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hypermobility syndrome and chronic pain

11 replies

Runningtokeepstill · 19/01/2015 13:58

I'm reposting this from children's health board to see if there are more responses here.

Having a "wits end" moment about my 15 year old son. He was dxd with Hypermobility Syndrome (hms) and chronic pain syndrome by Great Ormond St Hospital aged 10, after a year of pain and mobility difficulties and lots of local investigations. Although GOSH got him more mobile they said he needed psychological help but local CAMHS have always said they don't have the expertise to help in his case and that ds isn't suitable for the therapies they offer.

Basically he ended up being signed off by everyone as they couldn't help. He's hardly been in school since the end of Yr 5 and trying to just push him to go in ended up with the pain getting worse and everything getting so bad he could only get about in a wheelchair. His secondary school wasn't sympathetic and when DH became seriously ill we pulled ds out of school for a year for home ed as we just couldn't fight on all fronts at once.

After DH's death just over a year ago, home ed wasn't working and with a bit of a fight I got DS into a much better school. He's been managing 60% attendance (brilliant for him) but had a mega flare up in November and hasn't been back to school since then. He seems exhausted, cannot sleep at nights and hardly leaves the house. He tries to work but is "mushy brained" when he is like this.

There are no local pain services for under 18's. At my request our GP has now referred him to the Pain Services at the Royal National Hospital for Rheumatic Diseases in Bath. This is meandering through the system and I anticipate them seeing him for an assessment but what can I do in the meantime? I am exhausted with trying to deal with it all. There don't seem to be many dc with hms that have got stuck in such an extreme reaction. He's not very bendy and I think it's the abnormal pain responses that are the main problem. It all started after he fell off his bed and onto his back when he was 9 but extensive investigation show no injury.

He's now totally demoralised and cannot see life ever improving.

OP posts:
zzzzz · 19/01/2015 16:47

This reply has been deleted

Message withdrawn at poster's request.

youarekiddingme · 19/01/2015 17:27

Sorry to hear about the past 5 years - sounds very tough.

Has your DS had the pain receptor/ nerve test? My friends DD has had similar problems and they put wires on her head. Turns out her brain is sending pain signals - every nerve is active. So her brain is making her body feel pain iyswim? (Not the most scientific explanation!).
She has been on pain management support in a residential unit for a few months. They've helped her with pain management, the psychological and physiological stuff support to find ways she can do things. It needed funding from LA/ PCT (unsure which one) but she has shown improvements.

I also agree Internet school when he's well enough is a good idea in the interim. At least he can access it from a comfy position - bed if needed and dip in and out as he can.

If he's finding typing painful or thinking and then typing too much due to 'mushy brain' have you tried the speech to text software? It can be done on iPad (there's an app) and also available in computers. Or use the voice recorder on an iPhone to record his thoughts for him to write up when he can.

Have they given him medication to help manage the pain? Is there anything else they will prescribe to try?

Can you self refer to an OT? They should be able to make suggestions and maybe provide some splinting for the affected joints that can be splinted.

blanklook · 19/01/2015 17:41

Deepest sympathies Flowers it must be so hard for you.

DD's 22, she's been just about physically non-functioning since Nov as well. It's concerning me so much that I'm keeping a daily journal of her symptoms and capabilities. She also suspects her symptoms are getting worse. Fatigue and pain doesn't come close to describe her daily life. She does sleep but wakes up shattered and often has brain-fog, sometimes on waking, other times after a few hours. Having eliminated lots of possible causes, I'm seriously wondering about gluten ataxia, that's our next thing to try. I've tasked her with trying to find a week's worth of recipes for herself as she already has a host of intolerances and dp is ill so I've been torn between caring for both of them since Sept. If gluten ataxia isn't it, then I reckon sleep apnoea is the next thing to rule out because since birth she does stop breathing for a good count of 10 periodically during the night.

She can't describe the pain very well and she's often very cold. I'm in a t-shirt and leggings, bare feet in flipflops, central heating's on, aga's on, she's wearing fluffy bedsocks, fleece pyjamas, jumper, a thick plush dressing-gown and has a hot water bottle and at least one cat.

We find these help in varying proportions depending on the type of pain and what's affected.

TENS machine, like the ones used in labour, it can block the pain signals from the brain and gives some relief sometimes. She finds it most effective for nerve-pain.

A long soak in a warm bath with 3 good handfuls of the Pink Himalayan Salt, I don't know what it is about that particular type but it works for us like nothing else can.

Massage the affected area with warm oils and any essential oils of choice, there are plenty manly ones like sandalwood, black pepper etc.

Microwave hot water bottles.

Warm drinks, relaxing herb teas. No junkfood or processed food.

Splints for affected joints.

All sorts of fluffy fleecy comfy day and night clothes, nothing tight or restricting. Knee warmers, ankle warmers, neck warmers, hand warmers, fingerless gloves.

Bed is an ordinary mattress with a memory foam topper and a Dunelm Mill Teddy duvet, (pale cream colour, it's cuddly like a teddy, has no bears on it,Google their Teddy range) I keep saying it's like sleeping in a cloud Smile In summer I use a mulberry silk duvet so it's cool for her.

All sorts of posture aids and cushions and throws on her half of the sofa to encourage good posture but also give comfort.

Aero Pilates machine with rebounder to take the strain off joints.

Salt lamps for negative ions.

