to be exhausted with my friend's Chronic Fatigue Syndrome?

[LemonDifficult]

My friend has been diagnosed with CFS. Over the past 6 months or so she's been struggling with tiredness. She's had blood tests which found nothing, she's looked into herbal medicine and so on. A couple of weeks ago the GP said it's CFS.

During the past few months she has become more and more self absorbed. She is single, she wants to meet someone and have a family and is feeling the pressure as she's in her late 30s. Along with this taking up much of our conversations, she talks constantly about her tiredness, or just other aspects of her life. Almost nothing about me, except on a couple of occasions some bitter digs about how parents are so rude/thoughtless/whatever. I'm sympathetic but beginning to get sick of it. I'm also sad about it because we have been great mates. I try, I really do, but my frustration with her is getting the better of me.

If she was to ask me I'd say I think it's depression or stress by another name with sleepy side-effects, but if I so much as hint at that I get the brush off. In my view, she needs a serious amount of counselling to deal with the trauma of losing both her parents when she was young and various other issues that have come up along the way. She has barely had a proper relationship - the last one was 12 years ago. That the CFS might be in anyway be a MH issue is a non-starter with her.

So AIBU? Is this CFS absolutely out of my friend's hands? And at what point am I allowed to say, 'I've done my duty as a mate and listened to how hard it is not being able to get up until noon. Now I'm fed up with your jellyfish comments about the evils of 'screaming babies' or whatever'?

desertgirl - Unless her friend has expressly asked the ops opinion I think it is crossing a line to be questioning her diagnosis. By the sound of it her friend has accepted it and she will know a lot more about her symptoms/medical history/tests and conversations with her gp than the op.
Of course it is possible that she has been misdiagnosed. It does happen. But it's a big leap to make when you're not even medically trained yourself.

but CFS is what the doctor says when they dont know what is wrong.

anyway what is so wrong with a friend questioning a friend's diagnosis?

if i say to a sporty friend, my knee hurts, i think i have damaged my XXX. she can reply have you thought about it being your YYYY.

Why is this different?

CFS is a specific diagnosis and shouldn't really be used as a "don't know what is wrong". Certainly in a doctor needs to wait 6 months before referring to a specialist and then the consultant is the one that formally diagnoses.

lemon I had CFS for 4 years. It sucks your life blood and drains your very soul. You mull and dwell on everything. It is very linked with depression and is not easy to be around someone who has it. (My DH struggled at times with me).

But please believe her, it is like a living hell. Imagine having that fluey feeling when you're not sure you can even lift your arm to get some water, though you are so thirsty. It is like that sometimes, other times you puch yourself and it is OK. Imagine you have the flu for weeks, months, years and you never know if it will stop. And then imagine no one believes you.

PS acupuncture and a change in diet and graduated exercise worked for me (eventually)

pseudonym, that is a 'should' though, isn't it? it doesn't sound as though that is what has happened here

Panda, she isn't questioning it to the friend, so how is she crossing a line? Not that questioning it to a friend is necessarily crossing anything, but I can't see how wondering about it herself/on the internet can possibly cross a line?

I think some people are confusing conditions diagnosed by exclusion - ibs, cfs etc with doctors just throwing diagnosis at people for the hell of it. If all other possibilities have been excluded then the doctor DOES know she has cfs.

Tilly - How about if you injure your knee and you go to the hospital to have an x-ray and the doctor tells you you've broken your knee but your friend, who isn't a doctor, thinks it's just pain left over from a sports injury you had. That would be quite weird wouldn't it? What if your friend gets sick of you moaning about your knee cos doing some physio exercises would sort it out. But you (and your doctor) know it needs to be in plaster. That is a more accurate comparison to what the op is saying.

It is crossing a line of becoming too involved in someone elses medical business and I don't think the fact that the op's friend has spoken to her about her illness means she has the right, or the expertise to question her diagnosis on here or anywhere else. And I very much doubt that if the op has these conversations with the op for hours on end about her condition that her friend has no inkling that she doubts she has it.

Panda, I don't think that's entirely true in that I don't think it's possible to have excluded ALL other possibilities; nor do I necessarily have the blanket faith in GPs that you appear to (it's very difficult to see doctors as divine when all your younger siblings are medics, too many memories of daftnesses past). THis also suggests that CFS is simply (officially) a default diagnosis; is that actually the case? it certainly often seems to be used that way....

No, I don't think questioning (in your head, or anonymously on the internet) someone else's diagnosis is 'being too involved in their medical business'; in more dramatic cases than this one, people's lives have been saved because someone questioned a diagnosis (if I remember it has even happened on here, in the case of ectopic pregnancies which the doctors had missed). I think it is true there is a time and a place (which may never arise, in a particular situation) for letting the person concerned know what you are thinking - and I don't agree with you that the friend necessarily knows about the OP's doubts; I think that sounds like projection (yes there are people like that... but we don't know that the OP is one of them)

i think in your shoes lemondifficult, i'd take a step back. it may be that she needs a bit of space, and talking about you / your life is too painful a reminder of what she doesn't have.

you sound like you've been a very good friend and it's just getting too much for you. maybe when the time is right you could tell her how you're feeling.

Diagnosis of exclusion test for all other illnesses that have the same symptoms before a diagnosis is given.
I don't have blanket faith in gp's at all. I would always get a second opinion if I felt something wasn't right. As I said mistakes can happen. But when it comes to diagnosing things a gp is going to be right more times out of ten than someone who isn't medically trained.

