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Original poster

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:
Original poster
MusicMum18 · 14/09/2015 21:59

If anyone knows anything about candida let me know

OP posts:
Thelushinthepub · 14/09/2015 22:02

I had cfs a few years ago and it lasted about 9 months. I should think it would have to be very serious, or full blown ME to last decades.

I was able to work but that took all my energy. What happens is often you can do something, but it wipes you out after, usually the following day.
The levels of activity which wipe you out can be very low (ie having to spend a day in bed because you changed a duvet cover) I had lots of limb pain and weakness. The tiredness was different to sleepy tiredness- most people experience some sort of insomnia with the illness and there is a school of thought that it may be caused by sleep issues (not being able to get into a deep enough sleep to repair muscle tissue)

You do need to do as much activity as you can- because your muscles aren't being used they become wasted and then it's a vicious circle where you can't use them. It's very difficult to find this balance of activity- for some it might be walking up a flight of stairs, say.

I took amtriptiline, a slow release pain killer for a while until the pain was managed enough for me to push the activity a bit further and build muscles up.
It's a very difficult illness to manage and different for different people. A few people have no choice but to be passive to its affects but that would generally be the minority who are most seriously ill.

futureme · 14/09/2015 22:02

Why wouldnt you believe shes ill? She sounds quite ill. Do you routinely question peoples asthma/cancer/broken leg diagnosis?

lastuseraccount123 · 14/09/2015 22:06

I had this in 20s. It really, really sucked and took me around 2 years to recover. I am often afraid of relapsing.

It can effect your memory and brain too.

Your MIL has my empathy as it sucks to be so ill.

CFSKate · 14/09/2015 22:08

In Norway, two oncologists have found that 66% of ME patients respond to a cancer drug called Rituximab. This drug is also used for rheumatoid arthritis, which is an auto-immune disease, and so it is now thought that ME may also be an auto-immune disease. www.ukrituximabtrial.org/

Prettyinblue · 14/09/2015 22:08

Of course it exsists. It's truly awful. It is very linked to depression, what is a real illness too ( just in case you were unsure).

CrapBag · 14/09/2015 22:08

I've only read your OP so far.

As a sufferer of ME/CFS, I am disgusted with your attitude towards it. How dare you say there are opinions about whether it is a condition or not. That is the kind of attitude we have fought against for years.

And no we are not fucking lazy!

I'm am so so annoyed that there are still people out there who think like you. As if anyone would choose such a horrible and debilitating illness/disability. And yes it is classed as a disability.

Angry Angry Angry

Original poster
MusicMum18 · 14/09/2015 22:11

Futureme I don't know if she's ill from me, or if it's something else eg candida or if it's a combination.

Thanks for your comments thelushinthepub . I'd like to help her do more activity as you suggest even if it's just a little because like you say it will keep her muscles strong. I hope she will recover but she has been ill for over 40 years so it doesn't look likely, unfortunately.

OP posts:
CFSKate · 14/09/2015 22:13

Surely if she has ME it can be managed through medical care?

What do you mean? Right now, if I go to the doctor with ME, there is nothing they can give me. I said that 66% of patients in Norway drug trials get better when they take Rituximab. But doctors can't prescribe it yet, they need to do more trials. So I am desperate for us to get funding to do more, larger, drug trials, so that perhaps one day I will be able to get this drug for myself.

PurpleDaisies · 14/09/2015 22:13

I'm surprised that you can't see how saying soneone has ME is completely different to saying someone claims to have ME.

You seem determined to make anyone who disagrees with you into a bully. I'm not wasting any more energy on you. Have a Biscuit.

Katymac · 14/09/2015 22:14

The WHO has recently reclassified ME/CFS as a physiological condition

I have had it for nearly 20 years - interestingly (considering CFSKate's post) my brother, living in Sweden has (for a similar length of time) been diagnosed with RA & has been treated with Rituximab (or a sister drug) - but they diagnose RA differently in Sweden (they start diagnosis with a stool sample)

Original poster
MusicMum18 · 14/09/2015 22:14

Crapbag maybe you should read my other posts about my mother in law and think about what you are saying. You don't know her at all so are not in a position to talk like that. Maybe you should read what other more well mannered posters have put before you start swearing at me.

OP posts:
fastdaytears · 14/09/2015 22:19

Wow. I don't know why I read that as it was clearly going to be offensive.

Saying that someone "claims" to have an illness is really, really rude. Sorry, but that's not purpledaisies being precious at all.

Suggesting she would feel better after going for a walk is just Shock.