Cushioned mats to make standing a bit easier, 2 garden kneelers gaffer-taped together is still small. I've just bought a very padded fitness mat in Aldi which I may use double in the hope she may stand in the bathroom long enough for me to wash her hair over the basin.

We've had very varying results with exercise. Despite logic saying gradually building up stamina by starting small and doing a little more each day, it just doesn't work. she decided to try last summer to see if she could walk a little without too much pain. Day 1 she got as far as next door but one and I nearly had to carry her back. Every dry day we did a little more and eventually she managed about 100 yards. The day after that, she was back to only a few feet Sad and hasn't made any improvement since.

Hopefully that may give you a few avenues to explore Smile

Runningtokeepstill · 20/01/2015 09:07

Thanks for the replies. I posted just after zzzzz replied and thought it had gone through successfully but apparently I must have junked it after the preview stage.

I'm sorry that so many others are having problems. Zzzzz, I had wondered about growth spurts too as he's been growing out of clothes recently. In your dd's case, hormones may be an influence on the shoulder problem. A friend's daughter had severe shoulder issues throughout her teenage years which came out of the blue as no-one had realised she was hypermobile previously.

I'd tried to post earlier that ds has already been down the Interhigh route. It was what we used for home ed when dh was ill as I couldn't cope with organising ds's education myself on top of everything else that was going on. We didn't continue with it after year 9 because (a) it was too expensive for our new financial circumstances and (b) ds found it all quite boring compared to being in a real life classroom. He's definitely much better when he is with other people. We tried correspondence courses after that but it was just after dh died so neither of us were in a very good state and, not surprisingly, it didn't work.

you are kidding me, thanks for the software suggestions. He is actually ok with typing, it's more the mushy brained issue that's holding him back. Although I am now wondering if this is as much depression as fatigue. He has tried pain medications but as his pain messages are all "abnormal" they don't really work unless he gets something like opiate patches and then he just turns into a zombie-like creature who cannot really function.

blanklook, I am so sorry that your daughter is in this situation at 22. Thanks for all your suggestions, we've used some posture aids and might look at these again. Ds is very touch sensitive when he is having a flare up so things like massage make him feel worse and so far he hasn't got on well with either hot or cold things. His temperature control is off too, but instead of being very cold he is almost always hot and is walking around in T-shirts when the rest of us are in jumpers and fleeces.

I had wondered about a TENS machine and might look into that again.

Thank you all for taking the time to reply to me. I am pinning my hopes on the adolescent pain clinic at Bath but recognise that while some people think it is wonderful, others haven't found it helped.

OP posts:
moosemama · 20/01/2015 09:42

It sounds like you and your ds have had such a hard time of it. Flowers

My ds2 has JHS and we've had zero help from the NHS. There is only one hospital in our area that knows anything about it and has a pain clinic for children and they've refused to see him as he was dxd by the wrong health trust.

He's 10 now and is struggling increasingly year on year. He is in severe pain every morning, finds it extremely difficult to get out of bed in the morning and misses school fairly regularly due to pain levels. Growth spurts definitely make things much worse.

I am also hypermobile and have other undxd/unidentified health issues that I believe are probably connected to the JHS, similar symptoms to CFS and POTs and some more severe. I've had lots of investigations over a number of years but am no closer to an answer or any treatement. I think much of the problem is how little is known about connectivity disorders and the extent they affect the body and even with what is known, the UK is lagging behind.

I have been recommended to try The Hypermobility Unit in London for both ds and myself. Unfortunately it's not available on the NHS, but I'm wondering if even just an initial appointment might be worth the outlay for your ds, as they really are the UK's experts of hypermobility.

senvet · 20/01/2015 20:52

Would GOSH have him back for an MOT as it were?

I am nowhere near as useful in suggestions as these other folk (my dd is not very hypermobile) but I can say that getting something to take your mind off seems good to me.

Like that lass and her dog who won an award at crufts - she was very ill with Ehlers Danloss and the arrival of the puppy had helped her out of that rut. The one where you look back and you were better, you look forward and you cannot see life improving, and you don't like where you are.

I am sure a puppy is way too much for most people to take on, but a puppy-equivalent can help - I think the official term is 'displacement activity'.

very good luck

Runningtokeepstill · 22/01/2015 10:52

Hi senvet. If we got a puppy for ds 3 we'd have to rehouse ds1 as he's severely allergic! But I know what you mean -some activity that stops you focusing on all the pain/disability issues.

I don't think a return to GOSH would help as they didn't really do much about the psychological issues when he went for his 2 week rehab aged 10 - their assumption was that he'd get picked up by local services even though local services made it clear they didn't believe they could help. Also, at 15, a bit on the old side to go back.

I'm pinning my hopes on the referral to Bath adolescent pain clinic being accepted as there doesn't really seem to be anywhere else for under 18s. Also may get some help from targeted youth support team - waiting to hear about that too. And waiting to hear about my ongoing official complaint about the lack of local NHS services for under 18s. Something of a waiting game all round.

OP posts:
Runningtokeepstill · 22/01/2015 17:10

Update
Just got a phone call from Bath Pain Services with an assessment appointment for next month. Really hoping they can do something for him.

OP posts:
blanklook · 22/01/2015 20:16

That's good going, fingers crossed for him.
Please let us all know how it goes Flowers

senvet · 22/01/2015 21:10

Great news about the appointment.
All fingers and toes crossed for that.

and Good Luck with the puppy-equivalent (?!)

PolterGoose · 23/01/2015 08:49

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Message withdrawn at poster's request.

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