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Chronic pain

Child with chronic pain

4 replies

UserStillatLarge · 12/08/2021 11:20

DD is 15 and suffered from chronic pain for the last 2 years. The support she's been given is mostly a version of "take paracetomal and rest" (I think we've worked out by now that doesn't actually help especially as the advice is tempered with "but don't rest too much as you don't want to lose strength and mobility") or "use ice" (which works in that it numbs the pain temporarily but it comes back when the ice wears off).

Unfortunately no one has been unable to identify a cause of the pain so she's mostly been fobbed off between medical practitioners as they all scratch their heads and suggest more paracetomal and rest. I've been told there is a limit to what they can do as she's under 18, so don't like to (e.g.) prescribe stronger painkillers.

Just wondered if anyone else had a child with chronic pain and if they'd been offered more help/support than we have!

OP posts:
longtompot · 12/08/2021 11:57

My ed has had CRPS since she was about 12. She has had more medication than just paracetamol, and actually had to come off it as she was getting headaches from it.
She has had Gabapentin (not good at the age she was at as she went into rages, but might be ok for your dd), and she has had various antidepressants as they can help with pain. She also took ibuprofen though had to stop that due to stomach ulcers.
She went to Bath Pain clinic for a 3 week stay, I went with her, and discovered other people her age were on Tramadol. She asked to try that soon after, she was about 15, and eventually they let her try a low dose. It has really helped her, though her pain is still there.
Your dd needs to be referred to the hospital, preferably the pain clinic there and see what they will help with. My ed got to see a dr who specialised in chronic pain just by my chatting to my yds (she has JIA/RA) physio and she put us in touch.
Another thing, depending on what is causing the chronic pain, ice is not the best thing to do. Heat can help so if the ice isn't helping your dd, try that. I wish you all well. It's an awful, long journey Flowers

UserStillatLarge · 18/08/2021 13:57

Thanks for your response. DD is currently stuck in a loop between Pain Mgt at our local hospital (who won't take under 18s and think Paediatrics should deal with her) and Paediatrics (who don't have any Pain Mgt expertise and think pain Mgt should take her). It has apparently been escalated to the CCG, which clearly doesn't help DD. Useful to hear your experience, that something should be available even though she is under 18.

I've asked for a review with our GP so I can at least talk to someone.

Thanks also for the tip about heat - one thing she's not tried!

OP posts:
longtompot · 19/08/2021 12:40

My daughter mentioned with using heat it can feel worse at the start as the blood vessels open and the pain can intensify, but it then starts to help. Worth sticking with if yours finds it too much when she first tries it.

LunaAndHerMoonDragons · 19/08/2021 12:57

I'd ask about adding regular ibuprofen to the Panadol as a start. There are non opioid treatments for chronic pain, they don't always work but if safe in adolescents I'd want the doctor to be trialing. Amitriptyline and various other tricyclic antidepressants, drugs to treat epilepsy like lyrics and Gabapentin, muscle relaxants.

Heat can be good at least in the moment. Pacing could be useful, if you google pacing and chronic pain they'll be a lot of information. Basically it's about keeping moving without overdoing and making the pain worse. It's also a way to slowly increase activity. Besides pain specialists and in terms of getting a diagnosis, chronic pain usually gets referred to rheumatologist, where I am.

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