Unexplained Symptoms: When Your Body Plays Tricks on You

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

💕

Ok

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.

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.

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. 😊

Dozens

All of them! I have some conditions diagnosed but the overarching illness is still a big "You're too complex". It's likely EDS but good luck finding anyone here willing to diagnose a young woman (or anyone!) with that.

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.

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 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.

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

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.

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.

The fact I’m always tired.

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

Stomach issues

my nausea!!

Yes,

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 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!!

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

Or just assume it's only mental illness

Yes

Many

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

Yes, my unbearable headaches chest and kidney pain

Yes. My randomized low grade fevers.

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)

All of my symptoms, for literally 10 years

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

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

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

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.

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.

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

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

Yep loads

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

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

Yes everything I go to the Dr.

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.

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.

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

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

Random sharp pain in one ear canal

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

Migraines

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

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

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.

Abnormal heart rate ✋

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

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.

Geneticist and immunologist are game changers!!

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

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

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.

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.

I was diagnosed with sle lupus

My vertigo and random nausea 😭 Its been a few years

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.

Yes

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

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

Quite a few

Yes. So so many

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

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

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

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

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.

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

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

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 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!

My bone marrow being dried out.

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

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

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

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

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

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

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

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.

Yes

Yes

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

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

Acid reflux maybe

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 😞

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.

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.

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.

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.

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

Yes.....

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 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.

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

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

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

Sorry for your discomfort.😥