I'm done with pointing this out. I'm not going back through your post as it'll just upset me again. I suspect you've been influenced by your dad and these shirkers he "knows" Confused.

If you don't want her smoking and drinking around your baby then that is totally your decision (and a pretty good one in my book). If she asks for help and you can and want to help her then great. Otherwise I would probably not venture any opinions on her health.

Original poster
MusicMum18 · 14/09/2015 22:20

Just to clarify I have not called all me sufferers lazy! Nowhere have I said this! Thanks again for the useful information but sadly I was hoping this would be interesting for me to try and find out ways to help my mil, it's such a shame that some people are turning this into a slanging match. I have every sympathy with me sufferers and yes I know depression is a medical condition too.

OP posts:
fastdaytears · 14/09/2015 22:20

Sympathy does not come across in your post at all.

sticks2 · 14/09/2015 22:20

My friend's daughter has had cfs for three years. She's 15 and feels her life isn't worth living. She has headaches, dizziness, insomnia, utter exhaustion, difficulty concentrating and heavy, aching limbs. Just a short walk leaves her dropping with tiredness.

Obviously she can't go to school so she has no friends and is lonely and depressed.

There is no cure. She is desperate to lead a 'normal' life. For anyone to suggest that laziness is involved, or repeat what you read in a newspaper is ignorant.

Go to the websites given above and educate yourself.

overthemill · 14/09/2015 22:22

Chronic fatigue syndrome is a serious condition which can be as debilitating as MS or MND. That's from the NICE guidelines. Symptoms are many: pain, severe fatigue, gastric issues, fainting, cognitive impairment, severe post exhertional malaise. It can range from feeling exhausted after doing a bit if housework to being unable to speak after a short visit form the nurse. My dd has it and has been entirely bed bound for 2 years - she cannot walk, talk, say my name ( she knows who I am but can't remember what I'm called), she hasn't been able to go to school or access education for 2 years, she can't eat and has lost 5 stone and is now tube fed. She's really very poorly and I take exception to people who know fuck all suggesting it's not a serious illness. She could die

fastdaytears · 14/09/2015 22:22

I have every sympathy with me sufferers

Your first line suggested that you didn't think this was a condition. So who do you have sympathy with?

CrapBag · 14/09/2015 22:22

". But I'm actually trying to ascertain whether my mil has me or not!!! You don't know if she does or not!!"

Why? Are you a medical professional who is trying to diagnose a patient? If your MIL says she has it, chances are an actual doctor has diagnosed her. It is not the job of a disgruntled DIL, which is absolutely how you are coming across, whether you like it or not!

" " you make it sound like a club and that you're shutting people out from trying to understand. "

Sorry but you absolutely cannot understand it. Sufferers are a sort of club, we get each other and know how it feels, we don't have to explain what it is and get the blank looks, we understand. Someone who hasn't experienced it just cannot get how utterly crappy, exhausting, debilitating, depressing and limiting it is. It's a horrible horrible illness that has robbed me of my adult life. I got it when I was 20, in my first job, just been promoted for the second time. That was 14 years ago. I lost my promotion and had to quit work. I have tried to retrain and return to work but I couldn't.

I'm now in my 30's and utterly on the scrap heap. No one will ever employ me. Not that I have the energy to hold down a job anyway. A huge chunk of my life has been utterly wasted. The only positive thing I have is a very supportive husband and my 2 amazing children. When they are grown up and don't need me, i'll still be sat at home and unless a cure is found, still unable to work and have absolutely nothing positive to do except to clean my house when I can manage it. That is what my life is.

I rarely get upset. I am used to it and have been resigned to this for years. But this has honestly really upset me and that is unusual. I'm usually pretty hard faced and just deal with it.

fastdaytears · 14/09/2015 22:23

overthemill Flowers

CFSKate · 14/09/2015 22:26

[[http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%209%20Issue%201.pdf Our two major areas of research currently revolve around the gut microbiota studies and
the rituximab/B-cell research]]

Original poster
MusicMum18 · 14/09/2015 22:28

Er where have I said it's not a serious illness? Also I would like to point out that I can express myself without swearing.

Sticks2 how do you know my mil is desperate to lead a normal life? You don't know her!!!

For the last time of saying. I don't know if she has me or not. She has diagnosed herself. The doc doesn't know what is the matter. She might have another issue with her health. I am not insulting people with this condition or indeed with any condition.

Seems to me like some people feel very strongly based on their experiences. That's fine but don't rant at me when I'm just trying to find ways to help my mil.

OP posts:
Katymac · 14/09/2015 22:29

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

2nd sentence