Chronic Pain Sydrome - what to expect

[Meckity1]

My 13 yr old ds has been diagnosed with Chronic Pain Syndrome.

He has had pretty much continuous severe pains in his knees for a long time and it's taken years to get to this diagnosis. He got the diagnosis in April, so of course most of the treatments seem to be unavailable. He sometimes takes codeine (less than once per day) but anything else hasn't made any sort of difference.

I've been desperately concerned about his mental health for a couple of years but no-one has taken me seriously. He is currently pretty exhausted, very tired, sleep is an issue although he is taking melatonin.

Is there a cure? Is this how it will be for the rest of his life? What can I do for him?

Any help gratefully received. I've had a google, but I don't know what sources to trust and the bits I've found don't seem to be optimistic.

I'm sorry but the more I read you OP the more confused your sons treatment seems to be.

Melatonin isn't a sleep medicine as such. Melatonin is a hormone that promotes sleep. For example In children with Autism spectrum diagnosis they dont produces enough melatonin to send them and/Or keep them asleep so we supplement.

If you are being kept awake by pain melatonin wont do much so its a really strange choice unless ASD is also on your DS' rap sheet. Physical intervention will probably be more effective eg I slept with a bed cage to keep the bedding away from my affected limb.

Usually the first thing prescribed is amitriptyline, often at small dose. This is used as a pain killer for nerve pain but also has antidepressant qualities. (Is more commonly used in the treatment of depression in larger doses). This can be a small but fairly helpful boost.

@CRPSpost Thank you, I think what you have put is incredibly helpful. He has massive sensitivity to noise and is picky about what he will wear because of how it feels. I never associated that with the pain. I just checked on him (before reading your post) and his leg is at a very odd angle from my point of view, but it makes him comfy and I thought that was normal for teens. He's also really bad at tolerating heat. I've not noticed skin discolouration or hair (but he hasn't quite hit puberty yet). He had Osgood Schlatter, we think, growing pains in the knees, but it didn't resolve and just got worse. He has hypermobility in hands and feet. We have some insoles that we got last week, and need to get shoes to accomodate them. His school are ridiculously strict on uniform, so I don't know how it's going to work.

@WilsonMilson I feel completely inadequate for this. I don't have the skills. I think that when I've dipped into the resources you've kindly shared and perhaps spoken to professionals then I may do better. But it's school holiday in the middle of a pandemic and it's been years trying to get doctors to take him seriously.

My husband had the first experience of a really bad flare a month or two ago as our son was just crippled and destroyed by the pain for most of the day. I don't think he believed him to that point, but that afternoon he couldn't bear to stay in the room with our son. I don't know how to deal with that either.

I suppose that's why I'm asking about the physical side, but that helps me be proactive and make decisions about housing. We are supposed to be getting a new bathroom soonish, so I wondered about getting grab bars put in.

@CRPSpost The melatonin was prescribed because it wasn't just pain keeping him awake. He just couldn't get to sleep. This has not helped his mental state. We did all the textbook stuff with the right sort of lights, getting rid of screens early, lots of support etc. It's still only marginally successful as he isn't getting much rest.

I think they are reluctant to prescribe anything more because of his age.

I've sometimes wondered about high functioning ASD in him, as he is so sensitive to noise and doesn't always pick up social cues (but he is the only child of older, socially awkward parents with no cousins of same age). He used to have an amazing memory (his mind is currently a mess). He's also bright and great at STEM (not just 'mum being proud' bright but 'got into incredibly competitive academic grammar school and is top of their classes bright'). But he can also be wonderfully empathetic.

I don't know what I should be looking for and what I should be asking. That's why the kind replies on here are such a great help.

Bear in mind that it is the Sympathetic nervous system is involved both in CRPS AND Autism hypersensitivity. Essentially all those sensitivities that kids with Autism suffer with are in the extreme in CRPS.

If you have ASD tendencies (the melatonin suggests) you will have some of these sensitivities anyway and they will get worse with stress.

If you are feeling brave Have you googled images for reflex sympathetic dystrophy (The old and imo better name) knee? It is very very distinctive. On the other hand both my children have hypermobility. Their knees both swell when they walk distance, Dad's leg/foot tends to turn inwards left to her own devices (No supportive shoes no insoles). So they also have physical changes but they are not the same. She also goes through a hell of a lot of pain. But she can look very normal 90% of the time. Conversely I spotted an CRPS sufferer (I guessed and was rude enough to introduce myself and ask) from 20 odd feet away.

Hypermobility is not well recognised atm. But i do wonder if it is a better fit for your DS. Ime Consultant get the right diagnosis less than 50% of the time.

I'm the same as @MayDayFightsBack

I became unwell at 11! It wasn't till I was 35 I was correctly diagnosed. With an also very rare disease. I was on deaths door and a medical student saved my life

But I was diagnosed as pain syndrome.

Sounds to me way more like Hypermobility which is often comorbid with ASD than CRPS.

If you had CRPS for years you would probably already be wheelchair bound or the very least on crutches on a bad day.

Hypermobility would just be a dull pain through most of your life. It gets worse during pubity. I'd bung him in a few Epsom salt baths and see if some of the structural oddities improve with insoles and Dr Martens

The melatonin really will do bugger all for pain in sleep.

