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.
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.
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.
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 :)
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.
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
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
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.
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)
I have the neck, back, migraines and pain in my thumb and wrist. I am getting injections in my neck. I have an MRI and EMG (nerve conduction test) for the wrist and thumb pain. I have 4 doctors treatment me for my issues mentioned, pain management, neurologist for migraines. A rheumatologist for fibromyalgia and a orthopedic doctor for the wrist and thumb. I wish I had just one who could do it all. Lots of doctor. And only was can even prescription medication for pain ( like narcotics). No matter how bad I might appear to other’s. I signed a paper saying I won’t get pain meds from other doctors . See pain management like the end of November, MRI and EMG end of Nov or December. The orthopedic is next appointment is in December, rheumatologist is December 5th, pin management is end of Nov.
Thank goodness for daily planners
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.
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
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.
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.
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.
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 😞
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.
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.
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
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 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.
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
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 💕
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!
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 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 😭
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
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
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.
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.
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.
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
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!!!
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.
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
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.
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
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.
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
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Ever have a symptom no one could tie to anything?
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Adjustment Disorder
Tachycardia
Nausea and Vomiting
Headache
Myalgia
Joint pain
Generalized pain
Diabetes Type 2 (T2D)
Chest pain
Naltrexone
Laryngopharyngeal reflux
Chronic Backache
Skin Itch
Lethargy
Migraine
acute myalgia
Feeling of choking
Nystagmus
Chronic Pain
Chronic Generalized pain
Gabapentin
acute lethargy
Palpitations
Dizziness
Anemia
Hypothyroidism
Arthralgia, Arthropathy
Recurrent Syncope
Otalgia
Cin
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