Lost in the Land of the Undiagnosed


Sometimes I feel lost. Lost behind the world of the diagnosed.

There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren’t we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that hidden crook, lie about how we feel, and watch the world leave us behind. The feelings of loss lead us to a path into the lost.

  But what of those that have no name? We have no answer for friends who care enough to really hear the answer to,” How are you doing?” We come across as liars. More so with each month, year, or decade that float by leaving nothing but a wake of pain in its path. We loose more and more friends. Those that were steadfast for 10 long years finally throw in the towel. We are convinced that these are the reason, which at least is what we think.

Okay, enough with the “our”, this is painfully with a self involved touch, about me. Perhaps I am alone in feeling this way.

  I find kinship here in the boards. I know I am not alone in my suffering. And for that I will forever be grateful. But I admit the green monster that creeps in my shadow. He’s envious of the organized fundraisers and wishes he could have a name. He is Envy. And he makes an ugly person of me. On the days he sticks his head out, I am nasty. I may be snappy or rude, but I am ALWAYS jealous and angry about being jealous instead of supportive. Even writing it makes me feel like I’ve an ugly heart.

  How come I can not find it in me to just be glad to have the sisterhood? The one’s offering an ear or hug or spoon. And like schizoid-typo, I am both. I wish I could walk for Lupus and MS; while in kind, I long for recognition for MY mystery. It is just as real, but how does one address the invisible? How can I get to healing myself when I’ve no idea what’s wrong.

  It’s autoimmune they say. Those are neurological symptoms they say. But you are an enigma is the written diagnosis for me. Hurrah! I’ve not only felt lost behind those with a name, but I’ve lost my friends. I’ve lost some family. And most disturbingly, I’ve lost doctors who lost patience in my frustrating condition. *sigh* All loss, and lost.

   Why on earth should I be jealous of a named chronic condition? Why do I crave it so? Perhaps I will never know. It just is. But my fellow Spoonies…I will always have love for you and hope to never feel lost in our connections!

Alas, I will continue to creep among the diagnosed. Hopeful for their comfort and financial gain to work that sucker to a cure! All while envious of their Names in the tabloid! These are ugly diseases, but as I’ve learned in here, always existing in beautiful carriers.

Written by Sonja McDaniel (sacredjinx on our butyoudontlooksick.com message boards)

I’m a 37 year old female undiagnosed for 12 and a half years. I live in the SF Bay Area surrounded by my wonderful husband, my mom and all of our rescued critters. I’m living proof that you can’t judge a book by it’s cover! Punk looking, art making’, book reading freak!

  • Emma-lee Eastwell


    He is not allergic or intolerant to any foods, which is another reason why it is weird and unfortunately he hasn’t been taking his medication because he has tried so many different kinds that he is scared it won’t work. I don’t know a great deal about all of his symptoms because he doesn’t like talking about his illness, making it harder for me to figure out what to do as well. I will look up and research on some of those illness you mentioned to see if I can get anywhere with them. I appreciate this very very much and I hope that things can get better for you and that you find the root cause and definite diagnosis of your condition as well. You have been a great help to ease my mind a bit and give me some more avenues to try and I thank you so much for your help! Xx 🙂 Take care of yourself, good luck and thanks again! 🙂

  • Angela

    Has he been tested for certain food allergies or intolerances? It is possible he may be eating or drinking something each day that is causing him pain? Look into food related disorders such as Celiac and Chrons disease. Also, is it possible he may be having negative responses to his medication? I recommend seeing a Gastroenterologist if he hasn’t already done so. I have been having chronic pain and stomach issues for years Within the last year, I have lost nearly 25 pounds by doing absolutely nothing besides sleeping and resting. I have recently been diagnosed as lactose intolerant and gluten intolerant as well as having gastritis (inflammation in the small intestine). I have been 100% gluten and dairy free for almost a month now and my stomach pains have decreased dramatically, however, I still suffer from major fatigue and pain all over my body and seemingly none of my doctors can figure out my problems, so I am taking the initiative to research as much as I can myself. Also, look into Lyme disease, this is a disease that is not recognized by the CDC so many doctors “don’t know” whats wrong with you if you have it. Someone very close to me was just recently diagnosed with Lyme after many years of struggle. I hope my personal experiences can help you guys find some answers for what is wrong with him.

  • Emma-Lee Eastwell

    Hi everyone,

    My boyfriend of nearly 2 months (but childhood friend of 14 years) has the undiagnosable illness… He is in his 4th year after he kicked his motorbike trailer. He has a loss of appetite and increased abdominal pain. the doctors have all of these theories but they do not add with his medication because he has taken so many different kinds and he is still not any better… we do not know what he has or what to do. if anyone has any theories or just some advice it would be much appreciated. Thanks!

