To the Suffering Undiagnosed, I Know You Aren’t Crazy (Even if No One Believes You)

 

Are you still looking for answers for ill-health without help and understanding (or know those in that position?). This letter is for you. What if you were suffering from an illness that was slowly ruining your life, or even shortening your life, and everyone around you told you that you were “just fine”, and that “everyone feels a little off and tired now and then”. What if you were in terrible pain or deep fatigue, and everyone said it was just in your head?

There can be tragedies and health issues that we understand fairly well, and most can certainly be compassionate and merciful towards those suffering under them. But there are other illnesses that are not well understood, or understood at all. There are kinds that don’t affect your outward appearance and your longevity, and so people assume “It’s not that bad.” Worse yet, there are those given a clean bill of health by their physician, yet they know that something is deeply wrong within themselves. Their doctors, friends, and family can brush off their complaints, doctors can under-diagnosis, or say that it’s all in their head.

But they are suffering deeply, and it only makes their suffering deeper when no one seems to understand.

Illustrated through Lyme Disease

I’ve been thinking about this issue a lot as a dear friend of mine is battling Lyme disease. There is a wide range of severity to the disease, and her case is on the more extreme side, especially considering that she’s probably had it for about ten years without it being treated or diagnosed. At this late stage, there has been horrible pain that even the strongest pain medications can only alleviate so much. As her husband, family, and friends have gathered to help with her treatments, take her to the doctors, love her, pray for her, and give her compassion and help whenever she has needed it, it has brought a flower of hope in the middle of great suffering.

What makes my skin crawl is that Lyme disease, with all of the horrible, painful symptoms it can produce, was, and is even still, so under-diagnosed. Patients suffering what my friend is now suffering have been told, “You need psychological help, not physical, because it’s all in your head.” No pain medication, no real compassion or understanding, just judgment while you walk through a valley of pain with little hope.

If advanced Lyme disease wasn’t an earthly hell enough, surely being untreated and misunderstood and judged makes it even more so.

It makes me wonder how many people today are still in that position. Perhaps their health condition is undiscovered still, or perhaps they aren’t diagnosed yet – despite attempting to get care. Perhaps a doctor hasn’t been able to fit the confusing individual symptoms to the true cause yet. And so they suffer on with little knowledge of what is really wrong, and little hope.

Illustrated through my story

Sometimes this includes things not as serious as Lyme disease. For me, it was un-diagnosed low iron. We suspect I was low since my high school years, but since I was able to pass with flying colors the most common test for anemia, I was never properly diagnosed despite my many symptoms of low iron. It was actually a fairly simple problem, but finding a solution was really hard.

I was taken to several doctors during my high school years and given a clean bill of health each time. I started seeking help for myself when I started wondering if the bone-tired feeling I had all the time (and the frequent infections at certain points) were normal. I did get some beautiful help from some excellent naturopaths, but still my energy was low, even if somewhat improved. When my blood tests showed that I was well nourished and “healthy”, my continued fatigue, and my signs of a slowed thyroid function were shrugged off. Hints of being a little hypochondriac were implied. I had a hard time helping friends around me understand how badly I felt, and how tired I was, when I looked fine on the outside, and functioned fairly well despite the fatigue.

By this time I had learned to trust the distress signals my body was sending me, and I knew all was not well. But it was livable for the moment, and I had run out of options and ideas. Years later, I found myself increasingly dragging, my hair falling out rapidly, and an even greater fatigue that I was no longer able to fight through. I thought I was dying. I sought help again, found a doctor that took me seriously, got better and more thorough lab testing done for me, and through that discovered I was deeply iron deficient, which was also unbalancing other parts of my body as well.

And I was deeply grateful for two things – being treated with compassion by a doctor that believed me when I said I felt awful and felt something was wrong. And secondly, finding out what was wrong.

It was a comforting hope. No longer did I beat myself up for not having the energy I needed for a well-rounded life. I understood myself better and was able to give myself grace for the reality of my situation, and hope for a better reality soon.

I wonder how many out there suffer like I did, with undiagnosed nutritional imbalances or deficiencies, who are shrugged off by their doctors, treated as lazy or crazy or both by friends or family, and who wonder themselves, whether not everyone feels as bad as they do, but are just able to put a better face on about it.

If you are in that position, here are some words for you.

An Open Letter

Dear Undiagnosed Sufferer, I know it’s not just in your head

I’m sorry. I’m sorry that you don’t get the help and compassion you need from finite humans. I am sorry that doctors don’t understand, don’t listen, don’t know, don’t run proper tests, or give you the resources you need.

The fact is, no matter how many strides we make in health and science and in treating people, there is still a lot more to learn. And sometimes unfortunate ignorance, health issues yet discovered, or perhaps still misunderstood diseases create a double victim. It creates a victims of a health problem, and a victim of misunderstanding and judgment.

There is nothing I can say to make that reality better, but I want you to know, I understand what it’s like to be there, and feel those things. I understand the helplessness it can produce, and the heartache and continual physical pain you can walk through. I understand the self-doubt, and self-condemnation, the frustration when you try to move on in life, but just can’t.

Because we aren’t all knowing, and because have so much to learn still, I can’t promise a better tomorrow. Yet…yet, my word to you is still this: Don’t give up. Don’t give in to despair. Help may just be around the corner. Keep looking for answers. I’ve found so many good and compassionate doctors, and I’ve come to realize that not all have the same knowledge on the same things. While it took time, and created hardships financially, not giving up, and continuing to see other doctors and looking for answers often bears fruit for many of us.

That’s my story, and the story of my friend with Lyme, and other readers here too. I can’t guarantee that will be your story, but there is hope there still. We may not have all of the answers yet, but I am continually amazed at what we do know, and the current research that there is.

I’m not saying it’s easy, or that it always works out how we want. We’ve lost a child, which modern medicine couldn’t save despite much promise. We’ve lost a parent which alternative care, and a very healthy lifestyle couldn’t save, also despite much hope. It can be easy to say, “Tomorrow we die, so eat and drink and be merry.” I say, enjoy today, relish  it and be glad for it, no matter what lies in stock for us tomorrow. But also see the beauty in the fight for a better future as well. It’s not only armed forces that fight wars; it’s not only the scientist, the naturopath, the doctor that fights the war against illness. Often the first step towards getting better is fighting for hope, and with that hope fighting for answers and not giving up, not giving into despair.

And, if I may, a word to my Christian readers: What a relief to know that our final hope is not in whether we find the answers we need for healing our earthly bodies. What a hope we have that even if we lose an earthly battle against sickness, lose against receiving compassion and care from others, and finally lose hope for wellness here, what a relief to know that better things, that a whole, un-painful future awaits us, bought with the precious love and sacrifice of Christ. We find love and care even now from this, and true healing awaits us. That is the hope against all hopes worth fighting for.

In closing, there is so much pain and hurt in the world, but there is also so much beauty and hope as well. Find that beauty and hope wherever you can, and enjoy and savor them. While there are always dark times, and sorrow in our lives, there are also times of great joy, and ability to continue fighting well.

So fight on, dear friends. And may tomorrow bring more joy.

With hope of better futures for many of you,

Love,

Kimi

Last thoughts: I’m not discounting that there are never those with purely psychological issues that cause them to feel sick and ill. I simply think that it’s unfortunate that those with very real, and treatable diseases can be misdiagnosed with that. However, even situations where the origins lie purely in the brain, they should be given compassion and love and care, as those illnesses are real in the minds and lives of those suffering under the mental pain of thinking they are sick. Those suffering mental illnesses should be given the same compassion and care as those with other physical illnesses.

