Your story is all too familiar and I am far from the only one on this site who has gone through similar experiences. Hypochondria is a common misdiagnosis for people with CFS, as is depression - both of which I went through before getting an accurate diagnosis. Other mental illnesses are also often blamed. If it is any comfort to you, it has been officially confirmed to me more than once that my depression is caused by my fatigue and other symptoms, not the other way around.

I know that all of those negative test results are frustrating, but in one way it is hopeful - it means that a lot of the tests which need to be done to rule out other possible causes have already been done and you may be able to get an official CFS diagnosis if you can find the right doctor see. That is the problem with this condition, it is a diagnosis by elimination (if nothing else is causing the symptoms, then its CFS), though there is a possible blood test in development which may change this.

Finding a doctor who is familiar with CFS is the key and that will depend on where you live. I'm in Australia myself, but there are people from all over the world on this site who might be able to help with that.

Oh, and don't worry about sounding negative. We are here to support each other and all of us go through dark times. That is when we need the most support and this is a safe place to express those feelings and get that support.

Hang in there and know that you are not alone. You have found a community of people here who understand what it's like to go though what you are going through. Feel free to ask and comment and 'friend' people so that you can get to know them better.

Thanks for the response cmait. It's comforting to know I'm not alone in this, although I am sorry for anyone who is struggling. No one should have to go through this kind of suffering.

I'm interested in the new studies being done and treatment options that are available. The doctors from where I am do not believe in CFS as American condition, so I feel I'm fighting this battle all by myself.

I'm grateful I stumbled upon this support system here, having a hard time receiving any care from my whereabouts.

Thanks

I mean real condition, I am from America though. My autocorrect is silly at times. I'm sure there are doctors here in the US who will give a CFS diagnosis, I've just haven't found the right one yet, so making headway in this condition is difficult to say the least.

Cmiat, I can't spell today for the life of me lol. I'm sorry for all the grammatical errors.

Hey, don't worry about it. We all get brain fog from time to time. There are lots of Americans on the site, so they might be able to help with where to find an appropriate doctor.

If you check some of the posts going back over the last few months, there have been some discussions about new developments.

Hey, good to meet you :) I'm American and I just got on this group a few days ago. I struggled for years and went to a bunch of Docs in Nebraska and several said it was 'possible' that I had CFS but were really afraid of actually giving a diagnosis. ... it is hard in the US to give or get a 'label' as it affects insurance.

I found this site - http://www.cfstreatmentguide.com/doctors-and-clinics.html
I have also (several times) been told to find a functional medicine doctor. It is a specialty of MD that looks at multi system conditions (or that is how I understand it). There is directories that list where you can find them in most states.

For years I was able to get around still and my family and I have been working in Asia. Just last Oct I got a severe relaps in Cambodia and now I can't get out because I can't sit up or walk enough to fly anywhere. I had a US doc in the hospital here that finally gave me a CFS diagnosis but he wasn't happy about it. He had never seen or treated anyone like this but after all the tests ruled everything else out ,and I lined up perfectly with the description, he couldn't do anything else. I don't know if he believes in the disease either but he believes I'm not making up my symptoms (and for that I love him).

I think one of the harder things about this disease is that it is so hard to find medical support. It is hard enough to go through all the mess, but it is so important to have a doctor who understands, sympathizes, and tries to help with what he can. I just think it isn't in most doctors personalities to admit to not knowing and treating a disease that is so hard to understand. It is easier to just write you off than admit they might not have all the answers.

It is so important to do your own research and learn all you can... but when you are stuck in bed and your mind isn't working like it should... that is super hard.

I just posted on another thread about this, but I really benefited from reading 'Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition - by Erica Verrillo (Author)'. It totally opened my eyes about the disease. It has a well recorded history and so many more symptoms than most places list. It talks about the science and testing being done. It helped me believe in the disease and help me realize I wasn't crazy. Then it has a super comprehensive list of all the supplements and treatments that are being used. So when I heard about something or read something somewhere else I could go back to this book and find out if there had been scientific studies with it and how common or in what form people were using it for CFS.