  • Surykaty

    Im a 31 year old male and im at my breakpoint. Due to my strange illness I lost everything – love, apartment, friends, life and dignity. My strange illness began when I was 21 and it tore my apart that time. Ive kinda got myself together after a year, started pushing through by getting social – going out and drinking with friends, bodybuilding which was extremely difficult but my body could handle it for a bit and I was doing fine at my college. Now im not capable of doing 90% of the things before, its as if my nerves burned out. I feel always uncomfortable, like my whole body is burning, extreme brainfog, I dont feel thirst or hunger properly, my sense of smell is gone and I have no tolerance to physical work. I cant concentrate for more than 3 seconds. On top of it all of my friends are married, dont have anyone to go out with, im bald now and not good looking at all + in the last 4 years no woman ever shown me affection even though I mask my suffering exceptionally well and my personality seems fine (what people say).

    Ive found 4 keys to my ilness but strangely everytime I use them I feel good maybe for an hour or so. After that im extremely tired.. when I sleep after that the next day I have a feeling like I had the worst allergic reaction in the world and feel sick to the bone and cant move out of the bed. The only thing that keeps my boat afloat is that I have my own business im very good at and that one day ill find the master key. Oh and also hope they will find cure for aging because my youth has been wasted.

  • Brooke

    I get it. I’ve been dealing with very similar symptoms for a year without a diagnosis, so I can’t imagine your frustration and sadness. I am also exploring the dysautonomia avenue, which may be caused by an underlying auto-immune disorder. Chronic Fatigue Syndrome is under the dysautonomia umbrella, and it sound like you are suffering from this. If you’re like me, you’re testing negative for almost everything including ANA, but you may still have a seronegative auto-immune disorder. I’m also looking into toxic mold exposure, which is a controversial area to explore, but once you’ve gone through all the normal channels, it’s time you start looking in other places. Hold on, try to remember you’re not alone, you’re not crazy, you’re not making this up. I believe you. I also believe in you. You can make it.

  • EE Z

    I agree, that sounds like a seizure/stroke to me.

  • EE Z

    From there perhaps a dysautonomia diagnosis… have you had a CBC (blood panel)? Anything unusual? Have they looked into adrenal fatigue?

  • EE Z
  • Anonymous12345678900000000

    My most debilitating symptoms is EXTREME fatigue – to the point where getting out of bed and going to get something to eat is difficult. The weird thing is that even though I am so tired, I have trouble falling asleep. I had vertigo on and off for years, and now my eyes have a burning feeling and are very sensitive to light.

    The fatigue has been so bad that I haven’t had a functional day in over a year.

  • EE Z

    PS– https://en.wikipedia.org/wiki/Mitragyna_speciosa
    There is an unscheduled (legal) opioid (painkiller) you can get online. I’m not affiliated with any vendor and I have no reason to bullshit you about this. I’m sure you’re not rolling in money, but for the love of god, get your hands on some of this stuff. It feels exactly like Vicodin. This is the only way I’ve been able to survive being in school without anyone giving me real pain meds.

  • EE Z

    Don’t give up kiddo. I’m 27 and just figured my shit out after about 7 years.

  • EE Z

    <3 What are your symptoms?

  • EE Z

    And get ready for people to not believe you. Just keep going to people til you find someone who takes it seriously.

  • EE Z

    This sounds like Ehlers-Danlos to me (what I have). The cold feet would be associated Reynaud’s. Stomach issues are common with connective tissue disorders; it’s called gastroparesis. Get yourself to a rheumatologist or geneticist.

  • Anonymous12345678900000000

    I am crying as I write this. I have suffered with an undiagnosed condition for the last 7 years (I am 26 now), but this past year has been the worst. I had to stop working, my fatigue and brain fog make it so that I cannot read or stay awake during the day. I have lost friends and family. I just want to be better so badly, and it is driving me crazy. No one in my life understands. If I had cancer, I could say that and people would immediately “get it”.

  • Anonymous12345678900000000

    Hi CynicalPragmatist,

    I know it has been a long time since you posted, but have you been tested for Lyme disease? It causes extreme fatigue and joint pain. Just a thought.

    I wish you all the best!

  • Crz

    What drives me crazy is when I see a new doctor, they run a bunch of tests, and then they say, “Great news1 You don’t have cancer!” Yeah, that’s nice and all, but I’ve known that for the last three years. If it were cancer I’d be dead by now. But they all seem to think that they are giving me some happy news.

  • Bev

    OMG i nearly cried when i read this! I thought I was a one of as im told im a medical mystery, autoimmune/connective tissue and anything else they say but dont know what is causing it or how to treat me. I have had open heart surgery and lungs drained because everything gets squashed. I’m tired and was feeling very sorry for my self as you may notice lol. I don’t wish anyone ill health but i am pleased your here!!!!!

