I'm so tired of feeling this way. I feel like shit all the time. I used to be able to work out and move, and even though it was hard I still felt okay for the most part. Now I can't even do light exercise without feeling like I'm coming down with the flu for days afterwards. I feel so nauseous and fatigued all the time. The first thing I notice in the morning is how my body feels like it's drained of all energy. My mind is completely unfocused and foggy. I can tell my memory is getting worse. My lungs are have begun to get weaker. I probably need rest desperately, but with a 3 year old and an infant, that's extremely hard to come by. I feel so bad that I don't give my toddler the attention that I would like to. It feels like I'm watching myself die very slowly. Sometimes I wish I would just hurry up and die. This disease has taken over my whole life. I didn't think this was how life was going to be. I try to stay positive but honestly I'm so tired of fighting. I want to let go. I want to just let go of it all.

I have late onset pompe disease. I just need to rant and get this all out somewhere.

Although we don't struggle with a rare condition, me and a group of Human Centered Engineering Design students at the University of Michigan have spent substantial time on this subreddit attempting to get a sense for the everyday challenges that come with it. We are currently researching conditions affecting the face and how they affect eating/drinking both socially and physically, as well as the products and solutions currently available to help.

We put together a short, quick survey, and we would appreciate it if you could answer it if your rare disease or a loved one's rare disease affects their facial movement. From what we have observed on this subreddit, we believe that the feedback from this community could be immensely helpful.

https://forms.gle/vMnrj6rskfJx6mSL8

Thank you so much to everyone who takes a few minutes out of their day to answer this.

Hi everyone,

32 M

I posted here before, but I will write long story short, I have some kind of an immune disregulation that doctors in my country cannot find the cause for.

I have polyclonal B cell activation with slightly low immunoglobulins, especially IgM which is contradictory to them. Generalized peripheral lymphadenopathy is present alongside a cluster of symptoms including low grade fevers, fatigue, arthralgia etc.

So their conclusion is to consult a specialist outside of the country, since it doesn't match anything that they know.

I was curious has anyone done this before? And what are my options?

Thank you in advance.

It is really scary, but I am interested in knowing what other symptoms there are, other than the ones the health organizations provide. Does anyone have any resources for special or different symptoms than on health databases or is researching it in the field?

So i've been going to a neurologist, psychologists, psychiatrists, and lately an internist and i cannot rest until i find an answer because this is ruining my entire life, im failing college/work if this doesnt get diagnosed, i have to sacrifice myself to focus and get good grades and im so sick of it! im also sick of constantly being misdiagnosed with adhd, i dont want to hear people telling me they wish i admit im 'quirky' too. it hurts how people get their answers on a silver plate and dont need to research, while i get dismissed as being in denial bc of internalized ableism WHEN ITS MY GUT FEELING. I CANT FOCUS ON SH*T EVEN IF ITS A SUBJECT OF INTEREST, im so sick of hearing "everyone's symptoms are different", im too different to have it and someone w it said it sounds like i have smth else bc i need too much stimulation that the riskiest activities also have me drowsy and need so many videos on the side and snacks while studying to get minimal focus. this was before depression or trauma. They ruled out everything. I have antibodies attacking my thyroids, they did a test but couldn't find an autoimmune condition and my TSH levels are normal so that doesnt affect focus, i've also been on vitamin injections, BUT I STILL SLEEP 12 HRS A DAY, one psychologist at least believes me, she says i have symptoms of known neurodevelopmental disorders but i dont fit into a box which was validating, she wrote a letter to the undiagnosed disease network for me, but since i heard they only test for scientifically observable conditions and the undiagnosed, im scared i'll be ignored. please help me end this diagnosis hell where do i go to finally get the answer that i need? i cant take it anymore

I am actually looking for a community for FAP so that FAP patients can share about their life after treatment, their challenges and support each other emotionally. I am diagnosed with FAP this June and is undergoing treatment. Though doctor said that my life expectancy and quality of life won't be affected after treatment, I am not actually very optimistic. I read that FAP will still have a higher risk of Gastro related cancers. I also have fundic gland polyps in my stomach. Doctor said that fundic gland polyps can be controlled with medication. Not sure how true is this. Would appreciate if any FAP patient can share their stories. Thank you.

