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Original poster

M.E. anyone? Experiences and advice please!

36 replies

mynametoday · 14/10/2008 21:31

I was really quite ill a year or so ago and it was thought I had glandular fever but the test was negative (when it eventually came back!). Some abnormal liver results came back though which was presumed to be from long(ish) term anti-depressant use. Since I wasn't feeling too low ('just' ill/shattered) I was taken off them. I honestly don't feel any lower without them (it's been some months now).

I've still felt continually shattered though and generally unwell as well as all I can describe as fuzzy around the edges. I have also put on even more weight as i have found myself eating to try and give myself energy.

I have been pushing myself assuming that it had to be in my head since there wasn't another physical cause (although I am peri-menopausal). I have managed to keep down a (part time) job during all this but sleeping as soon as I get home before getting my dc and then sleeping as soon as they are again.

My gp now thinks I have ME and has referred me to an ME/CFS clinic.

ME is quite rare though isn't it? Surely I can't have it. I havent got a choice but to keep going.

Thank you in advance for any advice. x

OP posts:
fourlittlefeet · 14/10/2008 21:35

are your iron levels/ diet ok? Do you get regular exercise? Do you get time to yourself/yoga/walks for a break? Are you sleeping ok? I'd see if there is anything in your physical/mental health that you are doing differently or can adjust yourself as well as going the medical route. ME is really tricky.

fourlittlefeet · 14/10/2008 21:35

are your iron levels/ diet ok? Do you get regular exercise? Do you get time to yourself/yoga/walks for a break? Are you sleeping ok? I'd see if there is anything in your physical/mental health that you are doing differently or can adjust yourself as well as going the medical route. ME is really tricky.

zazen · 14/10/2008 21:46

I got ME from glandular fever. Tis very common to get ME from it unfortunately.
you might want to buy this doctor Joe Fitzgibbon's books - he's very good here

Other people swear by this guy Phil Parker and the lightning process.

I had ME for 8 years, and had a slight relapse when I had DD. I try and take things as easy as I can - not easy when you're working F/t with a DD, but I lie down when I can.

I hope you are OK.

nooOOOoonki · 14/10/2008 21:47

Oh poor you

You may not have ME (have you been tested for thyroid problems/Coleiac/wheat intolerance and more)

these all present with similar symptoms.

I have ME (just beginning to accept that it has reappeared) I had it for 2 years before kids, go a lot better with pregnancies but has come back.

I'm sorry to say but glandular fever and ME are v closely linked.

look at the action for ME website, they are informative, but don't get worried about the amount of time people have had it, it can vary massively.

I'm afraid it isn't that rare, and it is real, ie not 'yuppie flu' as used to be thought -

what are your symptoms?

x

PhantomOfTheChocolateCake · 14/10/2008 21:47

here you go

KatyMac · 14/10/2008 21:49

I have been much better since I cut lots of artificials out of my diet

I also have learnt the hard way to listen to my body & rest when I need to

Original poster
mynametoday · 14/10/2008 21:50

My irons levels are fine, so's my thyroid. I do try and push myself to go for a walk when I can (and purposely park 5 mins walk from work) but if I go for a 'proper' walk i'm knocked out for a couple of days (I have tried). I do now get time to myself, around 2 hrs each day (Monday to Friday) and generally i'll fall asleep within minutes of sitting down. I really do push myself as much as I can though and always take the kids somewhere over the weekend at least.

My diet is pretty good. I avoid processed/sugary/salty/fatty foods as much as I can and have no caffiene after midday. I also take a multi-vitamin. I have really tried to feel ok.

Sleeping ok is a tricky one. One of my children doesn't sleep well but never has so it's not new. I also get a fair few nightmares but again I have done for quite some time.

OP posts:
Original poster
mynametoday · 14/10/2008 21:53

I crossed posts with all but 4littlefeet!

It wasn't GF though, the test was negative!

I've not been tested for food intolerances, can the gp do this? I've got to back in a fortnight anyway so I can ask if that's the case.

Thank you x

OP posts:
Original poster
mynametoday · 14/10/2008 21:57

My symptoms are feeling ill mostly! and being shattered! I mean really shattered - sometimes I literally can't even speak. My glands were up for months (hence GF was thought of), my ibs is playing up, I keep bumping into things, night sweats (although this could be hormonal obvs). This along just not feeling quite with it (my memory's not great either but that's probably just motherhood!).

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nooOOOoonki · 14/10/2008 21:59

do you get very emotionally and have a draining feeling?

nooOOOoonki · 14/10/2008 22:02

As for food intolerances, the tests are really ropey. the very best way is to stop eating that particular food least 5 days.

