Dd17 diagnosis of Chronic Fatigue Syndrome

[joell75]

After months of illness and diagnostic test, my 17 year old has a diagnosis of CFS. We are trying to absorb this and doing a lot of reading. Wondering if anyone has any experience/advice/anything that has been useful?

My ds was diagnosed as a toddler. Youngest in the NE apparently..lots of info to download for you(aimed at education providers) to hand deliver to the school /college op. I guarantee they will have no idea of the 'allowances' they are obligated to make for your dc. Ds has just turned 18. Lots of issues at school . Including detentions for falling asleep in class!!

That's awful! I'll have a good look for that info. Has there been anything in terms of therapies that has proved useful?

Ds was diagnosed last year, he had had to leave school midway through his A levels. He is also being investigated for Ehlos danos syndrome as well.

Sorry to hear about your daughter. There's a very good book, Facebook page and website by Sarah Myhill with a lot of info.
Has she been checked for POTS, low range thyroid but can still be told it's "normal", low B12 again can be told "normal" but can be very low.

I'm sure those tests have already been done, but worth checking.
Pacing herself is the best advice, don't try to push through it will make things worse. Hopefully you haven't been pushed towards CBT and GET asa a "cure", the NHS guidelines have just been changed because of the damage that has done in the past to some people. CBT can be useful to help accept things but this is very much not a mental health problem, it's neurological.
Sr Myhill is the best resource I have found. Also check out Health Rising by Cort Johnson on Facebook and website, brilliant for research and treatment ideas to try.
CFS is very underfunded in terms of research but since long covid more work is being done, there is more hope than ever before for treatments.

My daughter has it , she’s 22 and has had it since she was 11 . Between 13 -16ish we went to the unit at Kings ( Denmark hill) she tried CBT with them that failed and then tried graded exercise which we stopped after 2 weeks as it was likely to make her worse . Graded exercise has since been stopped as a treatment as it’s been proven to do more harm than good . She has had some reasonable periods of health in the last 10 years but they are never sustained and at the moment we are grateful that she can have a bath every other day !

Sometimes it's difficult for someone with CFS to explain the level of fatigue they have day to day. The Spoons Theory is widely used and understood butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

My DD has had CFS since her mid-teens, so about 14 years.
She also has hypermobile joints and has never been as physically able or capable as her peers.

GET caused her to crash in a massive way, I'm delighted it's no longer in use.

I suggested an activity the other day and she said 'Not today Mum, I only had one spoon when I got up' which I understood immediately.

Other people tend to be dismissive, they often don't understand that just because DD can do something one day, it doesn't mean she will be able to do that thing in the same way the next day. Explaining the spoons theory can be a good way to help them understand too.

I was diagnosed at 16 (it all started after a viral illness at 14).

For me GET was terrible. Like others have mentioned, I am so glad it is no longer used as treatment for CFS.

The most important things to do are to try and make sure she is eating and drinking enough. I would get so dehydrated as I was sleeping for 20 hours at a time ... it just exacerbated the condition.

My CFS goes through peaks and troughs, and I have learnt to make the best of the peaks. Brain fog was also a big problem for me - I really struggled through my A levels and I wish I had taken some time out before attending university (against my doctors wishes).

I also wish my teachers had been better informed - however I think there has been an increase in the awareness of CFS in recent years.

I have become much better at understanding my body and managing this illness over the years. The hardest aspect overall was seeing my peers move forward in their education/careers as a faster rate. I got there eventually ... it just took a little longer. Listen to her worries and keep an eye out for depression.

I'm in my 50's now but have had M.E/CFS since I was 18, following Glandular Fever.

I've had times feeling relatively OK and times when I have absolutely no energy and feel quite deathly.

I recommend you look at the M.E. Association website. They have lots of useful information.

Recently I have had good results from The Perrin Technique. Again, I suggest you read up on it. It's basically a lymphatic drainage technique that is delivered by a trained chiropractor. The earlier you start treatment, the more effective the outcome can be. It has certainly made a difference to me though there is some scepticism in some M.E. medical circles.

There are several M.E. groups on FB, and also a Perrin Technique one if you want to join and get more help/information.

I wish your daughter well and hope she makes progress in recovery.

I have CFS and ME. I've had both for around 15 years now. The condition is now being given more funding and more awareness following covid or long covid. There's groups online The mayo clinic and there's a fibromyalgia support group too.
It's a condition that varies period to person, hour to hour. Today I woke up feeling not too bed. By five pm I'd collapsed and had been carried to bed. I think for me the pain and brain fog are the worse symptoms. Closely followed by slurred speech and exhaustion that can hit you like a truck, or drag you down for weeks on end. Someone mentioned the spoon theory above. It's a good way to explain and let others know how you are doing. It's a condition that manages you rather that the other way around.
If you or she wants to message me anytime- feel free I was diagnosed late 20's and I'm 41 now with 3 children.
Take care x

Sorry to read this. Thanks for the link to the Spoon theory. It describes my diabetes well. I too have learnt that most people don't get it, the thought processes you need to go through, that they've never needed to do.

It's a hard time for her to be diagnosed with this. Shitty timing when all others are off learning the drive, planning Uni etc. Eventually acceptance will come, and she will be forced to accept what she can and can't do. Probably anger and resentment, why me? Is to be expected aswell.

My big sis was diagnosed with cfs and fibromyalgia several years ago. She's just had her vitamin d levels checked and add the gp said, it's in her boots. Turns out that many of the symptoms are the same, so if this hasn't been checked, might be worth doing so.

Thank you all so much for your comments and advice...it gives me hope! The worst symptoms are the pain and the dizziness. She woke in the night last night and was, quite literally, wailing as her belly hurt that much. That was a new one. But shes in constant, severe pain all over. The painful pricking in her hands and feet, too that goes on for hours and she finds it unbearable. Is this level of pain to be expected? Two weeks ago she was just about attending college ok, but now it's a completely different picture. She has stayed at home this week, in an attempt to stop the post exceptional malaise - she has barely moved - but it gets worse and worse. Is this to be expected? Is it in keeping with your experiences. The dr told us today that its worsened so much this week "because she has got a diagnosis". So it begins, eh?

It's such a difficult and misunderstood illness. I was 16 when I was diagnosed. I was fortunate to be able to take a year out of education before starting college which massively helped me start on the right foot. The pacing element is so hard at that age, she's going to want to go on nights out but then crash for days, hopefully she will strike a balance. The peer pressure and comments of 'you're a young lass go and let your hair down' was not a help. The Spoon theory mentioned by another PP is a great way for her to explain her energy levels.
I'm just hopeful that now it's getting some attention from the science/Medical world because people with long covid are being diagnosed that some progress is made.
I hope she is gentle with herself, it takes time xx

Sorry to hear this. Useful places for support: ME Association, Action for ME - they have sections on Education, supporting young people etc, and Tymes Trust. Rest, rest and more rest!

Another one here saying rest! As much as possible, especially in the early days. Then it’s all about pacing.

I found this site quite helpful when I was first diagnosed- didn’t do any of the courses, there’s loads of information up on the site you can just read through at your own pace

www.cfsselfhelp.org/