…..
it sounds like Candida a lot ……or at least Candida and more….
Guys check Allelujah diet……eating raw food can reverse many health issues

I posted about a year ago I have been through so similar to all these stories as well. I was finally diagnosed with Chronic Lyme Disease. My test were positive but only by a special lab in CA. I had 4 test before by local labs and all were negative. It finally explained and the neuro, gastro, vision, and soooo many weird symptoms I have carried for all these years. I had a Dr once tell me I probably have a new disease that no one has discovered yet, WHAT. It was a tough 15 years but being diagnosed with Lyme and the treatment that follows is no easier. I hope in the next few months or so I am able to start seeing some type of improvement. PS every single Lymie that I know has been given the classic diagnoses of “Fibromyalgia”. I am happy to share my experience than and now to anyone that wants to know. [email protected]

While I’m sorry you have to deal with this I am happy that I’m not alone. I am 22 years old and have had worsening symptoms since I was 9. For years it was “fibromyalgia” and now I am in a wheelchair and back to undiagnosed. The whole time I was convinced it wasn’t fibro but no one would listen. I’m still not sure what is better. Is living with something misdiagnosed better? At least now they are watching my symptoms rather than passing it off anytime something new comes up.

please help me to Dr AZAKA for removing sickness in my life,Davies is my name i am from Senegal and i have been sick for9years and i have been visiting hospital for medical check up all to know are vain .it got to a point it got to a point where by i started visiting herbalist for herbs yet the sickness was still distorying my body system there was no changes.i all way share tears from morning till night cos there was no trace of what cause the sickness,medical doctors was unable to detect any thing that was wrong with me and herbalist still try on their own but nothing to write home about.the sickness grow to a stage that i was unable to stand-up on my own except the support of any member of my family and dearth refused to take me away from this painful sickness.one day my either sister who live in united state of America (USA)came with an email and phone number of D rAZAKA that the man have spiritual power that he different problems like this and the one that is even worst than this and i never believed my sister email Dr AZAKA about the problem.and Dr AZAKA said there is no problem that all we need to do is to perform some sacrifice and cast negative spell off him in his shrine yet i never believed Dr AZAKA so after performing all the sacrifice Dr AZAKA told my sister in 7days time i am going to be heal from this sickness that he has cast out negative spell off me and he has pay 7 sacrifice in seven junction.did you believed that on the 4th day i stand-up on my own to walk without the support of anybody ,before the 7th days i regain all my power in fact i was physically fit.please help me to thank Dr AZAKA for removing sickness in my life please if you want to contact him here is the email [email protected] and phone number +2348109628907. once again thank you Dr AZAKA.

Mandy, I didn’t read your entire comment until now and it appears that you too suspect lupus. I have this feeling as well. If it isn’t lupus, it is something lupus like perhaps. I’m assuming your friend who passed away was not being treated with immune suppressants? Remember there is no one test for lupus, as with ms. You have to meet a series of criteria.

When I read the first bit of this, I wanted to cry so badly, out of relif that I am not alone. I know exactly how it feels to want to walk do things for other charity! I understand how it feels to WANT a name for whatever is going on with your body, I also understand the losses, many from people you trust and thought would be there for you no matter what, as you would be for them, for those people who don’t belive or don’t want to believe (family included) it’s very frustrating. Doctosr who start to say things are in your head, and so very often you begin to wonder if that is what is causing your pain, but you know in your heart of heart something is going on. I’m so sorry you are all suffering but in a selfish way I am glad I am not alone!!! Miranda, I also understand how you feel about being so desperate that you want such a horrid disease (that has taken many of my family already) to be the thing that is going on, and I feel so terrible for admitting such a foul thing, but desperate times, and I’m sure if it was the case, perhaps we would have a moment of relif but then we would kick ourselves for wishing such a thing.

My personal story is too long for here, but when I join I will put it here if your interestd. (not in this post though!)

