Welcome to the Community Room! introduce yourself and say hi
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@Catwen hi caitlin, nice to meet you. I also knit/crochet when able to
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Hi Caitlin, welcome
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Hi Sarah, welcome
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Hi. Ive not been well for years. It started when i was 38 and had a bad virus. A few months after that im diagnosed with hashimotos and pernicious anemia. I was told i will be better after medication....wrong. i have been dealing with exhaustion, body aches and sore skin. Ive been to many specialists. One told me fibro, 3 told me muxed connective tissue disease. So my bloods always register a higher than normal CK level and i have a positive ANA. Recently i asked the dr to see if i have had glandular fever and presto i have. Ive been wondering for years if this is chronic fatigue. Can anyone tell me if there are any good drs around . I live in Carrum Downs. Thanks
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@puddleduck Hi and welcome to the forum. Sorry to hear you've been on the diagnosis merry-go-round.
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@gretch thankyou. Yes i certainly have and orobably like everyone else thousands of dollars later
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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.
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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?
Thanks,
Paul. -
@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
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Hi, Please to meet you!
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Hi, Liz, Please to meet you!
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@puddleduck Hi and welcome to the forum.
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@LizHo Hello pleased to meet you.
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@LizHo Hi there!
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I had been seeing a GP for around two years trying to address my fatigue. Test after test was done including a heart and brain scan, liver function, B levels, thyroid etc etc. I am a perfectly happy male 58 yrs old but of course she insisted it was a mental health problem and I very reluctantly tried several medications of all which I had terrible intolerance side effects. I refuse to see a mental health practitioner for a physical problem. She sent me a letter instructing me to find another GP. I went to see a young GP who of course suggested antidepressants and mental heath advise. I have just been to see another who straight away said CFS on my first and only appointment and took three weeks holidays immediately. I am currently unemployed and Centerlink require I look for eight jobs a month or commence retraining courses. Unreal, neither are honestly possible with my brain fog, post exertional malaise and fatigue. I am a sensible person and very comfortable with my decision making processes. ME CFS really takes it's toll on a person which is greatly enhanced by the lack of understanding from those who are educated to diagnose and assist us...
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I'm sorry you've had such a terrible experience, and sadly it's one that many of us can relate to. I wonder if you might be eligible for the DSP? Centerlink's requirements are completely impossible for sick people.
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@Coggles77 Sorry for the delay in replying. I understand your apprehension. It adds to the stress. Hopefully things will change for the better for you. Sorry for the lame response but I am happy to share anything. I am lucky to have been largely free of money issues mainly by being cheap to run. Thanks for contacting me.
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Cheers for your reply river,
I do believe a DSP is required for me however I am unable to get a diagnosis. The latest doctor I have have one brief introductory visit with before she took holidays offered me a two week medical certificate. I have been on or in my bed for two years. I do attempt to do something most days and go out for a hour or so several days a week whilst feeling terrible only to strip off and lay on a towel on my bed as soon as I get home. My inability to have a recognized diagnosis to present to Centerlink is compounding my situation... -
@Kalinda Someone here may be able to help you find a doctor in your area who can diagnose and provide the necessary documentation for your DSP application - we are not supposed to recommend healthcare professionals publicly here for liability reasons, but discussion in private messages is ok. If you use Facebook, there is also an excellent support group for people with ME/CFS applying for the DSP on there.
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Hi all, after years on the diagnostic merry go round, test after test, I have had more holes put in me than there were in the Trump electoral campaign. I feel I am deteriorating and would once and for all like medical confirmation. I ask kindly those of you here that have received one, who was it by, what was their professional status ?. Thanks in advance...
