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)

pacific - that's how I was before whatever this is started. I gained 2 stone over 3 months once just eating muffins and biscuits in order to keep going at work. The maddening thing was it worked - some sugar, and my brain worked again, and I could keep going. So it was very hard to both fight the craving and fight through brain fog to work, knowing I could just eat something and feel better. I would start to get faint and dizzy if I went much more than 2 hours without food, and if I waited too long not only was I cold and shivering but I'd burst into tears! Not at anything, just because I wanted food. Clearly not something one could do at work.

I've always had tons of water too, upwards of 3-4L a day. I've recently been having headaches, and I think it's because I'm not drinking enough. Because I'm not hungry, I'm not having water either. Water does not make ill, though, so I am trying to remember to drink regularly throughout the afternoon/evening.

I'm hearing a lot of junk food/unhealthy food consumption....it's extra important to eat "healthy" if you have mitochondrial issues. I know you've heard it before, but processed foods really should be avoided. There is some evidence that a paleo diet can be super helpful for people with mito/CF issues. I know you all know this and this is not meant to be judgmental, but rather a reminder of how much better you will feel if you are consuming whole grain foods and unprocessed foods, rather than sugar and white flour goods. Mito patients need to eat frequently to keep their energy up, but get your pick me up from a piece of fruit or nuts rather than a sugar drink or candy bar.

You're so right, Sofia - I definitely feel it is a vicious cycle. It's all tied up to mental health as well though (for me anyway) - I find it so hard to look after myself in all senses, low self esteem etc. I am trying, but it's a two steps forward one step back scenario.

I tend to keep quiet about the diet (as in what food I eat, not like crash diet type stuff which I would never do) aspect of my treatment as I do get worried that people will get the wrong idea, that all I need to do is eat better, because of course it helps but it's not that simple. IYSWIM.

I'm feeling rather sad today and trying not to dwell on the fact I've heard basically nothing from anyone at work for several weeks now (other than arranging the scary meeting which is tomorrow). It would be nice to know if anyone is actually missing me or thinking of me, and I can't shake the feeling that if I was off this long with an acute illness, rather than off yet again with CFS, it would be different :( but I'm trying to snap myself out of it.

sofia do you have any links to diet for mito issues?
I'm just starting on this journey and finding all that facinating.
Even more interesting, it seems to go on the same lines than what my acupuncturist told me e en though they are two different a approaches to illness.

pacific dr myhill recommends a paleo diet -drmyhill.co.uk/wiki/Stone_Age_Diet_-_this_is_a_diet_which_we_all_should_follow

Tonnes of stuff on t'internet

fuzzpig try not to feel down - its difficult I know - I find the isolation so hard and have certainly discovered my true friends - I think though that to a certain extent that people don't mean to forget about you, its just that people are so busy in their own lives that they don't remember you. I haven't seen or heard from any work 'friends' since May.

I'm dreading my meeting - what with the amount of time passing since I last visited the office combined with my pea brain, I'm worried that I won't remember half of everyone's names :o
Hope your meeting goes ok tomorrow

fuzz and hey good luck with tomorrow.

Good luck tomorrow fuzz. When's your meeting hey - is it tomorrow too? Good luck to you as well!

Like fuzz says, there really is a feedback cycle. When a biscuit actually works to give me 1-2 hours of brain time and enables me to get my job done, I was definitely choosing it over healthier options. Made things worse in the long-term, but was a quick-term fix. I actually often found myself packing all sorts of healthy things, then having finished them all sitting at my desk in a massive brain fog and heading down to the machine to get a chocolate bar. Magic two hours of work! I used to say I could be so healthy if I just didn't have things that needed to be done.

The fact that this process has basically stopped for some unknown reason for me has really brought home how much at the mercy of my body I was. And still am, I suppose, although at the moment it actually seems to be forcing me to be healthy. Sugar, refined carbs, etc., are the worst for making me ill. Green vegetables are the easiest thing to eat! It has made me reconsider how much 'free will' I really had in my food choices.

