Need help managing possible CFS!

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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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  • Posted

    I have posted my testemony a few times and do so here to save you looking for it.

    About 1963:: It was an idilic life for a young father with a lovely wife and threeYoung boys. Up early to tend The horses, walk and milk the goats. Family breakfast then off to School and on to the office. Then collect the boys and off home to walk the goats and tend the homes. weekends just as packed. It was a great action packed semi rural life in our large old house requiring endless maintenance and boundless energy. My energy fell a little short when the wheat and barley fields were sprayed. That should have warned us.

    Then came the Wilson era. Mr Wilson infamous for his "pound in your pocket" delvaluation speech. We could no longer afford our lovely big old house in its large garden and stables and outhouses. We sold up and moved to a smaller country house twenty miles the other side of town.

    It was not long before I went to the doctor. It is onyye of these "space age viruses" he pronounced. Code for "I have not a clue what is wrong with you". As I didn't get any better he referred me to a chest clinic. There the consultant looked at my Xray which had a number of bright dots sprinkled over the chest. He suspected Sarcoidosis and a biopsy proved it.

    He put me on a "smalll" dose of Prednisolone (22 mg daily) for three months. He assured me with two or at the very outside three treatments of three months he would have me right. From the first pill it was a disaster. Worse, I had not yet learned to say "No" to a doctor. The fatigue grew worse, I generally felt unwell, brain fog came and deepened, memory became more and more patchy, logical thought more and more impossible-at its worst, I had half an hour first thing in the morning-the smallest decision could take a day, or two or three. Speaking took immense effort getting a couple of words out at a time. 

    One time when I was about 40 I was walking with my father-in-law. He was about 70. I just could NOT keep up. I felt that I must be like an 80 year old. My legs would not go fast enough. And I was cold although I was wearing my wool overcoat on a hot  August day. 

    All that was spread over ten years. To me it is just a vague, patchy memory of misery. Our GP fairly early on had told my wife that such illnesses sometimes happened and she should not expect me to be around in about two years. Even in that my doctors were not correct. But pill was added to pill. None helped. At the end of this nightmare period I was attending the professor of psychiatry from the local top rate university. He listened/waited patiently while I struggled to get out the words to answer his questions. He added a large pill to my already large selection. But he wrote to the lung consultant begging him to stop the treatment. The Professor at least did not think I was a nut case or that my troubles were all in my head. Somehow when next attending the lung clinic I managed to decide. I told the consultant I would not take any more of his pills. "Is that fair to me." he replied. "If I do not come back, would that be ok?" I said.  He seemed happy at that.  

    We, my wife mostly, had been doing some research. It was difficult. There was no web that provides us with so much help today. We talked to friends and got some help from homeopathy. We were also told that if all else failed, and we felt all else had failed, we should move to a different area. So we sold again and moved into town. That was the beginning of the long slow road to recovery. My wife took advice from a dietician. So I had a short period of a diet of filtered water, boiled brown rice and pears. Why? apparently few people react to brown rice or pears. Then one food at a time was added. If I did not react that food was added to y diet. If I did it was excluded. With my new diet I gradually, very gradually made progress. Once I was making progress it was obvious when a household chemical or cosmetic upset me. Any offender was excluded. It also became obvious when I became affected by chemicals outside the house. I became very wary of any scent of chemical including cosmetics. With unremitting care and perseverance I regained an acceptable level of "normal" health. It had taken much of another ten years. After that I gradually became more confident and little by little I found I could tollerate nearly everything that I had once excluded. I was almost normal once again. Sadly, I have few memories of my boys growing from primary school to their mid teens.

    The major lesson I had to learn the hard way was never to push myself physically. Wherever I did there was a long pay back penalty of exhaustion and fatigue. I still cannot afford to push myself. I have to think very carefully whether the object is worth the cost of two to three days of being washed out.. 


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    • Posted

      Thank you for sharing your story!

      I am very sorry you had to go through that.

