ME is just having young kids

[OhHolyFuck]

So have been having blood tests and investigations for chronic fatigue and pain for over a year, have had doctors say it's in all likelihood ME and to adapt my life as such

Went to a senior doctor last week for what was assumed to be the final 'sign off' and he asked lots of questions about my lifestyle - did I have kids, did I work, did I have support, was I depressed etc

A letter has come through today saying that actually I don't have ME and my life ruining fatigue is 'just' having 2 small kids and working

I am so annoyed - does anyone know what to do from here?

Did they rule out hypothyroidism, OP? It's awful to be
left in no mans land without a diagnosis.

I have ME, it's soul destroying - my life has ended as I knew it.
@Mummyoflittledragon describes it better than I could.

I dare say there are STILL some older doctors out there too who don't 'believe in' ME. My stepdad, who was a GP his whole life, retired now for about five years, still dismisses it and says it doesn't exist/is all in the mind/lack of moral fibre/ etc. I have a friend who had it terribly for years. She said the amount of scepticism she had to deal with was almost as bad as having ME.

current spoony thread

""It's not that I want to keep doing things, it's that I have to. I'm too tired to cook dinner for them tonight but what's the alternative?""

""That's not normal, is it?""

But it's not M.E, that would be not able to cook and get a take-away. My DD has even had to answer the door because I'm unable to.

You can't push yourself, if my house was on fire, there'd be days that I'd have to die in it, if I couldn't crawl out in time.

I was a LP, with three, working full time, so I've had to push myself, on occasion. But now I can't. There's no "I have to".

The people I meet in clinic etc have had to give up work, get support from SS.

juneau your stepdad can go to the conference
investinme.eu/Documents/IIMEC12/IIMEC12%20Agenda%20V08.pdf

Really what tells you if you have M.E is whether you have post-exertional malaise. It's a very specific symptom where 24-48 hours after you exert yourself, you either feel dreadful or your energy crashes. For some people sitting up, eating, showering, etc is enough to cause it. For milder cases it's maybe going for a walk, or overdoing it at work.

Fatigue is caused generally by lots of things and it's so important to get the diagnosis right. Fatigue caused by depression can be helped by mild exercise. If you have M.E, exercise can make you drastically more unwell and for some people it causes them to become severely ill.

Op i can empathise. I can only say i think the majority of people with M.E have had a similar experience. It's appalling. There are some doctors who are compassionate about it but they can feel rather few and far between.

If you google the ME trust, there is a doctor called Dr Paul (Worthy I believe) who has treated patients for 25 years. He obviously can't cure people because there isn't the research there yet but he seems very friendly and he can properly diagnose you and give you a good shot at managing this. He does phone consultations mostly bcecause most people with M.E struggle to get out to him. The M.E association can give you more information if you struggle to track him down.

I can't stress enough how much you must rest if you're newly ill. Don't push through or overdo it however tempting that is. Also have a look at #MEaction, The OMF and Ron Davis. There is lots of good research going on and lots of hope. There will hopefully be treatment options in the next couple of years.

Birds I can't afford a takeaway, I am over my overdraft
And there is some "have to" - have to take them to school because there is no one else to and they're too little to go alone, I have to work because I have to pay rent and bills
Love my job but cry all the way there because I am too damn tired to work but there is no choice, I need money coming in

Birdsgottaf1y I think if you are quite high up, say at about 70, on that scale I posted, you maybe can do quite a lot and seem to be getting by, but it is costing you so dearly. What looks like not doing much, just part time work, very laid back about housework, to an outsider, is for the patient struggling at their very limits.

But it's not M.E, that would be not able to cook and get a take-away. My DD has even had to answer the door because I'm unable to.

It depends on the severity. I have moderate M.E. It is still life-shattering and I am very ill but I can cook (a little! Mostly as a one off) and I can get to the door. I can drive and I leave the house usually twice a week although deal with a lot of payback from that. There are lots of variations within this one illness. just because someone can do a fair amount, doesn't mean they don't have M.E. Althouh, push for long enough and you risk a fairly catastrophic collapse in your health

People on the downward slope, for lack of a better word, with ME can push themselves to do some things, and then they pay for it with post-exertional exhaustion. Often the condition will get worse, so people have periods of not being able to do anything at all. When my daughter was at her worst, she couldn't watch a simple show on TV or brush her own hair. Just because the OP can still do a few things, it doesn't mean she isn't suffering with ME, just that it isn't at its absolute worst at the moment.

No one wants to have a diagnosis of ME, but worse than such a heart-breaking diagnosis is feeling unbelievably ill and being told that you are just "tired".

Good comments Birdsgottafly. "If my house was on fire, there'd be days that I'd have to die in it, if I could t crawl out in time." "There is no 'I have to'".

