Yes

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.

Sorry for your discomfort.😥

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.

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

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

Lower back pain🙁 with or without excercise

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.

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?

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

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

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

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

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

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

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.

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

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

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.

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

Yes.....

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

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.

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.

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

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.

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.

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.

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.

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

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 😞

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.

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.

Acid reflux maybe

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.

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

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

Yes

Yes

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.

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

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

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. 💕

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

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.

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.

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

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

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

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

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

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

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

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

My bone marrow being dried out.

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!

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.

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.

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

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.

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

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.

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.... 🤔

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.

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.

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

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

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

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

Yes. So so many

Quite a few

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

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

Yes

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.

My vertigo and random nausea 😭 Its been a few years

I was diagnosed with sle lupus

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.

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.

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

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

Geneticist and immunologist are game changers!!

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.

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

Abnormal heart rate ✋

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.

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

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

Migraines

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

Random sharp pain in one ear canal

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

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

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

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

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.

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.

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.

Yes everything I go to the Dr.

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

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

Yep loads

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

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

I can't digest most foods properly.

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.

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.

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

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

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

All of my symptoms, for literally 10 years

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)

Yes. My randomized low grade fevers.

Yes, my unbearable headaches chest and kidney pain

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

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.

Many

Yes

Or just assume it's only mental illness

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

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

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!!

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...

Yes,

my nausea!!

Stomach issues

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

The fact I’m always tired.

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. 😓

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.

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.

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

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.

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.

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.

Dozens

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. 😊

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

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.

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.

Ok

💕