This is all really interesting and helpful.

The consultant said that there was no hypermobility in the knees, which is why they went for the pain syndrom thing.

I'm glad I started this thread. All I know is that I will keep going and advocating for my son as best as I can. I just don't want to get it wrong.

Yes, any disorder where the nervous system is dysfunctional may mean that all sorts of sensory stimulation becomes bothersome (see fibro self-reported study here).

I don't know much about EDS, isn't it genetic-testable? NHS page Or is that only certain types?

Was your son ever very sick with a virus? This can be a trigger for some conditions.

Would your husband consider counselling for himself? That was an extreme reaction, to your son's flare.

I was categorically told by a consultant my DD didnt have hypermobility,moreover hypermobility didnt exist and everyone is a bit hypermobile. 3 months later she was diagnosed with hypermobility, 6 months she had a short impatient stay to receive treatment for a related problem at a national specialist hospital. (Incidently she also has bad days and some really bad days, especially if she's tired stressed or hormonal. If she's injured its hell on earth!!).

I also nearly ended up with a diagnosis of maunchusen and psychological treatment for DS, until DS had the test that found the physical proof of a very rare disorder. He's now receiving medicine that helps. I'm still waiting on the apology from the dipstick consultant who is now not allowed anywhere near our files!

Keep fighting keep advocating. I can't see your son but I'd be surprised if CRPS is the right diagnosis. Some consultants are truly incredible, most are mediocre at best and if you dont fit into their little box they'll put you in the wrong one to get you off their back. Trouble is when you walk in a room you don't know which one you're going to get!!!

EDS and hypermobility are related. Im totally with the other poster suggesting looking at that.

Tbh DD when shes struggling with her hypermobility... sometimes you absolutely do have to loving leave her to it. Ideally in a bath of Epsom salts. Needing to leave the room when someone in pain kicks off properly isnt that weird to us.

@Meckity1 you sound like a lovely mum doing your best in very difficult circumstances, my heart really goes out to you and your son. As a PP said, it's possible codeine just doesn't work for him, it doesn't work for all people and become ineffective after a while anyway. The body and brain are so intertwined that I always feel it's pointless looking at them in isolation so I'm all for getting him mental health support as well, I just wanted to say that it may be that he is still experiencing real, physical pain as well. The body is a mystery in some ways.

What I found really helpful to me was when my doctor put me in touch with another patient of hers who also had similar symptoms to me. We became good friends (we're still friends now) and just knowing someone who was experiencing things similar to me was very helpful and made me feel less along. If he doesn't like talking about his feelings to a professional he might get support from peers.

alone not along.

Thank you for all the ideas and suggestions. They are really helpful and I'm seriously grateful.

@MayDayFightsBack - thank you for your kind words. I agree that things are all intertwined.

The trouble with son is that he doesn't really open up with anyone. When we've been in with a doctor, I've been left to do the talking - although fortunately he can be very firm interrupting and correcting me if necessary. And that is another thing - am I safe to interpret and advocate for him? He has no problems putting me straight, but what if I'm putting the wrong emphasis on stuff. I have no idea what is important, and a thirteen year old certainly won't.

He's been doing really well so I encouraged him to go out on a very short walk (few hundred yards) but his knee went and he's in a bad place again.

Thank you to everyone for the help. Not only is it helping me support son but it helps me feel less alone, and while it should be all about son, I feel a little lost sometimes.

When you say his knee went, what happens exactly?

Remember he'll be really, really deconditioned by now, so a target might be to walk to the front gate for a couple of days, then to the next lamp post and so on

@CMOTDibbler He didn't give me a full description (I'll know to ask next time, that is why this thread is so helpful) but what happens is usually he gets shooting pains. We've had him walking around our tiny yard and in the house. The street could be making him stressed as we have had some truly gruesome neighbours. Currently we are free from drama, but he may have felt stressed. I insisted on it being a very short walk, but I think we will keep it as moving around the house for now.

I'm really worried about him going back to school. Its a massive old school with lots of stairs and corridors. Who knows what conditions will be waiting.

Thank you for asking. It really helps me navigate this for him.

Seriously sounds way more like a form of hypermobility. CRPS knees dont just give way thats not really the mechanic as the ligaments are solid and the muscles are solid until you get muscle wastage due to disuse from pain. Hypermobile ones do just give way because the ligaments dont hold.

I am sorry to read about the problems your son is having. My partner has CRPS type 2 which means that it resulted from a specific injury that damages the nerves. It was diagnosed by an X-ray which showed the shadowing on the bone.
Type 1 follows from illness which doesn't directly damage the nerves.
I don't know whether Type 1 would show in the X-ray.
Dr Google can be a terrible thing but some research may help. The Mayo Clinic page for example.

The national hospital for rheumatic diseases in Bath is the leading specialist so would be able to give you advice over the phone if it's not possible to visit especially as there seems to be doubt about the diagnosis. They are very helpful.

Do all that you can to be referred to a pain management unit. They will be able to work with your son on mindfulness, physio and medication. You would also then be in contact with pain specialist who would be up to date with new developments etc.