  • Jordan Perry

    Do you have any dizziness to go along with the nausea? Because I have something similar going on and we figured out part of my problem was a vistibular disorder. This has to do with your inner ears and the connection between your balence system in your whole body. It’s something to check out. You can go to physical therapy and fix the problem. I went to south valley physical therapy in Denver Colorado http://www.southvalleypt.com and they figured out that I had a vistibular problem. I to was focusing on my stomach and it scoped and been to several doctors for that and it hasn’t worked. But when we heard about this and went to see if it was really what I had it was like a silver bullet for me. Good luck and I really hope that you get this message since you posted this a while ago.

  • Tabatha

    I felt every word you wrote, I totally get you! It’s crazy the amount of people who also are going through this. I’m 22 and for the last 2 years I myself have been in same boat as you and is physically, mentally and spiritually draining. There isn’t enough support and help for people like us who are undiagnosed with an invisible chronic illness.

  • bonnierabbit

    Thanks! i will talk to them next time i go

  • Jerry

    livedo Reticularis is often times associated with Antiphospholipid Antibody Syndrome. Has your doctor tested you for APS antibodies? APS symptoms can also mimic those of MS. Some APS patients have completely normal MRI’s of their brain but still have symptoms of MS. Taking blood thinners can sometimes make these symptoms go away and even make the Livedo Reticularis go away!

  • Jerry

    Have you been tested for thyroid problems? Doctors tell me I look completely healthy and most of the time I literally feel like a 90 year old man. You should also be checked for SLE Lupus. A good Rheumatologist would be able to help you more than a general practitioner. It must be awful to not have proper treatment for your pain. I am under medicated for my chronic pain, but grateful to have at least some pain control. I hope you find some answers soon.

  • Jerry

    Have you ever heard of Sjorgren’s Syndrome? It attacks all of the glands in your body. Do you have dry mouth and eyes? This sounds like it might fit into what your are experiencing, that or SLE Lupus. Most people who have Sjorgren’s do not have antibodies in their blood. They must be diagnosed via a biopsy of the sores in your mouth. Please look that disease up and see if your doctor will test you for it. I hope this helps!

  • Jerry

    You could be having mini-seizures, or what is called mini-strokes (Transient Ischemic Attack)! You could also be experiencing Multiple Sclerosis, or even what I have APS/Hughes Syndrome. Those are the three main culprits I would do research on and ask your doctors to test you for these issues!

  • Jerry

    I am always worried my disease is going to kill me. I am on blood thinners for life. I have two possible scenarios that can happen. I can have another blood clot and die, or I can bleed to death and die. I live y life like a loaded gun is pointed to my head. You are also in a catch 22 situation. You are depressed because you are in pain, not in pain because you are depressed. Do your feet ever turn purple? Look up Raynaulds Phenomenon and see if that is what you are experiencing! Fibromyalgia can be another cause. Can you believe that here are some doctors who still believe men don’t get Fibro or SLE Lupus. Even APS, what I have, it primarily found in women. You are going to have an uphill battle getting your doctors to treat your pain without a diagnosis. But if it is causing you that much pain, you really need to see a pain management doctor. If your pain is on one food and it is cold, it can also be a condition called RSD, Regional Sympathetic Dystrophy. I think that is what it is called. It is where your limb starts to change and becomes sensitive to touch and in chronic pain. You can also look up CRPS, Chronic Regional Pain Syndrome. Before I got sick I never even cared about this kind of stuff. Now, from may years of reading, I know that anything can go wrong with the body for any reason at anytime. There are just so many things that can cause pain. It literally blows my mind. Hang in there, you will find your answers!

  • Jerry

    I happen to have two diagnosed diseases, but one of them is relatively new and not really understood or even known by most doctors. The other condition I have is severely downplayed by my doctors, but I know it is bad, because I have talked to many other patients who have the exact same condition. I have a blood clotting disorder called Antiphospholipid Antibody Syndrome/Hughes Syndrome and a complication of extensive deep vein thrombosis called Post Thrombotic Syndrome. APS is considered to be a Lupus Like disease in that it can attack many parts of the body through blood clots and lack of blood supply via sticky “or thick blood!” I has been known to also cause neurological, memory, movement, and many other issues. I go through periods of days where I sleep for up to 18 hours a day and do not feel rested. Then I have a normal schedule for a week or two and then it’s back to chronic fatigue and tiredness. I go between normal bowel movements and then going to the bathroom up to 12 times a day for a dew weeks on end. I am simply tired all of the time. I get severe burning in my legs when I walk too much, or too far and this never gets better, even with exercise. I have had these symptoms all of my life. I know the burning in my legs is from thick blood and poor circulation. I have never been able to run or do any type of exercise due to this dating all the way back to elementary school.

