Chronic Fatigue Syndrome

Replies

By kerry.

Re: Chronic Fatigue Syndrome
Sun 5 Jul 2009 11:02

Well this is a bit strange Dee as recently my husband had a really really bad case of flu. He was wiped out and to be honest he's not like a typical guy when it comes to illness. Not allowed to be in our position lol.
But anyway since then he has been wiped out constantly and it's not like him. He's always managed on a few hours sleep -even when he was a little boy, he didnt sleep much.
It's a bit worrying and I've told him he must visit the GP and get some bloods taken.
I have no idea what it might be, whether it's still this virus in his blood or something worse like ME or diabetus (which runs in his family) or maybe thyroid trouble.

I guess we won't know until he gets some blood results in a week or two, but I wouldn't be surprised if the flu that he had has led to ME or CFS.

By SusanG

Re: Chronic Fatigue Syndrome
Sun 5 Jul 2009 11:43

Hi Dee, yes, I am caring for my daughter and have been for the last 6 1/2 years she has ME and fibromyalgia. It's been a very long arduous journey with many many problems but she is still heading in the right direction which is up. I have never "let" her fester away in her room or sit back and let it consume her although there are many times when she is too ill to dress but most of the time I try to distract her and get her out and about or doing something, (an achievement however small) each day. She has severe pain all over her body it moves around becoming severe in mostly her hips, neck, knees, head, stomach she is very fatigued all the time so everything is done in slow motion and she has chronic infections. Her sensitivity to light and noise has dramtically reduced over the years through a process of desensitization, it has worked but very slowly but there are still times when I have to whisper (at the beginning for about 1 1/2 yrs had to tip toe and whisper, and put everything down on a cloth or tissue so it didn't make a sound, even had to eat off paper plates so the noise was less!). It's a condition where a carer who really understands and is patient is needed and I think great moves towards getting better can be achieved if the confidence in themslelves and distraction and gentle excersize or movement is continual. It has been a great strain for me living this way as my whole family have abandoned us (see "being bullied" ) and there are still many people out there who don;t understand or believe in the condition so you can become isolated.
Good luck with your journey whatever it is and if I can be of any help I can give you my email,
all the best, sue

By SusanG

Re: Chronic Fatigue Syndrome
Sun 5 Jul 2009 11:46

Hi Kerry, if your hubby does have CFS/ME (I really hope he doesn't) but it won't show in a blood test, they are done really as a process of elimination to make sure there's nothing else wrong. I know there were times when I wished something would show so that we coild beat this thing and cure my daughter.
Let's hope your hubby gets better soon, X

By LinzMiddlemiss

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 09:19

Hi SusanG - is your daughter getting treatment for her Fibro? There have been great strides in progress made in Fibro treatment over the last few years.

By shelley 34

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 10:02

Hi Dee
I am 37 and have had ME and Fibo for 7 years. Please email meleave me your e mail address and I will get in touch for suppoet and advice. many thanks

By fenlander

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 10:14

Chronic Fatigue Syndrome or Carers Fatigue Syndrome Kerry? After a while your body seems to partially shut down to conserve the energy it has to carry on caring without breaks -a self defence mechanism. Been like that for years now. Your hubby could try taking some Echinacea for 2 or 3 weeks to build his immune system back up? And one of those herbal tonic thingys?

By kerry.

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 15:54

True Karen.
He went to dox about week and a half ago now. Asked for blood tests, doctor swept it under the carpet, Just said it's this virus...
Anyway I was a bit cross that myhusband accepted this- you know what they're like! Don't like to complain. Anyway I kept on to make another appt with different doc which he finally did on monday.
Now get this; first they said it might be swine flu (this is the receptionist) so the nurse would ring him back. She finally rang him back hours later and said she cant see him til next tuesday for bloods.
I said he should have explained he's a carer, boys on 6 (nearly 7) wks holiday and hes half a care team.
Well as it happens I had appt as I have chest infection so I said all this to reception and they're seeing him now tomorrow instead!
I hate having to be so bloody pushy all the time but ti's the only way.
So watch this space. He's no better. Still knackered out with no energy and sleeping loads, dozing on the sofa at the drop of a hat.
Maybe it is carer syndrome! After all we dont get any rest but why after all these yrs? He's only 41 but is acting like a 80 yr old!
I've been pretty run down too what with anaemia and lack of sleep and constant stress so it's not great here at the moment. and I feel guilty not having energy to be on the go with the boys all day from early til late.
Plus the boys respite has all been cut to virtually nought, even tho they got little anyway.

By fenlander

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 18:30

Only solution in these circumstances is to cut back what you do to the essentials! Having had no respite ever and having our boys home 24/7 since 2000 its the only way we've found to cope. The boys have just had to understand and fortunately when the chips have been down they've responded - take the michael the rest of the time but knuckle down and help when we can't. Piece of elastic only has so much stretch in it.
You have to be pushy with docs - if I didnt make the calls the boys and Neil wouldnt ever get seen! You cope for so long - found that when we ran our shop 7 days a week but suddenly one day your body says "no more"!
Take care and hope you both fell bit better soon - arent you waiting for an op too Kerry?
Fen x

By kerry.

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 18:50

Thanks Fen, I am supposed to have rung the hosp about a gynae appt as I have fibroids and a cyst and awful P's every month (and in between too!) but I havent got round to it yet.
Gary is waiting for a pre op for his hernia appt but hes dreading it after what happened last time with his first hernia.
I'm just a bit low at the moment- worried about whats wrong with gary etc. Plus still fighting the bloody DLA for Georges mobility tribunal.
You can see why people say stuff it and accept what they're given- but unfortunately I would rather make myself ill and stick needles in me eyes than give up against the bureaucracy of this insane and unjust health and welfare system!
But you're right though- sometimes it does get too much. I think that's where I am now but I'll get over it- have to don't we!
Once Garys had his blood results etc I might feel better!

By Bernie56

Re: Chronic Fatigue Syndrome
Wed 22 Jul 2009 20:38

It gets me so angry reading your post Kerry, it is ridiculous that both yourself and Gary are putting your long term health at risk in this way. What would happen to your boys if god forbid you were both hospitalised at the same time? The poor little mites would be sooo lost, I do hope you both get your problems sorted. Love to you both I think you are amazing Berniexx