Teenage daughter being investigated for CFS

[legodisasterzone]

Hi
I would appreciate any help or advice those of you with experience of this could offer.
Sorry,it’s lengthy!!!

DD2 (14) has been poorly for about 18 months now. She has got the following symptoms:
exhaustion,pale, struggling to sleep, sore throat,head aches, aches and pains,poor memory and concentration and lack of motivation. She can’t walk far without needing to rest and can’t do much in the way of mentally challenging work without needing a long recovery.

She had blood tests,which identified a Vit D and Vit B12 deficiency and she has had medication and 5 B12 injections. The deficiency is diet related,as she is lactose intolerant me vegetarian (her choice).

However,none of the medication made a bit of difference and she continues to be ill and exhausted. She is also on the ASD pathway -we removed her from school in the summer and now HE her due to the school not meeting her needs and a very traumatic and stressful school year.

Two separate GPS mentioned CFS -as her bloods are now fine and there is no other reason they can find for her illness. They said her symptoms match the CFS symptoms.
She has been referred to CAMHS for further investigations. We were told to carry on as we have been in the meantime (pacing her activities ,rest periods, fresh air, good sleep hygiene)

However, in the meantime, I’m worried sick. She seems to be getting worse and she looks so pale and poorly. I don’t know how to help her ,how much to ask of her or how much to let her rest.

Does anyone have any ideas or opinions please? This is all new to me and I feel like I’m winging it so far!

Oh and she isn’t depressed-she has anxiety and sensory overload due to probable ASD and it can be hard to separate all of her issues.
TIA

You haven't messed up. It's a learning curve and every day will be different. The variability is what makes me/CFS so tricky.

It might be worth having a look at the me/CFS disability scale and this will give you some rough guidance as to what she might be able to manage.

www.meassociation.org.uk/2016/05/the-mea-disability-rating-scale-2016/

If she's seeing friends later today then don't plan any activity until tomorrow afternoon. That includes stuff like bathing/hairwashing. You almost need to plan a week with rest periods built in so that she doesn't do too much.

I hadn't seen that document before, most useful. Cheers @MissisBoote

It's a good one. Useful to refer to if you need to fill in any benefit forms and just as a reminder for yourself when you think you should be able to do more than you can.

Make sure before CFS is diagnosed you have ruled out every likely condition. It would be awful to think of your poor DD going undiagnosed and suffering when something could be treated.

Is she at normal levels (not just normal) in all vitamins/minerals? b12 deficiency and iron deficiency can cause very severe symptoms not unlike this.
Do you know her thyroid results?
Has she had glandular fever? lyme disease? celiac disease?

Sensitive issue - but mental illness can cause fatigue like no other. Are you sure this couldn't be the cause? I have seen it in other teenagers. They struggle to cope with life as a teenager but their mental health presents this to them as physical symptoms.

Sorry I haven’t answered the post recent posts-been poorly and still feeling crappy!
I will be back tomorrow to reply properly x

Missis, thank you and thanks for the link. DH and I both put DD at 6/7. We have now decided to make a weekly plan,as you suggested.

We had no choice but to take her to a shopping centre yesterday. We kept her in one area,avoided unnecessary walking and built in lots of rest. However,she is ILL today 😔 and I feel terrible.
She looks like a ghost and has a really painful throat. Some rest days needed now.

Christmas, thanks for posting.
Mental health is definitely worth considering,I agree. However, she isn’t depressed (although she isn’t fed up of feeling poorly) and says she feels happy with life apart from the fatigue.

My older DD has mental health issues and DD2 thankfully shows none of the signs.

It’s part of my plan to get her bloods done repeatedly to rule everything else out.
However,despite huge doses of Vit D and B12 we have seen her decline.
It’s so worrying -she looks so dreadful today and it’s heartbreaking.

Hope you start to feel a bit better soon. It's important you're firing on all cylinders too.

A weekly plan will help. As will getting a wheelchair. Other things like earplugs will also help her when she'd out. Or if it's too noisy at home. They help getting rid of the background noise so it'll help with brain fog.

Prioritise getting some medication too. Nortriptyline helps with the constant hit by a bus feeling. As does pregabalin. Her gp should be happy to presctibe.

