Discussing :: Chronic Fatigue Syndrome

#11

jewellnz

Yes fibromyalgia and CFS can indeed be the same thing, the experts don't seem to know really,go figure, i have had fibromyalgia for over twenty years now and it sucks, but you just have to try and get on with life and although it really does make life really hard at times, getting support is of the utmost importance, whether it be through a group or your family, it is so mis-understood, as it is the invisible disability,and understanding is not really forthcoming, there are many who swear by using natural remedies, and if they work for you, great, personally i have yet to find anything that helps me.
resting is really something you just have to learn to do, for example if i am about to do a small travel, like ham to auckland, i need to rest up before hand, i have found this invaluable, and makes it possible to achieve these trips now and then,as for me travel has always been an issue.
Lack of sleep being another, still have not found anything around that, the small dose of amitriptilyne i was first given when diagnosed with this illness, was terrible, made me like a bear with a sore head, so i have chosen to not use any medication, other than panadol and menthol rubs for the ongoing pain.
To be correctly diagnosed you have to see a specialist, and even though there is no cure as such or anything remotely able to help this illness, it is better to know what you are dealing with and learn strategies to put in place to help you get through each day.
I am now older and dealing with other issues, such as arthritis, which goes hand in hand with fibro unfortunately, and it is getting tough, but to everyone out there suffering this, hang on in there, life is still worth every single day, i just know there are days, when it feels it is not worth it all, been there done that, got the T shirt,gentle hugs to all suffering today and every day.


T.J.

Yes I now understand more the frustration when people say but you don't look sick! That's cos you only see me when I feel good! Otherwise I am hiding at home...probably sleeping! Am learning my boundaries but sometimes do push them in order to achieve the goals I have set for myself each day. Usually have a busy day followed by a stay at home day. It's all about scheduling!

#12

daisy

I'm really enjoying reading everyones comments not all doctors do believe in cfs so finding someone to talk to is hard.


TheTracenator32

I have been trying to get a diagnosis for nearly 5 years and I finally have been given a "probably chronic fatigue syndrome" diagnosis, which at least means I am finally starting to get help. Even doctors that believe in cfs are relunctant to diagnose because they don't know much about it and they feel like its a last resort and like saying they can't help you.
I'm so glad that I'm on track to finally getting a diagnosis.
I am at university at the moment and recently had a huge setback in my health. It's really hard finding support in NZ from what I've looked at...


Anna

lol i find doctors are like this with everything these days! they never want to give yo a definitive answer, because most of the time they can hardly tell you what it is!!


T.J.

Keep looking til you find one that does!!


T.J.

Yes, interesting to see so many people have experiences with CFS as no one really talks about it so you have no idea if you are the only one or not!


T.J.

I went to the doctors several times but mine was away each time so had to see the stand in doctors. I kept going back with the same thing only to be told 'it was something viral'. Finally got to see my normal doctor and she has been awesome.


StillMe

We always think that Doctors know everything, because they are in a position of power, and we pay them a lot, but sometimes they are just as much in the dark as we are.

I think sometimes they go out of the office to 'check something' and google my symptoms.... O.o


T.J.

ha ha - in that case I would have everything! I develop symptoms as soon as I read about them, im sure!!

#13

Eloursnz

Thought Id share this. It's called The Spoon Theory and for me is exactly what I go through. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

#14

T.J.

Thanks everyone. It has been a long journey and I have only just started! Have had the last few months on extended leave but may have to decide between giving up my full time job as they don't want part time hours. Till getting stuck in the daytime naps...trying to give those up but they're just sooooo goooood! I have a brilliant doctor who has helped heaps too. She recommended dr vallings too but haven't had the extra money to see her. Given that I have all the time in the world now but no income...! If anyone would like to email I would love to hear from you and your experiences. Sometimes I feel I'm going mad and it is hard to distinguish between CFS and life in general! Anyway, my email is natala_pilet@ hotmail.com

#15

ibnita

My friend was diagnosed at 15 and it wasn't until she was 25 that things began to improve and she could function through the day. I sympathise with anyone suffering from CFS.

#16

Mrs Richards

hiya! im new on here & so glad I found this post. I have had chronic fatigue for 5years now (I call it m.e ), my hubby has m.e too- we both caught glandular fever really badly- were bedridden for nearly 1year & both never recovered & still to ill to work :(. ive heard of doctor ros valings- the only m.e/cfs specialist in nz & shes based in Auckland. haven't seen her though. I would love to meet others with this


T.J.

Welcome! Where abouts are you?

#17

Mrs Richards

im in Whangarei. where are you? your welcome to add me on facebook if you like and anyone else- im on there abit as not well enough to be active for a lot of the day
think you can find my facebook through my email hayleyannrichards@hotmail.com or otherwise my name Hayley Richards (photo of me at the snow with arms up in the air)

#18

animal lover

Anyone can add me on facebook as well if they want to. Just under Abby Soffe - picture of a mini horse. T.J. I just saw your email address, sorry I haven't been in touch, I will blame it on the brain fog, lol. Mine is petomaniac@hotmail.com.

#19

Amber

I had CFS for 3 years in my early teens I hate to say it but cutting gluten and lactose was the only thing that worked for me!

#20

jdf

I have chronic fatigue and I find what works for me is a healthy diet, exercise, having rest days after doing something big and I have cut out dairy and gluton. Give it a try otherwise take note of wj=hat works for you.

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