Hope everyone's having "good" days today.

I had my PIP assessment this morning, not really sure how it went, I was having a goodman day pain wise so not sure if that'll go against me. Although the fact that my appointment was at 9 and we weren't called in untill 9.30 was not cool. My poor back is killing me.

I also suffering for having to get up early and the appointment itself. I'm so tired and foggy but can't sleep

Still waiting on the pain clinic aswel, I seem to be in a permanent waiting cycle atm

hi i'm part of the back thread as I got back pain first but i have just been diagnosed with fibromyalgia so i'm slightly re-adjusting my "line of attack" to include more stuff to keep stress at bay.

I used to have IBS in my twenties, it went away after i avided white flour and white rice for about 12 yrs butcame back when my pain issues started getting set in. I am avoiding wheat since a while but baulking at the idea of excluding caffeine and dairy (sugar i can reduce with will power) - how much have you gals found it helped. some say raw food diets are good for fibro, is fibro counted as a mitochondrial disease?

I recently did pip and esa in the same week so you have my sympathy icclemunchy , it was so stressful I had a slight freak out for some days, made me realise i was still depressed but then they didnt take any account of the depression at all so i felt very negative aftreward even though i had got standard rate agreed, which is all i expected at the start.

I had a werd day today where I had an awful brain but much less pain until halfway through the day!

Congratulations on getting through your pip assessment iccle - I've been putting off filling the form due to lack of brain power.
Ive been feeking really grotty the last few days - painful sinuses and really achyin the mornings - sinuses are cracking at night time too. No mucus so don't think there's much point in taking anything additional - was wondering about upping the nortryptaline til the sinus issues resolve themselves.

Hope your meeting went as ok as it could have done fuzz. Mine's next week - need to plan for some pre and post rest time.

How did it go, fuzz? Been thinking about you today.

Contact scope hey and get some help to fill hem in, honest it made such a difference, can't say the assessment was fun though because it made me realise just how much I can't do and how many things we've changed to fit round me

Interesting you say about sinus probe, I'm always suffering with mine, I didn't realise that could be a part of the symptoms. I just thought I had bad luck when it came to blocked sinuses!

Sorry, just need to get some desperation off my chest. At work in tears. Have planned for months! that I would be able to get a break by taking next week off.

Really struggling and crashed yesterday, and just thinking need to get through today and have time off.

I sent off a message to the person covering for me next week with some things I knew need to be handled. Just had her on the phone -- she's not going to be able to cover for me as her boss is out and she's covering for him instead. We managed to divide up stuff to about three more people and put some other stuff off until I get back.

But now I feel like absolute shit that I'm taking this time off when other people are having acute issues and I'm just trying to take a break. I was already feeling bad about leaving but reassured myself that we had discussed it and had cover arranged and it would all be okay. And now I'm creating another crisis when we're already having one and bringing in more people -- who have no idea about my health issues so will just see that I'm taking a 'holiday' when everyone is already dealing with a senior person out of the loop. I'm sure some of them will be wondering why can't I just check email when I'm off wherever it is I am, instead of skipping out entirely. But I can't, because I desperately need this break. :(

Firstly, big hugs and for you murmuration.

If you have planned to have next week off and work was aware of it, then that is exactly what you do. Turn that work switch off, and then turn on the 'me' switch.
If cover was arranged then whatever issues are going on at work are not your problem. Why on earth should you be attending to emails on your holiday?

So the first 'me' thing you do is stop feeling guilty. The second thing is to just stop everything, even if only for an hour. Give your self some space, some kindness, and just embrace the stillness and calm.

Once you've stopped all those negative feelings, then you can feel free to spend this time however you wish. It is YOUR time, you have a right to it, you have a need for it. So use it.

I've finally finished reading the thread and all the links!

