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Is it worth getting a diagnosis for CFS? Is there any treatment?

(12 Posts)
Houseworkavoider Wed 23-Mar-16 11:47:22

Hi,
I'm having a bad bout of what I believe is CFS.
I've diagnosed myself via dr Google but I am quite sure I'm right. My symptoms have been up and down for almost 20yrs(!) but now I'm finding if difficult to manage as my life has changed and more and more demands are made of my time and energy.

Pre marriage I was a LP and would manage to arrange work/parenting quite well as I could prioritise rest as soon as dc went to bed.

Now I'm constantly exhausted and I'm feeling guilty for letting my family down.
Dh is hmm at me for not achieving much (if anything) and he feels put out that he's doing more than me.

I was wondering if anyone here has any experience of getting a diagnosis and weather or not there was any treatment that helps? I am self employed so I'm not bothered about a sick certificate or anything like that.
Tia.

theredjellybean Wed 23-Mar-16 11:52:46

hi...

firstly there is no 'test' for cfs or similar, but if you are feeling that you are tired/struggling wiht energy / not achieving what you think you should be then first step is to see your GP and have a full set of blodd tests done to rule out something like anemia / thyroid or kidney disease.

Now presuming all those come back normal, then next consideration is could you be mildly depressed ? a good Gp would explore that with, there are some diagnostic scoring tools for depression which they should get you to fill in.

Ok so presuming you not depressed and not anemic etc , my next step with my patients is to look at lifestyle/age/family/commitments etc....not minimising how you might be feeling ( or my pts might be feeling) but bottom line is modern life is knackering...and as we get older it becomes more so.

So if you have kids/husband/house to run/job + the pressures ot keep fit/look good/have active fulfilling social life blah blah...its no wonder we are all tired ! and achey ! and irritable !!

tired all the time ( TATT) is the number one complaint seen at the GPs and in my experience 99% is just lifestyle and our own unreasonable expectations of ourselves.

Hope that helps OP

Houseworkavoider Wed 23-Mar-16 12:11:22

Thanks theredjellybean,

I had blood tests that included thyroid, iron and a ton of other stuff a while ago and it all came back fine.

I do suffer from depression and I do feel worse when I'm struggling with that.
The exhaustion is constant irregardless of how good my MH is.
I do find that exercise helps fight depression but the downside is that it leaves me so tired.
A trip to the supermarket ruins me for at least 24h.
No matter how much I sleep it's never enough. I rarely socialise now, despite enjoying it and having ample opportunity.
I've put off going out today even though I have work commitments and shopping to do as I'm so exhausted I don't feel up to driving. I need to drive latter to pick Ds up and need to conserve my energy to be able to do that.
I'm slim, generally healthy and in my early 30s. I feel like a person in their twilight years.

I suppose my gp will see my history of depression and put it down to that.

theredjellybean Wed 23-Mar-16 12:18:37

a good gp wouldnt

you sound like you have sussed the depression thing and if you are on anti-depressents and doing graded exercise you are already doing the right things

it does sounds more than just depression and 21st century life disease ( as i call it !)

CFS does not have any treatments , it is about healthy lifestyle, managng energy levels , graded exercise

PLEASE stay away from on line doctors who claim to have special tests/treatments etc...it is honestly all quackery

Multi vit / iron supplements even if not aneamic, graded exercise and anti-depressents all can help

MarianneSolong Wed 23-Mar-16 12:23:06

I had ME/CFS in my late twenties and early thirties. I wasn't a parent then, and can see how hard it would have been to be a good mother and look after myself.

I suppose one question is how much help and support you can get from family and friends to make life more manageable.

Shopping at times when it's really quiet - or getting other people to shop - or ordering online are all options.

I've never really believed in the graded exercise things. It was just a fluctuating condition.The main things was not to go crazy on better days and try and do everything.

claraschu Wed 23-Mar-16 12:26:58

JellyBean CFS symptoms which are different from other types of exhaustion: you are not refreshed by sleep; you have noticeable "brain fog"; you suffer disproportionate fatigue after mild exertion. I know it is a little vague, but there has been a lot of research and writing on this topic recently. Here is an article from NPR: www.npr.org/sections/health-shots/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it. There are many other articles about the recent research from the US Institute of Medicine, which might be of interest to you.
Sorry if you already know all this, but lots of doctors still dismiss CFS, not realising that it is a severe debilitating illness, VERY different from the aches and pains of ageing, and not to be confused with depression (though unsurprisingly, it can cause depression).

We went to a private doctor who treated my daughter's CFS, which lasted a little less than a year, using the methods of Dr Sarah Myhill. There are a lot of doctors who are convinced that many cases of CFS are caused by mitochondrial disfunction. In my daughter's case, extensive blood and stool tests (much more detailed than the NHS ones) showed several deficiencies and irregularities, which were treated with diet and a huge number of supplements and minerals. She slowly recovered and is now fine.

There are several long running threads about ME/CFS, with some very helpful descriptions of people's illness, and in some cases, their recovery.

Good luck OP and I hope you are able to get better...

claraschu Wed 23-Mar-16 12:28:23

Oh graded exercise was terrible for my daughter- I think it only helps if you are already in the early stages of getting better and gaining strength. If you are on a downward slope, it is the worst thing for you.

theredjellybean Wed 23-Mar-16 12:32:39

sorry OP but going to have to go as Dr S Myhill is one of the worst quacks going.

none of what she peddles has any basis in science whatsoever and she is currently on a warning with the doctors regulators for alleging false claims on her website.

Thousands of pounds spent by vulnerable patients on ridiculous tests .

And i didnt say the OP didnt have csf, i said in my second post , it did seem more than just lifestyle .

Houseworkavoider Wed 23-Mar-16 12:33:10

I will give dr Google his cards and send him on his way!

Thank you for your advise. I will give the multi vits a try.
I have a few different ones but I must remember that they don't really have much of a chance to work if they sit in my cupboard unopened!
Right I'm off for a nap before the school music assembly. Rock and roll!

claraschu Wed 23-Mar-16 12:49:43

Hi JellyBean I had only seen your first post when I wrote, so felt that you were being slightly dismissive (sorry). That is not our experience with Dr Myhill's methods. My daughter went from being unable to walk across the road to complete health in about 4 months.

We were told there was no cure and no help to be had by a lot of NHS doctors. We were told to do graded exercise, which made her feel worse, and never could be built on as there was NO level of exercise low enough not to cause more exhaustion.

I think it is very misguided to say so conclusively that there are no treatments for CFS. You are right that nothing has been clinically proven to work for all or even a large proportion of CFS cases, but that may be because CFS is a complicated and poorly understood condition, with several different triggers and causes. There is a lot of research and study going on, though no where near as much as there should be. Please don't disregard the experiences of people who have struggled with this condition. It is easy to be dismissive of people like me, but if you are interested, please look at the report from the Institute of Medicine in the US.

CFSKate Wed 23-Mar-16 14:41:38

There is a drug called Rituximab that is being tested now for ME, but it will be a few years yet before we know the outcome. Usually there are updates at conferences like this London one www.investinme.eu/IIMEC11.shtml#agenda (you don't have to go to the conference, there'll probably be a report a few months later)

Houseworkavoider Wed 23-Mar-16 15:31:54

Sorry CFSKate,
I didn't see your post when I replying to theredjellybean (blame the tiredness!).

I have forced myself to get out and exercise many times only to make it worse.
Equally, I feel if I stay still for too long I fear I could let the lethargy take over and win.

I'm sorry your Dd has this problem and I'm glad she's doing well now.

I'm going to take a look at your link and do some googling this evening cakesmile

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