    My leg has completely occluded veins from left over scar tissue from an extensive DVT. I can only walk around or stand for an hour a day, sometimes two, and when I have to go shopping, it leaves me limping and in pain for up to three days afterward. I also have chronic left sided chest pain that stems from large blood clots in my lungs. I have a few abnormal EKG’s that indicate an elevated T wave and undiagnostic Left Ventricular Hypertrophy. I also have high cholesterol and type 2 diabetes which doesn’t help any of this. My chronic headaches and tiredness are not always due to my diabetes, because they still occur even when my blood sugar is under control. My doctors all tell me that DVT/PE are all acute events and that four years out I should not be having these issues, but I am. I have not been able to work or even function. I used to drive a truck. Now I haven’t even driven a car in four years. I am in pain management and receive pain meds for my leg, so my doctors must believe there is something going on. But they do not understand how debilitating my symptoms are. I literally spend all of my day with my bad leg elevated on a lazy boy chair to prevent swelling and pain. I still have pain elevating the leg, but much less pain that I would have if I were to sit with my legs touching the floor.
    I used to push through my fatigue by working hard for a few days and then sleeping all day and night on the weekends to compensate. I was able to do this until I had my blood clots three years ago. I can’t force myself to function anymore. Tried a full time job dispatching trucks from home and it turned out to be a disaster.

    I was able to sit in my lazy boy and had the business phone next to me, but my fatigue was causing so much brain fog that I was making costly mistakes when bidding on loads for the trucks. I was sending the wrong size trucks to pick up loads and getting their geographical positions mixed up all of the time. I was almost getting constant panic attacks that I was going to screw up. I had to resign. I used to be able to have up to 15 loads out and remember all of the details about every load before my blood clots. I have never fully recovered and my doctors do not even want to try and understand how bad this is. One doctor told me that my weight is causing my pain when I was heavy for years before the pain started. One doctor told me to take more Tylenol for pain before cutting me off of my 3 Norco a day. He acted like I was some sort of heroin addict.

    I just want my doctors to believe me and try and get to the bottom of all of this. My immediate family sees how I am now as opposed to four years ago. They definitely know I am not the same. I want to file for disability, but none of my doctors will support me. I am with you on not being believed and having to fight for help. Most people with APS/Hughes Syndrome have to wait years for a diagnosis. I got mine because I had huge blood clots and then passed two tests. But doctors do not know how to treat this disease in America. So, as you can see, getting a diagnosis is not my issue (unless my fatigue is due to something else) but getting someone to believe is. I was also tested for SLE Lupus, because some patients who have APS also have SLE Lupus. I do not have lupus and my TSH was normal. The only thing left to test is vitamin B12, vitamin D, Iron, and Ferritin. I had a MRI done because I had another case of Bells Palsy (right sided facial paralysis) for the third time in 20 years in 2014. My MRI is completely normal, so there is no MS or blood clots in my brain. I literally feel like a 90 year old man most of the time. That is the only way I can describe my symptoms at this point in time. Any how, thanks for posting your story. I hope you find the answers you are looking for soon.
    PS. May I ask what your current symptoms are? Maybe you have APS.

  • kelly
  • Anon123
  • Anon

    There is a place for people who are undiagnosed, the Undiagnosed Diseases Network.

  • kyla

    and i look sick in the face sometimes people look at me weirdly, my eyes look really sad looking my face looks droopy and i look like bitch but i know its because of the unexplained diagnosis.my skin is so pale and i get severe acne on my face no matter what i do…. i have wrinkles all over my forehead and my skin is so so thin that you can see my skeleton
    in my face.

  • kyla

    hi im 17 years old and ive been struggling with unexplained symptoms on a daily, i had these symptoms for nearly 5 years. its been effecting my school work, im failing school. i cant seem to focus because the pain is so unbearable. here are the symptoms i face everyday but people seem to not be able to know the cause, feet constantly cold they also hurt so bad when i walk. sometimes i feel like theirs a whole in the middle of my chest, it hurts really bad it feels like my heart is not pumping, my stomach has unexplained pains all over, sometimes i feel like my body is not sensitive to touch like im paralyzed but still able to walk and talk. also i have severe depression but the pain is what is causing it so what the hell am i supposed to do, am i just going to live a shitty life until whatever illness i have kill me? or is their a goddamn explanation for this im so fucking done!!!!!! i know i sound fucking retarded but i honestly dont give a shit at this point.