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I love beautiful and simple food that is nourishing to the body and the soul. I wrote Fresh: Nourishing Salads for All Seasons and Ladled: Nourishing Soups for All Seasons as another outlet of sharing this love of mine. I also love sharing practical tips on how to make a real food diet work on a real life budget. Find me online elsewhere by clicking on the icons below!

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Comments

  1. Casey says

    Thank you for this post! I am 30 and had
    undiagnosed endometriosis for many years. I also have intercystial cystitis and vulvar vestibulitis. I grow more weary from feeling crazy at times than anything. Thank you a million times.

  2. casey says

    Thank you for this post. I am 30 and had undiagnosed endometriosis for years. I also have interstitial cystitis and vulvar vestibulitis. At times I grow more weary from feeling like I am crazy than anything. Thank you again for this post!

  3. Sunny says

    Thanks Kimi. I have been fighting this fight for over 10 years and only in the last two have finally found some answers. I have seen 4 GI docs who diagnosed me with IBS and depression and could only offer fiber and antidepressants. Years later, after hours of research, many specialists, (some quacks and some not so quacky) and advocating for myself I have at least come across some doctors who have found some severe infections : intestinal parasites, viruses, rickettsial infections from an insect bite, pneumonia, and other intestinal bacterial and fungi. The list goes on and on. Finding someone who knows what to test for is key. Don’t guess, and if a doctor won’t listen and work with you it’s a waste of your precious time and life. We travel 3.5 hrs to get the right treatment. Remember, they work for you.

    You are right. We can not give up. It is absolutely defeating to put your hope in doctors who can’t find anything wrong or worse those who tell you they can help but fail. You try many different treatments without success and wonder if it’s worth moving on to the next doctor. The energy, financial burden, etc, it takes to move forward requires warrior strength to pick yourself up and try again. Like you said- the biggest battle seems to be the fight for the hope of feeling better one day. Without this, it all seems futile. You can’t give up, because the solution could be right around the corner. For me personally, Jesus is at the center of every battle. Although it can be very lonely, I am not alone. He knows what it’s like to suffer and He is always there with me. The more intense the symptoms, the closer He is!

    So no, we are not crazy. Although many close to us do not understand. For years I did not have any “proof” ie, lab work or diagnosis that there was anything wrong. It seems silly to rely on a piece of paper to find validity in how you feel, but that is what people understand. Why is it so hard for them to be compassionate even though they don’t get it? (Maybe that could be another post lol) For anyone still seeking answers, please continue to listen to your gut and don’t give up and know you are not alone.

    • says

      Sunny,

      Thank you so much for sharing your story. Yet further proof that many live through this type of situation. Soooo glad you were able to find a doctor to properly treat you. You said, “Finding someone who knows what to test for is key. Don’t guess, and if a doctor won’t listen and work with you it’s a waste of your precious time and life. We travel 3.5 hrs to get the right treatment. Remember, they work for you.”

      True, and true.

      • Sonya says

        Kimi
        I have battled low iron that I just can’t seem to get up. What are some of the things you did to correct your iron deficiency? Also your friend with lymes disease, did she have a known tick bite and what were her symptoms?
        Sonya

          • Sonya says

            Thank you for your reply. These posts are very interesting. I also have a history of hypothyroidism. A few years ago stress was high and I crashed. Long story short my hormones were so out of whack (I will be 44 this month). My symptoms consisted of numbness and tingling twitching muscle spasms. Just crazy sensations. I am much better now but still get burning on my scalp and eye twitching. It bothers me. I have seen all kinds of doctors even out of state and have been tested for all kinds of things. I have also developed strange food sensitivities. How were you tested for sensitivities? I am eating well gluten free. I recently heard that low calcium can cause some of those symptoms. I have irregular cycles. Could it be menopause or premenopausal symptoms. What other deficiencies should I look close at? Any thoughts?
            Sonya

  4. Gina says

    I will be 70 this year and have been in this “state” longer than I can remember. Beginning with tonsillitis almost all year long as a child. Have had very compassionate doctors who have tried for me but to know avail ~ ~ ~ except an erratic thyroid that they can’t seem to stabilize. I have wonder about my iron, but it shows kind of a low normal on test and the MD’s worry about too much iron so they don’t offer any thoughts on how to just bring it up a bit and see if I feel better. I do dark greens regularly, feel my best for a couple of hours after a beef meal, but don’t feel strong if I eat it every day. Liver? How did you stabilize iron and thyroid? I feel a bit of an inner strength that makes me feel there is hope if I find the right key.

    • Inna says

      Gina, have you had colonoscopy? Polyps, which may cause light bleeding (doctors refer to it sometimes as a “leakage” causing iron and B12 deficiency), can be detected by colonoscopy and are recommended to all after 50 or anyone with a family history of polyps and other intestinal problems. Regarding thyroid, consider switching to the Paleo diet. It commonly stabilizes thyroid function.

    • says

      Gina,

      I know how that is. It is so hard for family members…and too often compassion and sympathy only lasts so long. It takes a lot of patience for everyone.

    • sue says

      hi Gina,
      I know how you feel the kids to me are the worst of it …i always feel the kids are attacking me …because i always have an excuse to not go to event etc…and they make thing up to make matters worse …i forgive them to me they have been throu the worst of it with me ..cancer 8 times…lol and they still don’t believe im ill …on kidney removed ..uterus gone …but im the hyper condreact looking for the problems …….i feel bad ..for feeling ill …but i have learned not to push my self if i can’t do it and they will have to just lump it up ……i do my best to spend time with the grand kids …..and doing special things with them ..like baking cookies or painting ..etc ……but i want to cry tonight …it was my grandson 1st christmas concert and i couldn’t go because im going for a pancreatic biopsy tomorrow and i can’t risk getting ammonia….so i had to tell my daughter i couldn’t go…it would be a serious risk if i did….she didn’t say such nice things to me..because i went to lay down not feeling well…as well i work hard real hard to make a picture of her ..a pencil portrait …she saw the flaws right away …and left it behind …. and i cried the whole night ……….i am so sick of feeling …sorry for my self ….OOOOOOO and the doctors ….they have made it worse by saying things that are so wack ….omg you wouldn’t believe me if i told you……….but i have one thing going for me… left …and that it is my common sense …if it doesn’t sound like it applies to you…. than it probably doesn’t …..i went for an ultra sound…A none-painful ultra sound and screamed blue murder………just in tears……but they insisted that they bust this cyst 6.5 fluid oz they took out ..almost a cup….now it seems like my muscles are deteriorating rapidly …i have a stiffing pain in my mid section ever morning when i wake up …like my body being eaten alive ….still have to go for more testing ….im fighting every day …and im tireder of having to prove my self …and when one thing goes …another pops up …how does one keep fighting I’m sorry to burden you with my tears …but i just had to let it out

  5. Jen Splonsk says

    It took 5 years before I gave up on traditional medicine and sought a naturopathic doctor who connected all the dots for me – chronic achiness and depression. A hair analysis revealed TOXIC levels of heavy metal in my system and stressed adrenal glands. No amount of physical therapy for sore muscles could get rid of the toxic heavy metals. Thank God for doctors who do take you seriously!