In response to your comment to me. No it isn't normal. I feel for you. I am married so I have dh. I can only reiterate that if this is the start of ME, you won't have a choice because your body won't let you. I don't know how old your kids are. It is surprising sometimes if you ask for help from other people, even from time to time, they will give you some space - play dates etc.

Batch cooking is my friend. I don't cook every day even now. When I was really ill, dd ate lots of eggs and lots and lots of brown food. Dh made his own food and I drove to McDonald's a lot - mainly for me but sometimes I took dd there twice in a week because I could just about drive there but couldn't stand up long enough to cook. These days, I do spag Bol, a joint of beef and recook the slices the next day, do a load of potatoes and reheat and top up on veg - I cook veg fresh as it's really important. Anything that's easy peasy tbh.

Reduce your sugar. Up your salt intake drastically. It helps. Loads. Think unbleached salt, not table salt (sea salt/Himalayan). Drink marmite if you like it. Do not drink caffeine. I am gluten and dairy free. When I am worse, I drink cans of Coke (this is my only caffeine) as I find this is the only way to hydrate my body. When I am feeling better, I can eat a low carb, high fat diet. This suits me. I eat meat for breakfast with veg and salt. When I'm really bad, I run on sugar so the complete opposite. Diet is key. I'm not saying what I do will work for you. But something to bear in mind.

CFSKate I scored between 30-40 on that scale you posted. I have a several diagnoses that cause fatigue such as fibromyalgia, chronic pain, Hasimotos etc and they now say probably CFS as well. How do the doctors differentiate between the fatigue causes? Any or all of my above can cause fatigue? Should I push for CFS diagnosis knowing that the fatigue can't be treated anyway? I pace myself as much as possible but am housebound and work from home 2-3 hours per day and struggle to to much else.

Try asking for a referral to a rheumatologist and discuss the soreness: they will look for hypermobility and fibromyalgia. There is a LOT of cross over between many of these conditions and it can take time to dig down far enough. The PP suggestion about checking re coeliac is also gold.

If you can afford it, ask for a referral to a private Cfs/ME/Fibro specialist. I did this after being bounced around the NHS with 'is it MS.... er no, in which case go live with it whatever 'it' is'. The specialist I saw was amazing, took more or less one look at me and said no, you're not one of mine. He referred me to a cardio who got a rheumatologist involved and I ended up with a diagnosis of Ehlers Danlos with POTS/Dysautonomia.

It still sucks, I'm still ill, but on the right meds for POTS the fatigue is much better, and at least you know what to read, what strategies to try, and what's happening to you.

Hang in there. It took me over 18 months to get any real answers, I had to be insistent, and I had to change my GP - my new GP is way way better at being willing to look for new avenues to help and far more supportive.

clairethewitch70 The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions.

wizard I'm 29

I disagree that a diagnosis isn't really needed because it's very mild, whatever that means.

I have ME too and having the diagnosis made a huge change in my life. Not because it changed anything about my energy levels. It didn't. But it validated the level of tiredness and the fact it cannot be dealt with the same way that being tired because you have two kids.

Fwiw my tiredness started after I have my second too. I pushed through it for years until I collapsed. I wouldn't advise anyone to do that.

You mentioned soreness. What's sore?

upthread someone mentioned the OMF, thats www.openmedicinefoundation.org/

GreenPeppers

Mine started the day I went on the pill for IVF - for dd. I'd had a few symptoms in my 20's and early 30's which I'd largely ignored. But it got really bad when dd stopped sleeping in the day. I ignored it until this point as well. From that time onwards, I regularly went to bed with dd downstairs by herself aged 3 - door open of course. We had temporarily moved out and were having our house done up. I collapsed in the rubble in front of the workmen I was talking to. That was interesting.... I was baffled and amused at the time. But still I didn't stop until forced to or go to the gp. And no, I wouldn't advise pushing through either.

Renaissance mainly my joints in my hands (so fingers and wrists) and my feet (my toes and my ankles), that's most days in varying degrees of severity
When it's bad, my pelvis and back can be sore too

Ok. How about things like your nose and ears? And yes I know it's a strange question!!!

Oh def go to the spoony thread. I'm not sure why you're getting a hard time, it's not a competition to see who's worse off. I personally think a diagnosis is really helpful, as Green says.

Your doctor seems to have done a supposedly professional version of "oh yeah I get tired too"

I have ME/cfs and there is no way I could manage children and working. I am struggling with children that are at school . We spent more than we could afford on food when they were smaller. My husband often works away - I have regular panics about what I'd do without him as I know the benefits system is weighted against people with ME/cfs and I really couldn't work. I'd be terrified of losing the kids.

Oh the threads moved on a lot since I was reading. Wasn't ttrying to compete - just sharing ME/ cfs related frustrations. I so hope for your sake they find something to diagnose you with - or it is due to the stress of working/small kids on your own (no mean feat!) simply as ME is such a horrid condition to have.