My niece was recently diagnosed with ADNP, which definitely explains everything we’ve seen, but she has another feature I find really interesting and am curious if it’s related - she has multicoloured hair. Overall her hair is red, but she has patches of blonde, strawberry blonde, auburn, ginger etc. I’ve never seen hair like it. Could this be due to her diagnosis? Her dad has just red hair and her mum dark blonde.

I (32M) have HFS. I have been diagnosed with it since I was 4 years old. There are two forms of the condition Juvenile and Infantile. Infantile is more severe and progressive. I am fortunate/unfortunate enough to have the lesser aggressive of the two. However I recently find myself wishing the opposite was true. It’s truly miserable and devastating especially when lumped on top of a traumatic childhood and the cruelty of life without such a rare seemingly insurmountable condition. It’s like life gave me the shitiest cards to play with and some of the cruelest conditions. I’ve never personally met anyone with the condition. The only real treatment is surgery and as a result I’ve had close to 40 surgical operations in my lifetime to remove the cysts it causes throughout my body. I’ve had all but two of my toes at least partially amputated and two of my fingers. My body has always felt like it’s aging at a hyper speed. I have countless scars. I can’t remember what it’s like to have normal touch sensations or to not feel some degree of physical pain and discomfort and pain. I’ve applied for disability numerous times and am always denied. (I did get an attorney who helped me appeal the previous time but I am ended up in need of money so I had to return to work. Therefore I only got temporary coverage for the time I was off which was about 13 months). Disability doesn’t even pay enough for me to afford anything or make any kind of better life for myself. I have little to no support system. I only have myself to rely on and that’s been my entire adult life. Up until this year I’ve worked in various jobs and careers but never was given opportunity to find a suitable and reciprocal position that would allow me to fully support myself. I just run myself dry and burnout in my efforts constantly growing more and more overwhelmed by the inability to find or create a sense of security in my future. People overlook me and judge me and use my condition against and as an excuse for why they don’t give me opportunities I see lesser qualified and equipped individuals given. When I was working I never went on vacation because all of my sick and vacation time was used to manage my health. In relationships it’s often as if women pity or use me to fill some moral void and then use the instability of my life and circumstances against me when it conveniences them. Add to it the fact that I have ADHD and am certainly neurodivergent. Life is hell. It’s far beyond lonely. I’ve searched for help with my condition but always come up empty. Even my team of doctors are left with mere cliche encouragement to offer. At this point I feel mentally stuck because my life has changed so much much over the past year. I m not near my team of doctors. I can’t afford to fix my car. The specialists I’ve seen are often scared or hesitant to treat me living in LA (with only family I have) now it will take me a year at least to find new doctors and restart build a team which is the only way to manage my mental and physical health with. Many people don’t take my insurance now. I’m too broke to pay for anything but rent, food, insurance, and my phone. Genuinely, I wish I was fortunate enough to have a more severe form of HFS so I didn’t have to live through this nightmare of a life.

On a softer note though. If anyone has or knows of anyone with this condition let me know. Similarly if there are any specialists who see this and could help me please reach out.

Hi,I have been diagnosed with the CNGM disease 3 months back. I have been looking for answers but it seems even the doctors don’t have any. It started with a mass on the left breast which was tested benign after the biopsy. I have been on antibiotics but the redness inflammation and discharge keeps reoccurring.There is very little information online. If anyone has been diagnosed with the same please comment and share your experience so it will give me hope that this will get better.

Hello, has anyone heard of this syndrome or know anyone who had it?

Hi everyone, a friend of mine suffers from a rare, genetic disease in which the brain is temporarily unable to transmit the correct commands to the body. A major symptom of the disease is constant fatigue, which has led to an inability to work and sometimes even keeps him bedridden for long periods of time. So far, the doctors have not even been able to define the disease by name.

