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Chronic fatigue syndrome/ME

129 replies

MusicMum18 · 11/09/2015 19:49

Hi
Just wondering if anyone knows anything about this? I've looked on the net and there seems to be opinions about whether it is a condition or not. My mother in law claims to have it.
She hasn't worked for about 40 years, often cancels attending family dos saying she's too ill. She never leaves the house and spends her time sitting in, staying in her dressing gown all day, smoking and drinking.
I have suggested she might feel better after going for a walk, but she just says it won't help. She doesn't do the grocery shop, and I feel sorry for my father in law who still can't retire, does all the shopping etc.
last time I saw her she seemed very forgetful and asked me the same questions over and over again. I didn't trust her to hold my lo.
I wasn't sure if she was drunk, or if it was to do with her illness.
I'm not sure if she's using this illness as an excuse to be lazy? I have always found her to be very conscious of keeping up appearances of being a close family but my poor dh has been upset by her lack of contact, and of the fact that she doesn't seem to take care of herself. She recently hurt her ankle and didn't bother seeing the doc. She couldn't be bothered.
I find it all very strange.
Surely if she has ME it can be managed through medical care?
I'm just curious as I've always found her very strange...

OP posts:
fastdaytears · 14/09/2015 22:30

You're not finding ways to help your mother in law. You're being quite unpleasant about her and at the same time suggesting that a condition that has genuinely ruined people's lives (maybe go back and read overthemill's post) may not be a real thing. That will upset people?

Well done you for not swearing. This is MN and if people want to swear they will. It could not be any less of your business.

fastdaytears · 14/09/2015 22:31

Oh Katy she never said that. Naughty internet is changing her words. She has loads of sympathy and just wants to help.

Coolforthesummer · 14/09/2015 22:32

God op your attitude stinks. In your op you sound naive but your subsequent posts are nasty.

Where on earth have you got the idea from that people with ME are lazy? (apart from your father.). A close relative of mine has CFS related to an auto-immune disease she has been diagnosed with. Fortunately I have never heard this view expressed.

CrapBag · 14/09/2015 22:35

I have read your other posts and I don't need to think about what I am saying. I absolutely stand by it. You come across as patronising to your MIL and like someone who hasn't got the first clue about ME/CFS. If you really want to educate yourself, look at the ME Association or Action for ME, not crap written by journalists who haven't the first clue about the condition.

You aren't interested. You just want to argue with people. You come across as rude and defensive and you basically axcusi g your MIL of being a liar. I am not the only poster who has taken exception with you yet you refuse to see it.

You are actually draining me right now.

MusicMum18 · 14/09/2015 22:35

Crapbag I am sorry you are upset. It sounds as if you've had a tough time. But i am offended when I am told that I cannot understand it, saying that is patronising. Who are you to say I can't understand. Learning about things is how we understand. Maybe if more people did that there would be more support for me.

Make no negative assumptions about me as a dil if I didn't care I wouldn't have posted in the first place.

CFSKate thanks very much for those links I will look at them.

Going to bed now so I won't be replying to any other unnecessarily angry people. Night night all.

OP posts:
WeatherWatchingWitch · 14/09/2015 22:36

I had post-viral fatigue in my late twenties after getting glandular fever. It was horrendous. The best way of describing it is to say I felt like I had been put into someone else's body and it wouldn't do what it was told.

Long story short I recovered after six months. I was off work for three months, joined WW, lost 2 stone, ate very healthily and went for a short walk EVERY SINGLE DAY regardless of how I felt. I feel very fortunate that it lifted and did not turn into ME / CFS. It would be utterly debilitating.

And the snide insinuations about mental health are very upsetting. I was extremely fortunate that by chance I saw a wonderful, kindly GP who really went the extra mile. My life was brilliant when I happened to get glandular fever - a good job, my own home, lots of friends and hobbies, dating my now husband. If anyone had told me it was all in my mind and I was depressed I would have punched them in the face. However if there were no signs of it lifting it would be perfectly normal to become depressed. It's like your life has been snatched away.

I still get short flare ups when I'm run down so I don't take it for granted that it's gone for good.