  6. Sandy says

    Thank you for writing this. I spent over 20 years being told “there’s no such thing as being allergic to (fill in the blank). I took steroids to stop tongue and throat swelling and lived on Benadryl, even though “everything was in my head”. I had a doctor flat out write me a prescription for Prozac. An allergist, mind you. Turns out science finally caught up with me when genetic testing became widely available. I have Multiple Chemical Sensitivity. When the Naturopath finally laid down a genetic test that provided the answer I wept with relief. I wasn’t crazy. I wasn’t happy that I was ill, but at least I now know what’s wrong with me. It cant be cured (yet) but at least I can name it, avoid what I can, and use supplements to help my immune system. I seriously wouldn’t wish it on my worst enemy — the constant implication of you are crazy and there’s nothing wrong with you. My advice to anyone that is treated that way is find another doctor — a naturopath is probably more willing to listen and dig for the problem — and never give up.

  7. Barbara says

    Thank you, Kimi, for coming alongside those who are suffering and for your own journey as well. Thank you for including our eternal Hope, our Healer, our Comfort in Jesus Christ in your encouragement. One day He will dry every tear. I want to share that the devotionals by Sarah Young have changed my earthly life as I, too, await (sometimes in suffering) a home in heaven. Sarah wrote Jesus Calling, and more recently while undergoing long and painful treatment for Lyme Disease, she wrote Jesus Today. The whole intent of this devotional is daily encouragement to hold on to Hope. The scriptures are written as if God Himself is speaking…and He does, directly into my heart. Every morning these words breathe Life into me. My hope is that they will do the same for you and those you love and are caring for as well.

    • Sunny says

      Hi Barbara,

      Thanks for sharing about the devotional. I am always looking for encouragement from those who have been through the physical suffering themselves. It makes the writing so much more relatable for me. Charles Spurgeon’s devotional “Beside still waters comfort for the soul” is a collection of one page sermons dealing with illness, discouragement, depression, etc all things he has personally dealt with and has been a great resource for me for years. Thought I’d pass it along!

  8. Jessimer says

    A million thank you’s for this heartfelt post Kimi. I am 28 years old and have battling Endometriosis since puberty with zero acknowledgement from healthcare professionals. With the love and support of my husband, I have chosen to heal from this disease as holistically as possible, (as western medicine has little knowledge of it and even less patience). Your message is a shining star for anyone who suffers from an invisible disability. I just printed this letter out and will place it in a prominent space where I can draw strength and encouragement from it daily. Thank you for your open compassion towards so many of us who benefit greatly.

  9. Repolla says

    Hi Kimi, what can I say, your post made cry like a little child. I have been struggling with candida for a long time. I gave up going to the doctor, and sometimes I feel like I will not find healing. The most difficult part of this is that nobody seems to understand how awful I feel, not friends, not family. I am alone and this makes it so much harder. I only have God and everyday I wonder why He has not healed me, because He can. I eat the healthiest I have ever eaten and no matter how hard I try, I feel awful. Every morning when I open my eyes, it is by his power that I am able to get up and go to work, I have to, because I am a single mom with two kids and I do not receive financial help from anyone. I rejoice that you could find the true cause of you terrible fatigue and symptoms. I will continue to pray that God will lead me to the right path for healing and that he can provide the finances, the time and the energy to do it. God bless you for that letter, it felt like someone finally understood how bad I feel.

    • sue says

      hi my name is sue ….i did discover one little thing on my own and that is Food Grade Diatomaceous Earth …it will clean out your blood vessels and it will allows oxygen to be absorb again properly …..i hate hearing people suffer especial from candida I PERSONAL TOOK THE 70MG BAMBOO DIATOMACEOUS EARTH IT IS IN PILL FORM AND THE HIGHEST IN SILICA you can find it at ANY HEALTH FOOD STORE BUT BE CAREFUL IF YOU SUFFER FROM CONSTIPATION …LOTS AND LOTS OF WATER …and always ask if you are any other meds if it will conflict ………THIS SAVED MY LIFE ……….HERE IS A LINK IF YOU WOULD LIKE TO READ ABOUT IT 5 Benefits of Diatomaceous Earth – Global Healing Center
      http://www.globalhealingcenter.com/natural…/5-benefits-of-diatomaceous-eart...
      i have nothing to do with this company in any way…. nor do i sell this product …im just trying to help you get your life back
      ……SO SO MANY PEOPLE ARE TAKING THIS PRODUCT WITH EXTREME CLAIMS OF FINDING A SOME-WHAT of a CURE TO SO MANY ALIMENTS i did not believe it at first ….it will also remove intestinal worms ..HELP PEOPLE WITH LUPUS .Diatomaceous earth is a naturally-formed sedimentary mineral rock (like ancient fish bones). It’s derived from the remains of diatoms, or oceanic unicellular algae. [1] Diatoms are over 30 million years old and are formed from the cementation of microscopic algae-like plant remains into the earth’s surface. These clay-like, chalky remains are usually found in the form of a thick, white, siliceous powder known as diatomaceous earth. [2] Often used to support body cleansing, some research also suggests it’s a natural tool for promoting normal blood lipids, detoxing toxic metals, and fighting harmful intestinal organisms. PLEASE REMEMBER THIS THEIR IS TWO KINDS ONE IS FOR POOLS NOT EATEN BY HUMANS AND THE ONE YOU CAN TAKE IS CALL FOOD GRADE DIATOMACEOUS EARTH IF YOU HAVE AND QUESTIONS FOR ME …….I WOULD BE GLAD TO SHARE

  10. Sheryl says

    I have been on the road to figure out what is wrong with me. Your story sounds so familiar. I believe I have something along the same lines, thyroid and anemia, but my tests are within the “normal” range so the doctors keep telling me I’m fine. What kind of doctor did you see that was able to figure it out? Thanks for your help.

  11. says

    Thank you so much for this – it very much struck a chord with me and my journey to figure out what is happening with my daughter’s health. For years I have been fighting to get to the bottom of her confusing symptoms and have “fired” many, many doctors. It is astonishing looking back at how many doctors told me the symptoms I was observing were “impossible.” One of the best lessons I’ve learned is that if a doctor does not listen, and does not give credence to what you are observing, they will not be a true partner in your healing journey. And doctors who listen do exist! Sometimes we have to look really hard to find them.

    One recent breakthrough we had was doing the MTHFR test – which revealed that my daughter has a genetic mutation that makes her body not able to detoxify like normal people. This helps explain her complex issues and I’m hopeful that it will be a key to figuring it all out.

    I have spent countless hours doing research and reading book after book. We have tried so many alternative therapies and mainstream treatments. Each year we get a little closer to figuring it all out. I’m sure there are people in our life who think I’m crazy for all the things we’ve tried, all the diets we’ve tried, etc. but in my mind I’m only answerable to one person: my daughter.

  12. Sarah L says

    Thank you. Never give up- is the key. There is always something new discovered or found around the bend. Sometimes it is personal research that helps us find the right approach. It can take time and persistence, and luck to find the right treatment. On line forums can be good places to search. I like Susun Weed’s approach philosophically; start with the gentlest thing (like foods and herbal teas), and work your way up to the more serious, stronger meds or operations, only when necessary. You’ll have done your body less harm and more good that way. I always try the natural way s first.

  13. cathy says

    Oh Kimi, You brought me to tears. Beautifully written. Why must there be a battle over your own health. After 4 doctors and the newest one being an Endocrinologist who I thought was listening to me really is not. But the battle continues. Because we want nothing more in life than to feel normal. Thank you for your encouragement Kimi I will continue to be Heard. Cathy

  14. says

    Thank you for writing this. I have dealt with chronic Lyme for almost seven years. I could tell you horror stories about the way conventional doctors treated me. Without their help, I had to navigate the holistic medicine field. Thankfully, I had a “mentor”. Without a regular doctor ordering or prescribing, everything must be paid for out of pocket. I cannot tell you how huge those amounts can be. My “mentor” spent all of his inheritance on trying to get well. This post was very encouraging. I am not the only one who has been told it is in my head. I teared up to read this. Thanks.

