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

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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!).

In my experience it is very unusual for a GP to do a referal before doing bloodwork and I am very surprised. It may be different for children but I would go back and ask for blood tests to start eliminating or even to get a diagnosis. It's a long wait 2 months.

I'm also amazed at the lack of blood tests. It could be anaemia although mine was severe (before diagnosis) and I didn't have the joint pain you describe. (I did have the headaches and severe tiredness, along with breathlessness and feeling generally very low) but there are other possibilities that would show up on blood tests, too. Has she got raised glands at all? It actually sounds like how I felt with glandular fever... No way of knowing without tests though.

Yes, he was a very young GP and maybe he thought refer first to be sure.

I am going to go back and get blood tests done now. Can't wait another two months.

I am wondering if the aches are part of the tiredness or something else.

Going to prod her glands now. ..

Has she been tested for glandular fever?
I'd be pushing for a quicker referral too.

Glandular fever causes muscle aches.

What is her diet like. If you pull her bottom eyelid down a bit what is the colour on the inside of the lid? Also the colour of the lines on her hand? Is she very flexible

Can you get glandular fever at that age? I always thought it was teenagers (or maybe I just dont want to think of her as old enough!).

Diet is not bad ish, do force through the veg and fruit although could be more. DO have a problem with her not drinking much although she does seem more thirsty.....

How would she have got glandular fever? Does it come after a cold or something?

This has been going on for months.

She is quite bendy, not hypermobile according to doctor tests but I watch for it as I have lots of problems with it (in me).

Will check eyes when get home....

Thanks people, its good to discuss this....

Ask for a diabetes check too. I am very surprised that GP didn't do blood checks before referral, anytime I've been to see Rheumy, they always say "oh we can rule out x,y,z as the GP has done blood test sfor those"

Are you sure she's not hypermobile? That was the first thing I thought, before you even said you had it. I have it too and I have all those things you describe. It first started to become a real problem when I was your DD's age. Bloodwork to exclude other things is good though. I was tested for anaemia a million times as a child for similar symptoms and I never had it, in hindsight it must've been my first serious hypermobility flareups.

Glandular fever - is very contagious, so if she's been in contact with someone who has it (maybe even without knowing) she could've caught it.

That sounds very similar to me when I was a young teenager. I've recently been diagnosed with ankylosing spondylitis, which often presents that way in young people. (if only the many rhematologists I saw as a teenager had managed to diagnose me my life might have been less painful).

I really think she may be hypermobile. She has joints that click about and seem unstable and she gets aches in all the major ones.

Problem is the GP did the bendy thumb and the arm stretch thing and says not.

However I cant do those and I am very hypermobile in certain joints, i.e. spine, hips, jaw. So I have been watching her in case she starts and now she is in pain. The tiredness threw me.

I am getting her back to GP to demand some blood tests and push some more and then I shall report back.

Thank you lovely people.

The rheumatologist should also do tests for hypermobility even if the GP says s/he's done them. It's worth getting the GP to do some blood tests before you get to the rhematologist, just to speed things along.

Some of her symptoms do sound very much like the sort of thing it's worth getting a rhematologist to investigate. I don't have any visible swelling in any of my joints, and even the blood tests for inflammation (ESR) come back normal, but there is plenty of swelling there which causes quite a lot of pain and impedes my movement. Also, the patterns of exhaustion (bad in the morning, best in the middle of the day, bad again at the end of the day and difficulty sleeping) are very common with rheumatic conditions.

We are booked in for Monday morning and I will come out waving a blood test form I promise!

She is better in the middle of the day yes. No swelling just pain, well nothing visible anyway. Just sort of creaky...

I am fearful that there is something wrong and that it will take a while to diagnose. In the meantime she is continuing (gently) with PE on the good days and ballet etc, (again gently). I dont want to stop her completely unless I have to.

However I am scared a bit because no one listened to me when I complained of pain when i was young and wobbling about and now I have all sorts to keep me 'in line' so to speak. I dont want her life to be a painful one.

I will report back...

THanks again.

