ME is just having young kids(78 Posts)
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?
Who was the senior doctor? Can you get a second opinion? Have you been examined for MH issues or just physical ones?
Referral to a cfs clinic if they still exist in your area?
Did you complete a load of questionnaires about sleep /fatigue/pain/depression?
What was this 'senior doctor'?
Sympathies - its a pig of an illness, but having a diagnosis doesn't mean any treatment and often means other stuff gets overlooked or put down to cfs.
Do you think you do have ME? If so get a second opinion.
Don't be annoyed though. I would much rather be fatigued from 2 small children and work than having ME because the first means you will get better.
Your extreme fatigue could be a way of your body dealing with the stress of children and work
Astoria I've had antidepressants, different brands and gone up doses, come off them cold turkey, literally no difference in symptoms
I don't feel depressed
Agree with the others ME is a diagnosis of exclusion. For example I was under diagnosis for years & was told I had ME. Then some bright spark at the GP got me a referal and actually it was undiagnosed minor coeliac disease because apparently minor instances can't be diagnosed easily.
I think there's 'something', I don't know if it's ME or not but I'm not right
Tonnes of people work and have kids, I'm on the single parents thread, there's hundreds of woman just on there
But I am life-fuckingly tired. And sore. And some days my brain is soup, I can't think or focus on anything
It's beyond any tired I've ever felt before, even with newborns
Boote there is no cfs/me clinic in this area, it closed last August and the next county over won't accept out of area referrals
No advice re ME but I have fatigue and pain caused by ehlers -danios hypermobility might be worth looking at that as I was only diagnosed after several years by rheumatologist. Hope you get an answer soon.
Many people who have depression don't feel sad etc. For some of us it manifests in physical symptoms - for instance I lose my appetite, get palpitations or even start laughing inappropriately.
So they took your symptoms seriously, until they learned that you are really busy? And to what exactly do they attribute the pain? I would definitely get a second opinion.
What did you want from the diagnosis?
Ive got ME, I'm housebound on some days, really poor mobility on others. Couldn't consider working.
I've been seeing a psychologist, but been told that for me, there's nothing they can actually do, as such.
You could have very mild ME, which if ADs haven't helped, then you'd have to manage the symptoms and take painkillers.
I'd consider it a good diagnosis, tbh.
All over joint pain, could be something else.
People who have no personal experience of ME think it is possible to confuse ME with other conditions, such as being a parent to small children. ME is not in any way comparable. It is mind numbing exhaustion, brain-fog, exhaustion which is completely unrelieved by even enormous amounts of sleep, and an extreme and disproportionate response to even the smallest exertion.
Having a doctor treat you like this is one of the most terrible things that happens to people suffering with ME. Doctors hate ME because they can't treat it, so they don't like to admit it exists (though fortunately this is changing).
I am so sorry, OP, that in addition to being so ill, you were subjected to this kind of insensitive and damaging remark.
Although, as Astoria said, if you haven't ruled out celiac disease, that might be an idea (although in a year of testing, am guessing you have!).
I have ME. I'm too ill to work. I only had one child because I was too poorly after the first. When I am bad, I am literally am physically unable to move. I'm not just bone tired, my body runs out of energy. I have to collapse onto the floor. I'm unable to move or speak. My eyes roll backwards. When dd was 3, I put her in nursery 3 days a week. I have months of my life I cannot remember because I was so ill and confined to the sofa (crawled downstairs). A friend took care of us for most of the other 2 days dd wasn't at nursery. I have a relatively severe case and have improved over the years.
I'm not sure you have ME yet as it sounds as though you are able to keep going. If you don't stop, you may get ME as your body says "fuck this, you're still not listening". Then you will be incapable of carrying on. Mine started with earth shattering tiredness perhaps similar to what you described.
I have chronic all over body pain. Muscle spasms etc.
You need to look into pacing and spoon theory. Reduce what you do to a minimum. Cut everything back to the bone.
Birds it isn't a diagnosis, they've said 'you've got nothing, it's normal to be tired with kids, go away'
I meant to say, if this is the beginning of ME, you need to act fast.
clara thank you.
I feel like I'm going mad, trying to explain that yes I know everyone's tired but this is just something else
I think I would feel profoundly as if I had not been taken seriously at all if I was in your situation and received that diagnosis.
FGS you yourself would know if you were just tired from working and having kids.
Wow, that letter is incredibly dismissive of your symptoms.
I feel you - I got told "we all fall asleep in front of the TV in the evening" and "go and sit in the sunshine."
People who have no personal experience of ME think it is possible to confuse ME with other conditions, such as being a parent to small children. ME is not in any way comparable.
I imagine it is similar to the experience of people comparing their morning sickness with my HG.
Mummy I have no partner or family, my friends live miles away and can't/don't help, it's literally just me and the kids
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?
Today I did the school run, went to bed, got up and picked them up again. They're on the PlayStation now because I'm lying on the sofa
I'll feed them, put them to bed and go to bed myself at 7ish
That's not normal is it?
Some Drs are still in denial about CFS , my DD has coeliac and CFS and the paediatrician that we used to see for the coeliacs told her she needed to pull herself together and stop being a burden to me ( her mother) , needless to say we didn't go back for any further appts . That said my DD has been wheelchair bound at times and needing pretty much ft care and there's no way I can invisage her holding down a job or looking after anyone with her CFS as it is .
Have you been checked for Lyme disease? Your symptoms sound similar.
"""ME is not in any way comparable. It is mind numbing exhaustion, brain-fog, exhaustion which is completely unrelieved by even enormous amounts of sleep, and an extreme and disproportionate response to even the smallest exertion."""
Yes it is, so if the OP is working and running a home, with children in it and after assessment, hasn't got M.E, then there must be another cause.
""Birds it isn't a diagnosis, they've said 'you've got nothing, it's normal to be tired with kids, go away'""
But is that after going through a proper M.E assessment?
Also what did you want from a M.E diagnosis?
Surely it's now for you to go back to the GP with the pain issue.
Have you tried the self help stuff for M.E?
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