ME/CFS is a real illness

[garlicbutter]

Oh, I just need to sound off after things getting a bit heated on another thread.

Fibromyalgia included also. I don't get huge amounts of pain, but do spend huge amounts of time resting so that probably helps.

I'm pissed off that my occupational therapy turned out to be "Learning How To Be Ill" and that I'm going to have to appeal (again) against my DLA refusal.

I'm pissed off that I spend so much time on Mumsnet because I can put it down every 20 minutes and change my activity/position. Also that it's practically my only contact with the outside world.

I'm just generally pissed off

Fellow knackered whingers, feel free to rant!

I'll be back in 20 minutes.

[mycatsaysach]

here here

[pointythings]

I have no time for ME/CFS/Fibromyalgia deniers - I have seen a former colleague go through ME (she recovered, but it took her 3 years and very sympathetic management at work).

DH's cousin has fibromyalgia and I see how much pain she is in every time we meet.

and for everyone who has to live with this and [bucket of slops icon] to ATOS and all who sail in her.

[NeedlesCuties]

Is there a link to the initial thread you're talking about?

Please.

[LackaDAISYcal]

I have fibro and mixed connective tissue disease (lupus, sjogren's syndrome and myositis) and am fooking knackered on a daily basis.

I read bits of the thread you were referring to, and couldn't help feel that the cocktail of drugs mentioned might have been adding to things, rather than helping. Mirtazipine turned me into a zombie, and at a lesser dose, and I only take 20mg of ami and not every day, but boy do I feel sluggish the following day.

All that aside though, ME is a debilitating disease and, like lupus, affects everyone differently and no-one can comment on another's symptoms...walking a mile in their shoes etc.

I'm kept buoyant by a mix of disease modifying drugs, anti inflammatory, anti dependants and steroids with the occasional course of amitryptiline thrown in.....life truly sucks some days, but at least I have periods that are relatively disease free.

:( for everyone suffering from a debilitating illness.

[SoozyWoozy]

The worst type of illness is one you cannot see... in that I include, amongst other things; fibro, endometriosis, CFS, ME, mental health - the list goes on and on.

I have CFS as a result of 2 things. I had severe glandular fever as a teenager and never got back to the energetic, sporty child I once was. The docs thought I probably had ME afterwards but told my mum that they'd only diagnose post-viral syndrome as ME was a label I didn't need Secondly, I have chronic pain from a problem with my lower spine and pelvis. New GP happy to 'label' me with CFS as a result. Trying to explain to people that being tired is a totally different feeling to CFS doesn't work. In fact, I think most times people just think I am plain lazy.

One of my good friends has a daily battle with fibro, and you can see how much pain she's in, how fatigued she is. And yet she has still been questioned / disbelieved / written off.

Sorry for my mini-rant, not sure where that came from :)

[lesley33]

I do think one of the problems is that ME/CFS is a bit of a dustbin diagnosis. What I mean is GPs and Dr's sometimes suggest it as the diagnosis when basically they don't know what is wrong. I have personal experience of this - Dr at the hospital who seemed stumped kind of suggested this - have been now clearly diagnosed with something else. But I could have easily taken up his suggestion when I don't have it.

It is also an illness that I have come across people self diagnosing with - maybe they do have it, but maybe they have other illnesses or mh problems.

So yes I think it is real. But because there isn't a test I think some people with the diagnosis have it, some are misdiagnosed and others self diagnose, sometimes wrongly.

[SoozyWoozy]

You are right lesley33, and there are people out there who mis-use their diagnosis too. (Usually self-diagnosis!) I am related to one of these people - lets google search my symptoms and see which one I fancy best...

Fibro does have a clinical diagnosis though, as far as I understand?

[crashdoll]

Fibro also doesn't have a clinical diagnosis, only the 18 pressure point test which is controversial.

I was diagnosed with Fibromyalgia and CFS/ME. My GP sent me away and told me to get on with it. Unfortunately for him, I am a pushy so-and-so. A few months later, I got diagnosed with RA. I'm now being investigated for Sjogren's Syndrome and Lupus. Given how easily I was diagnosed, I am skeptical about people who get thrown a diagnosis like this from their GP. I'm not blaming the patients, of course, just the GPs who IMO like to send people away with a label to keep 'em quiet.

[garlicbutter]

OMG, DAISY, how the bloody hell do you get from day to day?
I confess to a deep, irrational fear of Lupus especially as none of us can be 100% sure we haven't got some more specifically-defined disease until we find out whether we're going to get worse.

I take Mirtazapine + Venlafaxine in quite high doses. It 'manages' my depression and that, I believe, supports my fucked-up nervous system in turn. I honestly don't feel it's safe to apply one's own experience of treatments to another person. That OP has clinical depression and maybe you didn't - though you have every reason to!

Thank you, everybody, for ranting. GOD IT FEELS GOOD to let it out sometimes, doesn't it?!

I just did that drunk-stagger thing over the freezer cabinet and had to put my shopping back as I evidently wouldn't be able to carry it :(

I kept the cake though

[garlicbutter]

Yeah, ME/CFS just means "summat wrong there, don't ask me what" doesn't it?! No clinical test, no cure => Dustbin diagnosis. I wonder what it was in old-fashioned language? I remember there were people who "suffered with their nerves" and had a "weak constitution." Is that us, d'you reckon?

[SoozyWoozy]

My CFS is no-where near the level you're talking about, and I salute you for just facing each day

ranting sharing experiences definitely helps :)

[garlicbutter]

Just seen this, pointy:
[bucket of slops icon] to ATOS and all who sail in her

[GrownUp2012]

Even when you have tangible proof of an invisible illness, people try to tell you that it's not that bad, why are you playing on it, sort yourself out blah blah blah.