I wouldn't stop her doing PE and such even if she is hypermobile, the stronger and fitter she is, the more her muscles will pick up the slack from her joints! If she is, exercise is very important to keep her fit and will prevent problems. It's a delicate balance though, as I'm sure you know, between doing exercise to strenthen and keep fit, and not doing too much because of being so injury-prone. Some sports are better than others. I'm told swimming is one of the best for it. My physiotherapist characterised the horse riding I did at that age as 'not the best, but not the worst for it either', but when I came in one day with a volleyball injury asked me what the hell I'd been doing playing volleyball in the first place and could I please not do that again, for my own sake.

Update for all my DD's medical advisors .

So she did her normal ballet on Saturday and didnt 'go easy'. Sunday morning she could barely get out of bed and spent the day limping about, lying about and taking calpol (well I gave it to her obviously), obviously in a lot of pain. It improved during the day a little but she was as bad as I have seen her.

Monday she did PE gently, which appears to involve flinging things about and today her shoulder and elbow are all sore.

We went to the docs, had a chat and she is off for some blood tests.

I am thinking (hoping) that she has something that can be helped with diet / pills like aneamia or thyroid and poss that she is hypermobile like I am rather than anything more serious.

I just want them to find it out now before she does damage and before she goes to big school all pale and tired and floppy.

Oh my first smiley! Get me!

Hopefully they can get her sorted asal

DD2 had a virus just before her 3rd birthday from which she never really recovered. She developed Juvenile Idiopathic Arthritis (with underlying Hypermobility syndrome [aka HMS]) as a result and had achy joints (well actually she screamed crawling up the stairs!) which were also swollen. Her legs would also give out underneath her at times and she would fall to the floor.

Is there any swelling on the joints? Do they feel hot to touch? Or do they 'just' hurt?

DD2 got better though and before her 4th birthday was told she was in remission from the JIA and 'just' had HMS. She is now 4.3y and has stopped physio and is miles better although she has bad-ish patches when she has a growth spurt. She is 110cm now and as tall (or taller ) than some of DD1's Y1 classmates - she only starts school in September as she is still at playschool.

Is your daughter very tall? The rheumatologist explained that very tall children with HMS obviously grow quicker during a growth spurt than a smaller child so their joints become more unstable then a smaller child as the ligaments stretch more and the muscles struggle to catch up (HMS patients use their muscles to stabilse their wobbly joints as the ligaments are too stretchy to support the joint like a non-HMS person would).

Because HMS people use their muscles to keep their skeleton stable they get tired quicker (burning more energy just walking let alone running!) and they can get very fatigued and pale.

I hope you get to the bottom of this quickly and the blood tests show something - do ask how long it will be for the results (worst case scenario how long) and don't be afraid to call the GP/paediatrician/Rheumy and chase up if the results aren't forth coming. All the best to you and your daughter.

Hypermobility and palpitations...get the rheumatologist to consider Ehlers Danlos, too.

Evening all.

Well we have had blood tests back and apparently all is fine but the thyroid stimulating hormone result is borderline at 5.4, according to doctor.

So she could have an underactive thyroid? Or is that not what that result means?

Would this cause joint pains?

Or is that going to be something rheumatoid y.. ... On top of thyroid.

The doc is sending result to consultant whom we are seeing on April 20th.

I have anaemia and underactive thyroid! Sounds like classic symptoms to me! I was diagnosed at 15, the 2 problems go hand in hand. Ask for full blood count, feretin (which is iron store) and thyroid function test. I'm having my ds13 tested in a week ad he also has classic symptoms and it can be genetic.

Sorry I hadn't seen your very last post. Yes joint pain is very much a symptom. If she's borderline she can still go on mess as there is a scale you need to be within. She might need to be higher up the scale , but it does mean taking thyroxine daily for the rest of her life. You could try glucosamine bits to aid the joint pain.

Please get her B12 checked too.

B12? Is that something the doc would have done as a matter of course?

The GP did say he would give me a copy of the test results when I next go in so I will check.

This morning DD was tired and cold and pale looking and said she had a weird feeling in her chest when she breathed. Like something was tight. Not her whole chest, in the middle. She has had that before and it usually goes after a while.

She has had a busy weekend.

Not long til the consultant!

B12 is not usually done as a standard test. Might be worth looking on the pernicious anaemia society website at the symptom list but I don't want you to be unnecessarily scared. However, ido think it's worth asking for