  • bonnierabbit

    hi im a 27 year old female, i have had a rough time over about the last year im always tired no matter how much or how little i sleep, my arms and legs get tires doing skmple things like walking to the kitchen or washing a cup if i sit down after about 10-20 minutes my legs go so numb i cant move them without useing my arms to assist and if i sleep and roll over on my side the whole side goes numb i can barly even work my manager has threatened to fire me multiple times because i just dont feel good and i have to sit down or take a break ive tried sodas teas coffees and also tried not useing any of the above doctors cant find anything wrong with me they lay it off on me being lazy but just a few years ago i was training horses, now i have become depressed and have anxiety issues but this didnt start till after the tieed all the time i have severe migraines with a coctail of symptoms that dont include a headach and i just dont know what to do anymore its so bad less than a month ago i tried to kill myself and my boyfriend walked in and stopped me but i feel likebi cant take it anymore any ideas?

  • Philip Anderson

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  • Adelina Kirsten

    Dear B.
    I randomly picked this site after looking for some support and your post reminded me of myself two years ago. When I first felt symptoms I had terrible cramps and stomach aches. I got several colonoscopies and such and nothing appeared. I developed diverticulitis a few times and eventually got to the point where i lost 20 pounds in a month because i was so nauseated. I went to 6 doctors, all of which looked at me crazy or told me they would refer me to such and such for a second opinion. When I went to the seventh doctor i literally left screaming at the staff and the doctor herself for being so ridiculously insensitive. Now even before my illness started to be a massive burden I was already dealing with severe depression and anxiety for which i had since i was 13 . I am 21 now and still battling my depression but thankfully I have knocked back my anxiety a bit. You see after my fiance and i realized we weren’t getting help from doctors we decided to be our own. We literally poured days into online research over diets, tips trick, blogs , patient advocate sites etc. There I found a book that I went through and helped me control my anxiety. Since then I don’t get tummy ache or muscles spasms or heart palpitations. I’ll tell you the difference for me was day and night. However, I still had the joint pain…..well without going on forever i’ll say that the best and most important thing to do is to accept the possibility that your life will have severe pain in it. And accept the fact that you may not be able to do the things you used to. Now I am a very proud person who hates asking for help, and after 2 years of being “diagnosed” with Rheumatoid Disease, I still cry and get angry about the things i can’t do but afterwards I try and lift myself up. posting inspirational or funny quote from movies , books or people who i admire helped a little during the morning i woke up and felt immediately depressed. Find strength in the people you love and the things you know make you happy. I have so much more to share about how i found at least a little balance in my life but my hands have started to hurt from typing. so if you have any questions or if you just need someone to talk to, let me know !

  • Jordan Bailey

    I’m 25 and am slowly losing myself to this chronic undiagnosed illness. I’ve lost friends, family, and my love for school. Its hard for me to get out of bed because the pain I endure daily. My symptoms started 2 years after having my 2nd daughter. Its been 3yrs now and im getting worse. I feel every physician thinks it’s all in my head and I’m at a complete loss. It first started with severe stomach cramps, some so bad I would pass out. Then it turned into anxiety when ever I would have these cramps, nausea when I didn’t eat, and now severe joint pain, neck “spasms”, and “tension headaches”. Some so bad that I end up in the ER. I’ve done MRI’s, endoscopies, colonscopies, x-rays, ive tried muliple medications, and even cortisol shots. My CRP levels are raised but everything else comes back normal. Ive been diagnosed with GERD, IBS, chronic neck spasms, and cysts in my joints. The stangest thing for me is all the pain is on my right side including the headaches. Ive seen every kind of specialist and am now going to see a rheumatolgist as a final suggestion from my dr. Ive become so depressed and am scared that no one will diagnose me. What if im stuck like this forever? Is my life worth living if I have to suffer this severely?

  • OCD Awareness

    Samantha…hope you are still on here. I would love to connect with you as I feel like I am in a similar boat! I just got married to a wonderful man. I was sick when we started dating three years ago and have been in and out of work since then. I quit my job in April and haven’t been able to go back to work since–a lot of the time I just sit around the house. I feel so guilty because my husband is working to support both of us. I applied for disability but got denied, which is really frustrating and it made me feel shitty, like the government is labeling me “not sick enough” when I feel so crappy! if I didn’t feel this way, believe me, I would be working! I have a life history of over-achieving and was always just a go getter and now I’m the one being supported. It’s so hard. Your post made me feel like I’m not alone.

  • Newyorkerus

    I am so sorry that you are going through all of this. I just turned 26 and have been living with an undiagnosed condition for 7 years. I can’t get out of bed most days. How do you cope with being our age and not being able to function? I find it so hard to watch as others do great things with their lives, and I am stuck.