  15. Angela says

    Thank you for this post! I completely agree that while a test result should not be the only thing that validates a problem. If you have negative labs… you still have your problems, but no help. I have had undiagnosed joint pain for 3 years now. I just saw a doctor who mentioned the word “seronegative” for the first time. It gave me a little hope that she is more openminded.

  16. says

    I have scoliosis compounded with osteoarthritis in my spine.I am 26 years old, and I went undiagnosed until last winter. Since college, I have been in an it of clinics and urgent care centers due to my back, causing me to lose feeling in my arms and legs, as well as indescribable pain. But no doctor believed me, or just said that it was due to rug use. (a completely false assu mption! Ugh. Stereotypes ) Knowing there are others that struggle but continue to fight is comforting, because I’m not fighting alone. Your letter was much needed!!

  17. Carrie says

    Thank you so much for posting this! It is so true! I have struggled with many symptoms including chronic fatigue for 20 years before being diagnosed with Lyme disease as well. Thankfully through a nourishing diet and a compassionate, knowledgeable naturopath I have been able to maintain a “normal” life. In the beginning, I always knew there was something wrong. But because of the lack of compassion/belief from traditional doctors I have pretty much written them off. However in the process I have learned so much from the alternative community and have taken full responsibility for my own health, which I am thankful to God for directing me in! I am thankful Lyme Disease is being correctly diagnosed more and awareness is increasing. The medical community still has a long way to go to fully achieve a definitive understanding and help patients recover from the disease. God continue to bless you and your blog Kimi!

  18. Tracy Spangler says

    Thank you so very much for this post. I am mildly disabled, and in addition three years ago I began feeling a stabbing pain in my right ear, that was the most intense pain I’ve ever had, and it never, ever goes away. After a year I received two diagnoses – either it was Geniculate Neurlagia (often called The Suicide Disease, because the pain is so atrocious that people with it occasionally give up and end their lives as the only way to end the pain) or Greater Auricular Neuralgia, which is the same horrific disorder- it just affects a different nerve. In the last 8 months I have undergone an unsuccessful brain surgery and then a surgery to cut the Greater Auricular Nerve. Neither helped- they in fact made the pain much worse, which I thought was impossible.

    I have also undergone many procedures, and take many, many medications. I weaned myself off Methadone after being told by a pain clinic that I would have to take it at a very high dose for the rest of my life, and that I had no say so in this because I signed a pain contract with them. Needless to say I ended the pain contract.

    I do use essential oils when I can afford to do so, which is not often. My husband suffers from daily, blinding migraines and is facing spinal surgery soon for an injury he received while in the Army. We have two young children and most days it takes all all energy and strength to be positive for them and give them all the love and attention they need. We try to hide our fear from them. Neither one of us can work, and the pain has taken away my ability to even do freelance editing, so we try to get by each month on my disability, which is becoming harder and harder to do, as both my husband and I go to more and more doctor visits and get more procedures done, searching for any kind of relief.

    I feel like curling into a ball and crying every day. The cause of my neuralgia is unknown, though I suspect it was caused by a root canal done horribly wrong. I’ve been encouraged to sue the dentists who hurt me, but I don’t have the energy to fight. I also have been told the pain is all in my head, at various points, since the surgeries I’ve had done have not fixed anything. Unfortunately there is no cure or fix for this neuralgia. I do, finally have a good therapist, which is a blessing in my world of not very caring doctors.

    It was suggested to me recently that I try GiveForward- a site like Kickstarter for those with too many medical bills and not enough money to pay them. I think I may have to ask strangers for help because the pain just keeps getting worse, and as a result any money we have disappears too quickly. My girls need new clothes, I need a new pair of glasses, my sweet husband who hurts every day wears socks that are over a decade old, which are barely held together by any cloth, without complaint, because of course there is no money for clothes. We have a broken window in our house to replace, a weak spot in the floor where the tiles got too wet that is about to cave in – creating a wide hole to the ground below our home. There is hardly enough money for utilities, rent and food. I felt some hope when I was told about GiveForward, but I also wonder if it’s too much to ask for- that strangers help us in our time of great pain and fear and need-because so many others are suffering too, from a poor economy and their own struggles in life. Perhaps because we receive so little understanding or help from our immediate family, I find it hard to hope that strangers would care enough to help when my extended family does not.

    Thank you so much for sharing about your health problems and your friend’s struggle with Lyme disease. Thank you especially for your loud and clear message that it’s not all in our heads, even when in my case it kind of is :). Your words of hope and message to not give up came on a day when I’m incredibly sick, which adds to my pain, my strong pain killers that don’t kill the pain have been increased again as that’s all my doctors know how to do in my situation and my husband can barely see straight through his migraine. I am comforted by your story of eventual healing and simple caring for those of us that are sick, physically and/or mentally. Thank you so very much.

  19. Tracy Spangler says

    Thank you so very much for this post. I am mildly disabled, and in addition three years ago I began feeling a stabbing pain in my right ear, that was the most intense pain I’ve ever had, and it never, ever goes away. After a year I received two diagnoses – either it was Geniculate Neurlagia (often called The Suicide Disease, because the pain is so atrocious that people with it occasionally give up and end their lives as the only way to end the pain) or Greater Auricular Neuralgia, which is the same horrific disorder- it just affects a different nerve. In the last 8 months I have undergone an unsuccessful brain surgery and then a surgery to cut the Greater Auricular Nerve. Neither helped- they in fact made the pain much worse, which I thought was impossible.

    I have also undergone many procedures, and take many, many medications. I weaned myself off Methadone after being told by a pain clinic that I would have to take it at a very high dose for the rest of my life, and that I had no say so in this because I signed a pain contract with them. Needless to say I ended the pain contract.

    I do use essential oils when I can afford to do so, which is not often. My husband suffers from daily, blinding migraines and is facing spinal surgery soon for an injury he received while in the Army. We have two young children and most days it takes all all energy and strength to be positive for them and give them all the love and attention they need. We try to hide our fear from them. Neither one of us can work, and the pain has taken away my ability to even do freelance editing, so we try to get by each month on my disability, which is becoming harder and harder to do, as both my husband and I go to more and more doctor visits and get more procedures done, searching for any kind of relief.
    I feel like curling into a ball and crying every day. The cause of my neuralgia is unknown, though I suspect it was caused by a root canal done horribly wrong. I’ve been encouraged to sue the dentists who hurt me, but I don’t have the energy to fight. I also have been told the pain is all in my head, at various points, since the surgeries I’ve had done have not fixed anything. Unfortunately there is no cure or fix for this neuralgia. I do, finally have a good therapist, which is a blessing in my world of not very caring doctors.

    It was suggested to me recently that I try GiveForward- a site like Kickstarter for those with too many medical bills and not enough money to pay them. I think I may have to ask strangers for help because the pain just keeps getting worse, and as a result any money we have disappears too quickly. My girls need new clothes, I need a new pair of glasses, my sweet husband who hurts every day wears socks that are over a decade old, which are barely held together by any cloth, without complaint, because of course there is no money for clothes. We have a broken window in our house to replace, a weak spot in the floor where the tiles got too wet that is about to cave in – creating a wide hole to the ground below our home. There is hardly enough money for utilities, rent and food. I felt some hope when I was told about GiveForward, but I also wonder if it’s too much to ask for- that strangers help us in our time of great pain and fear and need-because so many others are suffering too, from a poor economy and their own struggles in life. Perhaps because we receive so little understanding or help from our immediate family, I find it hard to hope that strangers would care enough to help when my extended family does not.

