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.

Has he seen a pain specialist? My consultant has been brilliant, and the cause of my pain is unknown. Mine is in my legs but what eases mine is a combination of medication, creams and an electric blanket. If he isn't under the pain clinic, your GP might be able to refer him.

A consultant has diagnosed him - paediatric rheumatologist.

He's been referred to a physio and prescribed melatonin and codeine.

Unfortunately, current events have cut off being referred to anything else.

I'm trying to cling on to hope, but this is the rest of his life, isn't it?

Thank you for comment. I don't know whether he would accept a hot blanket, but it may be worth a try.

Do you mean CRPS? In which case (and I say this as someone with CRPS), don't read online stuff.
He really needs referring to a pain service, and getting into a residential CRPS treatment programme. Physio is key in reprogramming the brain to stop being in a loop of interpreting other signals as pain. It's not pleasant, but doing the exercises diligently will help in time.
Bath is the best place in the country for CRPS treatment, and they treat teenagers.
With the right help, and really engaging especially with the psychological therapy, this doesn't need to be lifelong.

@CMOTDibbler Thank you, I think it is CRPS, from what I've seen on the NHS website.

We are in West Yorkshire. I don't think we can do Bath.

We've had a remote physio appointment. The psychological people aren't currently accepting referrals. I'm feeling pretty desperate.

He's struggling on stairs at the moment. He's going to be stuffed going back to school.

I'll see what I can do about encouraging the stretches he was given and trying to keep him as positive as possible. Poor kid isn't getting rest from sleep which isn't helping.

Thank you so much for posting on this. I'm completely at sea and I'm very grateful for advice.

If it is CRPS, and everything else has been excluded, then the big thing to remember is that the pain isn't a sign of things being wrong in the knees or his legs. Its his brain getting confused, and the best way to retrain it is to bend and stretch and walk. Swimming is great as there is lots of sensory input all round your body so you can think about how it feels on the normal areas.
It will feel cruel making him do the physio as you want to stop the pain, but as far as I know (and in my direct experience) the more you do things to stop or reduce the pain, the worse it will get.

That makes sense. It is hard. He's just hitting teenage years and I admit that getting him to do stuff is a challenge, but needs must. I suppose it's also a little like OCD, that you need a little exposure.

We saw a consultant in paediatric rheumatology and it's prolonged severe pain with no obvious physical cause. There has been a lot of stress over the last few years.

I've watched his mental health get worse and worse over the last few years, and no-one listened. I am not remotely qualified to give the right sort of support. I suppose now I can be a little more assertive. I'm dreading him going back to school, though. He's a lot better, but at the end of last term he had no short term memory to speak of and was a wreck.

Thank you for listening. I'm really grateful. And I'm glad I can take the advice of someone who's lived it. It's been dreadful not knowing stuff.

I would advise you to go back to his GP and insist he is referred to a mental health professional, his chronic pain is massively influenced by his mental state, and is unlikely to improve without addressing that.

I would also look into ehlers danlos syndrome. A friend's daughter was misdiagnosed with chronic pain syndrome and it was actually ED

@Elsiebear90 Fortunately the consultant is planning to refer him to a mental health professional that's attached to their department, but they aren't accepting referrals during Covid-19. It's just timing. I've been trying to get this sorted for years.

@Pollypocket89 I'm not very familiar with that. He's been diagnosed with some hypermobility in hands and feet but his joints aren't particularly mobile elsewhere. I'll have a look into it.

Thank you for responding. Sometimes I feel desperately isolated, and I don't know what to do for the best. While it is my son who is really suffering, I'm finding it hard as well. I don't know what I need to do for him and where I need to advocate.

Can I just advise you not to be too quick to think there is a mental health element - not that I'm saying there isn't but there may not be.

I became ill at 16, I suffer from chronic pain and exhaustion and in the earlier years it was really bad. For years I came up against various people who tried to convince me it was 'all in my head' as they couldn't (at that time) find a physical reason for why I was ill. In time, although it still wasn't possible to pinpoint the cause, it was possible to see the effects of the inflammation and other symptoms. Eventually the doctors accepted I was ill and that they just didn't have any means of treating me other than alleviating the pain.

Many, many years later I was diagnosed with a rare condition that I had never been tested for and which almost certainly contributed to me becoming so ill. My relationships with the people who doubted me when I had no answers have never recovered - some of them very close relatives. The people who believed and supported me, especially in the early years, are the people I am close to, trust and love in my life now, all these years later.