I’m so glad to have found this website. I feel so alone suffering almost 3 years with an undiagnosed condition. I have a wonderful husband who takes good care of me – but he does get frustrated at having to do so much. It hurts, but I understand. He works full time and he comes home and has to cook for us. I do what I can to help him, but on the days I’m having dizzy spells, I’m pretty limited as to what I can do. I feel so sad about that – and not knowing what is going on in my body – will I ever be well again – are taking a toll on both of us. I feel like such a burden sometimes. I’ve been to 6 or 7 doctors in the past few years, but not one of them has offered any suggestions as to what is wrong with me. I, too have had at least a few of them tell me I need to see my Psychiatrist. I know I’m not imagining dizzy spells I’ve been having – not to mention the extreme fatigue, malaise, stomach issues, joint/muscle aches and pains, headaches, strange skin rashes and puffiness. I was tested for Lupus,and my ANA was negative, then I thought it could be Addisons Disease or Pernicious Anemia (negative for those too). I recently had a test for Lyme (done by my PCP). He said that was negative too. I’m at my wits end, crying, anxious, depressed. How can I get well if I don’t know what is wrong with me. My heart goes out to each and every one of us suffering with undiagnosed health condition(s). I’ll continue to seek answers – as I hope we all will. Every day and night I pray to God for help in dealing with all of this. I want to know how I can be a better wife in the midst of all of these crazy symptoms.

Thank you for reading this. God bless you all.

Feel for you Mandy … our “joking” around is a brilliant facade we put up for the “others” in our world we live in; unfortunately, NONE of my family, particularly sons, g/children, etc have bothered to take a closer look @ what’s REALLY going on with my life … “assumptions” abound … think u’ve got the picture … fairy hugs hun

Although my disease has a name (MS and Rheumatoid Arthritis) it took over five years for me to be diagnoses. In that time I lost a lot of my vision, lost the ability to walk, started slurring my words on and off, had truly agonizing pain that made me pass out, even had seizures. I was routinely hospitalized and told that there was something wrong, but no one knew what. I have to say that living with an undiagnosed illness was the MOST stressful, scary, frustrating thing I have ever experienced. The five years I endured it really wore me down. When the doctors told me it was MS I was relieved!!!! I finally knew the name of my demon and how I could fight back. I am so sorry you have not been told the name of the monster that haunts you- I know first hand what agony that is. And all the years you have suffered… my heart goes out to you.

Much love and best wishes to you. I truly wish you get answers soon.

WOW one of the most powerful articles I’ve read in a long time. Brought tears to my eyes….:(

Just want to thank you for putting into words what so many of us live with day after day, for me it took several months to get the correct diagnosis, first it was Lupus, then fibromyalgea and finally Polymyosoits and Interstitual lung disease this was in 2004 and in 2009 Dermatamyositis as added as secondary to PM, but the first year was the worst nearly loosing my life to Methotrexate causing pneumonia which is a side affect of this drug. I fought my way back during that first year after spending 8 weeks in the hospital and 5 of that on a ventilator. It still bothers me today that so little is known by the medical profession and when they do come across a patient with all the signs and smyptoms they don’t know how or care enough to find out what they actually are dealing with.
I too have lost many friends along this journey, who always seem to think ” you must be making more of this disease then it really is”. Even family many times cannot deal with what is going on. And so many spouses walk away when someone is hit with this monster or any form of an autoimmune disease.
Thanks for putting into words what many of us live with!

Hi Sonja. Just wanted to stop and say ‘kudos’ to you for a great article. While I am one with a diagnosis ‘NOW’, I, for years, wasn’t. I remember that time so very well. You’re spot-on in your article. What a blessing it’s been to so many people. Two thumbs up!!

Thank you. I have been sick for as long as i can remember. I’m 24 years old. They know I have fibro and RA and they said rheumatoid lung but know they say no. I have had doctors call me a lier because i’m too young to have what i have or be has sick “as i say i am”. i have had doctors say i don’t know and i can’t help you anymore. i have only had one doctor in my whole life stay with me, he said he would never give up. i have been almost everywhere to find out what is wrong with my lungs. i cough up blood daily, i get phnemonia 6-7 times a year. nothing helps anymore but every test they do they can’t find anything. i go to duke in may to the number one rheumatologist in the country. if he can’t help me then no one can. i’m sick or going to doctors and them no listen or just say i don’t know. i joke and say i’m a guessing game for doctors, but inside it hurts. i really feel that it could be lupus but my blood says no. but i had a good friend that died of lupus last year and not one blood test showed it was in her blood. but she was 63 when she died and had had lupus for 22 years. i’m 24 and have been disabled for 5 years almost and doctors think because of my age i can’t have what i have. you had the strenght to write this i wish ppl had to strenght to fight for the ones who are sick with unknow problems. sorry for going on and on but it felt good to get this out. ***hugs for my spoonie family***

I echo many others when I say thank you for writing this. I too have lived in this land of limbo. So far for me it has only been @ 7 years, others have lived this for decades. I have received so many diagnosis, sometimes they contradict one another. I was so happy to finally receive the diagnosis code of 279.4 on my paperwork. Although I know it doesn’t really mean that we have figured out anything it means that I have something tangible to hold on to. It is very difficult not to have a name for what we deal with, it makes it that much harder to justify to those around me. My friend was diagnosed with Stage 4 Non- Hodgkins Lymphoma at the same time I was getting really sick. She fought it and is in complete remission. There was a treatment plan for her not for us. Many of us are made to believe that it is in our heads by the medical professionals we are supposed to trust. Don’t give up the fight, it is then that we are beaten.