      Can I ask, do you think it had anything to do with the spray?

      I only want to know because around the time I started getting sick, my local council was spraying to erradicate an Asian Gypsy moth. Our house and section was coated in a thick, sticky chemical.

      I'm trying to cut carbs and sugar from my diet as that has seemed to help my mother but I will definitely look into the brown rice and pears thing!

      I also definitely understand the mental exhaustion. I do a desk job thankfully as I could never be on my feet for 8 hours a day but I just lose focus all the time and can't seem to get the right words out. I feel like I'm never really all that "present" at work.

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    • Posted

      Thank you Miabright for that kind note.

      The spraying was the first indication that I was sensitive to  chemicals. Our new location compounded that problem hugely. Decades later while Hungary they aerial sprayed the whole area against mosquitoes. I felt washed out for a day or two after that.

      your investigation into your diet goes well. It is a long and painstaking job. If you identify food in tolerances the job is very worthwhile.

      when I was at my worst I've felt that I was 2 feet behind my body and driving it from there. Also at that time when I spoke I had to concentrate exceptionally hard and my whole body would be in tension . I always sat leaning slightly forward with feet drawn back under the chair and hands clasped on my knee, every muscle tight.

      I do hope you will find some keys that will start you on the road to recovery.

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    • Posted

      That's interesting. I no longer live in the house that was sprayed but my symptoms have not improved at all. I moved away from there when I was around 11 and it wasn't til I was 14-18 that my symptoms got really bad.

      Hopefully I can get into the study that my mother has just been in. Even if it turns out I don't have CFS, at least that is another thing I can cross off my list of possibilities.

      It's sort of a double edged sort because it's nice to know there are other people out there who understand what I'm going through but also horrible knowing they are experiencing the same thing as me, because I wouldn't wish it on anyone.

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    • Posted

      It is a terrible terrible disease. I reckon that the time with ME  can be counted as being dead. It is just a large chunk cut out of your life. We each deserve sympathy rather than the accusations and disbelief that occurs all to often.
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    • Posted

      I completely agree.

      I almost didn't end up finishing High School because even if I was well enough to get up and drag my ass there, it was really disheartening to have teachers screaming at me if I fell asleep in class. And then to not even have doctors on my side to be able to provide some kind of medical reasoning so that the school could understand.

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  • Posted

    Hello Miabright:  I am fully supportive of, and understanding of, your issues, and you; as I know the feelings that you are wxperiencing.  I don't know if you read my last contributions (which I added on discovering this sight, last week);  but I,  too, spent many years trying to understand what was happening to me, and seeking many doctors' advice, too.  (even to going to psychiatrists, as I felt there was a good chance it ws psychosimatic - as I started having some issues with a weak muscle a couple of years after nursing my father who was terminally ill). At this stage, a physician with whom I worked, thought I had developed went through A LOT OF testing, including lumbar punctures, then blood patches, EEGs etc..all coming back negative.  Even after being referred to a Rhuematologist, also with whom I knew/worked with and trusted, I thought I only had Osteo-arthrites...but couldn't understand how this could cause all of the other more debillitating wasn't until I was having a coffee with a good friend of mine who was also a nurse, and she told me I had CFS...that i started researching more and more, and agreed.   In answer to your question re treatment, the only answer I have for you, is Yes, you do need to treat each symptom, especially the "burning pain in muscles" with Endep,  Valium for muscle Stiffness, and watch your Activity levels and stop/rest.....I still get Very frustrated, and know that even though my husband and children know that I do have a Definitive Diagnosis, I know my husband and son don't always understand why I can't do the things that they want me to....even what I could do  2 years ago, am not able to do now, and I think "why"..surely someone can find a cure?  It's not terminal...but it's b...restrictive.   My concern for you is your age, as you are sooo young, and you are missing out on the most important years of your life.  Perhaps, if you feel upto studying via correspondence, at your own pace, hopefully your will be able to have a career, and when answers come through, you will be ready to take on life with all that you can have, with a career and financial  security. 
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    • Posted

      Thank you so much for the kind and supportive words.