  • key

    I’m so very sorry that you are so young and having to suffer the way you are. I wish there was a way for all of us to meet one another cause I honestly thought that there wasn’t a single person that could really relate to my suffering, and yet here you are unfortunately. It takes people with deep compassion and Godly love to want to understand what we suffer and still look at the beauty that the core of us truly possess. We are people with personalities, hopes and dreams and we just happen to have dibilitating illnesses that try to mask our true inners self. Thank God we have a hope that will soon end our suffering , its mentioned at Revelations 21: 3,4 “and he will wipe out every tear from there eyes and death will be no more the former things have passed away.”

  • key

    Hello. My name is key And I am a 34 year old women who has been suffering with undiagnosed auto immune diseases as long as I can remember. Its affected my whole life since I was a very young little girl. When I was about 4 most times Ihad aa difficult time breathing I would gasp for air uncontrollably And yes my memory does go back that far.even though sense a very young age I’ve always been very out going, precocious, jovial, and loving. Problems that were happening to my body that I didn’t understand were interfering with my ability to achieve and succeed in any thing. Through out my life sense I was young until just a few years ago many people, adults, and programs would notice me and sponsor me for my artistic abilities. Some very well known well astblished artist them selves have taken me under their wing to shadow them in there careers. Some would give me assignments to complete to teach me and prepare me for stardom I suppose.Anyway, all of these people have vanished. Now I very seen many specialist. I’ve been referred to one of the top ten specialist clinics in the country went there every two weeks for over a year straight and I am no closer to finding a diagnoses. I allowed some people to talk me into allow Dr’s to put me on meds many of them were prescribed for mental illness. my problems only worsened. They caused me to be hospitalized.I soon stop taking prescription drugs and started experimenting with vitamins.I have very negative reactions to most of them as well as to all food, liquids, hair products, body products, cleaning products, and perfumes. My symptoms or reactions are fluids pore through my body aggressively and It burns and hurts. This makes me swell so massively that I can go from a size of 165 pounds to 200 pounds and back down again in just a few days. My face neck arms and hands skin breaks open pusses and bleeds. My skin sometimes shedds all over my face it hardens and I have to scrub it of and this process is very painful. My teeth hurt and throb every day I’ve learned that this is from the vitamin capsules that I take and they are causing me to have ulcers. I exercise rigorously to combat my illness because obviously in my body sees itself as an enemy and is attacking it self but when I exercise most times my body trys to fight back and I suffer dizzy spells, fatigue, nausea, severe tingling due to very poor blood circulation. I’ve been diagnosed with narcolepsy but they can’t treat it because all the meds prescribed for this condition makes me very I’ll due to all of my other undiagnosed illnesses.I’m telling you, there is so much more that I suffer. Not to mention how all of this affects my social life. Potential companion ship, education employment. And literally just my every day common functions of life is completely disrupted. When I can control all of these problems which is not that often I’m actually not hard to look at. I am a pretty girl, who is very loving and I appear to have a lot of cofidents. So, like you, some don’t take me seriously, some think I’m lying some think I’m crazy, and some just say: ” BUT YOU DONT LOOK SICK”…

  • Renee Klein

    Just found this website and I’m so glad I’m not alone! I’ve been fighting an undiagnosed demon for 20 years, I’m 34 years old and I have 2 kids. I even always been a go getter, put myself thru nursing school, while also working part time and taking care of my kids alone. I’ve always remembered being sick ,lethargic, and achy, but it intensified after the birth of my son 2 years ago. I now have no choice but to be a stay at home mom. Even that though is beyond exhausting. I’m getting migraines, constant swollen and sore throats,ear pain and fullness,racing heart, excessive sweating and heat intolerance, my neck is stiff and painful to touch, my joints ache when I move, the nerves in my legs burn sometimes so bad I’m hospitalized, I have sores in my nose, and mouth sometimes,I’m constantly tired, but have problems sleeping, I have diarrhea about 7 times a day which has caused weight loss, my legs are always bruised and purple looking. I’ve seen various specialists, had tons of blood work, mris,cat scans, sonograms, I’m just so fed up!!! I’m sick and tired, no one wants to be around me anymore,my kids know I’m always cranky, I’ve lost many friends, and it’s led to awful depression. I’m just so confused how no one in the medical field can find any issue. I know it’s not in my head, but I’m starting to feel crazy recently.

