Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Late to the thread I know, but the title caught my eye as I suffer extreme Neuro-fatigue due to MS rather than ME, but it's seriously impacting on my daily life and I'm really conscious of that aspect with two young children.

Do any of you struggle with toddler/primary school age children/partner, and find it hard to juggle all the balls without making yourself more ill in the process?

I really struggle, and because it's an invisible illness, find that even my partner doesn't really get it. If she looks fine then she must be, is how he wants to think views it.

I hate being so constantly tired. "Mum do you want to play this?" Is met with "sorry I am too tired, but I can give you a lovely cuddle?" And it feels unfair to my children

I don't like fobbing them off onto carers as they detest it and it makes them clingy, especially at night (waking and calling out for me). How do/did you all cope with raising a family and your fatigue?

I think we all just muddle along trying to ignore the gnawing guilt that we're letting people down.

I find that I've really tried to prioritize the kids and dh so have got very good at saying no to things that I know will drain my energy leaving less time to spend with them.

I also do the bare minimum of housework and accept offers to run the Hoover round etc. It does get easier as they get older as you don't need to be so physically active with them. I try not to say that I'm tired - just say that today I can't do X - mine are old enough to understand the spoon theory which helps.

I have constant guilt :( My daughter, at 3, knows enough to design 'lying down games' for us to play, where I can engage with her while lying on the couch or floor. It is good as it works, but it makes me sad that she has to have figured out to do this.

katy, I just finished reading that catalyst page (I couldn't get the video to load, so read the transcript!). That is fascinating. I actually wonder if I could do something like that -- one reason I wonder if I truly have CFS/ME or something else is that I'm pretty good with exercise. I haven't to read any of the other links yet (everything takes a long time!), but I wonder if I might have a mito problem doing something like that to help enhance mito function would be helpful.

fuzz and heymac, I hope your work meetings go as well as possible!

Yep I have that issue too...
I remember clearly when dc2 was about 2yo not being able to play games with him because as soon as I stopped and sat down, I would fall asleep. I was fully working on adrenaline and making myself more ill in the process.

I agree with other PP, the only way it works is with minimum housework and giving a lot of the cleaning/tidying responsibility to the dcs.
My dcs are older now (10 and 12yo) but for a few years now they have been in charge on clearing the table, filling and emptying the dishwasher, tidying up their bedroom and running the hoover in their room.
In effect, a lot that is considered actually OK for them to do at that age but very few of their peers actually do.

I agree too about not saying 'I'm tired'. I tend to propose other things and by now, they have learnt that I don't do walk and active stuff with them :(.

Can I ask, do any of you have pains at the surface of the skin?
I've been very tired lateky and some weird symptoms have popping up, including that one.
I can't quite describe it, it's like sharp at the surface of the sking and feels like it would be better for a nice hot bath, except that it's not that much better after said bath....

Oh, thanks for that functionality scale, over. I think I'm somewhere between 50 and 60, closer to 60 (given the chance, I will rest 2-3 hours in the afternoon, but can only do that on weekends and my one afternoon off, and the other days I do go straight through). DH is probably about 40. Does that mean we make 1 full person, summing us together? :)

So I don't think I'm too severe. Although I am a bit freaking myself out after reading about that active man who came back skinny from a trip and now can't get out bed. My eating problem continues to worsen, as now I can feel ill just from snacks in the morning. I'm also running out of clothes! Trousers that fit two weeks ago were loose and baggy yesterday.

I'm really wondering about the mitochondria stuff. I've now watched the video sofia posted most recently, but I have to make my way through the websites. One thing I've found is that my body at times seems to 'shut down'. I feel like I can't get up, I get very cold, and at times I'll even start shivering. I found that if I do get up and do something very active, like running around with DD, I can actually feel better. It's like doing something jogs something 'on' that wasn't before, and my body decides to use stored fat for energy whereas before it would only use immediately ingested food. I had always felt like my body simply refused to burn fat, and based on the calories I ingested (1200-1400/day) and yet still gaining weight, it seemed like it. Now, even though I'm dropping like a stone for the most part, if I eat in the afternoon, in addition to being desperately ill, I'll also feel that terrible lethargy, get cold, and shiver. And I'm often 1-2 pounds heavier the next day! When there is no way an extra slice of bread on top of what is likely a very low calorie diet (I admit to not having measured yet, as I'm a bit scared to know) could possibly have been so many extra calories.

Oh, feeling bad that I do tell DD that I'm tired :( I also tell her that I need to lie down, because that is one of my POTS-coping techniques. So I can play games like lie on the floor and try to grab her as she goes by.

Out of interest, why is it important to avoid using the word 'tired?"

Imo the issue is that tired means different things to different people.

If my dcs say they are tired, it means they can't be bothered to play football and would rather watch a film. A good night of sleep solves the problem.
When I say I'm tired, I mean wiped out, struggling to go up the stairs etc...
I don't think they really 'get' what it means nor do they get why it's OK for me to say 'I'm tired, you'll have to cook dinner' to DH but they can't say 'I'm tired, I can't tidy up my room'.

So I much prefer to say 'I can't do xxx today. Shall we do yyy instead?'

pacific my dd has neuropathic pain and this often (like today) is where she has a burning/ pins and needles type pain on her hands or feet or anywhere really. So today the palms of her hands are bright red and she can't lean on them to move to commode or hold a cup or spoon. Google neuropathic pain/CFS and see what you find.

Ahh yes. I see what you mean. Fair point , I hadn't thought of that.

on a completely unrelated note, DH just got home from his half marathon the energetic git and one of the freebies was a vitamin D3 spray.

