DD (10) could it be aneamia? Even though Doc referring to rheumatologist...

[lookbutdonttouch]

DD is 10 nearly 11.

She has been getting joint aches and pains for months now and we have been back and forth to the docs. In the legs and big joints (hips, shoulders etc) and sort of achy all over.

Also been getting more and more tired, worse in the morning, then perks up and then by tea time she is practically crawling to bed. Then she is struggling to sleep and wakes in the night sometimes. She does go to bed and sleep later than her friends (having checked).

She has mentioned 'being able to feel her heart' sometimes - maybe palpitations? And she gets headaches - thought was a change in eyesight, got new glasses not getting better.

Doc referred to rheumatologist on basis of joint aches (no swelling) and tiredness but now with everything else I am thinking aneamia? She hasnt had any blood tests yet as I think GP was waiting to see what the consultant thought.

Does anyone have any bright ideas (apart from me marching back to GP and demanding a blood test now rather than waiting another two months for the consultant to do it!).

Sorry pressed return by mistake I was about to finish by saying it's worth being able to tick off another box whilst trying to figure out what's going on.

Hi all, bumping my own thread out of desperation really. For what I dont know. But I have to witter on to someone I guess.

We saw the rheumatologist about 3 weeks ago. They were very thorough, lots of prodding and poking and hundreds of tests. Asked me and DD all sorts about symptoms and history. And repeated blood tests.

They saw that her blood tests that the GP had done were borderline hypothyroid but didnt think it was that, considered it, but doubted it. They said that they wanted lots more blood tests.

She is hypermobile in some joints and tight in one or two. They did all the usual 'hypermobile' tests and as she cant touch her wrist with her thumb etc, she isnt in that category, despite being able to dislocate her shoulder!

They said that they would do more tests to see if that showed anything, inc repeating the thyroid, but if it wasnt for the early morning stiffness and fatigue then they would send us on our way... They were 'sitting on the fence' for the moment.

Next appointment is July.

I saw GP (who I am friendly with) and said if it is thyroid or even possibly could we not just try the meds for that and see if it helps?? But he doesnt think it is either... He is getting her results checked out by an endocrinoligist just to be sure and has promised to extricate the results from the hospital if possible.... He did say that rheumatology results can take a while..

In the meantime we are in limbo, DD is shattered, struggling to concentrate at school and this morning could hardly walk for no apparent reason. She is struggling on and refuses to slow down, takes ibuprofen and we wait for it to start working so can go to school. SHe is nearly in tears most mornings and it is just awful.

The waiting is awful and I dont want her to start her new secondary school still not knowing what it is and it hanging over her.

I dont know what I am expecting to get from posting but this morning was so horrid, seeing her in pain, I had to get it out.

Hi thought I would reply as nobody else has.
Just read this thread as I am anaemic and have just been diagnosed with under active thyroid so the title interested me.
Not sure that i can offer any words of advice or help but at least you know someone is reading your story! Must be really worrying for you not knowing what it is and also seeing your daughter in pain and discomfort.
Hang in there is all I can say really and hope you get some answers soon.
Take care
Emma

Thanks for your reply. It does help to witter on as I said!

This morning she wasnt in too much pain but hadnt slept and was white as a sheet.

It is horrid seeing her so washed out and miserable and yet so desperate to still be herself.

Are you seeing an endocrinolgist? From hanging about on here, you need RockinD , she is the thyroid queen....

Oh your poor DD. I know nothing about the thyroid angle, but I'm quite badly hypermobile, and 'hasn't slept, white as a sheet and in pain' describes most of my mornings rather too well. Would it be worth using some of the 'coping strategies' I and a lot of other hypermobile people use, to see if it helps, even if the rheumatologist says she isn't?

For me, that's making very sure I don't get cold (I just lock up if I do and everything gets worse from there), starting the day with a long, very hot shower (take my morning shower away and don't expect any sense out of me before 11am. I feel like a different woman right after, it wakes me up and soothes the pain in my body), painkillers when needed (for me these are prescription ones, I totally understand if you'd not want to go that route with your DD considering she is so young but it might be worth discussing with your GP - constant pain is really, really exhausting) and above all, pacing and planning.

If I have one day where have to be very physically active, I know I have to follow that up with a day of more sedate activity. If through circumstances I am forced to have several very physically active days in a row, I know I'm not going to be good for anything much a day or two after it ends, so I clear my schedule. I know she wants to do all the stuff other girls her age do and that's fantastic, and I wouldn't make her stop either. However it'd be good to teach her to listen to her body so that she can try and pace herself appropriately - sometimes pushing yourself past the point of discomfort is ok and worth it, sometimes it really, really isn't if it wipes you out for the following week. Learning to tell the difference is the trick.

Hi, thanks for your reply.

The consultant said she was hypermobile in some joints and I am willing to accept that its all that!

I will certainly try the coping and management techniques you suggest. I hadn't thought of a hot shower but I know heat helps so will try that! (Getting her into the shower is never easy but what kid likes it?! ?).

They did say keep on nurofen .

I am taking her to see my osteopath too,. ....

Thanks again.

Someone on another thread ( RA I think ) copes with early morning pain by leaving a banana and meds next to bed when they go to sleep , setting alarm an hour before they have to get up and taking painkillers with banana .

So that pain meds working by time they actually have to get out of bed - tho I expect you'd worked that bit out .

Good luck - sounds awful for you both !