Other things I find useful are magnesium spray on my legs or a magnesium bath. You can get huge bags in home bargains. I use a third of a bag per bath. Need to stay in there for at least 20 mins.

Thanks Missis.
I’m still tired but trying to get some rest too.

They are all great ideas-we already use the magnesium salts but will do the baths more regularly.

I’m hoping the Occ Therapist we are seeing will help with the wheelchair issue-I will chase it up next week.

Sorry for all the questions,but this is an odd one: for a couple of weeks DD has said she has a horrible taste in her mouth. Have you heard of his before?

Yes!!! I had this for a couple of years when I first got ill. I couldn't get rid of it. It meant I lost my sense of taste, and then my appetite because everything tasted of nothing. Horrible as I love food. My poor husband was cooking up lots of lovely meals and I couldn't taste a thing. It's gone now though - thank goodness

Glad you are seeing the OT. She might not meet the threshold for an NHS wheelchair but they can advise on what size chair she'll need. Hopefully be forthcoming with some adaptions. Stuff like a shower seat. Anything that makes life a little easier is a Good Thing!

Ah,I feel for you that you had the same thing-imagine not being able to taste chocolate!!
Glad it’s gone though 😊
DD says she can’t describe the taste,just that it’s constant.

Thanks re the OT too-We have had good experiences with them in the past.

I’m making a GP appointment for her next week to look at meds and also to see what they can give her for her painful throat-calpol doesn’t touch it.
It’s been a pj day for her today 😊

My ds has Mitochondrial Disease. Pretty much all the symptoms you are describing are symptoms of Mitochondrial Disease. Please look at these websites: www.mitoaction.org/ and www.umdf.org/ and more technical, www.mitosoc.org/ . We are in the USA, but there are doctors and organizations in the UK too. Google ds' Pediatric Geneticist, Dr. Richard Boles who is the expert on Mitochondrial Disease. His website is: molecularmitomd.com/ . Dr. Boles is successfully treating the majority of his patients with supplements and sometimes off label medications. Ds went from non-functional 75% of the time (in bed with severe migraine and/or cyclical vomiting and/or chronic fatigue and/or non-working joints) to a relatively happy healthy boy (until puberty and bipolar hit, but now that he's 18 he's back to relatively functional and at school).
Vitamin D is one of the most important vitamins in Dr. Boles' supplementation regime (my DF is a well known scientist who works on Vitamin D and nutrition, so have had his blessing on all of this too.)
Please feel free to PM me for more specific information.

P.S. Just wanted to add that mitochondrial Disease is caused by mutations in the genes that regulate the function of the Mitochondria thereby causing multi-organ dysfunctions that are hard to diagnose. because you are only seeing one doctor at a time for the particular part of the body that's not functioning. Eg. Neurologist for the migraine, and Gastroenterologist for the cyclical vomiting and Psychologist for the depression/chronic fatigue when in fact they are all caused by the low levels of energy caused by the Mitochondrial Dysfunction caused by the genetic mutations....(In Ds' case he has Calcium Channel mutations and we are about to do Whole Genome Testing to find out what else is going on so we can treat him more precisely.)
Funny taste in mouth is a symptom of Mito. Also weird eyesight things, like peripheral vision going blurry when over stimulated or tired.

Whoops, meant peripheral vision becoming acute and the rest going blurry.

Sofia thanks for taking the time to post and for the links.
I will have a good read of them later.
I’m not ruling anything out- I am happy to look into any possibilities. On first glance,I can see she has a few of the symptoms,but not too many.
I will be asking the GP/paediatrician though.
Can you imagine the list I will be taking?!

Another question,really sorry..... for months DD has woken up with a streaming nose and keeps sneezing. She is really congested and we were giving her an anti-hystamine to help.

Anyway,it went away for a but is back this past week and is lasting all day-she needs to keep blowing her nose but she doesn’t have a cold or anything.
Conincidence or relevant?
Thanks in advance.

