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)

That's interesting overthemill, although awful for your DD of course. I have had the proper flu twice in my life & thought I'd been unlucky. Most people I know haven't even had it once. I seemed to be always ill as a child & am still prone to catching every bug going.

It really is hard to take the time to rest when you need it. The temptation is to push on while you can, even if you know it'll do you no good. It definitely helps to have an understanding family. My DH is very good at telling me that I need to stop & rest and even my DC (11 & 13) will sometimes voluntarily do chores & tell me it's so I don't get more poorly.

USA study about flu vaccinations and cfs

Another one signing in - I have cfs and fibro. Came down with it nearly two years ago - interestingly not long after I had the flu vaccine so am staying well clear. I'm supposedly diagnosed with post viral cfs but I think ive had it for longer than that as ive always really struggled with getting over illnesses. I'm about to get discharged from my local cfs clinic as they've given me the tools to live with the illness so just need to get on with it, it seems.

I haven't worked for over a year but employer is understandably wanting to know if there's any chance to return so I'm considering a v slow phased return - in all honesty im terrified that I'm going to relapse - ive come on so far in the last year and dont want to risk my health even more. At what point do you just throw yiur hat in and walk away?

That's one of the reson why I'm so happy to be self employed. It wasn't planned as such but it is allowing me to managed my work load depending on how I feel.

Atm, I work 2.5 days a week. I coudn't do more.

Im looking at returning on approx 10 hours. Even that seems like a massife step as im not sure what could give in the rest of my life to allow me to do that. I do feel that I have some quality of life atm - I'm able to do the basics - school run, cooking etc but just one additional thing a week above that knocks me out for a good few days.
Ive been considering self employed but not sure what I could - or if it'd be worth it financially - background is public sector but I'm quite good with a sewing machine, gardening etc (minus the heavy duty bits).

Hey Hey :)

I'm impressed they have 'let' you be off that long without pushing you out, they must be quite understanding. I don't think I will be able to be signed off that long. We have lots of absence monitoring procedures and I had the impression when I first relapsed that it would've been a matter of months before I was let go. With DH when he got injured it was a few months I think. But I went back on a phased return - it did help, it's just that now the illness has got worse, even the minimal hours are too much for me.

Have they explained their absence policy to you? There should be very clear procedures which allow for phased returns, reasonable adjustments, even redeployment to a more physically suitable job if one exists in the organisation. Anyway, some of my friends were absolutely adamant that I do not quit. They know people who just quit and now are not at all eligible for anything like sick pay etc. So if I really can't go back (it's looking more likely, as every time I think I'm better I go back and am crying with pain by the end of my first shift) I will have to stay off sick until they get rid of me. I hate this fact, it feels like I'm manipulating or taking advantage, but I think it's what I have to do. :( But then if they let me stay off sick for a long time, maybe I will make a proper recovery and can go back to the job I really love! I would have to be off sick properly for a long time, though, or it would be two steps forward three steps back I think.

I have an Occupational Health meeting next week, to see how to move forward. I'm dreading hearing what questions my manager has given them. Thankfully last time they were really good and put it in writing that my illnesses are unpredictable and could easily get worse. I've kind of got to the stage where I just need a decision to be made though, and I can move on and start healing without feeling guilty every time I step outside the house (because I do feel guilty about doing anything when I'm signed off... I know that's silly as I know being stuck at home would make me worse, but still... I'm so paranoid).

I'm thinking that I will pursue more tutoring opportunities if I have to leave work, I only do a little now but it's brilliant, so flexible (I do pay as you go, so both the pupil and I can cancel if needed) and easy. Not to mention the fact it's about 2.5 times the hourly rate of my day job! I barely need to move, it's not physically demanding at all and the pupils can come to my house so no travel either. The only thing I'd need to be careful of if I got more pupils is brain fog - I would need to space lessons out.

Thanks fuzzpig yes they are considering all of the above and have been superb in supporting me. I'm very lucky in that my boss completely understands the illness and also values me as an employee so they've been trying to be as flexible as possible.