Who could possibly give me some information on this? I would really appreciate any hint.

Disclaimer: There’s no genetic conditions that run in our family and I was fine way before that.

Hey there,

My name is Lai, I’m 25, 6’4”, 200 lbs., with no past illnesses but a very rare case I struggle to find answers in.

I grew up in a religious controlling family. They used to send me to psychologists since I was 4 till middle school but it all stopped as I reached high school. Safe to say i grew up in a stressful environment where I never really saw ”myself” or believed I was wrong. This was about to go away as in Germany when you turn 16 you become your own man and start to branch out and develop your own wings.

Things couldn’t have gotten worse as I was about to begin my life. My family upped and decided they want to go to a religious pilgrimage to Mecca. I could give 2 shits about religion. But I was 16 still I didn’t know better but I regret going there everyday, there I had so much built up stress, I was isolated, tensed up and reserved. I kept towards this negative trajectory until the 27th of December 2015, where I felt a ball drop in the back of my head. Right at the crown to the center of my brain. It was such a vivid and strong feeling and it happened instantaneously with me not assuming what happened. I felt the feeling shoot up right back in the top of my head again where the crown is, and I felt it so strongly it radiates through my hair. I actually believed my hair was turning gray (but it never did). However after this incident. I was never the same. My life was never the same. I had everything calculated since i was a kid and everything vanished before my life could get started. I lived in a constant state of fear and anxiety. I felt I was actually sinking in my brain. No one, no psychiatrist, psychologist, neurologist, no one can explain what it is. I felt I was repelling the world away from me. Everything never worked out and I had the worst throbbing headache in the back of my head. I, using common sense, tried to control it because if I let this control me it will consume my life and I was barely holding on.

I couldn’t fit in anywhere and you could feel if I did anything it would fail. It’s so weird saying it out loud but it feels like my brain is operating inversely. Rather than growth I felt I was constantly regressing. I was so scared and poor me at 16 years old couldn’t even explain it. I thought it’s something beyond me like religious but whatever it is because I’ve been wired since I was a kid to believe I’m wrong, I believed in it. I believed in my destruction. My looks started to get worse. I felt my hair will fall off like alopecia from the immense radiant throbbing headache I was feeling. To counteract it I cut my hair. But my hair kept falling from the stress. I felt life getting worse. My body getting worse. I had no clue what was going on but I kept hope that tomorrow will be better. But it didn’t get better it got worse and worse and worse. Days turned into months into 9 years and it completely destroyed my life. I've been working to shift my brain, to reverse whatever happened to me in Saudi Arabia but I failed. Below is what I feel now. I’m 25 years old:

- The back of my head feels numb. It’s a feeling I constantly want to shake away. The headache is always there it shows up in different patterns and pains and I can't counteract it. Sometimes extreme debilitating radiant headaches are apparent on top of my head, with extreme shooting pain like a Death Star beam of pain. No human should live through this, not even the devil himself.

- Poor Eyesight, Hair, TMJ in my Jaws, Extreme Stress, Can't concentrate, Extremely Bad Memory, Bad cognitive abilities.

- I feel I can constantly move my nerves in my brain leading to worse effects.

- Constant Neck cracking (I even had this since I was a kid)

- There are bulges in my head from the stress I endured.

- My brain feels corrupted, extreme memory and cognitive issues.

- This all affects my looks and wellbeing, I never did well financially ever.

- I even felt the world change, it’s so surreal and unexplainable. It felt life and reality took a shift for the worse.

This story also has another side, my body. I developed gynecomastia on one side where I was so embarrassed by it I held my body to the left to make sure my chest looked fine, it was a strenuous effort my left shoulder that I later developed into a depressed scapula which used to mirror the pain I felt in my brain (especially in the inner bottom right corner, the pain became unbearable and I couldn’t remove my shoulder, it was stuck) that developed more pain as well that I didn’t want, such as neuralgia both trigeminal in my mental nerve, and occipital), coupled this with the headaches and sinking feelings, I was in hell.

