Teenager in chronic pain

My 15 yr old daughter has joint hypermobility syndrome and is in constant, chronic pain. Shes been prescribed low dose Naproxen but these dont really touch the pain. Because she is a "child" GP cannot prescribe meds he feels might provide more relief as they are unlicensed for children. She is taking her GCSEs this summer and is really struggling with exam stress and her pain and is getting really low in mood. I feel really useless; my child is in pain and I can't do anything to help. She has seen a rheumatologist and has regular physio but nothing helps. Just wondered if anyone had any ideas of things we can try to ease the pain. We've tried just about everything - heat, gels, rubs etc.

7 Replies

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  • Have you looked up the condition on the internet? There is an organisation specifically for the condition and am sure they would be able to advise you. Must be horrible to see your child in so much pain and be unable to ease.

    One thing to consider- the stress of exams is difficult and may be increasing her pain (unconsciously). When we are stressed we hold our bodies very tense which won't help. Obviously I don't know your finances but maybe some spa sessions could help? She couldn't have massage but even a nice facial, nails done and a relax by the indoor pool could help?

  • Thanks for replying :) We've been in touch with the Hypermobility Association and got some info from them that has helped - such as keeping as active as she can to keep muscle strength up. They also suggested some meds but these are the ones that the GP can't prescribe! Have tried to get her to go to a support group meeting but shes a typical teenager and not keen.

    I agree with you about exam stress adding to the pain. You must have read my mind, I was googling spa days when your reply came through!

    I'm really proud of her because she tries so hard to keep living a "normal" life and she rarely complains. I know she must be in agony at the moment because she's talking about being in pain. This condition has passed down from me, although it never affected me so badly, so I guess I feel a bit guilty as it's my fault she is in pain and I can't do anything to help

  • Go back to organisation and explain that according to your gp meds are too strong for a child. Ask them what to do next. And other meds options.

  • GP is just being cautious and one can't blame him for that.

    If the rheumatologist doesn't help either I'd suggest a referral to a pediatrician.

    I've checked it up and believe codeine is licsened for short term use for children 12 - it does mention as a caution that children can metabolise the drug differently - which of course can be serious.

    Perhaps your GP can come to an agreeement such as one before school and one during. Codeine dose is flexible and comes in 15mg, 30mg, 60mg.

    I think CBT would be beneficial and at her age there are limits to what cane be given.

    Tramadol is also listed as above.

    The drug amitriptyline which is an TCA antidepressant - now mainly used for neuropathic pain (more often in pain in general and also anxiety/ depression so a 2 for 1.

    The neuropathic pain element is 12-17 years old and depressive illness is 16+.

    So could try getting it prescribed do the latter Indication although I suspect it will need to be a pediatrician to be prescribe.

  • sorry, I have to butt in here, don't take codeine, my dd20 was given this, but her hypermobility had not been diagnosed properly and she actually had hEDS Marfan phenotype. Ask for your daughter to be referred to Professor Graham's new hypermobility clinic in London. It's important to get a proper diagnosis before taking anything. Codeine slows the bowels and in some cases can paralyse parts; it is very painful. As a result of her codeine habit (yes, it quickly becomes a habit) she now has very serious bowel issues and struggles to eat properly. She has controlled it by becoming vegan, but even now she occasionally has belly bloat which makes her look 9 months pregnant and often has to lie down after a meal until the pain goes away. Her stomach consultant says he has even had to remove damaged bowel from patients who took codeine.

  • Good morning

    I would be wary of stronger pain killers at this point because of the side effects and I'm sure they would effect your daughters exam results. I'm a loopy zombie who forgets a simple sentence on these tablets!

    I have found splints to be really helpful on some of my hypermobility joints, thumb ankles knees.....trying to find a good back one but they help so much with pain. I would say use sparingly with your daughter tho as she is still developing and using the splints to much could weaken developing muscles and ligaments but could be worth a try for pain relief when it's really bad or just use when she will be using what's most hypermobile. If they do provide some relief she could wear them during exams. I know a lot of writing really hurts my thumb joint but the splint helps.

    I've been seeing a chiropractor who is helping lots, much more than physio and could be worth a try. I know you hold your body differently when in pain and as your daughter is in a body change age, it could be worth a visit to make sure bones aren't being contorted into less painful positions.

    I see you say you have already used heat but just to say I find heat very helpful, I have an electric blanket on all night, even have one on the sofa with a throw over it. I have a window open to keep my skin cool as only like my bones to be warm and have one of those plug in electric hot water bottles.

    I've not tried cbt yet but did like that suggestion someone else mentioned, that could work very well I think and would be so good.....its next on my list to try.

    I'm so sorry she has started with problems so young. Mine didn't start causing trouble til about 8 years ago, I'm 45.

    Good luck to your daughter and don't feel guilty, you sound like a great mum

    Jo

  • I have constant EDS pain. I use Butrans patches which are slow release. As she is 15, I think she could be prescribed them and you can have them in different strengths. You wear them for a week because they are slow release pain relief... worth a try? Apart from that also take Paracetamol regularly throughout the day. Heat patches help too, she could wear one of those during the day or night. Try and get an appointmnet with an OT, as physios aren't really much use in my opinion, especially if she is mobile. OTs will give advice and also get you supports etc and useful aids which will help with everything from writing to sleeping. Good luck.

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