MusicMum18 · 14/09/2015 22:38

Crapbag. Whatever. Have you met my mil? Have you met me, you seem to know the answers to everything! Why don't you diagnose my mil if you know so much?

OP posts:
fastdaytears · 14/09/2015 22:38

I am unecessarily angry! Amazing.

Well I've got into this now. I think I'll start some threads about illnesses that my dad told me aren't real.

MusicMum18 · 14/09/2015 22:39

Goodnight. Thanks for being no help at all Crapbag.

OP posts:
fastdaytears · 14/09/2015 22:39

Well presumably Crapbag won't be diagnosing your MiL as neither your nor she seem to be doctors and your MiL hasn't asked either of you to guess.

Do you normally get this involved in other people's health?

CrapBag · 14/09/2015 22:40

Good for you that you can post without swearing. I however choose to swear on here and will continue to do so.

If you had put in your OP that your MIL had diagnosed herself and that the doctor doesn't know what the matter is and left out all the crap about how some people think we are lazy and that there opinions about whether it's real, you would have received very different responses. But I suspect you don't actually care.

CrapBag · 14/09/2015 22:41

Whatever OP. I'm hiding the thread. Glad I could be no help on actually educating you on something you know nothing about.

fastdaytears · 14/09/2015 22:42

Yes you actually could try NCing and coming back with that version of events and cut out all the offensive stuff, you know try not to sound so cunty, and actually people probably would help. Just at the moment you sound like the worst DM journalist but without their crappy proof readers.

Yes I will swear on MN, thanks.

MusicMum18 · 14/09/2015 22:59

Well it's up to you if you swear or not it makes no odds to me. I choose not to.

I've reread all my posts and have not said anything untoward. I have merely stated other peoples opinions about me which I questioned.

For the record, and you'll prob gloss over this bit some of you so I'll type in bold: I AM AWARE THAT PEOPLE SUFFER FROM ME AND THAT IT IS A CONDITION. At no point did I say whether my mil self diagnosed or doc diagnosed. I wasn't aware that was such an important factor. Crapbag maybe you shouldn't have assumed.

Ultimately, only individuals know how they feel and it is not for anyone on this thread, including me to say if they are ill or not. Only that person knows. People also can lie about being ill. Fact. They do. But a lot of others really really suffer as can be seen here. I have just stated some facts about someone I know. Of course I don't know the full story. My posts are all me asking for info which some helpful people have provided. That's all folks, if people want to carry on an argument where there isn't one please continue to nit pick with my posts below.......

OP posts:
overthemill · 14/09/2015 23:06

Well done all, went away to do my dds meds by NG and come back to a bunfight! Apologies if it was my 'fuck' that offended the OP ( well not that sorry actually). Am so fed up with people suggesting my dd 'could do more if she wanted to' - from SIL who is a GP! My beautiful talented amazing dd has had her life stolen by this illness. She isnt lazy. She wants to try to set up a group for people like her who are stuck in bed but of course has no energy to do it. She doesn't have an eating disorder - she has an autoimmune physiological illness that the bastards that fund research a rent doing enough to fund. Meanwhile my dd is 'too ill for hospital' and we struggle on at home after being discharged from nursing home as there was insufficient progress in 17 weeks. It's a chronic illness OP. God I hate people like you. Judgemental bastards . Please don't come back

MusicMum18 · 14/09/2015 23:08

Finally, this comment I made...

I've looked on the net and there seems to be opinions about whether it is a condition or not. "

There are opinions about this on the net. If you look online you will see. I don't have an opinion myself about it at the moment as I am finding out about it. I am not saying that any opinion is right or wrong as I am not in a position to do so as I have no experience of me.

I am just trying to help my mil but I don't give 2 hoots what you think Crapbag and fast day

OP posts:
MusicMum18 · 14/09/2015 23:12

How ridiculous overthemill!! Did I say your daughter was lazy? It sounds like she has had a terrible time. I'm not judging, for the millionth time in saying, I know me exists I'm just not sure if my mil has it!!!!!

It sounds like you are understandably very sensitive about your daughter but don't take it out on me please.

