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Original poster

People with CFS/ PVFS/ ME - how did you get diagnosed?

994 replies

Grockle · 11/07/2012 22:27

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

OP posts:
out2lunch · 14/09/2012 16:54

hmm if i don't do anything at all i feel better - no pain but a bit spaced out/still just as tired

Cupawoman · 14/09/2012 17:03

I have only had a tiny taste of what some of the posters on here have been through for years. I am not diagnosed with anything as it's way too early but have similar symptoms. Re the inactivity thing, I've read conflicting stories. Some sufferers who have recovered, albeit partially, said their worst mistake was to solider on at the onset. Instinctively I feel whatever it is that I've got, my body is telling me to rest up but maybe that's just me caving in and not being tough enough.

fuzzpig · 14/09/2012 17:07

I think the problem is that when people say you need to keep active and not give in to it, it feels like they are calling you lazy :( or maybe that's just me...

out2lunch · 14/09/2012 17:08

this illness only gets worse if you fight it though

Cupawoman · 14/09/2012 18:06

I think you are right out2lunch. Do you mind if I ask how long have you been diagnosed with it? And what, if anything, helps?

out2lunch · 14/09/2012 18:15

ten years next month cupa.

the only thing that really helps for me is loads of rest - mornings don't really happen for me
i can just about manage to get out on a daily basis if it is totally stress free and a short drive and i have someone to go with. not all bad but it s a long hard slog with no end in sight unfortunately.

if i do half an hours work indoors most days i can get away with a few aches and pains but anything more than that i pay for days and days.

the very best i can hope for is a day when i can get up with dd to see her off to school,get ready in the afternoon and go out for a bite to eat and chat and then have a nice evening watching tv and on mn.

i have tried all sorts of diff therapies nothing really helped but when i did turn the corner - i was a lot worse than i am now - of all things it seemed to be some homeopathic tablets that made a difference.

Cupawoman · 14/09/2012 18:46

out2lunch Did you start off with a virus or did it just come on gradually? I keep reading that often a particularly stressful time can trigger it. Also do you mind if I ask what was in the homeopathic remedy?

out2lunch · 14/09/2012 19:22

pming you cupa

belleshell · 14/09/2012 19:44

out2lunch i have beeb diagnosised 2 years, and i carry on because i have to, if i didnt i would lose my home...........i cant do that my kids have been through too much!!!! so i do what i can before i literally collapse, i do have to say my symptms are cyclic, or boom and bust, so when really bad i dont get out of bedm, feed myself get washed etc........i do however make sure kids are feed washed and off safe to school!!!!i had to move 100 miles back to be near my family to be able to do all this, meaning i had to leave my 13 yr old with his dad because he was settled in school,...........this horrible thing as ruined my life....i dont live any more just exist!!!! sound harsh i think im on a big downer tonight!!!! bloody PMT

out2lunch · 14/09/2012 19:51

do you have days where you feel ok/normal then belle? how long do your bad days last in an average cycle?
i would really struggle to get up and get ready for work let alone get to work and do a days labour then get home again.

fuzzpig · 15/09/2012 07:49

Can I just ask anyone who has been on amitriptyline - did you get side effects at first? I have to take 10mg every night for a month before seeing the doctor, and apparently they take a long time to start working which is fair enough, but they make me feel really hung over in the morning even if I take them earlier at night. Wake up with horrible taste in my mouth, really groggy, and bizarrely (considering I was told to take them by a headache specialist) a headache Hmm

belleshell · 15/09/2012 08:22

Hi out to lunch. Every day is a struggle but my cycles usually go about 6 months boom 8 weeks bust! After every bist I never quite get back to how I was before... My week is generally survive mon to thurs and then not very much fri to sunday.. Today (and yesterday) I just want to shut the world out. But I can't. I feel I exist I don't live anymorem
Fuzz the odd taste and hangover is how I feel also an extreme thurst and it makes me eat anything and every thing in sight!

stressedHEmum · 15/09/2012 09:48

I have a diagnosis of ME. I carry on because I have no choice. I don't work but I have 5 kids, 3 of whom are HE, am a church elder with all the responsibilities that entails, a BB leader, a safeguarding co-ordinator, the organiser of the foodbank initiative in my church as well as other stuff. I HAVE to do things whether I actually can or not. Yesterday, for instance, I had a meeting in the morning about one of the projects I am involved in. I was out for 2 hours and had to go to bed for the rest of the day.

Most days I have to go back to bed in the afternoon, just to get through the day. Everything takes me much longer to do than it used to, you could stir my house with a stick, and meeting my responsibilities means that I quite often miss Sunday Service (especially Communion because after I've visited my people, I'm fit for nothing for days.) Quite often even going for a bath puts me back in bed and everything has had to change in here, even the way that I cook for the family.