      Sorry to hear that you have also gone through the same painful process of elimination I have been through.

      I've been tested for early onset arthritis and scoliosis in relation to my pain. My arthritis tests came back negative. Xrays showed that I have mild scoliosis but not nearly severe enough to be causing the amount of pain I am in. Physio also hasn't helped so I was prescribed codeine to take every day for the pain - but that just isn't realistic! It made me even more tired than I already was and I wasn't too happy about the effects long-term painkiller use might have on my body.

      Studying wasn't for me, so I went straight into the work force and have an awesome job with heaps of potential to move up the ladder into higher positions - I'm just worried that I will deteriorate and have to leave and work part time. My work is understanding but they're a business and at the end of the day, work doesn't stop so if I can't do it, they'll need to find someone who can.

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    • Posted

      That is a sad truth of life. Businesses do not have a budget for employees going through a bad time unless the law makes them. In the years before ME was a possible diagnosis I kept my job because I had been diagnosed with sarcoidosis. I never believed that sarcoidosis was the cause of my malaise but it served its turn and I survived in employment those 10 to 20 years until I was able to do a reasonable day's sedentary work.
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  • Posted

    What a sad, but typical, saga. When I first got ME/CFS, two doctors told me I just needed a vacation, implying it was all in my head. One doctor said, “You know, some doctors don’t believe this illness is real.” I didn’t believe them for one minute. I went to UCLA and got a diagnosis. I stay away from people who don’t believe this is a real illness. I immediately stop seeing doctors who don’t think it’s real. In other words, I can’t control ignorance and arrogance. But I can control my own thoughts and actions. I do hope you get into that special program. Until then, there’s some common sense stuff you can do. First, don’t push yourself! That can cause symptoms to worsen, or can result in a relapse. You might want to reconsider your 40-hour work week. Avoid stress to the extent possible. To do this, aside from avoiding stressful situations, consider meditation and mindfulness, listening to music, deep breathing, whatever works for you. Get a good night’s sleep if you can. Avoid sugar and caffeing, and eat healthfully. Oh, one more thing. Your breathing issues remind me of when I went through “air hunger,” which is a feeling of not being able to get enough air. This is a fairly common symptom of ME/CFS. Could that be what you’re experiencing? 
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    • Posted

      That is exactly the reaction I got! The doctor told me he didn't believe it was real, and even if it was, he couldn't do anything to help me because there wasn't enough research in NZ so he couldn't diagnose or treat me. I stopped seeing him straight away.

      It's just really frustrating when you tell people you are too exhausted to do something and they say "Well maybe you should have an early night then". It's just so hard to explain it to someone who hasn't experienced it.

      I'm trying. I have cut out all sugar and and am on a low-carb Ketogenic diet. Never been a massive caffeine fan, and have never smoked. I also very, very rarely drink alcohol now and when I do it's only a glass or two. I just still can't seem to sleep properly though. I'm exhausted but my body just wont shut down.

      Now that I have researched CFS and know about it, I do believe that is what I am experiencing in regards to the breathing problems. Is there anything that you have found helps with this? No one has been able to offer me any explaination or way around it so far.

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  • Posted

    Hi Mia, Have you heard of ANZMES- The Associated New Zealand M.E. Society? They have a website under the same name and are there to offer support to those in New Zealand- might be worth telling the GPS you see too- if they are so ignorant of it. 20,000 poeple in NZ suffer with CFS/M.E. apparently so GPS shouldnt dismiss you (but heck we know they do hey). Lots of support on here as well as on support groups on the web in nhow ot cope etc and how to have the best life possible xx 
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    • Posted

      I just found out about them in the last week, actually!

      I am meeting with a lady on Friday to discuss things. I'm just so grateful to have finally found some support after struggling with this for so long.

      Thank you so much for your kind words!

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