Chronic pain in children

Hi,

I am wondering if anyone has had a child or knows of a child who has had chronic pain,

She is 11 and been suffering from pain from about 6 years old on and of but the last 3years it is 24 /7

The pain is in head and tummy . Back ,

We have had every test possible . Brain scan , ultra sound . Camera in tummy . Blood test , diet tests , MRI

But the results are always clear . Good in one way , but still no closer to a answers , she has tried all types of drugs from paracetamol to gabapentin . Still no improvement ,

We're now on cbt , but after many weekly visits still no improvement , dr say it's stress related , I am not sure ,

Any help or advice please

I am one desperate mum just wanting her little girl to have a normal life

8 Replies

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  • Has she actually seen a rheumatologist? I'd be suspicious of juvenile spondyloarthropathy with the combination of tummy and back pains, especially if there is a family history of back pain, autoimmune conditions, or inflammatory arthritis. Other than that, keep up the CBT - it may not cure the pain, but it will help her cope with it better.

  • I agree 100% earthwitch! That's how my daughter was diagnosed with her problems (see my post!)

  • Hi Becky,

    I have so much experience of this you wouldn't believe. I have two daughters, both grown women now, but at your daughter's age they too suffered with chronic pain.

    My eldest it was her joints in the main, but she also got migraine. My youngest was just like your daughter, our GP diagnosed stomach migraine, later in life Irritable Bowel Syndrome. However, they both carried on with problems and it wasn't until my daughter was 27 and pregnant with my grandson that a rheumatologist diagnosed her as having a form of Hypermobility Syndrome. It all made sense then, she had always been "bendy", her knees were concave when flat, she was always spraining or straining something very easily, and her back we put down to the family hereditary problem, but the specialist said that she had slight scoliosis.

    Since then (2009) she has been diagnosed with a form of Ehlers Danloss and Lupus Anticoagulant. These can only be diagnosed with a special blood test. We also think that the problems we have are related to those, as my youngest still gets horrific migraines and stomach problems, as well as back problems.

    Really push for more testing, don't let them fob you off!

    Good luck

    Jayne x

  • My friend's daughter was exactly the same. Many years of painful tummy and headaches...they called them abdominal migraines. However, at the age of 25 and after breaking her wrist it was discovered that she was coeliac and at risk of osteoporosis!

    Keep fighting and ask for a full coeliac screen.

  • I have a condition called Ehlers Danlos Syndrome, I actually have the hypermobility type (previously known as type III). All 4 of my children have it too. It has many different 'aspects' to it and it can vary greatly from one person to the next. Besides the joint issues and skin issues, IBS is very common with it as are headaches and migraines. She sounds very similar to my youngest. Painkillers don't help at all. Have a look at ehlers-danlos.org the UK charity website, or ednf.org the US charity site (which I think is better, but only because it has had a lot more money spent on it). See if any of the info there that may fit. I was diagnosed 30 years ago, when it was thought to only affect joints, skin and the heart. It is only in recent years that my IBS and migraines have been recognised as being part of the EDS and not in addition to it. I was only diagnosed by a fluke, my GP was also ran a skin clinic (verrucas etc), he went to conference and saw a presentation on it, he realised that my ongoing 'gammy' knee might be it. He sent me off to see Professor Pope who confirmed the diagnosis. Because of that, I have never been doubted. My mum was also diagnosed, after and because of me. My children were all diagnosed at an early age, because it was known that I had it. Many in the medical profession have never heard of it, and until computers were widespread throughout the NHS I often had to explain what it is - I do still have to put some medics right when they think they know better (recently unimpressed with a physio for myself who failed to listen, but had previously dealt with the children's physio in the same dept who was brilliant). Anyway what I'm trying to say is this is a very under-diagnosed condition so even with a lot of tests, it would depend on seeing the right consultant at the right time - or luck - for it to even be considered. I hope you find an answer for her.

  • Very interesting comments and made me wonder now.My daughter (now aged 29) was treated for years as a child for abdominal migraine and it wasnt until she was 21 and saw a rheumatologist that her bloods showed positive for Rheumatoid Factor.By this time her finger joints were red, painful and swollen. She was diagnosed with autoimmune palindromic arthritis. Makex me think maybe there was more going on during her childhood , particularly as I also have an autoimmune condition (Graves disease).

    I fully empathise with all of you who has to see their child in pain it is heartbreaking and you just want to make it alright gor them.I am pleased to say my daughter is currently doing very well.Becky your daughter is lucky to have you fighting her corner , keep pushing for help and I would definitely ask to see a rheumatologist if not already done so , or ask gor a second opinionGood luck ...pipps

  • Take her to an Alexander Teacher. That may help give both of you a few more coping strategies. Doctors do not know anything about micro-cramps and faulty muscular usage.

    Micro-cramps and faulty muscle usage can cause a lot of pain and doctors have no idea how to detect this condition.

    Hope this helps

  • I am now 58years old but as a child my mother was told I had growing pains.I even passed the medical for my nurse training,[ when I had a heart murmur as loud as a trumpet] but it was not until another health professional spotted a pulse at the bottom of my neck which is known as a "thrill" was it ever suggested that I had any health issues.

    To cut a long story short I have since had an aortic heart valve replacement,an aortic root dilatation which is being monitored and recently diagnosed as having fibromyalgia.

    I was seen by a wonderful geneticist called Dr Childs at St Georges Hospital and several members of my family have been diagnosed as having hyper mobility syndrome.

    For as long as I can remember I have always felt pains in joints, shoulders and had colic. If a child has pain then somewhere there is a cause so keep on pushing for the answer .

    It certainly sounds as if a referral to a paediatric rheumatologist would be a good place to start.

    I really hope you get the help your daughter needs.

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