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Lauren2000
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« on: May 28, 2018, 09:22:39 PM »

Hi everyone

Iím Lauren, 34 & live in UK. It is looking likely that I will soon be diagnosed with cfs & im seeking out support and ideas.

My health history is that I first went to the doctor in May 2016 as I kept getting colds during the winter 2015-2016 and when spring came I was so washed out & drained. I was sleeping so much and napping in the day which was totally out of character. My doctor ran some blood tests & I was diagnosed with coeliac disease in August 2016. The doctors said this was the reason Iíd been feeling ill so I was expected to recover fairly soon. But things have got worse and worse since then. Cfs was mentioned around winter 2017 but I developed very high blood pressure and tachycardia so I was waiting to see a specialist about that. Again my gp thought that would bring the answers but here we are in 2018 and I still have no answers. I donít quite fit the usual presentation of cfs/me so Iím not sure what will happen (like I donít have sore throats & I have restful sleep) but I am absolutely exhausted and feel dreadful. I have lost my personal life and I am clinging on to my job with my finger nails. I am so desperate to get well again.

I am waiting to be assessed at an infectious disease doctor now and my appointment is in August. I am feeling quite low, scared and hopeless tbh. Just wanted to say hi and introduce myself.

Lauren
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roger
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After 12 years of trying, I'm now A OK


« Reply #1 on: May 29, 2018, 10:31:53 AM »

Hi Lauren, and welcome.

First, and this may be a silly question, but having had the Celiac diagnosis, are you totally avoiding gluten and the crap processed gluten free alternatives? I ask because many people with a Celiac diagnosis seem to think it's okay to eat bread as long as they don't eat too much. Consequently, they feel ill and exhausted all the time.

Regarding the rest, it's horrible having to wait for test after test, usually with long gaps in between, because knowing where you stand is the beginning of getting well again. But until you get everything else other than CFS excluded, I'd suggest staying as relaxed as you can (I know, it's not easy!) and keeping an open mind. But that doesn't mean you shouldn't research CFS (and this site is a great place to do that) so you're prepared if it does turn out to be CFS.

Why not have a good look around the site & forum then post any questions you might have?

Best wishes

Roger.
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'Nothing is, but thinking makes it so'
Lauren2000
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« Reply #2 on: May 30, 2018, 09:56:31 PM »

Hi Roger

Thanks for the welcome.

Yes, I am totally gluten free and this has been confirmed by repeat blood tests and biopsy. I do everything possible to keep well and get back to being healthy but nothing is working.

Kind regards
Lauren
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roger
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« Reply #3 on: May 31, 2018, 05:07:56 AM »

Hi Lauren,

If it's affordable for you (typically £150 for a first appointment), it might well be worth having an assessment with a functional medicine doctor or a naturopath. They're often very good at getting to the bottom of things when the NHS isn't.

Whatever, good luck - I hope you get sorted out soon  fingerscrossed
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chill
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« Reply #4 on: June 20, 2018, 10:00:45 AM »

Hi Lauren

Sorry to hear you are having such a rough time, your story sounds very familiar.  I had a positive blood test for coeliac disease but them the endoscopy (ouch,never again!) was negative, so they ruled it out, but i have my suspicions and may do an elimination diet to see if i feel any better.  I was dx with CFS about 8 years ago, had a very rough couple of years and then was ok till about 6 months ago, when it reared its ugly head again. 

All i can say is be kind to yourself, sleep if you need to and dont feel bad about doing so, needs must.  I have recovered once if that gives you any hope, so hang on in there, i am really suffering too atm and so i know how hard it is.

take care
chill
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