Does anyone have any experience of Pain Amplification Syndrome?

[Al1son]

DD2 (8) has AS and has suffered severe pain from her hips since a January.

We've so far been told she had juvenile arthritis, then hypermobility syndrome and now it's hypermobile joints alongside pain amplification syndrome.

She's going to have four or five sessions of physio which apparently should solve the problem.

I'm trying to keep an open mind.

[1980Sport]

Hi - sorry no experience but I think I remember a post by you about arthritis before which I replied to?!?

Hopefully the physio will be a help! Have you tried swimiming or walking in the water to help ease the pain.

[Al1son]

That's right. We have done swimming and it helped in the water but she got so cold getting dressed it hurt more than ever on the way home . I'm wondering about asking if we can use the hydrotherapy pool in a local centre for children with learning difficulties.

I'm just a bit sceptical about the idea that the main problem is stress. She is a very anxious child, true, but the idea seems to be that they get into a vicious circle of not moving because it hurts and then it hurts because they haven't been moving. The problem I have is that she can go a whole week being very active and experiencing very little pain and then suddenly it hits her out of the blue and she's in agony even if she's not done much for the past couple of days. That doesn't feel much like a vicious circle to me.

[moosemama]

I have no experience personally, but my younger sister suffered with hip pain for years and tried just about every doctor and treatment going, until finally being diagnosed with neuropathic pain last year. This was a huge turning point for her, she has been given some sort of pain blockers and is finally starting to live her life again after years of pain which severely affected her life.

There's some basic info about it here but you can probably find out more if you google. (I would do it for you but I'm a bit tipsy at present. )

I did manage a quick google for you though and thought this article was interesting reading - apologies if you've already read it. I read somewhere else that transient synovitis can go away, but then recur frequently, so perhaps that might be worth looking at?

I hope you manage to get some answers and appropriate treatment for your dd soon.

[Al1son]

Thanks for those links moosemama. Hope you enjoyed your drinkies!

Your poor sister!

I will bear the info on neuropathic pain in mind. I'd never heard of it before.

We'll go along with this latest theory and hope it turns out to be successful. You never know!

When we left I said to DD2 what lovely news it was that they would be able to make her pain so much better and she just told me she doesn't think it will work so I think I'll have my work cut out talking it up before the next appointment.

[1980Sport]

Yes - it doesn't sound like a vicious circle at all! What sort of exercise is she doing? Did they say anything about her shoes/trainers? The hydro-pool would be great if you could get the use of it!

[moosemama]

Hi Al1son,

I meant to say last night. Does the pain definitely appear to be right in the hip joint, or is it around that area in general.

I only ask, because you mentioned her being able to be physically active and then suffer around 48 hours afterwards and that rang 'fibromyalgia' bells for me.

I can't remember how old your dd is, sorry, but a friend of mine has a daughter who is 16 and has been diagnosed with it and although most people think of it as an adult illness, it can occur in children too, hips and knees are common places for pain.

Description of fibromyalgia pain.

[Al1son]

It's hard to tell exactly where the pain is because she's not that good at describing it. It hurts her to sit on hard surfaces and she's started to complain of more pain when her bladder is full.

I wish there were some sort of pattern to the pain. I've tried really hard to pinpoint a period after exercise when the pain comes on but it really appears to be totally random. She can have a few days or even a couple of weeks when the pain is really low level and manageable and then she will be suddenly in severe pain perhaps for a few hours but it can be days or weeks. When the pain levels are low she's really active. We got a trampoline a few weeks ago and for the first two weeks she was on it all the time and the pain was really good. Then she had a couple of weeks when it was very disabling. She still used the trampoline during that time but not for such long periods.

Maybe the whole thing is anxiety induced and there's nothing wrong with her hips at all. I'm beginning to doubt my judgement about the whole thing now.

[1980Sport]

Don't doubt your judgement it might be anxiety induced but that doesn't mean she isn't feeling real pain. A number of years back I had crippling pain in my elbows and shoulders, I did a fair bit of weight training so assumed I had done myself some sort of injury. The pains came and went but they were agony after a pile of tests my lovely gp sat me down and did a stress test and sure enough I was very stressed. I pin pointed my job as a cause once I'd changed the pain just disappeared! Treating the anxiety is probably harder than a medical cause tho isn't it :(

[Al1son]

Thanks 1980sport.

If it is anxiety then the cause is school. She's trying so hard to refuse to attend because she is so unhappy and stressed. I need to get her a place in and autism base but that will be a lot easier said than done.

As usual it's a bit of a lottery but at least she's getting physio and I guess if things don't develop how they expect they will look again.

Thanks for the support. MN is ace.

