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?

[AnoiseAnnoysanOyster]

Have you had your thyroid function checked?

[mummytime]

I would really push to make sure everything but ME/CFS is ruled out: thyroid, Coeliacs, vitamin deficiencies, anaemia etc.
Because those things tend to be something that something can be done about!
That older doctor sounds like a dinosaur. If your GP (or another Doctor at your GPs) is sympathetic, then go and see them. This is really old fashioned thinking - and not helpful.

[laurzj82]

OP ME is awful. I am very very very blessed to have recovered after 4 years. Been well since 2011 thankfully.

Get a 2nd opinion and make sure everything else is eliminated. Sorry if I've missed it up thread but do have the post exertional malaise? That seems to be the main characteristic.

Can you afford to see a private OT? I had CBT, physio and OT for mine but for me it was the OT who helped me recover.

[CountryCaterpillar]

Wow cbt/physio and OT sounds amazing! What did they do that helped? I keep feeling like I'm going in circles and not improving.

[unweavedrainbow]

To those people suggesting Ehlers Danlos syndrome, a new set of criteria have come out today which are a lot stricter than those used in the past. To get a diagnosis of hypermobility EDS you now need to have 5 out of 12 of the following (or a family member with them) AND hypermobility AND joint pain:
Soft/velvety skin
Stretchy skin
Unexplained stretch marks
Bilateral piezogenic papules on heels
Recurrent or multiple hernias
Atrophic (abnormal) scarring on at least 2 sites
Unexplained pelvic, rectal or uterine prolapse (in women without children)
Dental crowding
Arachnodactyly
Arm span to hand ration greater than 1.05
Mitral valve prolapse
Aortic root dilation

As you can see it is now much more difficult to get an EDS diagnosis than in the past but a Hypermobility Spectrum Condition (what used to called JHMS/HMS/the milder end of EDS) is a possibility. @OhHolyFuck do you consider yourself double jointed?

[ipswichwitch]

Have you seen a rheumatologist? A lot of what you describe sounds like fibromyalgia to me. It troll me a while to get diagnosed - a gp once said that he got tired too, everyone does , but I'm willing to bet he didn't have to go to bed every night as soon as the kids did, and drive himself crazy with the pain and brain fog. It's not just tired, it's being unable to function properly, or at all.

As the gp for a rheumatology referral, if for no other reason than to get this pain looked at.

[MrsMozart]

OP have you had bloods checked? Specifically: calcium, parathyroid (PTH), and Vit D.

If you haven't, get them done soonest and get the actual numbers.

[limon]

I've been off work for weeks with fatigue and pain. I have been fatigued for years (before kids too) in fits and starts. I am sure I have something low-level but go says I just have a busy life and am burned out.

It is entirely possible to work with ME if you don't have it too severely.

I think a lot of people with low level conditions cope until there is a flare up.

[laurzj82]

It was. I was unbelievably fortunate to have an understanding GP who referred me to the local CFS service. I don't know if it still runs but I'm in Essex.

OT was all about adapting tasks and pacing myself. For example, I was able to work pt (sedentary office job) but found housework very difficult. So it was about finding a routine where I could pace myself by doing short bursts of housework or some sitting down (ironing etc). Scheduling rest times etc. Physio was mainly graded excercise so eventually found a Base line of steps per day I could do without me getting the post exertional malaise and then increasing by tiny increments each couple of weeks. CBT for mindfulness ( stress makes it so much worse) and learning to say no to things etc

I think there's a book called overcoming chronic fatigue that explains some of the techniques.

[user123346]

Where is your pain? Have you looked into Fibromyalgia? As the fatigue is the same as in cfs. Google "fibromyalgia points" and see if your pain is near any of the points. When I was diagnosed over ten years ago, doctors thought cfs/fibromyalgia was all in the head. I even got I must be depressed. I actually had to diagnose myself. When I took my research back to the GP and pointed out how my symptoms matched, he finally took me seriously. I then found a professor of Immunology on google as he wrote a research paper on fibromyalgia and so I went to him for a diagnosis. Prior to that I went to a Rheumatologist who passed me off ( complete waste of time).