Take the break murmur. One weeks planned absence will have far less impact on your colleagues than if you end up off sick longer term because you have completely crashed. I wish with hindsight that i had done that, but like you worried about commitments i had and the impact on other people if i didn't fulfil them. I had an enforced break in the end that stretched to two years before my employer and i parted company.

I'm also hoping fuzzpig's meeting was ok for her.

MaizeMonkey - I wouldn't be surprised if Fibro IS linked to Mitochondria disfunctions. This link (below) is just one of several I found on the subject,

www.cortjohnson.org/blog/.../is-fibromyalgia-a-mitochondrial-disorder/

and it all sounds so familiar. I used to live my life at 200 mph, but in the middle of all that I had to deal with 3 major traumas, that in the end physically stopped me dead in my tracks.
I lost my job, my home, and struggled to think, speak, and eat for several years.

Like you I cannot eat wheat/gluten/dairy items, I crave sugar though only allow myself one treat at the weekend truthfully I end up having two or three but have always had coffee. You have to decide what works best for you, as we're all so different.

for myself, things are much better now through using rest, massage, gentle walking, and working self employed in an industry that I love. On bad days I think to myself 'It will pass' , and my mantra is 'I may have it, but ain't got me' .

• but IT ain't got me.

Oh Murmur I'm sorry you're feeling so awful :( but you've booked your break and you need it, it's not like you're just suddenly demanding it on a whim! I hope it all works out.

My meeting was actually ok thanks folks :)

We were really just catching up and nothing has really changed, when the subject of 'what happens if I can't come back at all' came up (it was in the guidance notes) my line manager just said that at the moment we can continue as we are. I have another meeting with occupational health in a couple of weeks, and then a couple more weeks later I'll have another absence meeting, which will be more formal.

I'm relieved that I don't have to stress just yet, I'm still feeling rather 'in limbo' but I guess it gives me longer to figure everything out. They aren't pressurising me to go back and we had a good talk about exactly what I'm going through, what has caused the relapse etc.

We even had a discussion - prompted by my friend/colleague who was supporting me at the meeting - about how I need to get out of the house sometimes as part of my recovery and they are open to me popping in now and again, so I feel slightly more relaxed about that now.

Stuck with needles again today - CFS clinic insisted on up to date bloods before they see me. It was a very long list, and actually I think some things I might not have been tested for before like B12 so that might be helpful.

Glad things went smoothly, fuzz!

Thanks for everyone's kind words. We have a yearly cycle and I am taking off at a very unusual time. Anyone typically gone at this time will be gone for a work trip, and so would of course be checking email. And even on holidays the default assumption is that you'll be checking email. I actually once had a Skype meeting to discover to my horror that one person was Skyping from an internet cafe while on holiday with his family! What? We easily could have rescheduled; it wasn't even urgent. It just appears to be the assumed thing to be constantly available, and I've always been strange by strongly defending my holiday time for not work. (In fact, there is one person who has my mobile number to text in an emergency and I have at times said "X knows how to reach me", although I don't think I'm going to do that this time. My home number is in my records if they're desperate.)

I'm worried now that I'll pass one of the many people who have now been pulled in to cover next week in town, and they really won't understand why I'm gone. I suppose it would be better if we actually encounter one another, as I could explain that I'm ill. Worse even would be them just seeing me and wondering...

I think I am plagued by the sense that my problems aren't 'real'. Years of feeling like I'm just inadequate and lazy plus a macho culture where you work till you drop doesn't help.

I just want to thank you all for your descriptions about your struggles at work. I put a lot of time and energy into preparing my ds for coping with the adult world while hindered by mitochondrial dysfunction. And seeing all your struggles reminds me how very important my work for my ds is. He is 14 and in 10th grade. He very much wanted to go to our local public/state school rather than a special school that would accommodate his every need. Although he has an IEP that describes his needs and accommodations, not every teacher follows it despite their legal obligation to do so. I was very reluctant for him to have to cope with all of this, but I am now realizing that it's turning out to be a very important preparation for the adult world.