    Thank you so much for sharing about your health problems and your friend’s struggle with Lyme disease. Thank you especially for your loud and clear message that it’s not all in our heads, even when in my case it kind of is :). Your words of hope and message to not give up came on a day when I’m incredibly sick, which adds to my pain, my strong pain killers that don’t kill the pain have been increased again as that’s all my doctors know how to do in my situation and my husband can barely see straight through his migraine. I am comforted by your story of eventual healing and simple caring for those of us that are sick, physically and/or mentally. Thank you so very much.

  20. Donna says

    I went 15 yrs with undiagnosed Hashimoto’s Thyroiditis before bargaining with my doctor (endocrinologist or psychiatrist). No longer with that doctor. Now I am going thru a lot of tests for new symptoms including severe fatigue, double vision, weakness (falling a lot), etc. My current doctor is proactive and takes me seriously. We discovered after a bout of asthmatic bronchitis that prednisone helped other symptoms so I’m on 40 mg right now even though there is no diagnosis. Ms, lyme disease, lupus have all been ruled out but we are continuing the search. It’s frustrating but having family, friends and medical support makes it easier

  21. says

    Our family of 11 was told we were crazy – my poor kids were continually told they needed counselors. We finally figured out our home was toxic with severe levels of stachybotrys. I feel for all those who are misdiagnosed or undiagnosed.

  22. says

    I also went many years in cronic pain, arm & hand numbness. Went to 15 specialists (this doesn’t count all the “regular” doctors. Told “all in my head”, among other things. I knew something was wrong. We “know” our bodies! Finally, one doctor truly listened to me. Took an x-ray, of my neck, in position that caused numbness. I had a cervical disc visibly “moved out”, from where It
    belonged. I was diagnosed with cervical degenerative disc disease. Had surgery on the disc, as I was in danger of permanent nerve damage. 2yrs later 2 more discs were moving. As Dr. came to wheel me to surgery; He said, “You know we do NOT have to do this surgery. If we do, you will be in here again next year, to have another surgery. This surgery will cause a domino effect. Plus, there is no guarantee this surgery will help you. I would advise you to go home & learn to live with this.” I am so thankful for that Dr. He could have done the operation & done another the next year & I still would have been no better. Then came the pain management drs. I was on 15 different medications. Finally, I decided to leave my pain dr. I slowly & one by one took myself off of all but one medication. It is a pain medication. This pain medication gives me the ability to be a wife, mother & a functioning member of society. Without it, I would be bedfast. I am never out of pain, but I can live with it. I have been on the same dosage for 12 years. I have done all I know, with prayer, knowledge, education…to be as healrhy as possible. I would love to be pain free. I have a lot more respect for others suffering now. I have a lot more compassion for people in cronic pain. There are people much worse off than me. I continue to love & serve my Savior & know that He will lead & guide me. Thank you for your posts! I love everything you post. Sorry to be so “long winded”. God Bless!

    permanent

    belonged!

  23. says

    thank you for your encouraging post.i live in greece and have been in many othalmologists,neurologists in the past because i have symtoms like double vision when im moving my eyes,blurred vision,double vision nose always in the field of my vision,head pulsating,my eyelids are heavy, and other symtoms.so many doctors are assholes and just dont know their profession.the neurologists after a head ct scan that was clear,said that all coming from anxiety or is just psychosomatic.with no choise left and desperate,i went to psychiatrist and he game me medications.but these medications made me a zombie,changed my personality,made me stupid with really bas memory function,and had many side effects.after three years i just wanted to stop them all so i did.when you have all these symtoms all day-night,its not psychosomatic.i just hate psychology now.all these three years was always searching the internet about my symtoms and after a lot of reading,i can describe better now all my symtoms and remind to doctors about possible disorders-illneses.i never give up because i cant.i cant live with these symtoms.i just suffer every day without beutiful girlfriend,with no family psychological family support because they say that i have benn in many doctors and they said that im ok.nobody believes me because people around me dont have any of these symtoms.i feel lonely,im a beautifull tall guy that in the past was best in class,best basketball player in athens,and now 7 years with these symtoms in my 25 years old,im just a failure.stopped basketball some years ago because i wasnt good anymore even if i tried my best,in university too,i didnt learned anything so i was bad in many jobs(cooking).so now im trying again to go to good doctors.i believe i will find a good doctor because i know that there are many tests,scans left to do,disorders or illnesses that may be risponsible.an example to understand how doctors are,is this..among the others i had strong pulse in my head eyes.nobody knows here the reason of them and they blame anxiety.so i did all these years many searching and research and after many tries like heart medications i came along of magnesium insufficency and thyamine insufficensy.so i took magnesium and thyamine and my pulse redused a lot.it doesnt bothers me anymore.so imagine if i havent done this research and just give up and say i will commit suicide.but after i thought there is always hope,many beautiful songs encouraged me,even without the priceless love of a beautifull and good woman i just didnt stop dreaming about them.i know there is a soulmate for me somewhere that will appreciate me and understand me and love my personality even if i cant show it with my eyes because they are sick.so if anybody want to support me and tslk to me my facebook name is Valerios tatarou.i will appracciate any support even from distanse because i feel lonely in this fight.thank you

  24. says

    Hello,

    I am glad I found your site and thank you for sharing your story and helpful advice for the undiagnosed. I hope you are doing well now. I identify with your experience of having had low iron. I want to share my experience so that it may help others who may have symptoms similar to mine. Some do not realize how debilitating it is to have iron-deficiency anemia and also do not realize it not a harmless thing to have. I was always sick. I caught every bug and had pneumonia several times. Anemia compromises the immune system and some patients cannot tolerate oral iron. Iron infusions are not completely innocuous and have serious side effects and risks. I was misdiagnosed and undiagnosed for 5 years. I had severe anemia and low ferritin count of about 2 at the lowest points. Which means there war virtually no iron left in my body to help make red blood cells. I had internal bleeding from a cancerous tumor called GIST Sarcoma (gastrointestinal stromal tumor). It sometimes was a slow leak or bleed to an all out hemorrhage that would hospitalize me. I received iron infusions on a fairly regular basis for 5 years. I sat in chemo units for 5 years running receiving iv iron surrounded by cancer patients and I had not one but two undiagnosed cancers that doctors missed. It took doctors 5 years to find the cause of my bleeding which caused my anemia and the hemorrhages almost killed me a couple of times and put me in ICU. I was hospitalized at least 6 times because of the bleeding. It was a nightmare for me. I also had an undiagnosed rare cell form of thyroid cancer called columnar cell variant of the common papillary thyroid cancer. This cell form does not respond to chemotherapy or radioactive iodine therapy. GIST Sarcoma also does not respond to traditional chemo or any radiation. Patients with GIST Sarcoma can take the chemo pill called Gleevec or Sutent and I believe another drug has been recently released from clinical trials but I do not recall the name of it. Gleevec has an issue with immunity in some patients and it stops working for them, but some patients do well with it. Heartfelt thanks again. My very best to you.

  25. Christie says

    You have no idea how much I needed to read this post tonight. I thank you for your candidness. I am a 45 year old mother to a severely autistic son. On a good note is he stable after years of fighting to help him and dealing with some very challenging behaviors and backlash from schools and doctors.