A syndrome is a set of symptoms that occur together that suggest the presence of some underlying problem iirc, while a condition can be more accurately diagnosed. That I think is why it might be considered a dump diagnosis.

In addition, CBT can be used to help some patients with daily functioning. When there can be multiple physiological and psychological causes and factors that can either prolong or shorten the duration of the malaise, it is reasonable to ask chicken and egg type questions and to try to figure out whether one set of factors is worsening the others.

Panda, but she doesn't seem to have had enough tests to have excluded all other possibilities. The diagnostic criteria are supposed to be:

If she has been treated for depression/stress before then of course the gp would know.

I have some great friends who know a lot about me. I still prefer to seek advice from a doctor when I'm ill though.

Not read all the thread but here is my input:

my friend had ME for years. Yes, it was a bit boring at times- but there was no disputing there was something wrong with her. A few years in I got quite seriously ill myself and was much more incapacitated than she had ever been. In the end I was ok, but it took me about a year to recover from the illness and I had a form of post illness fatigue - for example when I did return to work after 8 months, I went in for 1-2 hrs and had to be picked up at the door and I went straight home to bed and slept for the rest of the afternoon!

We were both late 20s and looking back I cannot believe that my life was like that - now I have 2 kids, I run, I bike, I am on the go all all the time....

So, my ME friend saw all of this and she learned from me. It was easier for me because I had had a very real diagnosable medical condition and had a planned recuperation. She modelled my recuperation (managed to do a couple of hours on unpaid work etc) and got similar results to me. It was a long slow improvement though. Lots and lots of tiny baby steps.

She is fab now - has 2 young kids (something she though she would never have). I am a great believer in fate - maybe I got ill to help her! It is very very difficult to get yourself into the mindset of "not normal". But very difficult to live in that reality....

Well, the conversations have involved the dx a lot, so I think it's not crossing a line - and what line would that be anyway if it's on here and anonymous?

I'm pretty confident that my friend doesn't think I have views one way or the other. The only medical advice I've offered was pre-dx, when no-one she saw was giving much of an opinion, and she'd tell me her symptoms and I'd say 'Look, X, that doesn't sound normal, go back to the doctor and ask them to take you seriously'. I do take her seriously, btw.

Scotgirl, I love your story. And the more I'm thinking about things the more I'm thinking as Warthog says, that my circumstances seem ordinary to me (husband/family) but actually might have an impact on her because we've been friends for so long. So maybe she needs people without children to be around more at the moment. The problem is her longer-term friends are all married with babies, and it's easy-come-easy-go type friends that are single. (And they're going .)

TO CLARIFY: I don't love that you were ill! I love that you got better!

If you're friend hasn't asked you whether you agree with her gp then I think you are crossing a line to be speculating about it amongst your family and on the internet. Also does she have a dx or is it just a suggestion from her gp - the posts aren't really clear?

So you talk a lot about her dx but you you keep your real feelings to yourself. How does that work? Do you just lie or nod or what?

Anyway I'm going to bow out from this thread now. You are obviously confident that starting a 'witty' titled thread about your friends illness and asking strangers whether you should ditch her makes you a fabulous friend.

I can see from the way that you tried to make a poster look like they were making light of cancer when they were pulling you up on your tasteless thread earlier and the fact that you haven't changed the title despite it causing serious offence that there is no way in a month of Sundays that you are going to accept that you are in any way unreasonable about anything ever.

That's silly, Panda -- of course she can speculate. It's human nature. I had my gallbladder out a few years ago after being first misdiagnosed as having an ulcer and then cirrhosis by my doctor. If it hadn't been for the speculation of people I knew things might have got far worse with my stone-filled gallbladder and bile duct.

And asking her if she lies -- overblown.

"It is widely recognised that many people who have ME/CFS were in fact very high achievers/perfectionists beforehand and that their inclination to push themselves to the limits contributed to triggering off their ill health."

Someone up there said this. The fact many people were high achievers means nothing, does it? Many weren't, too.

I can't believe how nasty and vicious some people have been towards the OP. It's obvious that some people make very bad invalids - they are resentful and bitter and take it out on others. Not everyone is like that. The OP's friend seems to be like that, so obviously the OP is suffering at her hands.

I wonder what the friend was like before she was ill. Was she generally intolerant? Did she make an equal effort in the friendship? Was she kind and funny and a good friend or was she demanding and precious?

I assume people speculated to your face though math. And not behind your back on the internet as evidence of your unreasonable moaning.

She was a great mate, lovely, warm, supportive of her friends, funny, up for trying new things.

Unfortunately, gradually she's lost touch with reality in terms of normal social behaviour - being constantly late to places, wildly overbooking then talking excessively about how conflicted she is, picking weird fights with people and so on. If someone invites her to do something nice she accepts and then complains afterwards about how she shouldn't have done it as she now has to sleep it off - but complains as though it was all the fault of the inviter.

SHPP - You surely can't now be advocating that I should be speculating to her face?!

Ynbu op

I agree that friend is self absorbed by her illness and for what ever reason not doing much to help herself

And there is nothing wrong about having a moan about your relationship

You sound supportive to her and sound like your fed up of the constant negativity your friend is in

Op take a break from your friend and then go back to her when your recharged

Not at all but I can see how people who concerned might do that.

People who were concerned and had relevant knowledge/experience that could prevent a potentially life threatening situation I mean.