  • Thomas Peterson

    Dannyboy you have a parasitic infection. No, I am not a doctor, but I am an expert in this particular field as I have been studying it for almost 30 years. Here’s your problem though; finding a Dr that will treat you . Most will blow you off and insist it is not parasitic because we are in America. This is where I lost faith in Drs. The cdc claims there are in upwards of 33 million people in the USA infected with one or more parasite. That is 10 percent of our population. That is an epidemic in reality. Its a problem they are ignoring for some reason. If in fact you do find one that will treat you , you have to make demands. Even if it doesn’t show up in a stool sample, you still could have it, because the most effective test available right now is only 13 to 17 % accurate on only about 6 % of the parasites out there. The tests are no good. Tell the doctor you would like to try a round of 750 mg flagyl, 3 times per day for 10 days. Plus a luminal to kill the eggs. In 2003, I tried this without testing and in a matter of hours, I was completely well. It worked immediately. My ears popped and I was well. I was telling everyone I was cured!!! Now the tragedy. My Dr. Did not see a need for the liminal agent. So, 3 days after I was finished with the flagyl, my bug came back with a vengeance. I am now the owner of a gut filled with flagyl resistant parasites. True story . I do have the best luck. I can’t remember the name of the liminal, but if interested, I will look it up . Your symptoms sound identical to mine. Do it exactly like that and you could very well be cured. Also a very helpful site to check out is badbugs.org. Jackey Delany suffers too. Most helpful site to date. Please let me know if this helps. Good luck.

  • Dannyboy

    I will bring it up to my family physician, they’ve tried everything else so I don’t see what it would hurt at this point.

    I’m sorry to hear you’ve been dealing with the problem for so long. I’ve got 3 daughters and a wife and it has left me unable to help support them financially, it has left me unable to attend a lot of school events for my daughters, I’ve missed out on portions of all their lives that I’ll never get back. I’m afraid of missing out of even more. And it’s hard to explain in detail the feeling of chronic, debilitating nausea, but most people take it as “so you have a stomach ache”…..not exactly.

    I wish you luck and, at the very least, tolerable days until we can find out what is causing this.

  • TeeCee

    Have you been tested for any parasitic infections? Some, ( the type I believe I have) are impossible to rid. I am 46, and in August of next year will be 30 years since my suffering began. I am friendless, jobless, left behind without a clue what to do next. If you can find a Dr, in the US that will seriously listen, and insist on better testing methods for they are also very hard to detect. But, as I lay in the ER in 2012 recovering from a self inflicted overdose of sleeping pills, and explaining to the dr my story, he said what they all say, “This is the United States!! We dont’ have parasites. Those come from undeveloped blah blah blah” It could be worth a shot. What just makes me want to drop is when someone says, “Oh you still not feeling well??” No ma’am, I do not.

  • Dannyboy

    I’m 37 years old, for the past 7 years I’ve been battling a crippling stomach problem. I’ve seen every specialist you can think of, I’ve went through more procedures than I can remember, cameras ran through any hole they could find on me, pounds of pills to at try and help me cope with what is going on, even surgeries….none of it has made so much as a dent into the crippling and debilitating nausea that has taken over my life and it has no name, no diagnosis, no starting point.

    Whats worse is, it has worsen over the last month, and the past 2 days it has started to beat me mentally, I’ve fought it and went to every doctor they could think of and none of them have made even an inch of progress…it’s got me in a pretty dark spot at this point.

  • misscharlie

    I’m 18 years old I have been sick my whole life but in the past 2 years its got extremely bad I was always a skinny child I was too skinny actually and all of a sudden I put on massive amounts of weight in a very short period of time and with very little change in diet which did lots of damage to my self-esteem. because of the weight I got big purple stretch marks everywhere even on my boob witch are very small. I have pains through all of my joint they as so painful that my eyes begin to tear and scream into my pillow Panadol does nothing and the doctors wont give me anything for the pain, I’m exhausted all the time, my periods have come to a complete stop for 2 years, I get bad brain fog, my eyesight has worsened and its very blurry, I have head aches, extreme exhaustion were I just cant get out of bed, I have constant hives, dark rings around my eyes, I have a moon face, I have severe depression, anxiety and panic attacks. I had to quit my job because I cant work I’m stuck in my bed my body is holding be prisoner and I cant get out. I have been tested for everything the have taken so many test and the doctors say I’m the perfect image of health they look at me and because I’m over weight they think I’m just fat and lazy they don’t think that maybe the reason I have weight is a symptom not me just being lazy I feel like yelling at them don’t they realize that I would give anything to be able to go swimming again get a job again get out of this dame house. they sent me to a psychiatrist witch he said I just had to start moving and get a job and socialize more why wont they listen to me I want to do that but I’m in pain all the time I’m 18 years old there so to be the best years of my life and I’m stuck in bed and they think I want this I have never had a boyfriend I never been kissed, all be cause I’m sick and nobody can help me. I cant handle going to the doctors and all the test coming back negative I don’t want to do this anymore I want it all to end.

