities. He didn't do all tests not meant for my age. He didn't do any genetic testing. I'm walking physical mental medical issue. They've heard my history. They know I'm a rarity, and not in a good way. I've had conditions not meant for my age. I was born 3 months premature and had complications with that. I'm so sick and tired of doctors blaming my mental disabilities, my ethnicity, my weight, my genetics. Don't blame those things until you can prove them. Like, show me the Carfax before even telling me that I need mental help. I'm already getting that, I need medical assistance. I hate doctors

      • Atheris

        456d

        @Scribbling_Kitten Yes! You are so right. I watch all the "medical mystery" shows because they give me hope that if I keep demanding answers someone will finally listen. There's Mystery Diagnosis, Netflix's Diagnosed, and TNT's Chasing the Cure. You never know when you will see someone just like you.

      • starrybun

        555d

        @Scribbling_Kitten I hear you and I'm sorry. 😥

    • SongbirdQueen01

      561d

      Yes.....

    • woodlandfolk

      561d

      No but my dentist found out that i had scalloped tounge and told me i needed to talk to a therapist about my anxiety

    • Azaria

      563d

      Yes I diagnosed with seizures when I was nine. Before that the doctors thought I was crazy. They did not know what they were talking about so I saw a professional. He quickly diagnosed me and said I wasn’t crazy.

    • KzooDiana

      563d

      Fatigue..... I'm constantly exhausted and can easily sleep all night, all day, and all night again but doctors can't find cause.

      • Atheris

        456d

        @KzooDiana I had an undiagnosed thyroid disorder. I was textbook hypothyroid but was actually extremely hyperthyroid. The reference range is so wide you could be really sick and still be "normal". By the time I fell out of range enough to be referred to a specialist, I was told to quit working out because I would have a heart attack.

      • pianolover314

        534d

        @KzooDiana I was in the same boat and then got diagnosed with ADHD and autism. I started taking Adderall and while I still have fatigue I'm no longer in bed all day everyday taking 3+ naps

        • Atheris

          456d

          @pianolover314 same. ADHD, ASD, PTSD, and thyroid disorder. My doctor tried to tell my mother I must have been doing illicit drugs. My mother replied "You'd have to be able to get out of bed to do drugs!"

    • Zebrapotato37659

      563d

      Yes, many symptoms and still no official diagnosis. Prayers to everyone!

    • Tess123

      563d

      Recurrent infections all my life. I was 36 and a pneumonia almost killed me. I was finally referred to an immunologist and after 6 months of failing vaccine challenges and ridiculously low igg numbers. I was diagnosed with common variable immune deficiency. I now use donor plasma weekly and it’s changed my life.

      • Atheris

        456d

        @Tess123 My friend had that! Took her years to get a diagnosis but once she was on weekly infusions it was amazing. I'd go over every Sunday to watch movies while she was hooked up and couldn't move

    • GhostEnby

      563d

      Yes, I finally got a diagnosis after 6 months of agonizing pain.

      • Xanadu750

        265d

        @GhostEnby 4 years for me then a self diagnosis and then finally find a private thoracic surgeon who officially diagnosed me🤗 I'm waiting for treatment now but everyday is agony and morphine doesn't touch the pain, even standing to make a quick coffee starts the pain😥

    • Kapyin

      564d

      the stomach pain i get when walking. that would be the slipping rib syndrome.

    • greychildvii

      564d

      Extreme bloating to where I look and feel 6 months pregnant all the time

      • Atheris

        456d

        @greychildvii I know I've seen this symptom in "Chasing the Cure". It was a 2019 series that used crowdsourcing to help diagnose rare disorders. The problem is damn paywalls. I can't even find an episode guide to tell you which episode it was. It's on YouTube for about $20. The most I can say is it was the first two episode. I hope this helps. 😕

      • chocolatetruffle

        474d

        @greychildvii hey, I have this exact same issue. It'll be 6 years of this in a month. I don't think I'll ever have answers at this point, I think I'm stuck with this for the rest of my life. It really sucks. I've developed gastroparesis and severe chronic constipation on top of it in the years since. Do you have any other GI issues with the bloating?

      • starrybun

        555d

        @greychildvii Do you think you might be accidentally ingesting gluten somehow? I see that you have Celiac disease too. It can be really tricky to manage.

    • DeepThinker99

      564d

      I wake up with severely swollen joints if I don’t get at least 10 hours of good quality sleep every night

    • kittykitty

      564d

      I have skin peeling and no doctor even knows what it is

      • Bre19

        263d

        @kittykitty that is very odd

    • EliteLexy

      564d

      Where do I start? Kidding! I will say, keep advocating for yourselves! The medical field is not all knowing and YOU know yourself best

      15

      • Bre19

        263d

        @EliteLexy yesss so true

    • Novathevibe

      564d

      Once I had air in my side. Not air in my organs... Air surround my intestines. But there was no perforations. At all!