[Ben10isthespawnofthedevil]

I have a currently undiagnosed pain problem where my hands and foot go almost black. It does get worse with stress (great - going through dx for DS might be a tiny factor then ). A lot of it for me is linked with breathing so yes anxiety may well be a factor as I ended up in A&E a month or so ago with breathing/ pain issues.

[Ben10isthespawnofthedevil]

Sorry, not to say that your DD with end up in A&E, just was my experience.

[Al1son]

Thanks Ben10.

DD2 has ended up in A&E with this once already anyway. I know what you're saying. Anxiety can be very powerful.

When I woke her this morning she was moaning in pain as soon as she moved her legs and before she was actually awake. That makes me think I need to know more about this pain actualisation syndrome.

I know anxiety can make pain worse but I don't know if you have to be anxious at the time for the pain to be bad or whether it's a more general pain processing thing with long lasting effects. She can't have been worrying and anxious when she was waking up, before she was even fully aware of where she was or what day it is, surely?

I hope they find a reason for your symptons soon Ben10!

[Ben10isthespawnofthedevil]

My physio has told me that it doesn't matter whether you feel stressed/anxious, the pain or symptoms can occur regardless if the stressful situation continues. ie I don't feel stressed ATM re my work situation and not being paid as my parents are subbing me but the stress and underlying issues is still there IYSWIM. She might possibly have been dreaming about whatever her anxieties are.

What painkillers is she on at the moment? She is only little so I guess there are lots that they wouldn't give her.

[fanjoforthemammaries7850]

i dont think Pain Amplification Syndrome is said to be caused by stress..it is physical AFAIK

[Al1son]

Ben10 she's got Ibuprofen (double dose) Paracetamol and codeine. when it's bad they don't seem to help an awful lot which the physio says is evidence that it's stress related.

Fanjo you seem to be one of only a few who have heard of it. Any more info you have would be really welcome. I have Googled it but might well have missed things. The physio was adamant that school stress is causing it. I don't want to argue too much as it could be useful for a statutory assessment which school are about to request but I'm not convinced as you can probably tell.

[fanjoforthemammaries7850]

www.rsds.org/pdfsall/AMP_RNDparentHandout.pdf is interesting..in fact that whole website is quite interesting.

[Ben10isthespawnofthedevil]

Fanjo that is a great hand out.

In fact my physio scared the living daylights out of me yesterday by giving me another of the names for this exact condition as a possibility for my symptoms. When I googled was let's just say the articles were not very positive.

Whereas this article indicates that increasing the level of exercise even though it hurts is best. I have actually been banned from sitting on the settee and have to sit on the gym ball off the time.



Alison So it looks like both DD2 and I have been told we have the same condition.

[fanjoforthemammaries7850]

i have probably got the same condition too, in a lot of pain all the time from even minor injuries

[fanjoforthemammaries7850]

i'd be very wary of going down the "stress" route with your DD, tbh, whatever the physio says

[Ben10isthespawnofthedevil]

Al1son I found that the ibuprofen didn't touch it so I now have naproxen and also as it is nerve related, I have imipramine which is an AD but specifically prescribed for pain rather than depression. Paracetemol and codeine as and when.

Might be worth seeing whether they will change her meds for something a bit substantial. The impramine can be prescribed to children for enurisis (sp) so is child-friendly according to the leaflet. I'd want to keep her off the codeine if poss as from my experience it makes you really woozy which at night is OK for me but during the day I can't function.

Obviously I am not a dr but just my experiences as an adult with a seemingly similar condition :)

[Al1son]

That is very interesting Fanjo. I wonder if the restricted bloodflow could be the reason why it is sometimes so dreadfully painful but at other times it's ok. I will be exploring that site much further. The ironing I was planning to do can wait

[fanjoforthemammaries7850]

I see they do say stress can make it worse..but the pain is real

[Al1son]

Yes they kept reinforcing to me that, whatever the cause, the pain is real. This is going to be hard to explain to school because they are determined that the pain is not real and if they are told that it is related to anxiety they will make assumptions which back up their own view and be even more difficult about pain relief.

It is all such a complicated mess! Why can't I just have school uniform and playground squabbles to deal with?

[Al1son]

Sorry that sounded really self-indulgent. I have got a grip really!

[cory]

I have read that hypermobility syndrome itself is thought to have a component of amplified pain: basically the brain getting misinformation or struggling to interpret information from the nerves. But like yourself, I have always been wary of mentioning that one to the school: one imagines what that information can do in the hands of an unsympathetic headteacher

Dd who has HMS also suffers badly from cold and her pain also gets worse from anxiety: we have been told that it could partly be because her muscles go into spasm.

She is having counselling about how to deal with the pain; what CAHMS have been saying is more or less "yes, we know the pain is real, but if it can't be cured we've got to work out a way for you to live with it". Which makes sense to me.