  • Slayven19

    You have some things that I have an I’m also undiagnosed for the moment because I don’t have insurance to go see these specialist yet. However I will keep you in my prayes(yes even if you don’t believe in god) and hopefully we can get thru this.

  • Jennifer Noble

    I am a thirty-one-year-old female who has been suffering from an undiagnosed illness for over ten years. It started with neurological symptoms such as numbness and tingling, for which I received an MRI that showed an area of demyelination. I was told that this could possibly lead to MS, and that I would need further monitoring. When I went to the neurologist for a follow-up MRI a few years later, they treated me like I was just a perfectly healthy individual and attempted to sell me their line of supplements. I thought in my head “Yeah, I look fine now, but you should have seen me two days ago, pale as a ghost and unable to get out of bed!”

    While the MRI showed no new activity, my condition continues to worsen. I have now been told I may possibly have lupus, as I have been having issues with my skin and blood vessels. I have developed livedo reticularis all over my body. My once white and smooth skin, is now blotchy, dull, and veiny. I just want to know what is causing these changes to my body! It is so incredibly hard to accept, as I have always been one to practice a healthy lifestyle, yet my body continues to turn against me. This, in turn, causes me to enter a depressive state of mind, although I have always tried to be a happy and positive person there is only so much one can take.

    I have an appointment coming up on August 5th with a new doctor who seems to be taking my concerns seriously, as compared to my previous doctor, who labeled me a “healthy thirty-one-year-old female with anxiety” without so much as physically examining me. I feel as though the longer I have to wait to get help, the worse my symptoms become, and these recent changes to my physical appearance have done a number on my self-esteem, bringing me to a very low point. It is truly frightening to see your body change before your eyes and not know the mechanisms causing it. Knowing the cause would at least help me to cope. I feel so alone. I have a loving boyfriend, but I feel I have nothing to offer him lately, as I feel so disgusted by these changes in my physical appearance. Not to mention that I never know what day I can function and what day I will be laid up in bed. I have lost so many days to this phantom illness, sometimes I have had to work through it, putting on that brave face, others it knocks me down for the count.

    I wish there were support groups for this kind of thing. My thoughts are with all of you who share the same burden. I hope for peace for all of us.

  • Samantha Davidson

    I’m 27, and I’ve lost everything to whatever “this” is. I can no longer go to school or work, most days I can’t get out of bed, yet I can’t sleep either. When I do my muscles spasm and don’t release for hours, waking me up and keeping me in pain. I vomit so much I have recurring bleeding ulcers on my oesophagus. My resting pulse is over 110, and I’ve been told to no longer do anything active because I could go into cardiac arrest. I’ve always been athletic. My tests are over the map, one day I’m registering as hypothyroid the next its fine. I have precordial r wave progression, whatever that means. I have sores on my skin that leak clear fluid but don’t bleed. There’s no feeling for three inches around it on my skin but my muscles swell and hurt like hot pokers. I’ve lost most feeling in my feet, so much so that I went over eight hours walking on a piece of glass imbedded into the ball of my foot without knowing. My ANA tests are in the high range, but point to no diagnosis. I’m dangerously anaemic but no dose of iron I’ve been placed on has budged my levels. I’ve had biopsies and more scheduled.

    My doctor is a saint and the first one to reassure me its not in my head. I know this rationally, as there’s a mile long list of red flags and quasi diagnoses. I’m just tired of searching, and waiting. Every test just brings more that’s wrong with my body to light, but gives no answers aside from what I say is wrong is actually wrong.

    My liver failed last year, and sent this attack from my body into my body into hyperdrive. They still don’t know what caused it, though, despite being days away from needing a transplant and my levels are back to normal now.

    I’m scared and I’m frustrated. Every day I’m watching more that I love of myself disappear. When the brain fog kicks in I can’t even read or watch TV, the only thing I’m aware of is the pain, the spasms, the burning itches all over my body. I have to stand up slowly so I don’t faint, I can’t have a bath by myself because I pass out.

    The doctor brought up the cancer word today, and its only a matter of time before those tests begin. I don’t care what the answer is anymore, I just want one so I can start my new life without the doctor calling me to come back in, to run more tests.

  • Ms Clarke

    I am 28, undiagnosed autoimmune disease and have been sick for over 8 years.. I feel your pain so much, and I teared up reading what you wrote, for you spoke exactly how I feel…..I am a medical mystery and at this point, doctor’s don’t even try to help me, or give me any relief…I have no diagnosis, no medication to eleviate symptoms, no EVEN HINTS and ive been to specialists and doctors all over the country…
    i have lost friends, i don’t even attempt to date, i am so exhausted from my illness that i feel like i am a burden on absolutely everyone