    Myself, I developed mold illness in Dec of 2013 and my world has been turned upside down ever since. I was laid off because I developed severe mold allergies and severe asthma due to being exposed to mold in the workplace. My specialist had me on Prednsone (sp) which is a nightmare and other corticosterioid nasal sprays and inhalers. I was on something also called Xolair injections because my symptoms were so severe. They weren’t really helping me and costing me a fortune that I could not afford now that i was unemployed.

    My doctor only sees the symptoms he is trained to see. Which is a stuffy head, itchy eyes, sore throat, swollen glands, itchy watery eyes, nasal drip all the regular allergy symptoms. When I told him I was experiencing severe vertigo, tingling in my hands and face, memory loss, anxiety through the roof and some other symptoms he looked at me like I was nuts. I wasn’t dealing with any of this until exposure to toxic mold.

    Moving forward now I have been unemployed for a year and a half. I am not able to work. If I walk out the door on days when the mold counts are high I get very sick. Sometimes it lasts for days to a week or more. I get so fatigued, sometimes extremely lethargic and I can feel inflammation all over my body. Ache like I have the flu sometimes. Stiff when waking to where I can’t hardly walk and so very frustrated. Family have more or less made comments that it is all in my head as well as friends. I am going crazy staying inside all the time. A friend recently told me if I were going to have any quality of life I was probably going to have to “suck it up.” Needless to say I do not call them a friend anymore. I explained to them going out and exposing myself makes it worse. My body isn’t able to fight off the toxins from the mold. Every time I expose myself I am building more poison up in my body. I just feel very defeated.

    I am of Christian faith. I do believe and sometimes the only thing that gets me through is that i know one day when I leave this world I won’t be made fun of, what I say won’t be discounted and I will never suffer again. It sure makes for a lonely life in the meantime here though. Another thing I have noticed is I have zero tolerance for stress. None! I can’t afford a holistic doctor on one income. We scrape by as it is. I feel stuck with no way to help myself. I do however thank you for at least finding your blog and reading your post. It is good to know I am not alone.

    Many blessings to you,
    Christie

    • says

      Oh, Christie, I’m so sorry! And that “stuck” feeling you have, I understand all too well. Mold is such a huge issue for many people, and it be so brutal. I pray and hope that you see a light at the end of the tunnel soon.

  26. Beeds says

    Thank you for this. I was finally diagnosed with idiopathic peripheral small fiber neuropathy in January and it has progressed so fast my head is spinning. I can no longer walk more than a block or use my hands at all due to crippling pain. They are taking the pain med route with me slower than normal because I have abuse in my history (been clean since 2008). Two weeks ago they took me off Lyrica because I gained 25lbs in 3 mos (dropped me from 450mgs a day to 75), and put be back on Gabapentin (though that didn’t work the fist time).

    Believe me when I say I am white knuckling it. I don’t feel like anyone gets it at all. Plus I have the added guilt of even thinking I deserve anything for my pain because I’m an addict and I gave up that privilege long ago, know what I mean?

    I’m a 49 year old mom of two beautiful daughters and trust me when I say, they are the only things keeping me on the earth right now.

  27. Natasha says

    Can j ask you about the iron infusions and if you would do them
    Again? I’ve been advised by my doctor to do them and I am reading on the side effects and it sounds scary and dangerous ! Thanks so much

  28. Anne says

    Your writing is so well-put and so dearly needed by SO many people! I am printing this up and making copies for myself and some loved ones going through the same ‘enigmatic’ time as you are describing, to give-out to loved ones…..I literally found your post because other than praying my heart-out, I have been so fatigued, and feeling so completely awful for so long, and feeling worse with each progressive day, and I cannot for the life of me find a way under the sun to gather sufficient sympathy, interest, medical professionals who are capable of helping me and financial coverage when all I want to do is devote myself to being responsible and helping myself in anyway get better…. long story short: after all of the above attempts to “Align my ducks in a row” (putting God, Jesus and the Holy Spirit first in gratitude and prayer, also ‘common-sensically’, realistically, logically and responsibly after that!) Today I found your post literally by Googling: ” I am sick and no one believes me “! Thank you so very much! Your writing has helped ease the pain and confusion! Proof that even incrementally: If you seek God, Jesus and the Holy Spirit for Guidance….provision will follow! Lots and lots of love!

  29. Toni says

    I’m not sure if this discussion is still current. I’m 44 years old and have never been physically ill. I found out I have a deviated septum which right now I cannot afford the surgery. Then all of a sudden I noticed a bump on my head I went to my ent and she said it is not related to my sinuses. Although when she felt it she said what is that? Then she said sometimes you get tumors. Of course I immediately started to worry, I told my mom and she said oh I get those too. I just felt like crying because I’m feeling like I have no support. Well I went to my primary doctor and she wasn’t even going to look at the bump on my head until I asked her. She felt it and said its a cyst and should go away on its own. Well then one morning I noticed my right shoulder was swollen where your collar bone is. She gave me a prescription for ibuprofen and said if it doesn’t get better I have to come in and see her. I also told her my hair is falling out where the cyst is on my head she said I need to get a blood drawn for a tsh. I’m Leary to go back to see her I’ve been there so many times. I think because I do have anxiety that this is what’s causing it. I don’t get any support from my family because when I tell them what’s going on they say they either have the same thing or they dismiss it. I’m so glad to have found this thread it gives me comfort.

  30. Katara says

    I needed to hear this so much today! I’ve been struggling with ear pain, sinus problems, and horrible fatigue for nine months, and have recently had to add nerve pain in my upper body to the list of symptoms. I’ve had tons of blood tests done, allergy tests, even a head x-ray, and keep being told that I’m fine or that it’s just depression (which is not helped that I’m someone who cries easily, and after 9 months of being told I’m fine when I’m so tired and in pain, I do shed a few tears in frustration, which is then interpreted as me being depressed).

    Now, this morning, I went to a medicentre to get a note for missing work cos I’m feeling so unwell, and the doctor there told me a had a really bad sinus infection and needed at least week off, not a day. This afternoon – as in, on the SAME DAY – I also had an appointment with an ear, nose, & throat specialist who told me I don’t have a sinus infection, and he has no idea what’s causing the pain, but my sinuses (which have given me pain and congestion that regularly interrupts my sleep) are totally fine. On the SAME DAY. This is getting to be a bit much for me! But I will keep going & trying to figure this out!

  31. says

    Thank you. I’ve done so much research on my symptoms and all the nutrients I need to heal. I think I have chronic hand foot and mouth disease and it’s given me myocarditis as well as infected other parts of my body. I fully believe in alternative medicine but the people around me just don’t understand. I’ve cried, and I’ve screamed for them to understand but they just think I’m crazy, or it’s because I’m working the night shift, the more I tell them the smaller my voice is heard. I have never felt so alone. My senses have dulled to an astounding degree, my emotions are less acute, my vision is still blurred and I lost some the other day, all of my body is stiff from the ever forming scar tissue, and they keep telling me to get over myself, or that I just need more rest. they tell me I’m crazy, I can’t rely on anyone to be my pillow, so I guess I’ll have to be my own. I’ve ordered 2 bottles of marine phytoplankton, which is suppost to be the most nutritious food on earth, and I swear if this doesn’t heal me, the microorganism responsible for 95% of the world’s oxygen and all the life based on land and sea, then nothing will unless it’s a whole lotta faith. I also ordered some probiotics, and I’m still taking camu camu. Thank you for believing in me. Even though I feel numb emotionally and physically, and the heart palpitations continue, I will strive for a day where I am fully healed, and so I can go on to help others. I will strive for that.

