Chronic Fatigue Syndrome

[Frances123456]

Daughter ( early 20's) just had diagnosis of CFS/ fibromyalgia.
Any advice from people? . Duration of syndrome? Advice on future occupations? She is a clever girl ( and passes A levels) and was doing acting in amateur company and has worked part time in retail. She has suffered with symptoms for nearly 2 yrs.
Thank you

If you have Fibromyalgia then you have it for life.

I've got both, had them for 11 years now. What she can do depends on her and how it affects her, and the day as it can change. Get her to have a look at spoon theory to help explain it to people. Sadly there is a lot of stigma attached to both conditions. She may find that doctors also blame a lot of things on her CFS and fibro, so if you think it's unrelated you need to push. I had this recently and they only did an xray to humour me - turns out I have deformities in both hips and moderate arthritis (apparently this is "significant" for my age).

thank you.
Hopefully it will improve. She will start treatment in the next few weeks.

I had CFS in my 20s after Glandular Fever and it did take me a long time to recover. To be completely honest I’m not sure I ever fully recovered, I still tire easily, need a lot of rest and have a poor immune system. However, I’m happy and reasonably successful with a lovely family so it didn’t hold me back too much. People and medical professionals did treat me quite badly when I had it, I got a lot of people thinking I was just lazy or depressed. I was very lucky to have fantastic support from my family and my Uni were great and let me split my final year over two years so it was manageable.

Has her GP fully ruled out any deficiencies?
Ferritin (iron stores - ideally at least 70; but can run too high if there's inflammatory processes at work)
B12 & other B vits (serum levels - standard GP test - of b12 can sometimes appear normal and mask deficiency)
Vitamin D (ideally 100-150nmol)
Magnesium & folate
No food intolerances?
Thyroid and hormones?

I'm sure you've run the gamut of questions and done your own research, and that GP has run blood tests! Only asking because you could easily be told that everything's in 'normal range', when she could be at the low end of normal or have sub clinical deficiencies. Current nhs guidelines for nutrient levels are often out of sync with current research. If you haven't already, I'd get all her readings for any bloods done and do your own research on them.

Apologies if it appears as if I'm trying to re-diagnose her! I'm clearly not a doc but I did have ME/CFS in my late teens/early 20s and in retrospect it's highly likely I had low ferritin and vitamin D, as well as undiagnosed depression! Addressing some allergies I suffered from and going on a gluten free diet really helped at the time. It's a difficult thing to cope with at any age, but being young too is especially crap. I wish I'd had the mental skills to manage expectations and simply not be so hard on myself. But one positive thing to come out of my experience was just feeling responsible for my own health: doctors and diagnoses, and medication, are all important and can be useful, but they should form part of a bigger picture I think. It can be trial and error but some 'alternative' medicine, herbs and nutrients, can and do help, as does viewing your health and how your body is functioning using a different paradigm that suits you. I had an amazing acupuncturist and became very interested in Chinese medicine, for example. It changed the way I looked at my health, and the way I treated my symptoms, with a lot of success.

I'm not putting anything hokey or 'woo' as a cure but I do think that while CFS and fibro are actual diagnosable illnesses with specific physiological causes & symptoms, they're often just used by docs as umbrella terms that suggest they don't reeeeally know what's going on, or explore further. Certainly that was the case when I was diagnosed; I would hope the medical profession has more research and insight to work from nowadays. In my personal experience, that's why I found other approaches helpful. And I wish I'd had the knowledge in my 20s that I do now!

Not sure any of that's helpful. But if a lockdown waffle. But I do know how it feels to be young and given a seemingly hopeless or long term diagnosis. X

Bit of, not but if 😩

My DD has had fluctuating levels of fatigue all her life, has never been able to physically do what her peers could. She also has other conditions, some of which e.g. hypotonia can cause fatigue.
She's seen a lot of specialists since childhood and they can and do contradict each other about what her fatigue is. Currently she has a CFS/ME dx.

Her fatigue seems to happen spontaneously as well as when she's over-exerted herself. She's never had a good level of energy and has always had to try and pace herself, not a great way to manage it when you're so optimistic about your own capabilities hence the need for me to step in, but some days she can do as much as she can and be fine afterwards, others are just a complete write-off from getting up shattered despite not having over-exerted herself the previous day.

It also seems to go in phases, she'll be on a down phase for months where every question along the lines of what would you like to eat, or do, or what do your think, or which would you prefer, is pretty much answered with don't know and don't care. In that phase, every day is a pyjama day because she's so shattered she can only just eat and drink. Bed, bath, sofa days.

Then sometimes overnight, sometimes gradually, that changes and she's brighter and more engaged and wants to do things because she's able to do things, albeit nowhere near as much as her peers, ever.

I've kept records over the years trying to see if there's anything that triggers it, any patterns, food, exercise or anything else and nothing stands out at all.

One thing we found didn't work we Graded Exercise Therapy. it was fine for quite a while doing a little bit more every day and it gave her a sense of achievement, then with no warning, she had an almighty crash and was back to bed bath, sofa.

One thing she found a few years ago that made her feel a bit more like herself was taking a daily multivitamin and mineral supplement (Aldi's own) and extra VitD3. (BetterYou DLux 3000)

The Spoons Theory is a good way of explaining it to other people, most of whom "don't believe in it" and can be less than complementary about it.

Has she ever had a tick bite? I have Lyme disease which was misdiagnosed as CFS, so it's just worth bearing in mind.

I have CFS. I had a glandular fever in my teens and then had years of being pretty normal although prone to catching infections and not having as much energy as other people.