So I highly reccomend google reccomendations for doctors in cfs or Fibromyalgia ( if you have pain in the points).

[Dogblep]

Why have the criteria for EDS changed so dramatically? I have a diagnosis of EDS but won't qualify under that list.

I have velvety skin, spreading atrophic scarring, am extremely hypermobile and get dreadful pain. I have unexplained stretch marks too. Gut pain as well and a history of dislocations and subluxations which don't seem to feature on the list. I also have POTS. Do i 'just' have HMS now?

[WayfaringStranger]

Dog EDS was being overdiagnosed. Also, they are trying to identify the gene. Your diagnosis won't change unless you go back to a doctor for a review. Part of the issue is that HMS which is now called HSD (Hypermobility spectrum disorder) was being pushed as something as lesser whereas it isn't that at all.

[goodnessidontknow]

@Unweavedrainbow, can you please link to the new criteria? I've been trying to find them but can't. Thanks!

[WayfaringStranger]

The new criteria will be on here by the end of the day: ehlers-danlos.com/

There was a webinar at lunchtime today.

[goodnessidontknow]

Thanks 😀

[RhodaBorrocks]

As another EDS zebra I'm thrilled about the new criteria, because it's the first official validation I've had that my rarer type is a form of EDS. Previously only very experienced professionals knew about the type I have and it wasn't officially recognised in the nosology.

OP, you've had some really good advice here. I was initially diagnosed with ME/CFS before getting an EDS diagnosis 5 years later. I also have fibromyalgia and thyroid issues and it took a long time before I found a GP who didn't just say "WELL of course you're in pain! There's nothing I can do!"

My doctors won't revoke my ME diagnosis because they believe my type of EDS doesn't really cause fatigue. But I'm with the more balanced posters here that say that if you're not too severely affected you will be able to just about hold it together and do all that you do, but it will take its toll in the long term. Please ignore the people saying "you can't have ME if x/y/z".

You need a diagnosis to get to the root cause and begin appropriate treatment, whether that's medication, pacing, physio or something else.

[WoodYouBeHappy]

Op, I really feel for you. I suspect I have had ME/CFS for years. I worked with children & had some additional stresses & over the years became very very tired. I kept 'pushing on through" (DON'T!!!!!) & finally collapsed after the flu. My GP wasn't particularly useful & I ended up going round different hospital departments for two years (while being too sick to work). No-one seemed to be taking me seriously. It wasn't until I e-mailed my GP with an ME/CFS checklist with ALL my symptoms ticked off on it that she listened & referred me. To ME/CFS clinic

If I can stop just one person making the same mistake as me -by keeping going- then I'll be happy. This is my current thread.

www.mumsnet.com/Talk/general_health/2854321-Chronic-illness-surviving-the-relapses-Am-slowly-drowning-how-do-I-cope-All-handholds-welcome?pg=1&order=

[unweavedrainbow]

My Rheumatologist says it's because they want to distinguish between those who "just" have symptomatic hypermobility and those who have the symptoms and complex needs of a more generalised connective tissue disorder. EDS is supposed to be a "syndrome" and syndromes, by definition, are supposed to affect more than one body system. The reason why some of the things that people with EDS struggle with aren't in the new diagnostic criteria is that doctors aren't entirely sure how they fit in with the other points. There's a common list of co-morbidities (fatigue, gut problems, MCAD, POTS) that are recognised as being part of the EDS spectrum but aren't needed for a diagnosis. Personally I find it somewhat hilarious that the criteria are more interested in the lumps on my feet ("bilateral piezogenic papules") than my crippling fatigue.
More specifically, as PPs have said, hypermobility EDS was being over-diagnosed, making it more difficult to find a gene in the future.
Don't take this as gospel but she says that the aim is to separate the "sick" from the "really sick". I meet the new criteria for hypermobility EDS but only just (6 out of 12), although I am quite young still (27) and will likely get worse as I get older but I'm a wheelchair user who can barely manage 30m on a good day with smart crutches and full splinting, functionally disabled, couldn't dream of working let alone carrying a child and I consider myself fairly mild for full blown EDS. A friend of mine is a tube fed full time wheelchair user who has been in hospital for 5 months. I hope that makes sense.