Thank you for recognizing we are out there. Doctors seem not to care but treat us like case studies instead of people with a sickness. I have had migraines since the time when they had no idea what a migraine was. Just in the last few years doctors and people seem to have a clue. My entire life has been destroyed because of migraines. I cannot hold a job because of migraines I have to be stuck on disability even though I have an education, it doesn’t matter. Migraines rule my life. Doctors shove all different types of meds in your face and have no idea what the long term side effects of these meds are, I am not someones guinea pig. I take Treximet and Relpax and they seem to get rid of the migraine but you still are ” high” when you take them. There needs to be a cure for this. Lives are ruined because of this horrible illness.
Thank you so much for being there for us.

Thanks for writing this. I have a diagnosis (chronic migraine headaches, daily headache, and tension headaches) but I can empathize. I don’t look sick most of the time, either. Some understanding, compassionate friends ask how I am doing, etc. Some listen for the answer, even. ha ha. I hope you find not only a diagnosis, but a treatment to make your days a little more bearable.

My doctor went to his office to look up what was going on with me on 2 separate visits AFTER the blood tests. I even heard him in his office calling a colleague who was befuddled as well. I have many lupus symptoms, but also some weird full body rash, not just on my face. Now I’m visiting the county hospital and I hope they will help me. I am losing relationships with friends as well. I am so tired and apathetic all the time and don’t even want to move or do anything. I used to be up for partying all the time :-/ My best friend seems to think that with a little exercise and eating one of her health nut cleansing programs that I’ll be cured and so it makes me feel like her opinion of me is really low right now. I have been eating a mostly vegan diet with little fat in it and I still feel like crap all the time. You would think she would stop assuming I’m just being unhealthy. It’s sort of making me want to be alone all of the time when my best friend treats me this way. I am starting to think even with a correct diagnosis she will be this way. I would hate to lose friendships over getting sick. I already lost my job 🙁

THANK YOU THANK YOU THANK YOU
I honestly thought i was the only one feeling this way….. i have been told by 6 different doctors that i am a medical mystery…. im 16 and i have the symptoms of about 15 different diseases.. the doctors dont like me because i dont fit into one box… its killing me inside…..

I read this with such empathy & sympathy. It is so beautifully written. I was diagnosed with CFIDS/FMS in ’92. For yrs. I knew there was something seriously wrong, but I didn’t know what, & I knew of nobody like me. Finally, one day I read about CFIDS in a tiny article in a women’s mag. & the rest is history.

Not a day goes by that I don’t wish for a different life, a better life. One that has some normalcy to it. One without horrible pain & fatigue. I do remember the day I was finally diagnosed & how one little tear fell from the corner of my eye, when it finally was given a name.

People with good health take it for granted. I was in the hot tub last nt. at the gym, trying to ease my pain after a water aerobics class. Some smart know it all said something to me who works at the local hosp. He asked me WHAT I’m doing for my condition. He asked if I take pain meds & something for sleep. When I told him everything I depend on to save my sanity, he told me: “Well, you KNOW there is a cure for that DON’T YOU?????” How many times have I heard this???? When I asked WHAT it was, his answer was that he works in a hospital & cannot give medical advice!!!! You don’t know HOW hard it was not to tell him exactly how I felt with that answer as he smuggly sat in his comfort zone that I will NEVER have. He finally suggested a book to read. Supposedly, the one with ALL the answers.

How many things HAVE I tried that have led absolutely nowhere??? How many times have I felt the depression & disappointment of just one more thing failing me? How many times do we all need to listen to well meaning arrogant people who don’t truly have a clue about what it is to feel like being close to death on a daily basis with no hope of things getting any better? Yes, I do have a name to this, & for that I have to be grateful because it truly WAS a relief to know it HAD a name. Still, as with the rest of you, my days & nights are wasted with no productive time, & being miserably sick & trying to muddle through with a smile on my face. We all need each other, because truly, until anyone walks in our shoes, they just “DON’T GET IT”. Nobody, but nobody understands the physical, nor emotional pain of being chronically ill. Hugs to all of you.