@MayDayFightsBack I really understand where you are coming from. I have a long series of mental health issues and I once had to wait for an xray before I got a dislocated shoulder treated.

There have been physical issues there, but no trace now. The muscles are unusually tight, so that doesn't help. There are issues in his ankles and feet (not site of main pain), which I'm trying to get addressed (pandemic).

The big thing that seems to point to it being CRPS is that painkillers don't really work. Even the codeine doesn't always hit it. We've had xrays of the site and scans, and can't find damage. It's been going on for years.

If this is a physical problem, then I will do all I can to get it sorted. Independent of that, his mental health is in the toilet and I have no idea how to address it or how to get a health care professional to see it. Equally, son is not happy at the idea of talking to people (I got grief counselling for him in the past which he didn't enjoy and avoided), and he's too young for things like antidepressants.

I keep an eye on what is going on and try not to pre-judge. At this point, though, I'm pretty desperate.

@MayDayFightsBack I forgot to say thank you and thank you for the reminder. It's good to keep me away from tunnel vision.

My H has a chronic pain condition diagnosed during childhood. Being in pain from such a young age has had huge impacts on his personality. You clearly understand that it's really important to get psychological support for your son that suits him. Have you been referred to a specialist pain clinic? In my experience their approach is hugely different from the "standard" CBT. They really changed our lives to be honest, and definitely saved my marriage. Perhaps a youth clinic is another alternative to pursue? Are there any meetups or support groups for teens with chronic pain? He will be feeling so othered by having this awful experience that his peers can't possibly understand.

I'd remortgage to pay for private help if you can't access it on the NHS. I think it's really so important. My DH had a medical professional parent, but the mental health side of things just wasn't so visible in the 1980s. Living with chronic pain is so relentless and he's likely going to be managing some symptoms for life (hopefully with a big reduction with CRPS treatment). It requires fortitude and an array of different coping strategies.

I'd also recommend that you try to get counselling for yourself. I have found it very important to change my mindset away from "fixing" and towards finding good ways to live together with pain in the family.

Because CRPS is a diagnosis of exclusion it's worth considering any other alternatives including EDS, fibromyalgia, juvenile arthritis. Does he have fatigue or just pain?

Put simply, his brain is stuck in a negative feedback loop. This isn’t a knee problem, it’s a brain issue. The pain is real, but it’s not structural.

That’s actually really good news, especially at his age as the brain has great neuroplasticity and new neural pathways can be created to override the old pain ones.
It’s not easy, but it’s definitely possible. My advice would be, now that you know the problem is a pain problem rather than a structural one, to get your son to accept that he has nothing structurally wrong with him, so nothing to fear. Fear is probably driving this.

Were there any life events or things going on in his life around the time this began? Sometimes there can be a trigger for the pain.
I would recommend looking up Dr Howard Schubiner on YouTube, Dr Stracks and the Curable app, Dr John Sarno and his books. Also Nicole Sachs LCSW on Instagram or YouTube and Dan Buglio Pain Free You on YouTube.

I hope that helps in some way.

@WilsonMilson This kicked off when he was being badly bullied, when his only remaining grandparent took ill, when I was arranging care homes and funerals, when I was ill and when we had neighbours from hell. As a family we went through a very tough patch. I mean, it was awful. I was leaving him with friends to visit my dying father (friends were awesome and played video games with him, he was safe there).

Thank you for the recommendations. I'll get on it.

@AutumnLeavesSeptember Everything has ground to a halt with the pandemic. I'm not even sure where to start looking for extra help at the moment (apart from the kind recommendations here). He does have fatigue, but he has had a lot of problems sleeping. And I honestly think he had a breakdown a few months ago, which doesn't help. The consultant ruled out fibromyalgia, and there isn't damage to the bones on the scans. I don't know about EDS.

Thank you all for listening to me. I've felt very alone in this.

How much physical accomodation should I make? The pain is real, but no damage to joints shown. He struggles to get in and out of the bath and shower. How much should I change stuff around?

I mean, with the bath/shower, sometimes he's in the middle of a flare, sometimes he's being a teenager and could manage. Sometimes he's genuinely struggling and sometimes he's just comfy where he is. Sometimes he is fine.

Even the codeine doesn't always hit it.

Codeine does not work as a painkiller for everyone anyway. The liver is supposed to metabolise it into morphine; but some people can’t do that. It does nothing for me - Smarties are better, as at least they are chocolate to cheer me up.

(I don’t have your son’s condition, but do have chronic pain and have been through the range of drugs and procedures, under a consultant for pain relief. Mine was misdiagnosed for 7 years)

@DarkMintChocolate good point. I suppose I was looking at our families. DH's family can take codeine and get great pain relief. My side go loopy on codeine and we shouldn't have it.