I was always reaching out to outside help but it proved not fruitful, through an array of trails and tests it gave me no outcome, EEG scans showed I’m fine, MRI scans showed acute hydrocephalus, probably me stressing my brain out to shut this sinking sensation off, but nothing more.

Psychologists would tell me it’s beyond me, they told me to seek clinical help and Clinics would tell me it’s in my head, yeah no sh*t, and so to see a psychologist, because they can’t see anything. Neurologists couldn’t understand it, giving me over the counter medicine that solved nothing, even nerve shots made me worse.

I was always in a reaching out but the cycle always closed towards "I’m on my own with this one, no one can heal me and I have no clue what’s going on", I decided to end it, I saw I’m some tough person to kill so I didn’t want to torture myself anymore as I saw people surviving falling off buildings and even though I had access to a loaded gun, I had no faith in the gun I have. It seemed it couldn’t do the job. I didn’t want to torture myself anymore, I did the only thing that helped me till this date, I starved, starved to death, either this thing in my brain goes or either I go. i started out small intervals of 4 days felt where I felt better, 7 days, felt I had a chance to get out, 13 days I felt rejuvenated. then 20 days. YES 20 DAYS, Gandhi did 21 and cheated. I was 20 days in and I felt I can go to 30.

During starvation i felt my whole body shut down organ by organ, my heart would pump insane by doing any effort, I would throw up constantly, my weight fell, and I struggled to regulate my temperature, but guess what, the headache and sinking feeling was still going strong, it wouldn't turn off, my body was giving in and this is still going ham destroying me, after 20 days I felt I had a small opening in my head and I recovered ate and drank again like nothing happened.

Once I broke out of it, I felt partially free for the first time again, I started to do way better than I ever did financially, live somewhat in a nice place and found the most beautiful girl in the world beside me, I was doing well but it was wearing off and I felt me going back to where I started and I wasn’t wrong. It did. I tried to hold back by trying everything but I felt the black hole vacuuming me back in my head creeping back, I even went to the hospital told them I have neuralgia and they gave me betamethasone shots but it didn't make it better but worse.

I’m back in my struggle with the same condition again, living a very bad life, my weight gained and I’m in a worse place with no money or future again, I’m so tired of everything and it’s a shame I had to live through this, I had my world figured out since I was a kid, again, it’s a shame this became my life, I blame my parents and I truly hate them, they are the reason for all of this, without them I would have been fine, I resent them so much.

I still have no clue what’s going on maybe I’m cursed but every single f*cking day since December 2015 have been attempts to reverse what happened to me to no success, I’m still trapped in a very bad state with no hope or future, I’m a failure because of what happened to me, the only thing making me hold on is I met the most beautiful girl in the world and if she’s gone I’m out of this planet for good.

I don’t know what to do or how to move forward in life with this but I need help at least in the right direction, or knowing what the hell is going on, I need answers. PS I barely made money doing side jobs so I’m not financially in a good place. I’m thinking of doing this cycle again looking for help, but I’m tired, I need a solutions not trails by error. It's up to the reader to tell me what should I do next?

Hi, sorry if this is against the rule but I'm at the end of my rope trying to figure out what's wrong with me and my google search pointed me here. Every spine doctor I've seen is left confused as hell.

Basically, my neck decided to fuse itself on almost all my cervical vertebrae starting about 8 years ago. The only ones that didn't fuse together were C4/C5. I don't have any neck trauma, I've never been in a car accident, nothing like that. I can't move my head - none at all left to right, very limited up and down. I do have mild scoliosis, but it wasn't detected until adulthood. Sometimes I can pop my neck on the right side to relieve stiffness, but I can't do it on the left.

I just... don't know what's wrong with me. Nobody knows what's wrong with me. I guess if anyone would know how I'm feeling, it be you guys.

Does anyone know anyone who has been diagnosed with salla disease? I know there are lots of cases in Finland and Sweden but it is rare in the UK

Hello all looking for advice on how to get insurance approval for genetic testing. Insurance doctor said he sees no reason it would help my diagnosis. Thanks in advance.