Not even a molecule of it.

then eat it on the sixth day and see if you react (bloating/tiredness/fatigue/rashes etc)

do it in groups ie dairy /gluten/ citric etc

KatyMac · 14/10/2008 22:05

If your IBS is bad check your 'normal' foods for artificial sweetners - they make mine terrible (& I have found them in choc, bread, soup, biscuits)

PhantomOfTheChocolateCake · 14/10/2008 22:19

Coffee is a problem for me and fried chips.

Original poster
mynametoday · 14/10/2008 22:23

I'll try that with the foods, i've always known bread, pasta and cous cous makes me extra bloated so just avoid them.

My ibs isn't terrible but is playing up. I'm getting more bloated, having more cramps and runs than usual. I was diagnosed 15 yrs ago so it's definitely not new.

And yes, very emotional and drained, regularly.

OP posts:
Original poster
mynametoday · 16/10/2008 20:15

Well i've cut out all wheat for 2 days now (and yes, it's in everything!) and I actually feel worse. I have been so fuzzy today, work was really hard. I had a nap when I got back but i'll be in bed as soon as my dc allow.

OP posts:
zazen · 16/10/2008 22:20

Sorry to hear you're feeling so fatigued.
Have a look at this and read the intro - if you can!
www.joefitzgibbon.ie/fatigue.htm This guy is medical doctor/ GP who's wife got CFS and he now specialises in treating it. he's written a book which goes through all possible causes and makes brilliant suggestions for treating it.

Being so tired you cannot speak is a classic of mine also, when I was really bad, I used to forget the words and how to say them

hope you're feeling better soon.

Original poster
mynametoday · 22/10/2008 20:40

Thanks for the link and info, I do appreciate it. I'm going to see if I can order that book from my library.

I've not had a great week, i'm starting to wonder if I really should be working. My job doesn't allow me to have bad days. No one knows. I keep trying to kid myself that no one's noticed when I absolutely lose concerntration. Not sure. x

OP posts:
tiredsville · 24/10/2008 18:26

When you originally got tested for galndular fever, were you tested a couple of months after? Reason I ask it can take a few months for a postive EBV result to show.

chocaholic73 · 26/10/2008 10:32

If you do have ME, pushing yourself like you seem to be doing is the worst thing you can do. You can get into a pattern of "boom and bust" which tends to make things worse. You really need to pace your activities with plenty of rest which I know is very difficult with working and having children. There is plenty of information on the internet. Bear in mind that the medical profession are only just beginning to accept that ME is not psychological and many still dont believe it exists.

Original poster
mynametoday · 30/10/2008 17:17

No they didn't retest. Would it show up now?

I think i've just done the boom and bust this week. My dc have been away for half term so I met up with some friends at the start of the week (and went to bed later than usual), I am completely and utterly exhausted now. I just can't keep with it and can only think to do this now as i've just had a 3 hr nap. Crazy.

I am going to try really pacing myself as I can't afford to feel like I do!

Thanks x

OP posts:
Original poster
mynametoday · 30/10/2008 17:26

Oh nad do you know if loss of night vision is common with ME? I've tried googling but can't easily find anything. Over the past few months mine has really deteriated. I've had my eyes checked and they said it was fine. The other night (out meeting with a friend!) I got lost as I literally couldn't see properly, it was mega scary.

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tiredsville · 31/10/2008 15:32

If I was you, I would retest for GF. Your symptoms are identical to mine, along with the blurred vision! I suffered for 2 and half months before getting a positive EBV result which showed recent infection. You seriously have to pace yourself no matter how boring and depressing it is. I have never slept so much in my life. After 9 months, I am still not 100% and basically have to be careful not to relapse.

tiredsville · 31/10/2008 15:32

If I was you, I would retest for GF. Your symptoms are identical to mine, along with the blurred vision! I suffered for 2 and half months before getting a positive EBV result which showed recent infection. You seriously have to pace yourself no matter how boring and depressing it is. I have never slept so much in my life. After 9 months, I am still not 100% and basically have to be careful not to relapse.

noonki · 31/10/2008 15:55

mynametoday - does sound more and more like ME - I've just been referred to a clinic too (though in next burrough so dependent on primart trust funding~)!

The boom and bust is so true, also alcohol is a killer for me

have you tried the action for me website they are pretty helpful

THe hardest bit for me at the beginning was accepting that it might be a long-term recovery thinking weeks not days, let us know how the clinic goes!

Original poster
mynametoday · 01/11/2008 20:25

I've got another appointment with my gp this week so will ask her about retesting. I will talk to her about working too - i'm very very torn about continuing. I need to work but not at any price.

I will look at that website. I am starting to get my head around the fact that I might well have ME, it's scary though. I know it's not cancer or anything as serious but it's still not good.

Thanks again x

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