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dd and joint pain

(11 Posts)
NoHaudinMaWheest Wed 13-Apr-16 13:02:35

My dd is 16 and has long standing pain in her joints, particularly hips, ankles, hands and feet, and her back. She also has difficulty in walking.
She has been thoroughly assessed and her mobility difficulties have been diagnosed as due to conversion disorder (where psychological problems show themselves in physical symptoms). It seems that the psychological basis is struggling with undiagnosed ASD. Her mobility has improved since the ASD was recognised and we have started to put some strategies in place.
However the pain is the same as ever. She says it is there constantly but is sometimes much worse. She was really struggling this morning but has gone to school as she hates missing classes (and she is about to do her GCSEs).

When she first developed symptoms, she was referred to a paediatrician specialising in orthopaedics and rheumatology. He was sure she wasn't hypermobile and she certainly doesn't appear to have any indications of that. He also checked for juvenile arthritis and Lyme disease. Her father has a genetic condition which can cause joint problems among other things, so he also check that genetic link and she hasn't inherited it.

Her mobility and hand function got so bad that the focus shifted to that and the pain has largely been forgotten by the medics. I am reluctant to put her through referrals and examinations again only to be told that it is just part of the conversion disorder. It is possible that it is, but I do wonder if something is being missed as it is possible to have conversion disorder and a physical condition.

Dd's situation is complex and I don't expect anyone to have direct experience but I wonder if anyone has any ideas about what the cause of the joint pain could be?

CMOTDibbler Wed 13-Apr-16 13:10:08

Has she been tested for coeliac disease? I had terrible joint pain which didn't come up under any tests, but the pain and stiffness was awful. I was diagnosed by a rheum whose friend had cd and the same symptoms

NoHaudinMaWheest Wed 13-Apr-16 13:14:46

No not coeliac but she doesn''t have any gut symptoms. Did you only have joint pain?

CMOTDibbler Wed 13-Apr-16 13:23:29

Yup - and a rash that I thought was eczema but turned out to be gluten related after diagnosis. I was normal weight, no gut problems, and so on.

moosemama Wed 13-Apr-16 14:03:34

NoHaudin - just a guess, but could the joint pain possibly be being caused by deconditioning? As you know ds has hypermobility syndrome, whereas I am hypermobile, but don't have JHS. What I do get is joint pain as a result of deconditioning from inactivity. I'm struggling with this at the moment and it's just about every joint, particularly the weight bearing ones. Essentially my muscles are weaker, so my joints aren't being properly supported.

Interestingly, I was just researching this a bit this morning, as ds2 is really struggling this week after sitting on his backside not being active enough over the holidays. I wanted to find some exercises he could do at home that wouldn't take long or be really hard, but he could do perhaps a couple of times a week to maintain his muscle strength, as he deconditions so quickly and him just lazing about during the two weeks of the Easter break has caused him lots of pain.

I'm now planning on putting together about half an hours' worth of isometric and concentric exercises (which basically means static exercises that involve a bit of resistance, but no extension of the muscles/joints) for him to do and have promised to do them with him. There are quite a lot of ideas on YouTube, but you would have to pick and choose ones to suit what your dd can do mobility-wise at present. Theraputty might help with her hands if it is loss of muscle strength.

NoHaudinMaWheest Wed 13-Apr-16 14:04:31

I have been doing some googling re coeliac symptoms. She definitely has considerable fatigue and also some numbness in her hands and feet. She has had few periods too though that has been attributed to PCOS and seems better since she started on the OCP.
Thanks CMOT. I would never have considered that as a possibility.
Did it take you a long time to get a diagnosis?

NoHaudinMaWheest Wed 13-Apr-16 14:07:41

moose the exacerbation could be due to deconditioning as it is certainly worse after a couple of days back at school. It doesn't explain the ongoing pain though and it hasn't got any better with increased mobility as the medics told us it would.

moosemama Wed 13-Apr-16 14:17:19

The thing is, increased mobility alone, might not be enough, given the prolonged period she was immobile for. She will have lost considerable underlying muscle tone that will only improve with more specific targeted exercise. The beauty of isometrics is that you can start of doing them seated, there's no repetition and they're not energetic, iyswim. There a bit like the opposite of gentle stretching, as in, they're slow, steady contraction of the muscles. Physios use them a lot for people that can't weightbear or have mobility issues. In fact, has she had any physio at all? I would have thought that would be sensible for them to offer, as it makes sense she'd need to regain her strength.

Was she in pain when she initially became immobile?

NoHaudinMaWheest Wed 13-Apr-16 15:32:33

She does have physio but it not very intensive or as frequent as it should be. Physios have all said that she hasn't actually lost muscle strength and she was moving almost all the time albeit not walking.
Her issues actually started with joint pain before she developed mobility issues.
However the isometric exercises sound as if they could be useful. Thanks moose I will have a google.

moosemama Wed 13-Apr-16 16:32:02

If the joint pain came first, then it can't be down to deconditioning. Poor dd, I wish I could think of something that might help. sad

zzzzz Wed 13-Apr-16 22:48:22

I do have some over bendy joints and my children more so, but I have had pain in my joints since late teens. I saw a rheumatologist but while they thought Rheumatoid arthritis I don't have the factor in my blood and I haven't degenerated in that way. I too have PCOS.

What helps me is a very warm bath in the morning and moving rapidly in the water. Sounds ridiculously low tech but it gives me better days.

Poor dd, it is grindingly awful to be in chronic pain. Clothing that restricts my joints makes it much worse so I wear a lot of fleece rather than knits and crocs because they are light and very puffy under foot.

Diet can help and I know people who have got significant improvement with cod liver oil supplements.

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