Dd's rheumatology referral - what should we be asking?

[Noitsnotteatimeyet]

Dd is 13 and has been suffering from unexplained joint pain for just over a year now. It started in her right hip and has since spread - she's now complaining of pain in both hips, her knees, ankles, big toes, lower back and occasionally wrists, elbows and shoulders.

She saw an orthopaedic surgeon in November and had hip X-Rays which were normal followed by MRI of the right hip which showed small tears in one of the muscles deep inside her hip joint but no other abnormalities. All blood tests so far have been normal.

She's slightly hypermobile in her lower limbs and has been given orthotic insoles to help align her knees and hips better but according to the ortho surgeon not so much as to cause this amount of pain for such a long time.

She's had to stop most sports activities as running etc causes intense pain and has missed quite a bit of school (she loves school). She's grown quite a bit in the last year or so and is now tall and very leggy but has not yet started her periods.

The orthotics haven't helped and and paracetamol/ibuprofen do nothing. Dd's been given Physio exercises which she does pretty regularly but again which haven't stopped the pain. The surgeon is baffled (has hinted that she thinks it's psychosomatic) and has now referred dd to the rheumatology department.

Sorry for the essay but does anyone have a child/teen with something similar? What should we be asking the rheumatologist when we see them? Dd is starting to feel thoroughly fed up and is wondering if she'll ever feel better

[Quietlygoingmad67]

Please don't rule out EDS type 3 (hypermobility syndrome). If your DD has soft tissue damage around her hip joint then you could be looking at 3-4 months of recovery! Also don't assume that the exercises the physio have her are doing her any good - thy could be causing harm if she has HMS. Also please don't let them tell you te pain is in her head! This will cause your daughter to mistrust the medical professionals - my advice would be to research HMS very well before your appointment. There is a very good website (sorry I'm not sure how to link) called HMSA which has some brilliant information. Bog standard painkillers don't work but you will be hard pushed to find a gp who will issue stronger ones for under 16's! We use heat - hot baths with Epsom salts and a tena machine - good luck

[Quietlygoingmad67]

Does your DD sometimes 'click' her joints so they feel normal? If so then I'm afraid this looks like hypermobility syndrome - many of my DD joints partial dislocate (subluxation) and she has to re-set them for them to feel right

[Noitsnotteatimeyet]

Thanks quietly - dd says her knees and elbows often 'click out of place' and it's extra painful until they go back in again. The consultant surgeon said she didn't think it was hypermobility causing the problem as although she does have a large range of movement in her hips, knees and ankles and is flat-footed, it's not 'excessive' and she certainly isn't double-jointed or able to pull her thumb back to her wrist etc. She's been quite dismissive really - said the muscle tears were probably incidental (although they're normally only seen in elite athletes and while dd was extremely sporty before all this happened she wasn't training at an elite level). It's just horrible seeing her in pain and not being able to give her any answers or do anything concrete about it

[Quietlygoingmad67]

My daughter can only get her thumb to her wrist because it dislocates easily! Have a Google 'beighton score' - it does sound like it to me as it's very very similar to my daughter. Be aware that some medical professionals don't believe that HMS exists or causes pain! It took me over a year and a hospital complaint to get a proper diagnosis - good luck

[Runningtokeepstill]

Orthopaedic surgeons may not know much about hypermobility syndrome (HMS) or Ehlers Danlos syndrome (EDS). They deal with bones and HMS and EDS are connective tissue disorders. It's the lax connective tissues that leave joints with an abnormal range of movement rather than a problem coming from the joints themselves.

Ds3 was first seen by an orthopaedic surgeon who kept telling us he couldn't see a reason for the ongoing pain. I kept pushing as there was clearly something wrong. Rheumatology is the place to go but some rheumatologists are more knowledgeable about the condition than others. Ds was seen by a paediatrician once he'd left orthopaedics and referred to rheumatology at GOSH who diagnosed him when he was 10.

Ds isn't massively bendy (can't do the thumb thing either) and he doesn't dislocate but he does have chronic pain. Pain relief medication hasn't worked for him and this isn't uncommon with long term pain conditions as the pain signals follow an abnormal pathway. Some people find meds like SSRI's such as Prozac help as it disrupts the pain signals, also meds developed for epilepsy can help so your dd might be offered something like that.