I'm hoping that I'll be able to do some work from home as I really struggle with noise and driving so by the time I'd even got to work I'd need to rest.
I sent them a link to action for me's employers guide and the oh and cfs clinic reports pretty much mirrors what it says so I'm hoping there will be some flexibility.
I was looking at tutoring as a possibility - I've got an adult education qualification - I like the idea of payg!

I've been on esa since February as my ssp ran out then - I'm on the contributions based level though so that would run out next Feb and I'd have no income at all then. If I try a return to work and it doesn't work out I'd have to wait for my employers to terminate my contract and then I guess I'd need to claim jsa.

Hope your oh meeting goes well next week - would there be any alternative roles you could do that were less taxing?

Sadly we looked into redeployment and it wasn't really possible. In my actual job each person does all the different tasks (and I've already been told that they can't excuse me from any more of them, because it'll basically mean I'm no longer fulfilling the job description) and elsewhere in the council there isn't really anything (and the travel would add a huge strain - where I work now is only a bus ride door to door, but the main council premises would require bus, train and lots of walking)

I'm really glad you've got a nice supportive boss :) mine has been really nice and patient and is more empathetic now. There is still quite a lot of misunderstanding though, it's not intentional of course but the other day when I said I was really suffering she said I must have done too much the day before (my day off... the implication being that it was my own fault)... no, it really doesn't work like that :(

It occurred to me recently that one of the problems with ME etc is that unlike many disabilities and illnesses, it can be affected by your daily life and activities. I think that can make it quite hard for employers to 'get it' as, somewhat reasonably, they think that our entire lives should be about saving energy etc for while we are at work, and not let outside influences damage that. But real life doesn't work that way. And anyway, I've tried for about 2 years to always save my energy and having no fucking life whatsoever on my days off, and where has it got me?

(sorry about the swearing... hadn't realised I felt quite that bad about it until I typed it!)

Dont apologise for the swearing - we all know what a frustrating illness this is - even when you pace yourself carefully, eat the right foods and take the right supplements you can still relapse out of the blue.

Thanks

I'm feeling a bit more positive today. TBH it helps just knowing I have 3 full weeks of no work. I miss it, but at least I can take some time to sort myself out. Unfortunately I have to also use this time to (VERY slowly and gently) get some other stuff sorted like the ridiculous amount of clutter which frankly is making me more ill, but it really needs doing.

DH had an interview this morning, I really really hope it went well. It's the same wages but for various reasons should be less stressful and more family friendly which is the priority right now.

I'm going to sort out my medication later - have loads of half-finished boxes of my regular meds, and I'll see what vitamins I have as well and put them in my very depressing pill divider thingy.

Could you afford to have someone to come and help you once?

At some point, my house was real tip and it just wasn't possible to get n the top of it on my own. The day to day stuff can be struggle to get done so the rest ...

We had a 'cleaner' coming over for half a day. She cleaned, we )well I told her, she did it!) put a lot of the stuff which were lying around in a big tub. And then DH and the dcs slowly went through them and put stuff at the right place.

Once the house wasn't as messy/cluttered, it got much easier.

That's an interesting idea! Thanks :) We wouldn't be able to afford it right now - got childcare to pay for (but thankfully the CM has agreed that after October we can switch to 'ad hoc' sessions rather than having to pay for sessions I don't really need). My parents did help a bit in the summer which was a pleasant surprise.

I'm really, really hoping that DH can take some of the ridiculous hours he's owed from working overtime (and that's not even including annual leave entitlement), as if he can get some time off we can really attack it.

