Any teenage dc with hypermobility, chronic pain and chronic fatigue syndrome?

[Runningtokeepstill]

Hi, I wasn't sure if this was the best place to post as mostly here it seems to be younger children's health issues.

My ds is 15 and has a dx of hypermobility syndrome and chronic pain syndrome. He's struggled with pain issues but has recently gone crazily out of sync with his body clock and is rarely out of bed during the day time. I've tried to work with him to reset his body clock by trying to get him up a little bit earlier and then progressing but it doesn't work as he is completely exhausted and this sets off the pain so that he cannot get out of bed or walk around at all. He then collapses back in a heap.

He's taking GCSEs soon and has been totally off school for the last 4 months when this pattern started to kick in. He feels grim at nights too so even if he is awake he doesn't manage to study then. I had thought it was depression but as he's fairly normal, if not very mobile, between the hours of around 6 and 10 pm I don't think that can be it. He's even quite chirpy then and on most days can manage a short walk around the block with his brothers. At this time of day he's quite optimistic, feels he can get on top of life again but the next morning it all goes back to how it was before.

Does this ring any bells with parents of children with CFS/ME? Or is it just an extreme sleep disturbance that's affecting his other health problems? No-one medical locally knows what to do with him. He's waiting for an inpatient pain management place at a national hospital but we don't know when this will come through.

Hiya

I am so sorry your DS is struggling so much, I know how utterly soul destroying it is when your child is so ill & you feel powerless to help, as parents we are meant to fix things for our children so it is devastating when we can't...
My DS also has chronic pain & suffers from exhaustion, he also struggles in the mornings as its then that his pressure in his head is at its worst after being horizontal for a few hours. He has Syringomyelia & has been getting steadily worse we are waiting for his next Neurosurgical appt & they have upped his pain meds. He is very depressed though as the prognosis is poor.
CAMHS have just changed his anti depressants as the fluoxetine wasn't helping.
Apparently they say its normal for someone with chronic pain to be depressed & they told us with my DS that the exhaustion was in part a symptom of the depression.
It must be so hard for them to deal with puberty & normal teen worries topped with all the pain & exhaustion.
Would it help to ask GP about a depression questionaire or perhaps find one online for him to answer? Just to check. Which if he is depressed maybe treatment may help him feel better?
My son is dire with his timekeeping and we regularly have run ins trying to get him to go to bed earlier. We have found him up still at 5h30 & making noises at 2/3am at times.
Where I struggle is trying to know when to be firm & when to be sympathetic & understanding.
He feels better after being up a while so fluid can drain and then when he feels better he doesn't want to go to bed... so the cycle continues.
Sorry, my ramblings probably aren't much help, but just wanted to say someone cares & its horrendous, but from your post I can see you're a caring Mum. Remember to be kind to yourself too sometimes.

Kind regards
Ditsygirl

Hi Ditsy. Thank you for taking the time to respond and you certainly haven't been "rambling". I am sorry that your son is having a tough time too. I don't know much about Syringomyelia except I've come across it when looking at Chiari Malformation which my son has very slightly but not to an extent thought to be significant - might catch him out in later years or may never be affected by it.

It is hard to know how to pitch things as a parent. I waiver between different attitudes. I aim to be calm, positive and supportive (but firm). But sometimes I just go with the flow and at other times I end up shouting with frustration. Really, though, if my ds could improve his life I don't think he'd continue to live it like this. He's not in the position of your son, in that he has evenings when he is relatively mobile and able to do things and I'm trying to get him moving more then so he can build up some stamina and use enough physical energy to want to sleep.

Our CAMHS won't support my ds as they feel they cannot work out what is caused by mental issues and what is caused by a physical complaint. This is the same on the physical side too as he doesn't respond to pain medications short of opioids and they just knock him out. He's tried meds like fluoxetine and gabapentin but they haven't worked either.

Today, I think he's overall not depressed or suffering from CFS/ME. I think he's just got out of sync and anxious and then it's hard to break the cycle.

I'm so sorry that there hasn't been much positive news for your son regarding this condition. Are there any support groups? Often medics focus on the treatment but those experiencing the condition themselves tend to have a better grip on how to cope on a day to day basis.

My 13 year old has CFS. She does not have the pain and hypermobility, but (like your son) she is also semi-ok in the evenings but completely exhausted and groggy in the mornings and after her nap (1 and 1/2 hours early afternoon).

I don't know how useful our experiences would be for you to hear about, as the trigger for our daughter's fatigue was a virus, so a different case really.
I will write down a few thoughts though, in case anything is relevant.

Taking all the pressure off our daughter was very helpful. She has withdrawn from school completely and we stopped trying to get her to do things she was too tired to do, as we noticed that she always suffered several really bad days after any unusual exertion (even something like a short walk or going to one class in school).

Also helpful for her was going to a private doctor (who was also a naturopath / nutritional therapist) who ordered very detailed blood tests and stool sample tests not available on the NHS. Our daughter had a zinc deficiency and several other problems which we have been treating with supplements. Our daughter is slowly getting better and of course we don't know for sure that the supplements are what made the difference, but that is our impression. After lots of reading, we believed that CFS is often caused by mitochondrial dysfunction, so we looked for a doctor who works on treating this condition.

We have found the NHS doctors completely unhelpful, often dismissive of her problems (even when she was suffering the most extreme fatigue and discomfort), and suspicious of our parenting (insinuating that our daughter had an eating disorder which we were lying about, for instance). The doctors who knew us have been kind and sympathetic, but completely unable to offer any help; the consultants have actually been worse than useless.

I just want to say that you have my complete and heartfelt sympathy. It is so devastating to go through this experience. On top of the worry and fear and sadness, there is the isolation and the frustrating experience of dealing with baffled doctors. I wish you and your son all the best luck in the world-

Sorry x-post. I see your son is most likely not suffering from CFS, so my ramblings are not really applicable. Still- lots of good wishes-

I'm an adult with ME / pain issues, since early 20s; and also do better with back to front body clock as it were and know a number of others with similar collections of conditions that also have this time issue, as well as having read about it being a symptom often present.. I give myself a hard time for not gettin better bedtimes and then feeling worse in mornings, but have found I still end up rising late wtc even whe. Go to bed earlier, so I really do think it's to do with the conditions, not just not sorting bedtimes!Add the need in Teenagers for longer sleeping, I can sort of understand his way of time keeping