OP posts:
overthemill · 14/09/2015 23:13

The World Health Organisation, NICE and at the very least the USA Australian, New Zealand and Canada recognise it as a Neurological condition. It is physiological and it is a real condition. Just because not much is known about it doesn't mean there is debate about whether it is a condition or not. NICE has guidelines for care for people with CFS/ME. They wouldn't if they didn't think it existed would they? I suspect you are looking at very old outdated info - the internet doesn't delete crap that's out of date. MS was treated in the same way until more money was put into research and the disbelief went away. IT IS REAL. Now please stand by your threat and stop coming back

overthemill · 14/09/2015 23:14

didn't accuse you , said fed up with 'people' but if the cap fits...

MusicMum18 · 14/09/2015 23:21

Er I haven't said it's not a real condition. I'm no expert (oh I think I said that before too!!!) Once more of saying it........IM JUST NOT SURE MY MIL HAS ME OR ANOTHER ILLNESS

That's what this post is about. Not slagging off all me sufferers like you seem to think I am.

I'm really hurt by your language, your aggressiveness and your overall rudeness. At no point have I been rude, I have simply been trying to find out if my mil has me or another psychological illness. I think I said that before too. Why don't you read posts properly?!!!

That's it. Read into things what you want.
You just want an argument?
You want the last word still?
Have it!

OP posts:
KatharineClifton · 14/09/2015 23:45

I have simply been trying to find out if my mil has me or another psychological illness.

Well, you can't. You aren't trained to do so.

RockinHippy · 14/09/2015 23:48

Claims to have it, doesn't mean that she does have it - it doesn't mean that she's making it up either, sadly for many of us it can be a lazy arsed doctor misdiagnosis, or "waste basket diagnosis"

This can often lead to mistrust of the medical profession & reluctance to go to see a GP with anything you can diagnose manage yourself, why would you want to go & see a doctor who has already made you feel small for pushing to get a diagnosis & regain the life that has been ripped out from under you

All of what you describe with your MIL is common with M.E. - if your battery is flat, it's flat, there is sod all you can do about it but save those spoons & recharge that battery for another time. - Google "the spoon theory" for a better understanding of that.

That said, I agree with the others that think smoking & drinking sounds odd, it's more usual for sufferers to be intolerant of alcohol, plus you wake with a hangover every day anyway, so why risk a worse one by drinking.

It may well be that she actually has something else that the doctor has missed & they've made her feel like a hypochondriac for chasing a true diagnosis, so she's given up, she may have been made to feel that she is depressed or suffering a mental disorder & the more she protests, the more she convinces the doctor that she has MH problems, or she may just trust doctors to get it right, so accepts M.E. as a given.

A whole list of scenarios, none of which are uncommon, but lead your MIL & others like her to where she is now.

If you want to help her, find out if she has been checked for pernicious anaemia, see the chart I add below - new 2014 guidelines suggest that tests are unreliable & patients scoring highly should be given B12 treatment if they score highly with symptoms - I'm reading that many M.E. Suffered respond well to B12/pernicious anaemia treatment.

Also look into POTs - POTSUK is a good website for info - print off the "Active Stand test" that you will find on there & insist her surgery do it, make sure they do it properly though - I'm reading that up to 30% of M.E./CFS patients actually have POTs (postural orthostatic tachycardia) - (POTs is a symptom of B12 deficiency too) - if my surgery are anything to go by, I suspect that could be higher as it took them 3 goes to get the test right.

Also look into EHLers Danlos Syndrome - POTs is a symptom of this too

My Fibromyalgia & M.E. Diagnosis was wrong - it's taken 12 years & my daughter diagnosis for them to realise that I actually have Ehlers Danlos & POts as a symptom of that - POts can be helped with medication & it can make a big difference. They now realise I also have pernicious anaemia, which is linked & rife in my family

Chronic fatigue syndrome/ME
stareatthetvscreen · 14/09/2015 23:59

This reply has been deleted

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MusicMum18 · 15/09/2015 00:04

Thank you so much rock in hippy that's all really helpful, I am looking forward to understanding more about it all I will find out if she had had those checks . Thank you thank you thank you!!!!!!!

OP posts:
Prettyinblue · 15/09/2015 07:06

Rock, I agree that misdiagnosis is a possibility. In fact the two people I know with EDS were misdiagnosed for years. But just to note when I had ME I drank as it temporarily helped my symptoms.