I only ever leave the house for commitments, never for pleasure and can go weeks without going out at all, except on Sunday to church. Even internet shopping is a struggle because I can't concentrate on it and all that scrolling and clicking hurts my hands and arms.

Every day is a terrible struggle (and I am a bit better now after my meds were increased) but I have to just get on with it. Everyone is suffering in here because of my illness, not just me. None of us has any life. My DH works 6 or 7 days a week just to try to keep a roof over our heads, my kids don't get enough input and I'm not even fit enough to walk out to the park with them, take them to the cinema, play with them at very much....and we live in a tip that I'm completely embarrassed to let anyone see. But what can I do, there is no option but to carry on as best I can.

Like Belle, some days I feel a bit better than others, but never normal. Those are the days when I can stay up all day, but I still can't do very much, and never enough to make an impact on the mess in here.

stressedHEmum · 15/09/2012 09:51

And the other thing about it is that if I started to give things up I think that I would actually go mad. it's bad enough being in the state that I am, these things give me a raison d'etre and something to get out of bed for. I HATE being ill and it would be too easy to get into a downward spiral so I keep going as a way of keeping going.

Cupawoman · 15/09/2012 10:28

Ladies Thanks to all of you.

Can I ask what, if anything, you all make of the candida argument? In other words, chronic yeast infection? I ask because I've had thrush several times this year and my tongue is currently horrifically white. Recognised nutritionists like Erica White and Barbara Cousins think CFS/Candida interlinked. Has anyone ever tried the anti-candida diet?

stressedHEmum · 15/09/2012 10:41

Cupa, I tried the anti candida things but it was years ago before I was ill. My PIL were a bit off the wall, alternative remedy folk. FIL thought that he could cure my pre-eclampsia with homeopathy, DH's mental illness with radionics and other such stuff. MIL thought that she could cure the boys' AS with Bach Flower remedies and aromatherapy.

After DS3 was born, I had really bad fatigue. I'd had a terrible pregnancy, spent 8 months in hospital on a drip, a difficult birth, was dealing with a completely unstable DH who was in and out of psych hospital and 2 autistic kids. SO I was tired a lot (not like now, though.)

MIL blamed it on candida infection and gave me a diet to follow and a cleaning/washing regime for the house. At the time, I would have tried anything to make me feel a bit more human, so I stuck with it for over 6 months but NOTHING happened. I didn't feel any better at all, didn't have more energy or anything. So I gave it up. In fact, I think all that stressing and thinking about what I could eat/making sure that there was no mould or whatever in the house actually made things worse because it was just another worry.

In saying that I've only ever had thrush once, when I was a teenager, so I don't know that much about it.

fuzzpig · 15/09/2012 10:42

I've read that the candida link has been shown to be false. However if you are getting thrush anyway it can't hurt to try.

Cupawoman · 15/09/2012 11:06

Thanks ladies. Just wondered. If you've read the Sarah Myhill webiste, you'll know she advocates a stoneage diet which seems even stricter than a regular anti-candida diet. Totally at odds with recommendation from the Dietician yesterday who said to eat more sugar. You could go nuts thinking about this.
And no 2 bodies seem to agree or know the best path to follow. Neither wonder little progress is made. Sarah Myhill does put foward a convincing argument though if you have the energy to read through it all. I have tried and sometimes it gets too scientificy for my little brain.

Cupawoman · 15/09/2012 12:17

Any medical doctors out there? Or nutritionists? Anyone willing to offer up some professional advice/opinions?

LongGoneBeforeDaylight · 15/09/2012 12:25

I was diagnosed after about 6 months but I had a very sudden onset.

I'm happy to say after being totally bedbound I am about 90% recovered now :)

Cupawoman · 15/09/2012 12:58

Can I ask what helped your recovery LongGone?

Cupawoman · 15/09/2012 12:59

And how long were you bedbound?

out2lunch · 15/09/2012 14:27

sounds v v similar to my lifestyle stressedhemum

oh for a housework fairy

fuzzpig · 15/09/2012 16:17

I'd like one of them too!

I made it to town so I now have a rather fetching Hmm wrist support thing, but I did a few other errands too such as getting a present for a school birthday party tomorrow. Now waiting for a taxi back as I can't face walking from the supermarket to the bus stop. Realising more each day how messed up I am mentally too, I get so confused and dithery that I can't even make simple decisions (such as the aforementioned birthday gift) so I spend even longer wandering/standing around and now I'm even more tired and sore. A vicious cycle indeed :(

stressedHEmum · 15/09/2012 17:47

I dream of a housework fairy, I might actually be able to see the floor and find some stuff if I had oneSmile

I knitted a square for the Little Hugs project last night and hung some washing out today, so I've been asleep all afternoon and now my hands and feet are on fire and my eyes aren't working properly, and I still haven't made the dinner for the kids. That's what I'm trying to work up the energy and alertness to do next.

Sometimes, I would just really like a few days with no responsibilities and nothing piling up on me.