I got very poorly with CFS in my 40's after a few very stressful and busy years. It took me a couple of years of pretty much not leaving the house to get back to a sort of normal. I now have mild CFS that I manage by not doing too much. I work full time and socialise a little, but I have to make sure that I listen to my body and take care not to push myself.

I think it is important for your daughter to learn where her limits are and not push beyond them. Plenty of young people make full recoveries in time, but she needs to be prepared to take care of herself and not try to rush herself better.

I've had both. (ME for four years, FM 20 and counting)
They need to be treated differently.
Thing a that help both:
Absolutely no gluten (check everything) a little mistake will make me crash for a week.
Do a fodmap diet to establish any other likely culprits.
Acupuncture regularly
CPD oil (I use the one some rugby players make) hugely helped me.
Mindfulness daily
Bodyscsns. Fucking amazing. I do about 20 a day and make the tensed bits relax.

ME
In my opinion your body thinks it is ill and makes you stop by exhaustion. You need to trick your bodyinto thinking it is safe to get well. Be very steady, work out how much stuff makes you exhausted and always do less. Eventually your body thinks it is is safe. Carry this in for a couple of months post feeling better to prevent relapse. Only exercise a little.

1. FM. If NOT ME then exercise is your friend. It will hurt like fuck for the first 15 mins but then will be a bit better and is amazing. You also need to rest and listen to your body whwn having a fatigue time but keep exercising.

With ME I had to stop work for 2 years. With FM I have 3 kids still living at home and work almost full time.

Poor daughter it is rubbish x

Ps I no longer have ME (for about 12 years)

Was she diagnosed by a rheumatologist?

And agree with above, has she had vitamin B12 and D checked?

Hope others will be able to give advice, but just a quick note.

My boss was diagnosed with CFS but after pushing for further tests, he has an immune deficiency, and gets regular blood transfusions which makes a difference.

Worth ruling out.

Invest in this: amazon.co.uk/dp/110196720X/ref=cm_sw_r_apa_i_eAbTEbJM7VTR3]]

I've had FM for nearly 25 years. I went to support groups, thought I'd read everything useful on the subject, followed all the advice, and yet I still really struggled. It turns out this was the one book I needed.

From the first page I felt like this doctor really 'gets it'. After following the suggestions in the book I finally felt like I was getting somewhere and now I'm a busy mum with soon to be 3 children so there is hope! It's a great reference book and I'd definitely recommend it.

@littlepeterwimsey but CBT is the best treatment, many studies have shown that. It's heavily, heavily linked with depression so yabu to say that

cfs (imo) is a bit like a 'go away' diagnosis.

as above, have the usual suspects been ruled out?
iron, b12, d3, thyroid

has she been tested for allergies? especially mites/feathers (bedding) or pet hair as allergy symptoms can be chronic fatigue.

I hope your lovely daughter recovers, fatigue is shit.

I have found a diet that cuts out carbohydrates except for those found in vegetables has made the most amazing difference to my joint pain.

Hi
Thank you everyone.
My daughter has been referred to a specialist unit ( and started with a telephone consultation this week). she has had blood tests that showed low level of vit D. Thank you about B12 and thyroid test levels. I will suggest she takes the B12 as well as vit D and reduced carbohydrates. She did suffer with glandular fever nearly 3 years. ago. Husband suffers with psoriatic arthritis so immune deficiency in family.
Thank you everyone very much for your help.

She might need B12 injections, there’s a fab group on Facebook that can give you good advice, called Vitamin B12 wake up. I’ve had CFS/Fibromyalgia for years. I think it’s a catch all term for similar symptoms with different causes, hence why some people get better with certain treatments. Pacing is the best thing you can do and start building up small amounts of exercise.

Agree with the B12 advice. I also inject B12 and found it makes a huge difference to my energy levels.

If your husband has PsA then I highly doubt she has fibromyalgia and cfs.

The likelihood is that she has an autoimmune disease, they run in families.

I'd be tempted to say a lot of her symptoms will come from D deficiency. Don't take the supplements prescribed by GP, they're usually full of crap and not strong enough. There's a great fbgroup for D deficiency called VitaminD and co factors UK - it uses an evidence-based protocol, based on current research. D should be taken with magnesium and vitamin K2mk7, and boron; this ensures optimal and efficient uptake of D without problems associated with supplementing high-ish doses (which she'll need if she's low). Without cofactors, she might experience a worsening of symptoms and possible hypercalcemia.

B12, if it's low, would respond to injections. Her bloods might show a 'normal' level but this doesn't preclude a underlying deficiency. Sublingual oral supplementation is the next best thing. Jarrow is a good brand.

Good luck, I hope she gets back to full health soon!

If her vitamin D was low, that is definitely something to work on. I had low vitamin D and I truly thought I was going to die. It was initially thought to be some sort of inflammatory arthritis - I had joint pain, swollen joints, could barely function, hardly enough energy to walk up the stairs. Some days I just couldn't even get out of bed. This is after being previously healthy, long distance runner, busy career, two small dc. I truly thought I must have had cancer, because I couldn't understand how anything else could make me feel that bad. I was sure I was dying!

You have to take a really high dose of vitamin D3 to start. I took 4000iu a day plus an extra 10,000iu loading dose every week for 10 weeks. I felt almost completely better withing about a month or so. I've never had a recurrence. I can't even begin to tell you what a difference it made. That and the B12 definitely need to be remedied before she considers any other treatment. There's no reason to be saddled with a life changing diagnosis if it's something easy that could be fixed with some supplements.