The problem with the word "tired" and with CF in general is that rest or sleep doesn't relieve the fatigue. For "normal" people, if you are tired, you sleep or rest and then feel better afterwards. For people with CF, sleeping/resting is something you do because you can't do anything else and it doesn't make you feel better. Or at least that's how DS' geneticist explains it to me. He has also said that it's important to force yourself (in my case, my ds) to get up and do things a little every day, because some amount of the doing nothing is from habit so if you have an episode of CF for a long period of time, you get out of the habit of doing things and if you do build back energy, you never get out of bed to use it because you are so used to not doing so. It seems to help with ds to get him moving a little more every day after he's had a bout of CF. I usually start a few days into it. It's really not easy, though.

over thank you.
I thought it would be something like this.
It's very strange. For a long time I've 'just' been exhausted but in the last 18months, the pain has caught up with me. From the aches that stop me from sleeping to this strange feeling recently.
Which, to me, point out that I'm getting worse, not better.

I HATE the name Chronic Fatigue Syndrome. It just makes it sound like I'm tired. It is SO much more than that.

It was sensible to change from ME but I really wish they'd thought about just what CFS implies :(

I've been feeling rather low and aimless the last few days. I am in pain which isn't helping but TBH I just miss work. I'm glad I'm not there because I know I'm not up to it, but actually the job gave my self esteem quite a boost (after being a SAHM for 4yrs) and I feel a bit aimless without it, and frustrated with having to watch what I do all the time because I'm signed off and paranoid about people bitching if I dare leave the house.

murmuration Clinically it appears they are unable to mobilise fat as a fuel source to the body

Slight diversion but I seem to recover really badly from anaesthetics (end up staying in overnight rather than popping out the same day even for simple things). I'm also exhausted over a week later when others seem to bounce back. Is this due to the me/cfs. Or maybe my unfitness due to the me/cfs :(

I'm struggling to manage mine at the moment in general. Should I lie in in th emorning (when husband can do kids) or does that just mean I stay up later and sleep less...

futureme the long time to recover from anaesthetics is classic mitochondrial disease symptom. It's due to the autonomic system dysfunction, I think.

kate, that's fascinating! Everyone I've ever said that too before (that it seems like my body just sits and 'waits' for me to put food in to give it energy) thinks it sounds off-the-wall. Nice vindication to see that it can be a real thing. Also matches with my current situation, where carbs in the evening, even just one bite and especially refined flour/sugar, can send me into the lethargy/shivering mode. I can eat a bite of cheese normally without getting too ill and without the lethargy. I've also found that if I have whole meal flour in my mid-morning snack it works much better - I don't get ill at all, and I can keep going until lunch. I wonder if this suggests I should skip that snack? But I'm eating so little already, I worry about cutting out food, especially since I try to make it very healthy.

future -- me too! I don't think it is unfitness. I was like this back when I was a competitive gymnast, so I was highly fit. I had a colonoscopy in the morning and had to stay in the hospital until evening, and then was stuck in bed for three days, unable to get up. Thankfully my now-DH (we had just started dating!) was able to take care of me. Looking back, that was about the time my POTS probably started, although it took another 10 years before I got even a partial diagnosis.

As far as figuring out how to manage, my ME nurse had me do daily records of activity just a basic description of what I did each hour for two weeks and also 'rate' my day. Looking at that, we were able to determine that I was able to do more in future days as well as rated the days higher if I had a rest mid-afternoon. Maybe you can do something like that on your own, to see what your patterns are? That might help figure out if the days get better or worse if you rest in the morning.

Kate this article is really interesting.
It matches what i've read about fasting and my experience that I feel much better if I eat very little (or none at all) after 5.00pm. (In effect I do a 14h fast everyday).

fuzzpig canb I ask you what you are doing during the day?
I'm finding that when I'm exhausted, I can't do move that much, can't really read complex stuff nor can I spend a long time on the Internet MN. But I'm not able to sleep either. So I end up very frustrated, not knowing what to do with myself.

interesting article. I found that I've unconsciously moved towards the 16:8 diet every day - first meal of the day is at approx 1pm (berries/fage yog/homemade granola or now that it's getting colder some soup or roasted sweet potato and ratatouille type thing) maybe a snack about 4pm - nuts/oatcakes/nut butter/pear) and then regular dinner about 6.30pm so generally no food after 7pm. I try to eat a pretty low added sugar diet and no processed food unless homemade - ie homemade pizza base. I definitely feel worse if I eat earlier in the day.

I did read that they thought 18:6 or 5:2 was supposed to help with cell reproduction although I'm not aware of any studies that back this up.

I also don't feel hungry - it's like the hunger switch has been turned on - it's not til I sit down an force myself to eat that I realise I'm famished.

pacific I listen to podcasts when I can do very little - mostly comedy ones

Hmm. I'm wondering if I'm doing that 16:8 thing, just offset. I have breakfast around 7am, a snack about 10am, and then lunch sometime between noon-3pm, depending on how the day is going! I sometimes have a snack around 2-3pm if I had an early lunch, although rarely. That's actually a 6-8 hour window, it's just that by having it in the morning instead of the afternoon/evening, it is more socially obvious that I'm not eating.

And like others, I feel ill if I eat in the 'off' time. Although I don't really feel 'famished' at all when I do eat, just normally hungry for breakfast and less so for lunch.

Not hungry either but it's also clear that I'm craving sugar when I'm really tired and I have to keep going.
Coke is usually my first port of call (and the sign I'm doing really too much, usually whilst at work)

I drink shed loads of water - think it helps reduce the fatigue - once you're into the habit of drinking it regularly you start to crave it rather than sugary caffeine drinks.