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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Chronic pain

Beating Chronic Fatigue by Dr Kristina Downing-Orr

30 replies

Italiangreyhound · 06/03/2022 00:47

Hi all

I am new to this part of Mumsnet but have been on Mumsnet generally for many years.

My teenage child has Chronic Pain and Chronic Fatigue. It started as ankle pain and has progressed.

For the last year we have listened to the doctor who has said it's linked to depression etc, which my child does have.

However, my child is now almost totally bedridden and using a wheelchair to get around on the rare occasions they do leave the house.

Anyway, have just bought a book called Beating Chronic Fatigue by Dr Kristina Downing-Orr. I am working my way through it, I am a slow reader.

I am getting excited that this may have some answers but before I run away with myself, I wonder if anyone else has read the book or been prescribed Nimodipine on the NHS, please.

Many thanks.

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GoldenGorilla · 06/03/2022 06:27

Are you a member of health unlocked? I’ve found that very helpful. You can join a group on there relevant to your daughter and there are lots of very knowledgeable people. Just thought you’re more likely to get useful info there.

Thanks

Akire · 06/03/2022 10:43

What sort of answers do you mean??

Thanks

Italiangreyhound · 06/03/2022 10:58

GoldenGorilla thanks be we heard of health unlocked, do you have a link.

Akire answers like what is causing this illness, how can it be cured?

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RandomMess · 06/03/2022 12:37

Sounds like your DD has complex regional pain syndrome!!!

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GoldenGorilla · 06/03/2022 18:01

//Www.healthunlocked.com

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cataloguejunkie · 06/03/2022 18:34

It sounds very much like CRPS rather than depression linked , does he suffer from hypermobility? Have you asked to be referred to Great Ormond Street Hospital ? They use to do a intensive 2 to 3 weeks physio/pain management programme which was excellent .

Please feel free to message me privately as I have been through this with my son when he was 12.

Thanks

Italiangreyhound · 10/03/2022 23:57

@cataloguejunkie thank you I will.

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Italiangreyhound · 10/03/2022 23:58

Does a yone know if Avena Sativa works and is it better with B vatmin inir?

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Italiangreyhound · 11/03/2022 00:21

@RandomMess "Sounds like your DD has complex regional pain syndrome!!!"

How does that differ from chronic pain and Chronic fatgue?

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Italiangreyhound · 11/03/2022 00:26

"...does he suffer from hypermobility? Have you asked to be referred to Great Ormond Street Hospital ? They use to do a intensive 2 to 3 weeks physio/pain management programme which was excellent "

Consultant said he was not hypermobile, but I thought he was.

We are not in London.

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RandomMess · 11/03/2022 07:25

@Italiangreyhound the treatment will be different because it's a neurological condition. It is frequently misdiagnosed. Immobilising the limb because of the pain is actually the worst thing for it whereas if it's a physical injury it would be the correct treatment.

Thanks

Italiangreyhound · 11/03/2022 10:16

Unfortunately, the pain means he rarely moves and is almost bed ridden sometimes.

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RandomMess · 11/03/2022 10:46

Which is why you need to be seen by a specialist that can asses for CRPS as neurological pain is recognised as being very severe and the treatment for it is different.

Thanks

Italiangreyhound · 12/03/2022 02:50

He's been diagnosed with Chronic Pain and Chronic Fatigue. The pain is all around his body and not at a specific location on the body.

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Italiangreyhound · 12/03/2022 02:55

I'm looking into this now - theperrintechnique.com/about/ It's about Chronic Fatigue and this is a Chronic pain thread so maybe I am in the wrong place!

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MelCat · 12/03/2022 04:17

Nimodipine would need to be prescribed by a consultant and to be honest I think you’ll struggle to get it for CFS.

Your son needs to be under a supportive paediatric pain management team. You say you aren’t in London, but gosh do accept referrals from all over the country.

Most large children hospitals also have teams (there’s one at Oxford, Bath, alder hey for example).

You have my great sympathies. I have a child with a condition which causes them chronic pain and at times you feel very helpless, but a good team can make all the difference.

Thanks

RandomMess · 12/03/2022 08:18

It will be the pain causing the fatigue. That level of pain without an injury may well have a neurological cause.

So I too would want him to see a paediatrician pain management specialist.

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Italiangreyhound · 13/03/2022 00:07

Thank you MelCat and RandomMess he is seeing a pediatric pain specialist whose recommendation is basically physiotherapy and talking therapies. He is now even more ill than he first went there a year ago.

Is gosh - Great Ormond Street Hospital? I would take him there is they could offer anything more. But for us to travel there would be a massive undertaking for him. Today we did a thirty minute journey by car and he was very sick.

Does Nimodipine work for CF?

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MelCat · 13/03/2022 06:58

GOSH is great Ormond street.

Most pain management teams will be compromised of:

Pain management consultant - who can advise on medication if appropriate
Psychiatrist and psychologist - consider if any underlying MH/neurodevelopmental disorders
OT - aids and adaptations
Physiotherapy - improve function

A lot of them other inpatient treatment so child comes in for a couple of weeks. So probably similar to what you have now but more intense and probably more multi-disciplinary.

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MelCat · 13/03/2022 06:59

The psychologist will also work with the child on management strategies.

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RandomMess · 13/03/2022 08:38

The physiotherapy sounds like they do think it's neurological as the way for your neurological system to realise there isn't a physical issue is by the body moving.

All very difficult for and adult to take on let alone a child. It sounds like an intensive rehab would benefit would I doubt that exists for children basically daily physio, psychological support and trying different pain meds.

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MelCat · 13/03/2022 12:30

@RandomMess GOSH, Evelina, Oxford, Bath and Alder all have inpatient rehab programmes for children so as you say there is daily physio, psychological support, group therapy.

I imagine other big childrens hospitals will have as well, but not probably something you would find at your local DGH.

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QueenOfHiraeth · 13/03/2022 15:51

I don't know where you are in the UK but nimodipine is not prescribable in the Lancashire area CCGs other than by specialists for treatment after subarachnoid haemorrhage
www.lancsmmg.nhs.uk/medicines-library/nimodipine/

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Italiangreyhound · 13/03/2022 23:44

Thank you for all the input.

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Buttercup72 · 19/03/2022 17:35

It may seem a bit left field, but have you looked in Small Intestinal Bacterial Overgrowth (sibo)? There is a lot of research just now linking this to cfs and fibromyalgia - although nhs are rubbish at picking this up. There some good info on these sites:

me-pedia.org/wiki/Small_intestinal_bacterial_overgrowth

www.byronherbalist.com.au/gut-health/sibo-complete-guide/

I had cfs/ fibro for 7 hellish years and it turned out to be SIBO and I now feel back to normal.

Thanks

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