Mumsnet Talk

sorry Katy - I know how you feel & I absolutely hated that DD actually did have something, even though I knew it, I would loved to have been wrong, but I also realise now that having a diagnosis for her, means that she gets the physio & advice that I never had, so she won't do all the wrong things in life that I did, which ended up making things so much worse - I lived in heels for example - a big no no for JHMS, lots more things that she's learning about now - as well as the bonus of guitar lessons as we also learnt that she might be good at it - turns out it right, she is a natural

Oh I don't know - it's all a bit much atm

Sorry should have said - it's a hereditary condition

aruiane I now now a bit about EDS, so kniw they are similar/same conditions & same here & what keeps going round in my head is what the specialist that diagnosed my DD said - JHMS is closely linked to Fibromyalgia - even the NHS blurb describes the over sensitivity to pain etc & I know too well that with FM if I over do things & push through being ill to get things done etc, I get very ill indeed & it IS very much like flu, known as fibro flu - but I don't think to ask as the time & asking our GP & school nurse has been a waste of time - I do have a referral myself, so I am hopin to get an answer then, because I see so much of the same in DD that I deal with myself, though they now think my M.E. diagnosis is more likely JHMS too, hence the Rheumy referral - if I get an answer I will post it

Katy a lot if that sounds so familiar to me - it took 5 years for me to finally get a Rheumy referral for my DD, though my initial worry was that she had FM too - I was patted on the head & told not to transfer my own health issues onto her it took my getting really stroppy & coping notes from GP appointments & submitting it back in writing to finally be taken seriously & I was right, though I only learnt about JHMS due to a friend who has it on Facebook sending me a link that joined the dots of all my DDs symptoms into one condition - including her diagnosed IBS - DH & I are both hyper mobile - ie extra flexible, at least I was, so to us DDs bendiness was all just normal, we had no idea it could be a medical condition.

I would recommend you look into it - joint hypermobility syndrome - how you describe your DD mood sounds very familiar too & is also a symptom & I remember you posting about her dance, the flexibility of JHMS/EDS DCs gives them an edge with things like dance, gymnastics & guitar & like I said above, they now think it is my real diagnosis too - not M.E

Poor girl. Has she been investigated for 'everything? ' [ can't think of a better way to put that! ] Just in case there is 'something' that pulls it all together?

You would think so, but apparently she is just 'unlucky'

I was a 'poorly' child, now have IBS, CFS & FM, my brother was healthy as a child and as an adult has had an oestocarcanoma, rheumatoid arthritis & diabetes. DH has been medially retired with severe asthma and chronic lung disease since '93 & is in and out of Papworth.

But DD is just 'unlucky'

I've read for years now about your daughter and her illnesses and all the time she has off school.

Could there be some underlying cause here?

Rockinhippy-my 4 dcs have eds-similar to your dd condition and I've often wondered if this has contributed to how ill they always are-its as if they are always tired/in pain/low anyway and can't fight anything off.

My 4 dcs have been like this-ill almost constantly sine mid sep.sore throats,coughs,horrid high temps.really poorly then exhausted for days then ill again.

Ddwas so ill end of nov, just didn't pick up and was diagnosed with type 1 diabetes in dec which the consultant said was most likely caused by one of the viruses she has had-I had no idea what I kept thinking of as 'just a virus' could cause so much damage

All dcs just look pale,skinny and tired.Can't wait for warmer weather and for them to perk up a bit its been horrible.

katy - thanks for asking, she's not had a great week, but struggling more emotionally & mood wise than physically but I know its because she's feeling crappy. I'm just at the end of my tether with it tbh, obviously I feel really bad for her & so wish I could make it all better but she's awful to live with, bedtimes are a battle, school is a battle, endless fighting & downright nastiness to dd2. She is rarely asleep before midnight but is dead on her feet but won't admit it and any suggestion that she takes things easy leads to a strop, doors slamming & culminates 10 minutes later with her feeling really poorly. Sorry to rant there

Katy I am so glad you posted this - not that you are going through it of course but I've a very similar problem with my own DD, & like you I have health problems so its a big worry,

not least because my DD was diagnosed with JHMS' in November, which her specialist said has close links with Fibromyalgia & since before Xmas she seems to have had one bug after another, so much so I've started to worry I've let her go back to school too soon & it my fault.

We were all floored with a flu virus over Xmas, DD started the week before & my health is at rock bottom, but I've put that down to my wearing myself out nursing her, our GP just says we have been unlucky & just keeping new viruses, but reading the replies on here, makes me realise there's a lot of it around, so our GP/ your GP is probably right & its not DDs illness getting worse, or that she has FM too

Have you tried Spirulina for your DD Katy - it does help, though for DD not as much this time round as with other illnesses, she does pick up when she's taking it

Hope she's better soon, I'm sure it's the last thing you need too xx

How is your DD today, Roundabout?

I'm sorry Roundabout - your DD does sound poorly.

DD is definitely getting better the GP was right about the exercise - it is making a massive difference for her

Hope your dd has picked up a bit. My dd is off school again today after a disasterous weekend full of tantrums & tears.

Oh dear - we do find after a really good day/days a bad day or days inevitably follows. No wonder kids find it frustrating, I find myself getting my hopes up about how much dd can manage only to be dashed when she isn't good the next day.

Puddle day today

Thats great that the dance lessons are helping, the sense of normality must be beneficial too. My dd perked up yesterday afternoon & in school today, just for one lesson but better than nothing!

How unfair!

DD had a better day today, how has your DD been this afternoon?

The dance classes are definitely improving her stamina & emotional health

Thats good what the doctor said, sorry yesterday wasn't a good day. My dd has had a few better days this week but back to square one. I'm feeling an awful mum too because I had arranged for dd2 to go into nursery for an extra morning so I could get out & spend the morning with a friend shopping & a quick coffee. Now I am stuck inside with a moaning dd1 feeling very sorry for herself & am paying money I can't really afford for dd2 to be out too. I do feel very sorry for dd1 but I am desparately in need of some me time.

Puddle day today

Aaaarrrrgggghhhh!

So, so surprising

The doctor said it was really important for her to do the dancing; partially because exercise makes you feel better, partially because she was so fit before & needs to get back there and partially because she needs something to look forward to

I nearly fell off my chair

I too think emotional puddle is such an accurate description!

katy - I dont blame you at all prioritising dance over school, she has to have fun especially as you dont want her to be so down its hindering recovery. For weeks we did nothing at the weekends as it was for recovering from school & gearing up for the next week but dd just got more & more fed up. At that time we did have Educational Welfare breathing down our necks so school did seem like the priority. Now school is important but more because dd feels left out by the amount of abscence she had previously so its a tough call sometimes, not sure what to do for the best.

She takes a multivitamin every day.....I'm working on the basis that what she doesn't need will get wee'd away

but maybe 3 extra is over kill

Poor things

Emotional puddle is a brilliant (IYSWIM) phrase BTW - absolutely describes it!

Hope the vitamins help. I've been wondering about it myself (just take a normal multivitamin with added iron ATM)

I just bought some tonic, some energising vitamins & some rescue remedy pastilles; I do hope they help her

She was SO fit & active before this & she is just so miserable now - constant nosebleeds, falling asleep, odd pain & headaches and the emotional puddle I keep referring to (I don't know how better to describe it)