The way that mito disease was explained to me is that the body isn't producing enough energy so that if anything comes up that needs an extra burst of energy (like producing antibodies to fight off a cold), things go wrong because there is just not enough energy to go around. The cold takes twice as long to fight off and other parts of the body stop working. In ds' case it was often chronic fatigue (which could involve sleeping for 21 hours a day for weeks on end) or his hip joints would get inflamed and he couldn't walk (once when he was 15 it lasted for 5 weeks), or his eye sight would go blurry (once when he was 10 he went completely blind for 3 days).

I am in recovery from CFS. I had a similar experience with vitamin D levels v v low and iron too. Despite being on a prescription for both for nearly a year I still felt terrible. Couldn't get out of bed. Couldn't do the school run. Awful. Nothing helped - endocrinologist ruled out any issues there, coeliac ruled out, lupis ruled out. Etc etc. Lots ruled out, nothing found. I was told to accept my life as it was.
I saw a private nutritionist and she bombed my system with vitamins, supplements, magnesium over 8 months, and I'm well on the road to recovery. The doctors have no idea what caused it but it seems to have followed a virus and an immense amount of stress and simply my body giving up 🤷‍♀️ It's been 5 years since I first got ill. I've been on a waiting list to see a CFS clinic for 2 years.
Have your gp check for Lymes too.
Good luck.

lego, she's not had nearly enough B12 to make any difference to her deficiency yet. It's a complicated vitamin that requires large doses of not only B12 but also folate to enable uptake. I know I keep repeating this, but it can take YEARS of alternate day injections (or more) of B12 to repair the nerve damage. I was diagnosed 3 years ago and it's only in the last 6 months I've been back able to cope with relatively normal life (albeit with strict restrictions on exercise).
As she has a diagnosed deficiency in B12 and B12 deficiency can cripple you to the point of needing a wheelchair, please do look into getting her more jabs. If a patient has neurological symptoms and a B12 deficiency, the NICE clinical guidelines are for alternate day injections until there is no further improvement. Very few GPs seem to be aware of this. There's a very useful FB support group for B12 deficiency and pernicious anaemia sufferers. Most patients in the group in the UK self-inject because three monthly maintenance jabs on the NHS are hopelessly inadequate. The pernicious anaemia website is also very informative.

@legodisasterzone

For information delving into mitochondrial disease, you should check out a book by a medical professional (Judy Mikovits) who's been investigating CFS and similar condition for over 30 years. She has been arrested, and jailed, for sharing her thoughts. I've included several links about her, and her work, below. Her book - Plague - really opened my eyes.

https://en.m.wikipedia.org/wiki/JudyMikovitss_

https://me-pedia.org/wiki/Judyy_Mikovits

http://www.plaguethebook.com/plague---home.html

m.youtube.com/watch?v=M4CgRnpHktA

https://www.amazon.co.uk/Plague-Scientist%C2%92s-Intrepid-Retroviruses-Syndrome-ebook/dp/B00EBO2DNI/ref=sr11_1?ie=UTF8&qid=1543105769&sr=8-1&keywords=plague+judy+mikovits

I haven’t read the full thread so don’t know if anyone has suggested this yet: has she had her cortisol levels checked? They don’t often check them when doing a load of blood tests so I’m thinking possibly not. It could be worth checking for Addison’s disease even if just to rule it out.

Thanks everyone for the additional info-more for my list. I almost feel sorry for my GP.
She hasn’t had her cortisol levels checked,so will get into that.

six sorry it’s been another rough day for your DD. Awful isn’t it-and the knowledge that there’s bugger all you can do.

DD has been in the house for 2 days,in pjs,because she went out on Friday. The recovery time is so long and I feel like you-we can’t just go on like this.
Sending you

Sounds like my B12 deficiency. I need levels of 800 to feel well.

Well,after DD woke up really ill again this morning,I rang the GP surgery. I asked to speak to the doctor who previously worked as a paediatrician.
She went through all the bloods and said there’s nothing there to explain how DD is feeling and that all the levels were above average.
Didn’t go through all the levels yet-seeing her at surgery later .

She says that in her opinion,it is CFS. She is checking DD over later and says she will refer her to hospitals in other surrounding areas to try to speed it all up.

She was actually really nice and I think she will be supportive. I have a list of questions for later.

six how is your DD today?