Short summary of symptoms:

Can't concentrate fully or relax, always on edge, as a consequence always tired

Quite sever shortness of breath

Heart Palpitations

These symptoms are constant 24/7, basically no change and occur during sleep also.

The whole way along I have been told I have a mental health condition, first it was panic disorder, then OCD, then GAD.

I have taken many anti-depressants, but none have helped in any way, been to CBT, went to a physiotherapist with a specialty in breathing conditions, this didn't help either.

Am currently seeing an endocrinologist to rule out the range of hormonal issues, I've only had basic thyroid blood samples taken previously. A lung function issue was also ruled out.

Does anyone have any more ideas what this could be? I'm currently working on the idea it may be an adrenal issue, hence the endocrinologist.

Hi all! I (25f) have Glycogen Storage Disease type 3a, I was wondering if anyone else on here has it or any of the other types? I was diagnosed in 2000 via liver biopsy at 18 months old. I’ve been trying to get genetics done for 7 years but each time something happens to the blood sample and it never works out.

Hi 🙋‍♀️

I am suffering from a rare disability named as hemihypertrophy ….my legs are impacted the most which is fine coz atleast I can wear trousers to hide it but as now I am 29 (f) m getting a little back pain if I don’t wear the corrective shoes and also the calves/thighs has become so big for my right leg comparatively to my left - I am confused how to handle the swelling, I cannot wear straight jeans anymore, also doctors told it is all fat accumulated. Doing walking regularly but nothing worked out yet……does anyone know who has this extreme type of issue like mine??

It will be nice if someone has literally practical suggestion for such issues.

Hello everyone, This is my first post here. I got out of the hospital a few days ago due to being diagnosed with Steven Johnson syndrome. A reaction I had to a medication called lamictal. It is said 1-2 people per million develop it. Idk how rare that is compared to others disorders on here but I feel very alone. Physically I am decent. Other than my organs being swollen and needing to monitor and my skin being pale and ugly coloring. Mentally I am destroyed. I am so far beyond depressed and feel guilty for being alive. The doctors said if I would’ve waited a few more days or anything I would’ve had a 50% chance of dying. I have nightmares. Can’t fall asleep and once I’m asleep can’t stay asleep. I have severe anxiety. I never want to take medications again. I’m so baffled that this happened to me. I was a ‘healthy, happy’ 25 year old and now I feel like I already died. I feel no happiness and pleasure in anything. My passions don’t bring me any joy anymore. I feel bloated and sick all the time and everyone tells me I look sick. I live in the Midwest in the US. I know there’s others out there but I feel very alone in this. Nobody around me understands. I also suffer from schitzo-effective disorder bipolar type hence the reason I was on lamictal in the first place so maybe that could also be triggered right now, I’m not sure. I don’t know what I need but I know I have to continue to get blood work and everything done to make sure my organs don’t fail and my thyroid. I’m not sure why I made this post, I just wanted someone to be able to hear me out. Thank you for taking the time out to read this and I hope your day is going well.

I got a rare neurological genetic defect causing heavy symptoms. But my genetic doctor ghosted me ever since I got it diagnosed. I only had on appointment after the blood test where he gave me the test results and said I have it.

No I'm completely alone with it, I don't even know what to do. I tried to get another appointment but he won't let me. I tried to contact him for 1 year now. He ghosts me, completely ignores me. I was a candidate for a rare disease centre. My genetic doctor is the director of it and said my disease is not rare enough I should stop contact them.

What should I do now? How can I get a therapy for it? All I have now is my blood test. Which is very intimate and I don't want to show it at every doctor. And moreso most don't care, they say they don't know anything about genetics.

I went to a neurologist and showed him my blood test and my story. He made simple neurological testing, said I'm healthy and shouldn't care about my genes to much.

I have no idea what to do now. I have appointment at another neurologist but what can I do different to get most out of this and make him care.