      • Bre19

        263d

        @Novathevibe thats not good

      • Atheris

        456d

        @Novathevibe woah! Ever go diving?

    • AorticOwl980

      564d

      My headaches, and neck and back pain, I've had MRIs EKGs and no real information, i have another on Jan15 wish me luck Ig?

      • Bre19

        263d

        @AorticOwl980 I hope that you have some answers now

    • klazikel

      564d

      Yes, nerve and joint pain. I spent years in agony with no answers and finally a couple years ago I was diagnosed with joint hypermobility disorder. Ever since starting Naltrexone a couple of years ago, my nerve and joint pain has greatly decreased.

      10

      • sandboxjoints

        564d

        @klazikel omg i've had so much of this and i just recently realized my SI joint pain might be tied to hypermobility (i already knew i had multiple other hypermobile joints but didn't think much of it before)

    • Danyfi

      564d

      Lower back pain🙁 with or without excercise

      • Bre19

        263d

        @Danyfi I would go get that checked out

      • Bean69

        471d

        @Danyfi I Have That Because Of A Curve In My Spine (Scoliosis)

    • hydroepilepic21

      564d

      Maybe, I'm very complicated, sometimes drs don't even know what is going on.

      • gooomiho

        533d

        @hydroepilepic21 usully me

    • Roly

      564d

      I had the same symptoms and gain a lot of weight because of this and terrible back pain and knees and what has been working for me is getting on a diet program eating their foods and eating every 2 1/2 hours and so far I’m happy to report my ankles are back to normal I’ve lost 72lbs and my knees aren’t hurting anymore but my back still hurts. And I’m happy to report I’ve come off my meds blood pressure is also back to normal oh and all this without doing any exercises due to my back pain

      • BinoVert

        527d

        @Roly wow good for you. That is great that you have had so much success.

    • AA3

      564d

      Grew up being told my symptoms were me 'being lazy' or "it's just in my head". Finally just got a diagnosis while in the hospital on my 80th birthday. I was born with McArdle's Disease.

      60

      • Atheris

        456d

        @AA3 Congratulations! It's great to hear that persistence pays off. Even if does nothing more than give you a name it is validation

      • m__

        557d

        @AA3 w human

        • steph2022

          533d

          @m__ ain't no one person the same. Impossible to ever relate to someone 100% but we can try our best to show support. I wouldn't even say I'm human aahhah no one else looks like me. No one thinks like me. Talks like me. I'm something else lmaooo

    • maharahnee

      564d

      Sorry for your discomfort.😥

    • jellypeanut

      564d

      Yes! No one knows or understands why my body, specifically legs & ankles, get swollen, red, itchy, & start burning when I do light physical activity even such as walking. Every physician keeps saying may be circulatory but has never seen it before.

      • Waterlemon

        450d

        @jellypeanut this was happening to me and I figured it was just a part of my ehlers danlos syndrome. it’s super annoying though.

      • Birdies

        479d

        @jellypeanut I have PCS (Pelvic congestion syndrome) and this happens to me! It always gets worse at night and sometimes my feet turn purple, like purple purple

      • Wheelinlady

        527d

        @jellypeanut have you looked into CRPS?

      • SalineTurnip

        540d

        @jellypeanut there's also such a thing as an allergic reaction to exercise. Maybe look into that.

      • HisWillNotMine

        558d

        @jellypeanut look into Erythromelalgia

      • Andrer

        563d

        @jellypeanut check your kidneys, try this herb chancapiedra .

      • sandboxjoints

        564d

        @jellypeanut POTS/similar issues can cause blood to pool in the legs & those kinds of symptoms can worsen with anything that increases heart rate. maybe worth looking into if you haven't considered it yet? good luck on your journey :)

        • Valkar

          470d

          @sandboxjoints I wa thought to have pots or another heart related issue, but for me it was entirely blood flow so do get checked for blood flow/pressure issues <3

      • TexAss

        564d

        @jellypeanut If you are allergic or sensitive to nickel, there's likely a lot of foods high in nickel in your diet that may be causing this discomfort. Check out some of the lists online and try reducing those foods in your diet. It may take a while before you feel relief, but keep exercising and eating healthier foods for your body type.

        • ChronicIllnessBabe

          561d

          @TexAss omg ty for posting this 🙏

      • Raquel226

        564d

        @jellypeanut Do you know if you're retaining water in your legs? I've had the exact same thing and I was diagnosed with Chronic Venous Insufficiency. I hope this helps you.

    • Cin

      564d

      Yes

      • maharahnee

        564d

        @Cin Skin itch may be a sign of a food or drug sensitivity. I itch when I eat or take a med containing salycilates.😥

        • Redvelninja

          263d

          @maharahnee I itch if I'm stressed or nervous. So, staying grounded and destressing is important.

        • kateafranklin

          479d

          @maharahnee Or think about small fiber neuropathy if you itch all the time!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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night sweats

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palpitations

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Depression

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