    Thank you! ;~;

  32. Wendy says

    Thank you.
    I recently saw a neuropsychologist for cognitive testing, since I am noticing some of the same early symptoms that I saw in my mother, grandfather and aunt, all of whom were eventually diagnosed with ALZHEIMER’S. (Aunt was early onset.)

    I also have a 24/7 headache/balance disorder that I woke up with 10 years ago (diagnosed as New Daily Persistent Headache, no results from treatment).

    This doctor said I test “normal/above normal” and my cognitive symptoms are “Stress”. I indicated that
    – cognitive symptoms do not vary with stress,
    – my stress levels are actually much lower now than they were when I was still married to an alcoholic (5 years ago),
    and
    – I questioned whether my above-average lifelong intellectual abilities now cause me to test “normal” even though I see decline. (This includes no longer being able to follow my own programming code from years ago, and I struggle to play memorized piano pieces–even at home–that I used to perform with confidence in public. I’m also getting lost in familiar places.)

    She shrugged my comments off without reply.

    Then, believe it or not, she went through my medical records, discovered my chronic unsolved headache issue and other valid medical concerns, and put a diagnosis of SOMATIC DISORDER in my record, along with statements like:
    – “may be delusional”
    – “claims of vague and minor complaints”
    – “her few relationships may revolve around her medical issues”
    – “persists in seeking treatment despite repeated negative results”

    AND MAILED THESE CONJECTURES AND THE DIAGNOSIS TO ME WITHOUT EVER DISCUSSING ANY OF IT WITH ME.

    I was upset and shocked to receive it. When I wrote a letter of complaint and I’d sought only testing, she pointed out that I’d signed an agreement form for tests AND analysis.

    Talk about a lack of compassion–and poor judgement. She’s just made it a lot harder for me to get help with valid medical issues.

    This hurts. A lot.

    Avoid Dr. Chinnery in Menasha, Wisconsin. She is the epitome of a destructive and harmful doctor.

  33. says

    Hello my names Angelina. I’m 16 years old, i had Lyme in the past when I was 13, year of 2013. I know you have it forever. Well ever since I got over it, I’ve experienced I was very sickly. My immune styem was at an all time low and I think found out I had to tonsil stones and got my tonsils take out. I lost about 12 months prior to that surgery and I’ve been tired, achy, sick every single day and feels like I just never sleep or have enough rest and I sleep about 8-10 hours a night on school nights. I recently have been having trouble breathing and then started having trouble breathing after my softball game one night. Then the next morning I went to the A.I Children’s hospital. They ran over 100 tests on me said I have an irregular heart beat.. But my parents didn’t believe them and then my pediatrician called my parents no idea why and told me to come in. She said its all in my head. They tested for Lyme.. said It didn’t show I had it back again, a few weeks before these happen I told my mother I think I have Lyme. I feel sickly again.. and when I told my doctor about that she said “Lyme isn’t important, no worries”. My parents are thinking about taking me to a specialist for Lyme.. I forget the name they said was spelled with an E my sisters friends mother told my dad about it. Please message back someone..

    • says

      I’m so sorry you are going through this! My sister in law has long term Lymes disease and has experienced many of the same symptoms that you are experiencing. She went to a specialist that concentrated on Lymes and that really helped. She was able to get proper testing done, for one, and then start treatment for it. I hope you find answers soon!

  34. Savena says

    Thank you so much for this post. It is always good to feel validated. I for one suffer with a high pathogen load from ebv and Lyme as well as autoimmune issues. These things cause me a ton of fatigue and issues with my memory and cognitive processing. Because I had a really excellent memory before this happened, nobody, and I mean nobody, believes me when I say things are wrong with my brain. I know they are. But just one last thing about mental illness. I just want to say that even if it is just so-called “mental illness,” it is also a physical thing. Mental illness is physiological. Parts of the brain aren’t working right. The brain is part of the body last time I checked, and mental illness is affected by medications and nutritional status. Yes, trauma and other psychological aspects affect the brain, but it changes the way the brain works.

  35. says

    I told my family about my experience, noone believe me, all people could share thought and vision in me and I am so sure it does. People think I am crazy, people thinks I am mad. All I could do now is to pretend nothing happens and live cheerfully. Make some jokes and foolish stuffs cure inner pain alots, deep down in me, I know I am not crazy, people could see and read me, medicine just a temporary solution. God made a joke on me lol!!

  36. sharun lakhan says

    im going literly threw this..i have horrible stories with more pain the pills.adhd and 24 hour body pain..i used to get locked up alot for crying to much.nobody helped me and diagnosed me of being mental..they force this diagnose on me till this day i tell them im not they say i am.i drive and do things.im alert.i love my life evn more im not depressed like they say i am..i no what hell is .iv been to hell and back.i love normal life but its pricy.once they told me the pain was in my head and torcherd me in a mental hospita till i went 5150.i diddnt know who i was for 0 days druged u on anti psycotis which kept side effecting my nerves like i wa on a stray jacket.i came home and had no will power to work and pain managemnts dnt exept crzys with pain.my 13 year old dog i stayed with all day ate alot of jumk food and died.unwillingly i did that.i let my dad sit inpee all day he was all cut up finaly i put him in va nursing home.i have 25 animals wow what a mess with no cleanng.psycologocly i liked it outside with my factory tuned music trancing out of pain.just maning up to it this way buy the police keppt cming to my home.from gang units to social worker just the whole book.acused of saying things while i was in pain..30 cops lined up..in the corer for 3 hours scaring me.it made mme pick up a bb gun i diddnt have nno reason to be locked up..i realy diddnt say anything i was being accused of i got scared.3 hours.they shot me with bean bags to take mme to 5150 lock up..every tmme i get lcked up its not hospital policy t five pain meds.another wresle mania.i very strong onn i never hit anyone but it gets hectic inn locked up in pain with no hhelp usualy im n restrains and 20 anti psycotic shot i counted within two days to hold mee.i went to a er in pain they tryed tto 5150 for no reason.i tryed walkng oout the grabed me and asullted mme for 10 minuits chocking me.i was brused up and coulndt talk for 3 day.they diddnt want to diallll 911 a crime was commited.i wrote my story on you tube so its hard to tel it twice if im noott detailed but i always played the victim.kaiser put me on 5 ml 2 times a day and i made 50 visits to er.i became the outlaw and they were kicknng me out of kaiser ilegaly and the got away with it.iv been abused alot why because they just wont give me add adhd pill to completly make me normal…yes itt takes the pain away all the way on a good dose.iv spend more timm in pain then pillls but iv been around here oor there.i repoorted all thhis but nevver had any what so ever help.i just want to feel normal and they give me a harr d time….i alway held a negative energy i me all my life.its hard to constanly be myself literly.its like a jolt.it wont llet me go and they dont want too give me good shit.i finaly founnd a pain management last 4 months but they always used eccesive force on a non violent man.i had my house searched twice becase of being accused im cray..in pain with no helpp from neighbors it would be best to promte what im goinng threw.but naw ususly i just tooo do myy own..it gets loud trying to escape paainn for llittle whilles.but this mental issue forced on me i have no respect from docs cps and fireman.im a nobody.no er will treat me ..im dieng in my body and they reject doing anything for me.im labbled all sorts of diagnosis..just give me oone chace..never have mmonney is another prrob

  37. Sophie says

    I’m 26 and I’ve had problems since I was 9 – bone pain, muscle pain, eye pain, nerve pain, weak bladder, mild hirsutism, fatigue, unexplained weight gain and difficulty controlling weight despite healthy lifestyle. I’ve seen many GPs over the years, all of have refused even to the simplest tests. No referrals either. All the want to do is put me on antidepressants. Yet, despite my problems, I’m not depressed. I am happy within myself. One day I will stumble across the answer, I’m sure.