I made online research and there actually is a therapy for this. But I need a doctor to give it for me, but won't find one

Hello! Folks,

I(25F) have been diagnosed with Deep Infiltrating endometriosis, Fibromyalgia, Chronic pain syndrome, Seronegative spondyloarthritis, sinus tachycardia, psoriasis, etc, So the 'fun' fact(it is anything but fun) is that I have figured out(no magic-by reading and reading!) almost all the conditions before the doctors and had to advocate a lot for myself(except psoriasis). I have been right about trusting myself and my body about the changing symptoms and finally getting diagnoses. I feel that I am in the same situation again(a new comorbidity/condition?) and any suggestions regarding the same will be genuinely appreciated.

I understand that a lot of symptoms in these conditions overlap but I still don't want to feel my body unheard(done that a lot already). My new symptoms include but not limited to a addition my 24*7 chronic pain(a new pain with new nature) but it is really hard to describe the newness of it. Although I have been diagnosed with migraines already, my migraines wasn't as severe as it is now and there's a burning and this very distinct pain in the posterior or back part of my head that has started radiating to some parts of my face now(have never experienced this before), sharp pain in some parts of chest and breasts instead of the usual and widespread dull pain in the chest, pain in wrists while bending hands, increase in instability/more prone to falling, very gradual decline in grip, increase in fatigue etc. I have also witnessed some kind of involuntary movement of my fingers of right hand for a few seconds that I was trying to control from my thumb while being in the scanning machine.

My 30 mins EEG, MRI Brain, and MRI cervical spine came out as normal. The impression of Triple phase bone scan is Bone scan findings are suggestive of increased perfusion, blood pool and increased peri-articular osteoblastic activity involving bilateral sacroiliac joints (left more than right) with prominent costo-vertebral junctions, bilateral shoulder and hip joints, likely represents an inflammatory pathology. They have also noted a Diffusely increased tracer uptake noted in the skull, mandible, sternum, likely metabolic bone disease.

I am looking for any suggestions, experiences, comments of people who have gone through or experiencing anything remotely similar. I am also open to hearing different experiences, diagnostic journey and/or anything that you want to share. Please feel free to DM.

Thanks a lot in advance.

PS: I might be missing key information so please do ask if you think there are some missing pieces.

I had Sydenham's Chorea at age 6. Went through so many tests, and specialists. I ended up taking a penicillin injection every month until I was about 20. I just think it is odd to be on penicillin that often and for that long.

Does anyone have any information or personal experience with SC? I would love to hear other people stories about this disorder. Are you healthy now? Any long term effects of SC?

I don't know what to do anymore.

Most of my blood tests are good, according to every doctor I've consulted. All but my thyroid hormones are normal, and they make no sense.

On my first tests, only T4 was high. On the next, it was were normal. Then on 2 recent tests (was supposed to be tested for Cushings), both T3 and T4 are high. Meanwhile, my cortisol was normal. The dexamethasone test also ruled out Cushings. I have high ESR on random occasions but they said I shouldn't worry about it.

I do not tolerate heat well, and I sweat too much. I had bad insomnia and random irregular (fast) heartbeats since elementary. I have brain fog, and my skin and nails are thin and dry. Not to mention, I get ear infections frequently (this is recent. When I was younger, it was throat infections). But I also do not cope well with cold temperatures and have difficulty in losing weight. In fact, my diet and exercise is heavily monitored by my parents but it's only me who's fat in my family.

What could the issue really be? The doctors say that I should be skinny as hell due to how high my t4 and t3 are. It doesn't make sense that my Tsh is normal despite the circumstances.

If you have a rare disease (or are discussing one) you may be accustomed to using the acronym for it, and for terms related to it. Please, try to spell it out for the first time when you use it here.

We are a community of people from many different areas, with many different diseases. Acronyms (or abbreviations or slang of any sort) which are commonly used within a community of people with your disease, or used when you talk to medical professionals, may confuse people who lack in depth knowledge of other rare diseases. We cannot all be experts on everything, after all, and common language helps bring us together.

Disclaimer: I am not a doctor. I am a CIDP patient who is a strong advocate for education, well-being and understanding of effective treatment that can lead towards a better quality of life for those afflicted with this rare, incurable disease. For more CIDP resources and conversations involving CIDP, join us at: r/CIDPandME.

