Hello from Liz, 39 years ME/CFS this year

  • I had ME/CFS ages 14-16 in NZ, undiagnosed, had tonsils removed, didn't get better, missed a lot of school and was better by 18. Suspect this came from a combination of glandular fever, immunisations (suspect polio or tetanus) and stress.

    I was perfectly well with high energy and very busy until just before my wedding. so much energy I suspect I have ADHD tendencies. I had the same three factors - travel vaccinations with the only similarity being a tetanus booster, stress and glandular fever. I also travelled in Asia in that period. I came down with ME/CFS in 1984 after those events and was getting well at the sixth month mark when I fell pregnant. I never regained my health.

    I now have the added diagnoses mostly by professors, assoc profs and specialists of: ME/CFS, hEDS, POTs, MCAD, plus a rare form of non-hodgkinsons lymphoma - a blood cancer, Grovers disease, osteoarthritis.

    I have NDIS funding and am on disability pension. My husband of 40 years is my carer. I have tired CBT and GET and so much else. Pacing helps, low FODMAPS and low histamine foods help. I take very few drugs and more of the over the counter preparations.

    Over this time I have accumulated much knowledge about my separate health problems and have educated a number of doctors and allied health. I have a team of health professionals around me but the onus of my care falls on me. Keeping myself ticking along on a baseline of 30% on the Bell's scale of disability is a full time job. My main symptoms are gut issues, PEM/PENE, brain fog, pain and fatigue.

    I use wheel chair, mobility scooter, walking frame, sitting stick, noise cancelling headphones, sunglasses inside and splits on my damaged joints. I have had success with PRP injections for joint stability.

    Despite my health and the relentless hampster wjheel of managing it hour by hour, my mental health is good and I am happy and outgoing. I enjoy bookclubs and writing but would prefer to be employed and horse riding and swimming. I am now 65 and have moved to coastal NSW.

  • So much in your story Liz.
    Really lovely to have you here in the community forum. Welcome.

    Can I ask you about one quite specific thing?

    I too benefit from low-fodmap diet. And histamines are an issue for me too.

    Here's my question: what are some low-histamine foods that you eat? The other part of that - what are some high-histamine foods you avoid?


  • @PaulB Thank you for your question PaulB. The histamine journey is one of food elimination and then adding back in foods to your diet slowly. It's one of the most difficult challenges, I believe.

    I have foods I naturally don't like and don't agree with me eg eggs. I have some I love but cause reactions ie broccoli. Often these foods belong to particular chemical food groups and you start to see the connections. The other thing is to keep the food diary, note what you eat and when. I have symptoms come on about half an hour after eating. EG reintroducing chocolate yesterday I realised half an hour later, the intense itching on my trunk and flushing was the histamine in the chocolate. There are histamine food charts floating around the internet.

    Because this problem is ramping up faster as I age, I have basically created my own elimination diet of chicken, low carb, veg, fruit, lactose free yoghurt and milk, seeds and endless chicken bone broth soup with vegetable as a staple. I keep a food diary. I note what I eat and when. I have also increased my antihistamines the H1, H2 and PPI which really help once I know what I can eat. Please get in touch with me if you want to know more about the histamine blocking antihistamines. I try and slowly introduce more foods and I soon know when I am reacting. You have to be careful the antihistamines don't block or temper the reactions as the symptoms are so variable.

    The aim here is to increase over time the number of foods your body can tolerate. There is no quick fix, it is tedious and slow. There are very helpful facebook support groups but no two people are the same. Have a google of Drs Afrin and Theorides who are the world experts on this disorder. They and the groups have a wealth of knowledge on the histamine blockers.

    Imagine a bucket half full. We keep adding histamines - pollens, pets, chemicals, foods etc to the bucket until it overflows. Then we get symptoms: sneezing, flushing, gut issues etc. The aim is to keep the bucket from overflowing as we cannot exist without histamine responses. Please feel free to contact me as it's a long and difficult journey for the non-biochemists amongst us. LIz

  • Hi, Liz, Please to meet you!

  • @LizHo Hello pleased to meet you.

  • @LizHo Hi there!

  • @donnamarie Hi Donnamarie

  • @crashdummy Hi Crashdummy

  • @Claudia Hi Claudia, good to see you here!

  • Hi Liz,
    Thank you for sharing your long journey with mecfs and other health issues. I have only just joined the forum. I’m not even sure I’m accepted yet, as I get brain fog before I get to the end of things. mecfs is an uninvited guest and I won’t give it a capital M. Apart from some tests by Newcastle University in the early nineties, which showed gut dysfunction, viruses, mineral deficiencies (despite the vitamin and mineral regime). I hardly even spoke to many people I wouldn’t call myself severe anymore,but have been seeking answers for many years since 1987. Then I let it go, tried to focus on my anxiety, adhd, 4 neck operations, both shoulders torn, both thumbs have metal in them, bo5 biceps tendons ruptured, and a lot more. I haven’t been connecting the mecfs dots.
    Isn’t it great that we can chat to each other and even have many more answers than we had.
    Will put an introduction on the home page when I find my way around the site.

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