Of course it might not be HMS or EDS but I'd want to ask if that was a possibility.

[Noitsnotteatimeyet]

Thanks running - that's reassuring that we're going to the 'right' clinic now

[Noitsnotteatimeyet]

She's really struggling today and she's getting worried about how she's going to cope with school

Waiting for the GP to call me back ...

[Quietlygoingmad67]

Bless her - what has the GP said?

[Noitsnotteatimeyet]

There's not a lot they can do until she's seen the specialist and her appointment isn't until mid-October (although we can keep calling in the hope of getting an earlier cancellation). The GP is very reluctant to prescribe anything more than paracetamol and ibuprofen without guidance from the rheumatologist. He could refer us to another hospital with a slightly shorter waiting list but it would be about an hour's drive away and if we get a cancellation at our local teaching hospital that would be much better long term. Our other option is going private for one appointment and then trying to slot back into the NHS but a) I have qualms about queue jumping and b) I can't find a rheumatologist who practices privately and also at our local hospital.

I'm finding this terribly frustrating as we've been going backwards and forwards to the GP and hospital for a year now and we're no further on

[Quietlygoingmad67]

It is frustrating - my DD was having problems since ages 8 now 14 and wasn't diagnosed until age 11! Have you tried using a tens machine on the joints that are most painful or Epsom salt baths? Stay strong and hope she doesn't suffer more pain x

[Runningtokeepstill]

Some people find heat or cold applied to the painful areas help. Ds didn't like either so we haven't used this as a strategy.

Get ready for the new term by composing a letter to school letting them know what's going on. I'd make sure they know that one specialist (orthopaedic surgeon) has now referred to another specialist (rheumatologist) so they know this is something to be taken seriously. I sometimes think school default mode is to assume that everyone with unexplained symptoms is malingering but we could just have been unlucky. But if your dd's school is like that you need to get information out to them fast. My ds was made to feel much worse by people thinking he was "putting it on".

What's your dd like at pacing? Does she try to do everything on a "good day" and then crash out the next day (or longer) and not be able to do anything? That's something people with pain conditions need to be careful about. It's also something schools struggle to understand so you need to let them know that it will be a issue - and that it may continue to be an issue if the rheumatologist diagnoses an ongoing condition.

If at all possible I'd hang on for the appointment at the hospital you feel happiest with. When ds was in a lot of pain he couldn't get an appointment at our local hospital without a long wait so reluctantly we went elsewhere under choose and book. Then we got stuck with an orthopaedic surgeon who kept telling us he couldn't see a problem and didn't refer us on. Then the notes from this hospital didn't get passed on. So when we had to go for an appointment at school to discuss ds's pain related poor attendance, we found the school nurse had told school there was no record of ds's hospital appointments and they thought we'd made it all up! Since then we've had other problems with notes from out of area hospitals not being linked up with current notes so I'd try to avoid this.

[Noitsnotteatimeyet]

Thanks both! How are your DC now? Is there any light at the end of the tunnel?

She's started putting Epsom salts in the bath and having a bath after activity - I'll ask about TENS when we see the GP on Friday (I hated it when I was in labour but it might buy different for dd)

She's not very good at pacing herself - we had a pattern last year of her trying to keep going in PE lessons on Monday afternoon and then not being able to go to school on Tuedays. There's so many things she wants to do - I'm just keeping everything crossed that this settles down and she can get back to being busy and happy again

[Runningtokeepstill]

It's probably unhelpful to compare with others. Your daughter isn't diagnosed and may not have HMS/EDS so our dc's experiences could just be irrelevant. And if she is diagnosed with HMS/EDS, then it's quite wide ranging in how it affects people. You can get further information from the charity HMSA, they also have a good leaflet for schools and lots of info sheets on coping with pain, pacing etc.

Hopefully the rheumatologist can sort out what's going on.

My ds has just been re-referred to physiotherapy as he's walking quite strangely. Physio can help but you need someone who understands the condition. Strengthening the muscles can help support the joints in HMS/EDS.