Shining Through CIDP: October Updates

Argenx, the maker of the new CIDP medication, Vyvgart Hytrulo, has a wonderful website called "Shining Through CIDP" that is filled with media content from real CIDP patients just like you and I. It is constantly being updated with current stories and information to keep us in the know and in the now!

The fresh new October content includes the following:

[Treatment Landscape Article] (https://shiningthroughcidp.com/everyday-life-with-cidp/treatment-options) This piece will educate readers about the existing CIDP treatments available and inform them that there is a new treatment option that was just approved, driving them to the VYVGART Hytrulo for CIDP website. Questions at the end of the article provide discussion topics to help patients have effective conversations with their Health Care Professionals.

[Rare, Well Done Series, Episode 2: Amanda] (https://shiningthroughcidp.com/rare-well-done) Watch as the Thrive Team, a squad of experts who help those living with CIDP make more room in their lives for what matters most, provides Amanda with mobility tips to gain confidence as she navigates through the Big Apple. Also included on this episode are 2 bonus videos: one where she discusses her own silver lining of not taking things for granted, and the other featuring her life tip about finding a transportation option that best suits her needs in the city.

[What is CIDP and Why do Symptoms occur? article updates + MOD Video] (https://shiningthroughcidp.com/everyday-life-with-cidp/what-is-cidp) Our most engaging and popular article received a refresh, featuring additional information and an enlightening new MOD video to further explain what CIDP is and how to explain it to others.

Enjoy! Stay strong 💪 Go with Love ❤️

I used to take adderall for my severe ADHD, I also drank coffee as well, one day adderall started to give me imense anexity and sense of doom so I had to quit it. This got in the way of my work as my productivity dropped, after two weeks of withdrawl still being in effect, i took adderall and drank coffee again and it made me instantly anxious instead of helping me focus and taking away my anxeity like it used to. I went on and off adderal for a couple months in early 2024 until finally I quit adderall and caffeine all together because it seemed i developed a tolerance to it why paradoxically couldn't take it anymore because even the lowest perescribe dose of adderall or anything more then 5mg of caffeine gave me anxeity. But here's the thing, despite quitting adderall and caffeine, my body despite being off stimulants started to released adrereline that spans from morning to night. From may 2024 to now october 2024 I've been dealing with massive amounts of adereline that starts from when i wake up to when i go to sleep, accompined with anxeity with a sense of doom. This hasn't stopped, and ssri's doesn't have any effect and weirdly enough benzos actually make the anxeity worse and causes my body to even release more adereline. Imagine the worst cup of coffee ever, but that feeling lasting from morning to night months on end despite not drinking it. I've been living in pure hell and I have no clue what to do. I had to quit my job because of this. I also have some other symtopms that have been accompyning this including immense head pressure/ear popping/headaches , severe fatigue, loud tinnitus, light sensivity, chest pain, palpatations, arteries throughout my body constricting, insomnia (obviously), stumbling when i walk, dropping things randomly when i hold it, randomly shaking in bed sometimes especially after a large meal. I am living in pure hell and I've gone to doctors and neurologists and I'm not sure what to do. I've tried mutliple medications that either have no effect or makes it worse, and because I am on medcaid the doctors i do go to are honestly not very good ones. What do I do, I really feel like I am running out of options. I really don't know how to put this into words, I wouldn't wish this on my worst enemy

I've been to the hospital multiple times for this as well as an eye doctor and I can't seem to find anyone that has a clue what's going on. For the past 6 months or so, my right eye will randomly swell up for a few seconds, and then go back down. It's not pain just intense pressure. It's visible as well. It's my actual eyeball, not the lid or around the outside. One day, it happened every few minutes for over an hour. I went to the hospital and they checked my eye pressures, and they were fine. I wear contacts and have for around 15 years or so. A eye specialist also did some research and came back with nothing. It stopped happening so I didn't think anything of it until it happened AGAIN yesterday! I feel like I'm going insane. Does anyone have any clues??