  38. Lenore says

    Thank you for creating this blog. I am a 53 year old woman and have been very sick for four months. My symptoms include difficulty breathing, chronic sore and burning throat, pain in my chest and lungs, difficulty swallowing, skin rash and extreme fatigue. I’ve seen many specialists and have been to the ER four times. My blood work always comes back normal and I have had chest x-rays, CT scan of my neck and chest, endoscopy and thryoid ultrasound also normal. I can hardly eat and have lost 40 pounds and am very thin. A few of the doctors have said maybe it’s in your head cause they can’t figure out what’s causing it. We had our house mold tested and it came back showing moderate levels of aspergillus and penicillium. When I ask the doctors if this can be the issue they don’t think so cause I’ve lived here for four years and only now have symptoms. We had a duct inspection and they found some mold and removed it. Tomorrow they come back to clean and sanitize the ducts but my symptoms persist. My gastro doc sent me for autoimmune blood tests (I asked my primary doc to run these tests but she refused saying it was in my head) and I am awaiting the results. I feel so sick like I’m dying on the inside. I stay in bed most days and am becoming very lonely and depressed. Before this happened, I was a very active person and now all I can do is hope and pray that they will find a diagnosis. My husband has been taking time off from work to take me to doctors appointments but it’s putting his job at risk. I just wish doctors would listen to you more and stop saying it’s in your head cause they can’t find the cause. My heart goes out to everyone going through this.

  39. Karen says

    Thank you for this post. I might have the most under-recognized, undiagnoseable, gruesome disease of all: parasitic hyperinfection. I was on steroids and Remicade when I didn’t have Crohn’s but had parasitic infections. My parasitic diagnoses go by the wayside as doctors ignore them. My immune system was so suppressed the infection grew out-of-control. I’m laughed at in the hospital because this is too rare, even more than Lyme, to be recognized. I have lost motor skills in the lower half of my body; I cannot walk, cannot stand, have two fingers that still type, eight that don’t work at all….and this is mental????? My BP was 82/42 today yet the hospital wants to discharge me. I want to be on Hospice care. I didn’t deserve the shit luck……zero quality of life. Oh, and NO pain meds.
    I pray that this never happens to another. I am writing my testimony (Uncharted Territory: Diarrhea of Unknown Origin)! I’m not advertising it for $. I don’t care about $$ anymore. I care about this NEVER happening to another soul. I wish health on everyone, even through my Gastroenterologist misdiagnosis.

    • Jeannie says

      Yes! I know I have Invasive Strep P, which microbiologist acknowledge has become a serious issue because antibiotic resistance and going undetected, that doctors are clueless, like parasitic issues, there are several pathogens that are going undetected and not acknowledged AT ALL, for years and decades even when patient finally has proof! Even Lyme is more acknowledged.

  40. Ckay says

    It is nice to know you are not alone. I have been through so much pain over the last six years. Pain started when i was 20 am now 54 no one can diagnose the problem and I am so tired of being in PAIN. I am at the point I am ready to die just to be free from it all, awaiting my complete healing found in death but with everlasting life with Jesus. Don’t worry I fear the judgement from God and would never commit suicide. If I thought he would be okay with it I would have done it a long long time ago. I had been diagnosed with Crohns, now they’re not sure. Joint pain with no evidence of skeletal abnormalities, Pain in spleen area, distended stomach lower/upper, adhesions unable to walk at times can’t sit for long can walk very far. This is no life. I wish someone could figure out what is going on. I have been doing research to natural pain remedies, and I think I have found one that helps. I am on a fentanyl pain patch but it only gives a base relief it does not help with the severe pain that is up and down all day long. I have started using Arnica which is from a flower. It is definitely helping so if you have uncontrolled pain you can get it at some of the health food stores. There is another one also that is supposed to be really good but it is really expensive and I can’t afford that one. Curamin Extra Strength (curcumin).

  41. Michael Goldman says

    I have been dealing with oral problems for about 4 years now and it looks and feels exactly like mouth cancer. When i look there are red and white patches on my oral tissue. Lately within the last month or so it feels like my heart and lungs are having problems too. I tell my mom that nothing feels right anymore and I am terrified but she blames it on anxiety. Finally she set me up with a screening next month but idk if thats soon enough. I only pray that I’m just crazy and a hypochondriac. Everyone tells me that there is no way a 22 year old could get oral cancer but i used to chew tobacco a hell of a lot and im a smoker (trying to quit) i ask anyone who reads this comment to help pray for good results on the screening. Tobacco is pure evil i would trade anything to feel normal again and for someone to finally believe me.

  42. Jeannie says

    Undetected pathogens, which some microbiologist and doctors are just figuring out that labs and imaging do not detect, Lyme is big one, but even that is more acknowledged than for example fact that Streptococcus Pneumoniae, same as strep threat cause, can turn invasive, yet it takes a knowledgeable doctor to clinically figure out patients issue is Invasive Streptococcal Disease/Invasive Strep pneumonae/Chronic Meningitis, so many labels for what this one pathogen can do.
    Also consider, that often undiagnosed persons have no support and worse, have for example spouse who chooses to downplay or completely ignore and worse bad mouth, complain, turn family and friends against person who is truly physically sick, treat them like they are just crazy, depressed, whined, mean, etc. Yet person actually suffering is too ill to stand up for themselves…Guy I married chose narcissistic, sociopathic course, basically kicking me while I’m down to justify his own needs rather than a helping hand. Still worse, pretty certain my kids are in early stages of this pathogen spreading in thier bodies, even with actual proof (even lab detection after my own hard work) and signs in children, he chooses complacency over children’s wellbeing.

  43. James says

    Hi Kim
    Glad i found your article, i have unexplained peferieral nuropathy and i do have PTSd through my family not lsitening and being bullies, i have a girlfriend who lives in a foreign country who i wish i was living with but cant move out due to said disgusting humans, includingmy fmaily, was years undiganoised and my father seems tot hink its fake event hough i have fits, insomnia etc the list is endless, my sister was laways treated a lot better thanme, even when i was ill noyt disabled like i am now was todl to suck itup. Living with a condition that causes other conditions and severe to moderate pain dependingon how my body feels isnt easy. Plus having to dealw ith a non caring family and a non caring society isnt easy either, causing someone to go through what i ahve to go through on a daily basis shows that humanity is getting nastier nd nastier, but i am glad i have found someone who can relate thankyou for sharing your story

    James

  44. stephen says

    The problem of having been diagnosed with a mental illness is that when someone has pains that a GP cannot find symptoms of a condition, they will believe that the pains are all in the person’s head, all in the mind. The problem with this is that when they enter what they believe on the notes other doctors will also follow with this line of believe. Feeling pains does not always mean that there is nothing going on, that it’s just the relationship between the mind and body and the stress etc involved. Of course when someone is regarded as mentally ill, stress, anxiety, depression etc, then a GP knowing this will avoid looking into the cause of pain/s because they will assume from the start that the pain is all in patients head. Moreover when they can’t see any signs of what is causing pain. So then the patient goes on to suffer, and s/he might have a condition, underlined, a real condition that is building up but because the doctors regard him/her as mentally ill the patient goes on to suffer.

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