Thank you for the link overthemill.
I wondered if anyone has read Dr Myhills book about CFS? It is subtitled 'Its mitochondria not hypochodria' and has poorly looking mitochondria like characters on the cover. I read some of Dr Myhills earlier writings but I have not read this one yet. (Actually I went to buy it and realised I had it already !). I wondered what others think - and if I should try to read it?
I used to have a home help come once a fortnight to keep on top of the chaos. I never have enough energy to do anything beyond the basics, even though I am a lot better than in the past. I also have a dodgy back (and a very messy disabled teen to care for) so some jobs are beyond me. Mostly I firefight!! The thing with the home help is to not overdo it yourself, especially if you are feeling slightly better and not laid up in bed. For instance if the homehelp is helping clear up the childs room ( a major job and some!) then we have a few baskets or truggs to carry things in- rather than me trying to go up and down the stairs to put things aw (exhausting). (Ds is awful for wandering off with things and then hiding them under cupboards). I once had someone come and just spring clean the bathroom - getting the grout clean, and cleaning the upper paintwork which I cannot reach. It made life so much nicer.
Hope the interview is positive today Fuzzpig.

Maggiso I wrote at the beginning of this thread about my teenage daughter, who had CFS for a year and was treated by Dr Franziska Meuschel. Dr Meuschel has trained in Dr Myhill's methods of treating CFS; she was absolutely wonderful, did some very detailed blood tests and stool sample tests, and prescribed a complicated and slowly evolving scheme of supplements, minerals, and vitamins for my daughter (based on all the tests, a detailed medical history and a 90' consultation). After about 2 months, my daughter started slowly gaining strength, and 8 months on she has fully recovered. Even some issues she had since early childhood have resolved themselves (urinary tract irritation and infection, and bizarre shakiness).

I hesitate to talk about my daughter on threads like this because I know that most people have tried everything, are sick to death of people with phoney answers to problems they don't understand, and just want some sympathy and hand-holding. I just mention this because I was very convinced by Dr Myhill's writing, tried to get my daughter on her patient list, and ended up with Dr Meuschel, whom I would recommend.

I know of Dr Myhills work and find it encouraging. For me it's tricky because there are no independent studies ( that I have found) on her methods. When my dd was first ill I was PMd by a MNer who had significant experience of mitochondrial disease and was treating her DS with a mix of supplements prescribed by her USA physician. It all sounds very sensible to me and I wish I could go down that line but sadly had an immovable DH - every member of his family apart from him is a doctor and nine approve of anything but standard NHS approaches ( though in fact most of them don't 'believe' in CFS) . But as time moves on with her getting worse I am tempted to try hag approach myself.

Oh please don't worry about talking about what has worked for your DD, clara - there is nothing wrong with sharing ideas! It's only a problem when people insist on it, refuse to hear anything said against it etc. The whole 'well it worked for my sister's neighbour's second cousin's cat, so you HAVE to try it' type thing - the implication being that if you don't buy into it, you just aren't trying. And I've never experienced that attitude from somebody who has actually gone through (or watched a loved one go through) it themselves, because they know what it's like.

Mitochondrial problems is something I remember hearing about when I first got ill, but hadn't really looked into it at the time beyond a book about micronutrition I think. It sounds really interesting. :)

Hi overthemill Dr Meuschel is a fully qualified and very clever doctor, worked as a GP for years, etc. The tests she does are very clearly legitimate: detailed blood tests and analysis of 3 stool samples. My daughter was low on zinc and B3, and had several other irregular results. I guess we all have some nutritional fluctuations, but Dr Meuschel was clear that this was something she could probably help with. She told me she could help with mitochondrial function in about half of the cases she saw, and she could often get a good idea from the test results about whether she would be able to help or not.

clara no way was I trying to suggest it's not legitimate medicine - please don't think that! It's just that it's such a contentious issue in our bloody family and took almost a year to get DH away from his family of sceptical Docs to listen to our NHS CFS teen specialist. I believe that much if what Dr Myhill and my MN contact says is probably correct and may work for dd but I can't get tests done and keep our specialist or my DH happy. Trying to get hold of all her blood tests results at moment to compare them to Dr Myhills work to see is there is any scope their. I totally agree with what you are doing- I believe that we need to find a medical/ supplements/ pharmaceutical treatment not just CBT and GET ( though those work for some no research on teens )

fuzzpig what you are saying is so true! I have never had such a frustrating, infuriating experience as I did talking to the 8 doctors and various other advisors we encountered who really had no understanding of what my daughter was suffering. The people who knew us were merely helpless and ineffectual, and the people who met us because of her illness always started out suspicious that we were lying, exaggerating, suffering from mental illness, etc.

