Welcome to the Community Room! introduce yourself and say hi
So sorry I haven’t replied to your question
I’ve had some family issues to deal with
My son lost the use of his voice one year after he became very severe
He has had ME/CFS for about 25 years but coped as best he could with family support
He hasn’t uttered a word in 4 years
I can’t tell you what it’s like not to hear his voice , we have now developed our own sign language ,that is how we communicate
It happened over a very short period , seems to affect only the very severe
How are you coping , do you have some support ?
Catwen last edited by
Hi, I'm Caitlin from Victoria.
I've been sick since I was 15 so about 16 years now. Just realised I've lived longer sick than healthy which is kind of weird to think about. Was busy with school + elite sports, got what felt like a cold and never recovered. Ended up getting diagnosed pretty quickly, was in the "I don't know what to do with you" doctor limbo for a while then ended up as a patient of Dr. Lewis.
My health flucates quite a bit - I've had some years stuck in bed not being able to tolerate light, sound, smell, touch, temperature etc and a few brief periods where it's felt like I'd be able to live 1/4 of a normal life. Mainly though its in the middle. Currently I can use the computer for a little bit and I can reheat food on the stove (if I have stool handy) which is a win. I was into crafts over the past year (knitting/crochet and embroidery) but can't see that well atm so its on hold for now.
Glad to be here and to have a place to talk and share experiences with other people going through the same thing.
@shetland Oh Helen, the severity and extremes of this illness is heart-breaking. The loss of speech and mobility, on top of all the other symptoms, is just how sinister and chronic ME can be. Please let your son know, that there is a whole community of people who understand and can relate to living with this. Becoming dependent on family members for daily care and support is quite often the untold part of the journey. I am very grateful, fortunate and blessed to have my husband as my carer. When I became severe and unable to talk or walk, it threw our whole lives into chaos. We had to re-plan our life and future. The upheaval, re-arrangements and flipping our whole life around, whilst living with the illness, was the most daunting, exhausting and emotional time. Where do you start trying to make a life with this 'Thing'? There are so many other parts to living with ME that affect the patient and carer. I hope we can talk more on this. I can imagine your journey to be just as chaotic and having just as many hurdles and challenges. From my family to yours, we hear you.
@sez Hello Sarah, Pleased to meet you.
@Catwen Hello, Caitlin Pleased to meet you.
Would love to stay in touch
You are right in describing this terrible illness
I am happy to hear you have a supportive husband , all too often you hear about people being abandoned! I have a small but supportive family and also have friends that I keep in contact with
I have a Carers who come in twice a week for 4 hours so my husband and I can have a break.
I also use that time to do things for my mum who is 92 !
Live seems to change so dramatically sometimes but I guess we are fortunate to live in Australia
Take care , will be thinking of you
Hi, Sarah, pleased to meet you!
Hi, Catlin, pleased to meet you!
Hi Caitlin, thanks for sharing a bit of your story. Pleased to meet you. Reading your intro reminds me how amazing we all are living with challenges of ME/CFS!! Hope you’re having a good day
@Catwen hi caitlin, nice to meet you. I also knit/crochet when able to
Looch last edited by
Hi Caitlin, welcome
Looch last edited by
Hi Sarah, welcome
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
@puddleduck Hi and welcome to the forum. Sorry to hear you've been on the diagnosis merry-go-round.
@gretch thankyou. Yes i certainly have and orobably like everyone else thousands of dollars later
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.
PaulB last edited by
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, Please to meet you!
Hi, Liz, Please to meet you!