Teenager with suspected CFS

[Combinatorix]

Hi, just wondering whether anyone has any experience with having a teenager with CFS. Dd(15) has had symptoms for 7 months and the paediatrician still wont refer her to the CFS clinic

My DS has had some kind of fatigue for about 3 years now. He is 18. In our experience the CFS clinic wasn't much help for a teen. DS is able to go to school though and have a part time job. He is tired all the time but he does still manage to do a lot. If your DD is severely affected and can't do much at all then the clinic might be more helpful.

Things that have helped us:
Graduated exercise - depends how bad her symptoms are but small bits of exercise helps DS. He's joined a gym and does lots of time in the pool and sauna and has worked up to some weights etc
Acupuncture - no dramatic cure but it got him out of a bad rut and looking back did improve things. Therapist suggested floradix tonic and that helped too.
Counselling / CBT - didn't make a huge difference but helped him come to terms that there is no magic fix.

He spent ages on line looking for a cure and it was hard to keep him from buying supplements, subscribing for things etc which looked like a scam. There are a lot of people cashing in on vulnerable people.

He's doing a levels now and it's amazing that he's just got on with it and not got too down. So much is about state of mind and keeping focussed on what they can still do. It is tough OP when they should be so full of life and busy all the time.

Thank you so much for sharing your DS’s experience.

I suppose I don’t have very high hopes for the clinic, but at the moment it just feels like we have been abandoned!

DD’s school attendance is about 50%. if she does any exercise she seems to relapse, but swimming (well sitting in the water) might be something she could try.

It’s a good point about state of mind, will try to focus on the good days!!

Yes.

My DD developed symptoms from when she was 16. CFS clinic accepted referral but by that point she had dropped out of school completely after about a year of basically going in part time. The fact she was NEET was I think significant.

They saw her about once a month. It was in person but they offered telephone instead if wanted.

I'm not sure it's necessarily as useful as you think it is - I attended the appointments with her and it was mostly education about sleep hygiene and pacing etc.

She had already done a course of CBT as she had significant pain which at the time was diagnosed as fibromyalgia.

As part of the referral they insisted on blood tests to rule out various other possibilities as CFS is a diagnosis you are supposed to only get if you don't have anything else.

My DD in fact turned out to have hashimotos thyroiditis which is an autoimmune disorder and she was treated by an endocrinologist. She is now back in education part time.

Could it be hormones or migraines without the headaches? Both cause me to experience extreme fatigue. Make sure she's getting enough iron too, liquid supplements are best. Always worth exploring other avenues if you are struggling to get help.

Thank you Octavia64, I don’t have high hopes for the clinic at all. It is just very frustrating to be offered nothing while my daughter struggles to even get out of bed.

She has had very extensive blood tests which haven’t shown anything. The GP is of the view that there is nothing wrong with her.

I've had various doctors tell me there's nothing medically wrong with me over the years. Once when I was in a wheelchair, in so much pain I couldn't walk. I have hypermobility, which unbeknown to me had been controlled by the contraceptive pill, but as soon as I came off it, my natural hormone cycle loosened my ligaments so badly I found myself immobilised. If course hormones don't have any involvement with hypermobility as far as the doctors were concerned 🙄.
I once had my prolactin levels tested because I was leaking colostrum when I was definitely not pregnant. My levels were deemed normal. Obviously they weren't or my breast wouldn't be leaking.
My periods were deemed normal despite being unable to stand due to the pain each month and constant heavy flooding. I was told to take some painkillers and crack on.
Unfortunately you have to do the process of elimination yourself. Don't get fobbed off with a fibromyalgia diagnosis either as once you've been given one of those, it will be the cause for absolutely everything for the rest of her life.

Ask your GP to refer your daughter to a paediatrician, there are lots of exclusion tests needed before referring to a CFS clinic.

Have a look at Bath Paediatric CFS clinics website as there’s lots of information on there. Might not be your local clinic but the info will be really helpful.

CFS clinic is specifically about coping with fatigue that is not medically explained by something else.

So it is aimed at teaching you how to cope with your new life. They'll try to teach you about pacing etc etc.

It's not aimed at making you well. They don't know how to make you well.

If your GP won't refer to CFS clinic then

Either you want to investigate what's causing the fatigue in which case the CFS clinic is not the place

Or you can go private for CBT on pacing/sleep hygiene etc which to be honest is basically what the clinic offer.

Thanks DelilahBucket, that sounds awful. I’m so sorry you went through all that.

Has the paediatrician actually diagnosed CFS?

They have said that is where they think we will end up but (as everyone has said) it is a diagnosis of exclusion. They told me that the next stage would be to refer as CFS but they can’t do so until her bloods are absolutely normal, she has very slightly low vitamin D so needs to take a supplement for 3 months and retest. The dr was very clear that the very slightly low vitamin D is not causing her symptoms and nothing else showed up on the blood tests.

I am just not sure what I should be doing to help her

Just to clarify

We have had several GP appointments, bloods came back clear. GP told me that as the bloods were clear there is nothing wrong. I asked for a referral to paediatrics (by this time she had missed nearly 3 months of school.

we waited 3 months for paeds referral. That Dr said would do more blood tests. If nothing showed up on blood tests they would refer to CFS clinic (as they would not know the cause)

second paeds appointment was six weeks later. Bloods all normal except slightly low vitamin d.

I know that the CFS clinic can’t fix it

I'd make sure they rule out any other causes first, as there are so many treatable (but hard to diagnose) conditions that doctors can too easily put in the CFS bucket.

I was told I had CFS at various points, I now know I always had Myasthenia which is treatable.

Either way, for all these conditions one of the key things is pacing. Not over doing it, building in plenty of rest. I know it's rotten though, particularly as a teen

Also "bloods normal" does not mean "nothing wrong" and it's so misleading when doctors say that. They never ran the specialised myasthenia tests for me (as an example) so of course my bloods looked normal - they weren't testing for my condition

I was told I probably had CFS a few years ago - turned out to be my iron levels. I only found out when I asked to look at my results myself. I had been told they were normal.

this video is excellent - a dialogue between some of the best experts in teh world and parent of child whos recovered