I have never felt so misunderstood and abandoned by the whole medical profession.

In my opinion, the problem about the need for tests and evidence when it comes to CFS, is that people's illness is triggered by different things and creates a host of different symptoms (in addition to the symptoms which all CFS sufferers experience). Also, the only "evidence based" cure which is accepted by the NHS is graduated exercise, which can be helpful when a patient is on the mend and needs to gain strength, but can make people worse if attempted at the wrong time. It can also be deeply demoralising.

Dr Meuschel, the only doctor who understood and helped us, did a really detailed exam and based her recommendations on my daughter's particular case. It was reassuring to have a doctor who listened, understood, had a lot of experience, and had a medical explanation for what she prescribed.

Thank you so much for the kind words. I would never think I had any answers or advice for anyone else. I can only say that, for us, continuing to look for a cure and going to that 9th doctor did seem to make a huge difference. For me, it was important to go to an expert who could interpret all the mitochondrial information for us, as I didn't understand it, in spite of too much googling.

overthemil sorry I was writing and didn't see your second post. I really get what you are saying because plenty of people recommended CBT and graded exercise for our poor daughter. The problem was it was like trying to get a depleted battery to give out energy: she had nothing left in her. It was terrifying.

The blood tests we had were about 15 pages long and took weeks to get back from the lab. I did not understand them as I don't have any medical training, but I was just so grateful to get results that, when interpreted by Dr Meuschel, went somewhere towards explaining why our daughter was so horribly ill (all our NHS tests came out "normal" but they weren't testing for the same things).

The doctor was quite clear that she could not help in all cases of CFS, only sometimes in cases where a deficiency detected by the tests could be corrected.

In our case, the thing which convinced me that the treatment is what cured our daughter (rather than just the passage of time) is the fact that she no longer has constant UTIs or UT irritations, and her slight essential tremor (which she had for her whole life) is gone.

Of course this is not clinically provable; no one could ever come up with a test for this kind of weird condition, but as her mother, I know that something about her constitution has been strengthened.

Also, there is no downside to the treatment and no risk, except the possibility of wasting some money, but that didn't matter to us at that point. I would have sold our house to cure her.

Can I sidle gently in, after almost 3 years of pain, tiredness and general cheapness I've been diagnosed with a "chronic pain disease" no one seems interested in narrowing it down (although it's been noted I have fibromyalgia pressure points) but I have a lot of symptoms that match both fibro and M.E

Basically it bloody sucks, I'm 28 and in the good day I can do the school run and wash up, in a bad day I cry my way through the school run and hope to god my dp will be home from work early

Welcome iccle I am also 28. Feel a lot older though, I bet you agree :( I also have the FM pressure points, I've long suspected I really have FM rather than CFS as pain is a far bigger symptom than fatigue for me.

Clara can I ask, did you have to see Dr M privately? Or was it asking for a referral through NHS (sorry if you're repeating, brain not working today)

I was lucky to get referred to St Barts as they have a good clinic (led by Prof White) - way out of my area but my GP (who has sadly since left) was really determined to send me there. I have a feeling that if he'd referred me to the local specialists I wouldn't have got diagnosed as they use a different set of criteria. The one where if you've had any mental health issues you are automatically excluded

Re: GET I don't know, I was managing really well with it but as soon as I went back to work it all went to shit. I'm digging my pedal thingy out again tonight though, I'll go back to 2m30s.

Excluded because you've had some MH problems before?!?

God I'm so happy to have seen the consultant OI saw. He basically checked me over and told that, as I had been exhausted for more than 6 moinths then I was suffering from chronic fatigue. All the other symptoms (digestive, myalgia, sleep issue etc) amde it a syndrome. Then told me I was now diagnosed!