Do any particular pain killers work on you? I could try chocolate, but he really wants to lose weight. He's put on a heck of a lot over the last year or so.

Hmmmm...... you'll have to excuse my for this is more a collection of thoughts then well organised.

CRPS is a frequent dumping ground diagnosis for things consultants aren't sure about. Yy to making sure its not a miss diagnosis. The painkillers dont work should not be a criteria for diagnosis. Painkillers dont really work for joint hypermobility either for example. Juvenile arthritis is another common actual diagnosis.

Things to look out for in actual CRPS: extreme skin discoloration, hair growth places where hairs shouldn't typically be, extreme sensitivity to touch (no clothing), sensitivity to sound (yes really), sensitivity to vibrations, sensitivity to hot and cold, swelling, bizarre "at rest" angles. And there will be the unproposing small injury at the start. "Real" CRPS is very very visible. You will be sitting will your affected somewhat grotesque looking limb uncovered!. As you haven't mentioned any of this I would wonder whether tge diagnosis is correct.

Look into Oxygen tank therapy. I do know some people who recovered through this. Its not recognised by NHS (Or Bath who tell you no one recovers from it) and it is expensive.

Otherwise you are looking at any kind of pain killing that allows you to keep moving (and yes sadly that includes Bath's Psychological approach).

I had painkilling interguinethidine blocks. They were horrific and traumatic but allowed me 4-5 days completely pain free to Regain mobility and stay mobile until it went into remission. At the time (20 yearsish ago) the NHS only offered 8, I ended up having in the region of 40 most under anaesthetic or sedation over a period of 18 months from 11-12 years, then the RSD (as it was called then) went just dissappeared. Touch wood I haven't had relapse. I dont think NHS offer them anymore and Bath certainly won't. It was a private consultant Dr Wedley (who consistently got people better) but i think he and his approach is probably long retired by now.

You must must must keep moving no matter how much pain you are in. A physio who understands this and is able to work within your pain levels is invaluable. You are looking for one who can gently stretch your limits not smash them.

Spending time in/moving to a hot country can also help.

Swimming was diabolically bad for me at the start as I could not tolerate the touch of water.

And yes people do recover from it. Not many and as i hear it not many from Bath. As a teen your chances are better. and the more you can keep it moving the better your chances.

My mum ran a support group and national conference while it existed. We still see the little red book pop up every now and then.

Stupid things to have tried and ruled out related to hypermobility (which from what you've said doesnt sound unlikely):
Orthopedic Insoles. Kickers or Dr Martens boots with the insoles
Epsom salt baths for pain relief.

Pubity is a common time to hit trouble with hypermobility, and you can have some hypermobility joints but not others. It can also be incredibly painful. Treatment is just physio

It’s good you can identity some major stressors that were a precursor to symptoms. Although I’m sorry for what you’ve been through.

I hope you can find some of the doctors and practitioners I’ve mentioned point you in the right direction to getting to the bottom of this.

His pain is truly real, and it’s great that structural problems, tumours etc have been ruled out. This means that maybe it’s time to look at the problem a bit differently.

There’s a lot of understandable fear in your post, and maybe that’s also something that’s being communicated to your son and creating an even more stressful situation for the both of you. There is almost nothing worse in the world than seeing your child in pain and feeling helpless, it goes against all our maternal instincts and all we want to do is to take the pain away.
I really do I really sympathise for the very real pain he is in, but I would urge you to get off the hamster wheel of trying to find a mechanical reason, it’s so exhausting when you feel like you’re going around in circles. Take heart from the fact that doctors have found no sinister cause for this, and maybe take this opportunity look at some of the emotional things that may have caused his brain to turn on these pain pathways.

I

Actually theres a very good chance CRPS is structural. There was research happening many years back that the pain was due to damage to small nerve damage of the sympathetic (Not central) nervous system. We have no current eady way to 5est for this. If/When the the nerves regrew/repaired the pain goes. Hence why children and teens with increased growth hormone were more able to repair and possibly also why oxygen therapy works because it promotes repair.
If you lose mobility the body stops providing sufficiently for the limb so the repair doesnt happen and the condition worsens.

But i wouldn't give up looking for alternate reasons yet. Many of the things that I would recognise as being a part of CRPS proper as opposed to CRPS dumping ground arent in the Ops post. I would say from the support group days well over half were eventually diagnosed with something better understood and more treatable.