I have come to the conclusion that his strongest weapon/tool is communication. He needs to tell his teachers before school starts what he will and won't be able to do. He needs to set up with them a plan for making up work when he is sick BEFORE he gets sick. And most importantly he needs to recognize AND communicate his limitations. Of course that's a tall order for anyone, especially a 14 year old boy.

If it's of any help to all of you, I find that a helpful starter of a conversation about limitations is a simple description of mitochondrial dysfunction like "he doesn't make enough energy to run all the parts of his body at full function all the time." I will also go on to describe the "parallels" between his "treatment" and insulin for a diabetic. In other words "his symptoms are treated by his supplements, but just like even the most responsible diabetic will sometimes have an episode that needs emergency treatment, a mito-patient will sometimes lose the "balance" in their body." And of course in my ds' case we are talking about a 14 year old male with surging hormones - not even a saint can keep that stable all the time.

I have also spoken with my ds about making sure that he chooses a profession that doesn't have the culture of work till you drop.

I am in the process of changing careers myself because my current profession (architect) is very much a work till you drop arena where 60-80 hour work weeks are normal. I can't care for my ds and work those kind of hours, so haven't worked at all for several years, but really would prefer to be working part time, which I could manage. So I need to find a profession that I can start at age 52 and work part time.

making sure that he chooses a profession that doesn't have the culture of work till you drop

yes, good plan!

And I've just gone and left my mobile number with two people. But the likelihood of them needing it are small, and if they do, I am literally the only one who can help. Fingers crossed there are no emergencies. And the big thing is that I don't have to be making the effort myself to check for things, and all the anxiety and associated autonomic activity (where my problems are!) that causes. It is a little relief to know if there is a problem, it will find me, rather than having to do something with the sole purpose of checking to see if something so terrible has happened that I'm needed in my time off.

And lucky break that someone just reminded me of something I nearly forgot to do this week (should have done it Monday!). I've been going through the last few weeks with many, many last-minute 'saves' like that. Makes me believe there are some that have not been saved...

I hope you can find something that works for you, sofia. If it makes you feel less alone, DH also was having similar issues, trying to start a part-time career at 49 (worse CFS than me). He eventually decided to start his own business (mostly internet-based, with a few traveling elements a year), where as his own boss he can manage his workload when and as he wants. And it's been something he's dreamed of doing for decades but always thought it seemed not practical enough. Probably not the thing you'd want to do (unless you have a similar un-followed dream) but just to let you know you're not the only one searching.

Hello, I hope nobody minds me posting here, but I saw the thread and wondered if anyone could give me some advice/ideas.

My friend's daughter has been diagnosed with CFS and fibromyalgia. I'll be honest, I didn't know that this illness could strike a child in the way that it has, I just assumed that it mainly affected adults.

She has been ill for a few years now, but it seems to be getting worse. Essentially, it is robbing her of her childhood. It is horribly isolating for the poor girl and so incredibly stressful for the whole family - it seems such a battle even to get access to proper medical care for this condition?

I feel like I should be doing something more at least to try and support the family through such a difficult situation, but I'm not really sure what would help. Of course, I know I can't help with the bit that really matters, which is getting rid of this horrible illness. I have asked if there is anything I can do, but I think they feel so helpless at the moment, they can't really articulate what would help because they don't really know themselves.

So I wondered if any of you had had any experience of any helpful gestures (or books? even little gifts?) that might make either the daughter or her parents feel just a little bit supported? Any suggestions welcome! TIA

Oh, sorry to keep posting so much, but I wanted to send ahead-of-time good wishes for your work meeting to hey. In addition to taking off work, I am going to try to stay away from the internet entirely, as I find it can get me worked up at times. I manage to get social anxiety over FB and MN! So I won't be here at the time of the meeting. Hope it goes as well as it can.

Teaching didn't go too well with me/CFS when I was v.I'll.