This condition sucks, but it helps to know you aren't alone and you aren't crazy :)

My gosh, I'm so sorry to be so late getting to this. I haven't been on DS as much as I had before. My story could be your story. I also got ME/CFS after a bout with mono. I was judged by doctors and people around me. I continue to face that struggle. Let me just say again what others have said here. YOU ARE NOT LAZY and YOU ARE NOT CRAZY. Don't let them wear you down. They will disbelieve you and try to blame you, but you hold your head up high. This is a physical disease. Yes, it can cause some depression, but it is not CAUSED by depression. That's putting the cart before the horse. Don't give up. I'm glad you are here. Feel free to message some of us privately or friend some people. I offer my friendship if you are interested. I have all the empathy in the world for you. You poor dear. I can say that my kids used to think I was just making excuses but they have seen enough by now to know I'm not making this up. So, they are more helpful than they used to be. It will help if your fiance can take your part in front of them. Many blessings to you.

Hi, I just wanted to reach out. I am so sorry you are dealing with this. Mono seems to be a trigger in this disease.. it is what caused it in me as well. I also have a young child, so I know how difficult it can be.
The illness seems to take different progressions in different people, with some even improving after a period of time, so don't give up hope! I very much relate to how difficult this illness is, contracting it when I was quite young and suffering severe depression because of it. But please don't give up. Your sons need you. When I was in the midst of my suffering, I read a quote that says "don't ever give up (ending your life) because then your children will think that they too can give up if life gets too hard!" It really resonated with me. Our suffering can be immense and painful, but there is ALWAYS a chance at a brighter tomorrow. You CAN get through this, I know you can.
I would suggest finding a good counselor to speak with about these feelings. Mine has been really amazing. Try to educate your finance about the illness, there is a wealth of information online.
Also, there are other tests you can try like Lyme, gut bacteria, viruses.. to keep ruling out other disorders. I know it's a frustrating process, I am still doing it myself, but it might be helpful.
Have you been tested for autonomic disorders?
Are you familiar with The Open Medicine Institute? They are doing lots of research on CFS and the doctors will sometimes do appointments over Skype.
Have you ever gotten saline IVs? It's the one treatment that has helped me a bit and may help you as well.
Have you gotten your Vitamin D levels tested? Sometimes they are very very low after mono and increasing the levels will help with muscle pain/sleep.
Finally, I am not sure about the iritis... I haven't heard it linked to CFS before. Are you familiar with CrowdMed? They help solve medical mysteries... may be able to help with your eye condition at least. Just some thoughts!! Please keep us posted. :)

I agree with the poster who said don't let them wear you down or think you are crazy. Keep trying sometimes it may take the right test or right doctor and may be time consuming. To make a long story short my boyfriend was told it was all in his head ( crazy ) after a 15 minute office visit. I was furious. The next doctor gave him an M.R.I and he has a brain tumor. My mother was also told her heart tests were all normal. They said nothing was wrong after there tests, 2 weeks later she had a heart attack. A heart specialist went in and opened up chambers of her heart with some type of balloon devices. Her specialist said she was so clogged he could not even understand how she was still walking around breathing. Never give up. You know your body better than anyone else.

Hi I am sorry to hear that you are going through this . Don't lose hope hang in there that is why support sites like DS are here. I am new here to but I find it extremely helpful. I was diagnosed with CFS several years ago and other medical problems and mental illness diagnosis followed. My point is its not made up or all in your mind and I understand what it is like to feel awful and to be treated like you are a hypochondriac when you really aren't but have everything under the sun wrong with you. I can really relate to your story. don't worry it gets better don't give up.

Yes, it's so hard to believe that you have so many things going wrong in your body. At one point my husband said, he would ask for a body transplant, joking. I am so much better than I was. Garlic and Elavil 40mg. and Borage has helped a lot with the sleep energy and pain problem. I have more good days than bad days now. You're doing really well, in spite of all your challenges. I pray you will find some helps and lifelines, for your condition, and a sympathetic doctor.

Hi, it's been a few days and I hope you are doing better. Like you I have also had multiple tests, to the point I began to believe they were making them up just so they would have something to test me for. Someday someone will find a cause for this illness, and then the medical community will owe all of us a big apology, but don't hold your breath. WE are not crazy, we are not lazy. ON the contrary, we are strong both physically and mentally. Otherwise, how could we have survived? You're still here, I'm still here. Keep the hope. Live and love today, and remember you are not alone. Look at all the replies you received, from all over. We understand. I would suggest you have your fiance and children read what's posted here. Family support can make a big difference.
I hope where you are the sun is shining today.