Need help managing possible CFS!

I am a 20yr old female from New Zealand and I believe I am suffering from CFS.

I can’t pinpoint a time where I believe my CFS began, but I remember the onset of a few of my major symptoms, the earliest being when I was 7yrs old.

I began suffering from breathing problems. I was taken to a doctor, diagnosed with Asthma, and given an inhaler. My mother refused to let me use the inhaler as she didn’t believe I had Asthma because I wasn’t having difficulty breathing out, I was having difficulty breathing in. I would frequently hyperventilate and began feeling like I couldn’t take a satisfying breath. This wasn’t necessarily onset by exercise as it could just as easily happen to me while I was sitting on the couch watching t.v.

At around 17yrs of age, I went back to see a doctor about my breathing problems. He checked my lungs and told me they were perfectly healthy and I did not have, nor had ever had, Asthma. I then also informed him that I was suffering from dizziness, nausea, heart palpitations, and extreme chest pain. He listened to my heart and told me I had a heart murmur that would need to be checked out at the Hospital. I went to my appointment at the hospital and had an EKG and Ultrasound done on my heart. The doctor who came in to tell me the results of my scan basically laughed at me and he said to me “I don’t know what’s wrong with you, but you’re not going to die”. This has been the attitude of almost every doctor I have seen. “I don’t know what’s wrong with you, you must be putting it on”

At 14yrs of age I began experiencing extreme insomnia. After months of struggling on barely any sleep, I did a complete 180 and all of a sudden began being barely able to stay awake at all. I visited another doctor to try and finally figure out what was wrong with me. He told me I was depressed and prescribed me anti-depressants (fluoxetine). After months of taking them, I was feeling worse than before, like a shell instead of a human, so I stopped taking them and went to see another doctor. This doctor told me that all teenagers are tired and I would grow out of it. Third time lucky, I thought that maybe another doctor’s opinion might help. I had been looking online to see if I could find anything that might explain all these weird problems I was having. I explained to the third doctor that I thought maybe I might have Chronic Fatigue Syndrome and he basically told me there were no tests for it in New Zealand and they didn’t accept that it was even a real thing and laughed me out of his office as just another hypochondriac.

I have been struggling with a long list of health problems for many years now and just want to be taken seriously. There is currently a study being done by one of the Universities here in NZ where they are looking at CFS patients. My mother was accepted into the study and was diagnosed with CFS. She said that all of my symptoms mimic hers and as there is a chance it could be genetic, she is trying to get me into the study.

Basically, my point in writing all of this out is that I just want to know how to deal with this. How do get people to take you seriously when it’s something that doctors won’t even acknowledge? How do I explain to people that “No, I am not tired like you are because you went out all night partying. I am tired from getting out of bed and having a shower” or “No, I am not being lazy. I really want to come for a walk with you, but I am afraid that if we walk somewhere, I won’t be able to walk back”?

What has everyone else tried that seems to help their symptoms? I know different things will help different people (my mother was experiencing unexplained seizures that she was told by ambulance staff were all in her head and she needed to stop faking them – turns out cutting out sugar and carbs has stopped them) but I’m just wondering, do I need to manage each symptom individually or is there something that people have found helps a large range of symptoms?

Any help would be highly appreciated! I’m, I guess, what you would call a “high-functioning CFS sufferer” as I am currently working a 40hr week – it’s just a very long and exhausting 40hr week.

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