Yeah, because I enjoy taking over 20 tablets a day and limping around, waddling like a duck, and the prospect of living the rest of my life with chronic pain fills me with joy. And the serious operation to remove one of my organs is so exciting.

[SerialKipper]

"walking a mile in their shoes etc"

[LackaDAISYcal]

I grit my teeth and get on with it garlic butter, and on the days when I can't my DH takes the strain. According to my rheumy, my disease is mild though so maybe the thought that it could be much worse spurs me on.

And I know I shouldn't project my experience of meds onto someone else , as not all meds have the same. I was prescribed the mirtazipine for depression which predated my lupus dx, but it's almost certain that the depression is a symptom of the lupus. I also take sertraline for that. How do you fare on the mirtazipine? I rapidly put on two stone and felt like I was wading through trace, though in hindsight that coukd have been down to the lupus et al.

Hats off to you though, at least there are drugs I can take that specifically work on the lupus itself, rather than just controlling the symptoms.

Crashdoll, it is a bumpy road to a rheumy diagnosis at the best of times especially as the conditions share do many of the same symptoms. I only went complaining about sore hands and feet, and before I knew it I was sitting in a consulting room full of specialists all wanting to prod and poke me.

I've stopped talking about it with family and friends though, as I'm sure most of them think I'm making it up...when I first told people, all I got was "but you look so well" and trying to explain that, actually, I gelt like death warmed up got too exhausting. Now, if anyone asks how I am, my stock response is "good days and bad days" I suspect I'm not alone in that!

[Diamondback]

A big problem in this country is that ME (a defined illness with unknown cause) is lumped in with CFS (a meaningless catch-all term to cover anyone reporting symptoms that include fatigue, but the doctor doesn't know what it is and/or suspects the root cause is psychological).

In North America, ME is a recognised physical condition - anyone interested can find the agreed definition here. Doctors in Canada and the US agree that, although the root cause has not been identified, there's enough evidence that the illness exists that they treat it seriously and do not allow ME patients to donate blood.

I had ME 12 years ago and was one of the few people lucky enough to recover - no thanks to conventional medicine. I know some may scoff and say there's no proof it definitely existed, but in the 1960s there was no proof that Multiple Sclerosis existed either, and sufferers of MS were often diagnosed as suffering from mental health problems.

I was bedridden for several months, my mental faculties were failing - I still suffer a little from memory problems and word confusion - I threw up almost everything I ate and was in constant pain. However, I wasn't depressed. I was highly motivated to get better and get my career back on track - hardly the mindset of a depressed person. I tried everything I could and I am grateful every day that I am better.

[SerialKipper]

I find taking them at face value with a cheery, "Thank you! At least I look good," shuts them up.

[TunipTheVegemal]

DD's friend's mum has ME and uses a wheelchair because of it. It is insane that some people are still not taking it seriously.
People kept telling her she was depressed and then she saw a wonderful doctor who said 'You're not depressed, you're justifiably pissed off about the horrible thing that is happening to you.'

Good luck to all of you. And especially good luck with fighting stupid DLA decisions.

[SoozyWoozy]

diamondback having had ME, what is your opinion of CFS? Do you think of it as a meaningless illness, or just that the Doctors use it as an excuse of not knowing really what is wrong?

[weaselbudge]

My sil has ME after glandular fever as a teen. She struggles with being taken seriously - but here's why .. she somehow manages to have enough energy to do the things she wants eg see her friends/ go to the cinema but not the things she doesn't want to - eg visit her granny/pick up something from the shops. Am genuinely interested to know whether doing things you don't want to can set you back/cause more fatigue? The family are getting annoyed that she manages to go out to nightclubs sometimes but never has the energy for a quiet sunday lunch.

[VeryLittleGravitas]

Lack are you on Plaquenil for your SLE? I'm being nosy as I was prescribed it for my Sjogrens & APS, but found it gave me vile mode swings and miserable depression. I had to come off it in the end, so it's back to the joint pains, migraines and fucked eyes :(

[Chilenachica]

My very first post in AMIBU, and no YANBU

My sister has been suffering CFS for over 10 years. She's far from depressed, one of the most positive people I know actually. The latest from the Dr is that there might, just might, be something physically wrong with her.

[Hebiegebies]

YANBU

As a fellow chronic illness sufferer who has had money removed by the government as I'm able to control my bowels and use a computer, you get my full support

Thankfully the symptoms have improved since having a MC at 4 months. Proves its not depression causing it, but depression because of the illness. I now feel better than I have in years although my baby died. Explain that doubters!

[SerialKipper]

weasel, you have to pick and choose and budget your energy, just as others do money.

Your SIL may well be able to go to nightclubs to keep something of her life going (though she may be spending most of the time sitting down, and going home early), but by dropping other stuff.

I found early on that most people can (sort of) accept you can only do One Thing this week; they can rarely accept the One Thing isn't going to be them!

[Hebiegebies]

Weasle - I can't fully answer your question, but one thing I have learnt is that energy is used in 4 main ways
Physical
Emotional
Social
Mental

If I meet a friend who is positive, I am using social energy in but not emotional, but of I meet a person who is hard work, I use emotional and social.

If i go to see an elderly person that I need to help in their home, I'm using social, emotional and physical. If they need help to think through a problem you can add mental energy in too

Going to the cinema is easy, I use energy to get into the cinema, bit nobody sees if I go to sleep, I don't need to concentrate on what my friend is doing.

I can also only go into the red zone in one area at once, eg my crying child took me to the red zone just now, buti needed very little physical effort as he came to my room, so physical was green, but mental was amber as I had to think through a possible solution

Hope this helps