[GreenPeppers]

I think there are lots of us who have started with the 'mild' form of ME but just pushed through it.
Maybe because we had no choice or maybe, as my ME consultant said to me, because most people with ME are also type A people who will not just sit around doing nothing.

I also agree that you can work with ME. I am but I had to organise my hours/length of time etc... I also found that when I have a relapse I really have to be careful and take the time to rest.
I appreciate though that it might seem impossible to do for the OP. I've just had a year where I did nothing but my part time job. DH had to take up (all) the slack both with HW and with the dcs (who thankfully are teenagers, not toddlers).

I have to say I would push for the diagnosis again and refuse the answer 'it's just having two young dcs'. Was the doctor who told you that a GP or the consultant?
What I did was to come with a list of symptoms, taken from the NHS website, and said 'this is what I have atm'. I made sure that inreally explained how bad it was (e.g. I am thinking ahead before going upstairs just to be sure I won't have to go up again because it's too tiring to do so). It's very easy to minimise the symptoms and the others end up feeling normal when you've had them for so long.
That's also where the list is helpful. It helps remembering all the things that are wrong or hard work etc... And it stopped me from minimising how hard it is, how much pain I have etc.. (eg it's not normal to wake up during the night during because you are in pain)

[WoodYouBeHappy]

Thinking of you Op. If you're anything like me, you'll have used up your spoons posting this and now slid back into trying to keep all the 'life' plates spinning at once.

ClaraShu I have always found your posts helpful. This especially:

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"

Op, it might not be ME/CFS, it might be other things as pp have said. The important thing is to get a diagnosis. I gave myself such a hard time for not keeping up, falling asleep everywhere and felt like I was letting everyone down.

A diagnosis finally meant I had a valid reason! To tell everyone why I couldn't make it -again- why I couldn't cook, why I couldn't get out of bed and why it was ok to sleep as much as possible. It wasn't just me being tired.

Is there any other parents nearby who could help with the school run? A Sure Start? A nearby college with students who need experience in childcare? Low cost babysitters? A good health visitor? Sympathetic GP (change if you have to).

Drop your housework standards, get groceries delivered (£1 slots) involve your children in helping out (often children love being given a responsibility. It's good life skills/citizenship education). Now the weather is improving, carpet picnics of veg, dips, pittas, fruit will be fine. DO NOT feel guilty. You are doing your best with what little spoons you have.

Good luck with everything

[BillSykesDog]

Yeah, I am having a similar issue at the mo. It's not that they're saying 'Oh it's just kids'; the problem is that ME isn't diagnosed by (for example) looking at an abnormal blood test or scan and saying 'Oh there is confirmation of ME'. It's only diagnosed by process of elimination e.g. only diagnosed when they can rule out app other possible causes. And unfortunately young kids is one of those causes. It's a bit of a Catch 22.

[SlipperyJack]

I'm reading this with interest. I have been suffering periodic awful fatigue for over 2 years now. All tests keep coming back clear, save for vitamin D which was a bit low - supplements seemed to help initially, but for the last week or so I've nosedived again. Sigh...

[CFSKate]

"a book called overcoming chronic fatigue" if this is the Chalder book just be aware of Chalder and the PACE trial.

as for pacing I know some use heart rate monitors to be active without going over a limit. obviously the more severe the ME the less activity possible. I support what earlier posters said about the importance of not pushing beyond your limits and thus ending up much worse.

[Flurries]

Someone mentioned it upthread but have you been tested (and not the dodgy NHS test) for Lyme disease? There is a growing consensus that most ME is Lyme-related.

[WoodYouBeHappy]

Anyone else to discuss the Lyme disease testing? I'm sure I read somewhere that after a period of time, a positive test result wouldn't show up anyway....... Even if that was what originally triggered the illness/infection.

Mine was negative, but that was 2 years after the initial collapse & I'd had a shit ton of antibiotics for an infection in the meantime.