Sonja, thank you so much for publishing this! What gets me the most, as someone with an invisible chronic disease pursing a graduate degree in the medical field, with the lesser known disorders is the lack of research. As much as I search my way through databases, the fact is no one has cared enough to really find out what this chronic disorder means for quality of life, which means patients are left with anecdotes on the internet at best.

And Miranda, the line “where you hope it’s cancer just so you don’t feel like you are making it all up, and can justify it to others” made me cry, because oh have I been there throughout my diagnosis process (which was thankfully short). Because then people would understand, no one faults you for having a crappy day and not being able to make it into class/work when you have cancer, but when you have a bad day with whatever, people don’t know quite how to react.

I hear you, I have neurosarcoidosis, but it took almost a year of fever, diarrhea, and finally losing my balance and constant vertigo before doctors figured it out. I know a year doesn’t sound like a long time, but it was for me. The symptoms weren’t what did it, it was the not knowing! Now, I don’t envy those with cancer, lupus, or anything else. But I understand your complaint. Where’s our ribbon? We are the invisible disabled and it does suck! People look at me like I’m drunk when I put gas in my car and then get back in with my son and drive away. I’m not drunk, but I cannot walk just the same. I wish for more compassion from others, and a little less judgement. Those same people are the last to help me whenever I fall down too! And if I tell them I have neurosarc, they look at me like I made it up! Trust me, you don’t want it!

Thank you! I really needed to read your words today. I wish I had a name for my pain. I keep thinking if I had a name it would make the pain real for me and I could know once and for all it isn’t in my head. Why do I not trust myself? I certainly feel this pain day and night. I at least have a doctor who believes me when I tell him how badly I hurt and gives me some pain relief and I should be grateful for that. But somehow if I only had a name maybe others would accept me or I wouldn’t feel so guilty for not participating in life like others. Maybe if I had a name for my pain I could feel less powerless. Somedays I just want to make up a name for it. So what if no one’s heard of it. They don’t listen to me anyway. The name would be for me; to give me back the dignity I have been stripped of for over 3 years.

Wow…your words are my words. How many times have I said exactly what you wrote. To many times to count. I want someone to care about my disease even though they cant figure it out. I have house payments to make, a car that needs gas, and doctor’s appts just like everyone that has a diagnosis. Why do they get the support and not me?

I have seen doctor after doctor from rheumy to neuro to hematologist with only more questions. I have stopped looking for answers because there is no one to listen. I have stopped going to the ER unless I literally think I am going to die.

However just like all you other spoonies I take things one day at a time.

Thank you so much for expressing this!! Although I have been “diagnosed” with Adhesion Disease, there is no cure, no “special month”, no ribbon, etc. And not many people have even heard of this disease. In fact, just last month I was so frustrated I told my doctor that I need to have a well known celebrity get this, so that there is more awareness of it. Of course then I felt guilty for wishing this on anyone….however so many of your thoughts/emotions are what I have felt/am feeling. Thanks for putting it into words!!
Sending gentle hugs to you and a hope for a diagnosis AND a cure to your suffering.

Thank you for writing this. You took the words out of my mouth. Although I am only 28 years old, I have been dealing with severe pain and illness since birth, what now, after all this time, doctors think they can put a name on…I had systemic juvinile idiopathic arthritis, which turned it’s ugly head into what they “believe may be ” stills disease. But i’m not yet officially diagnosed.

I feel your pain. It’s almost like, if it had a name, there must be a way to treat it, right? And I guess that’s why we want so badly to put a name on our often autoimmune diseases, so we can get a little pain relief, and so we can justify our pain and suffering to others, which in a perfect world we wouldn’t have to, but that’s just not how it works. Those around us, those that don’t have to count their spoons everyday can’t fathom what its like to be one of us, go through what we do.

What really sucks, is that even if we get a named diagnosis, it may be a rare condition in which most people don’t recognize by name, including a lot of doctors. I had to do research on my own and make a brochure to hand to all of my doctors (other than my rheumy) about Stills Disease and what it was. My pain management doctor, who has been practicing medicine for over 35, has never had a patient with this condition (if that’s what it really is), nor has he heard it mentioned in over two decades. So it may have a name, but I’m thinking that doesn’t mean much in this case!

It’s sad that I was hoping that my enlarged organs and lymph nodes were in fact cancer (which was believed at first) just so I could have a name to the problem. Yes, that is how desperate we are for a name to our condition…where you hope it’s cancer just so you don’t feel like you are making it all up, and can justify it to others. So so sad.

All of us here feel for you. Keep writing, your words are beautiful and writing is truly cathartic. It keeps our brain working when our bodies just can’t. Keep it up, what a great article.