To growl at anyone who suggests a woo-woo cure for my incurable condition?

[crashdoll]

I'm not again complimentary therapies. I think they play a role alongside conventional medicine but I am sick to the back teeth of people who suggest ridiculous cures for my Rheumatoid Arthritis and another rare autoimmune condition. It's severe - I have joint damage, I am disabled by it and I need strong drugs to get it under control so I can have some sort of life. It may go into remission, it can be controlled but it's unlikely to be cured at this point in time.

I have no problem with people who say "my auntie has this and recommends ice packs and gentle swimming once a week". But I am getting fed up of "20 minutes of standing naked in the rain and you'll be cured".

I've done the nodding and smiling crap but it's not working. I don't want to be rude or swear because I know people are genuinely trying to help but I'm not a fan of woo 'treatments' and people just are not getting the message. AIBU to bare my teeth and growl a bit?

YANBU My ophthalmologist friend and another friend were discussing my sons blocked tear ducts the other day, when other friend suggested I try homeopathic eyedrops her own son uses for his conjunctivitis. I pointed out he doesn't have conjunctivitis and ophthalmologist gave a quick lesson in how the eye creates and drains tears. It made absolutely no difference, we were promptly informed, yes but the drops really work .

And that's simply blocked tear ducts not a debilitating painful condition. I can imagine how much you just want to shout at them.

pimpMyHippo - I think you are incredibly strong and brave. Just sayin.

Op - I like the crystal/wand/nose shoving suggestion earlier on the thread. Seems the most straightforward response to me. And I am so sorry about your condition. It sounds like an utter bitch.

I have a rare immunological neurological condition called CIDP, which is only diagnosed 50-60 times a year in the uk. Can't feel my hands and feet, poor balance, excessive tiredness, altered skin sensation, loss of position sense (I can't clap my hands with my eyes shut, for example).

I was diagnosed after an ultrasound, x-ray, 2xCT scans, an MRI, a PET scan, biopsy, lumbar puncture, seventeen vials of blood tested, seen by 4 different neurologists including a professor who is probably the world expert on my condition and then a trial of treatment to control it - which worked!

Isn't it amazing, then, how total strangers can tell after meeting me once that if I just ate more oily fish/took more exercise/believed in myself etc etc I'd be fine. That would be better than going into hospital every 6 weeks for an IV drip that costs about £8000 a time. Why didn't I think of that?

It is fun allowing medical students to look for my arm and leg reflexes, though. I don't have any, they get very disturbed about not being able to find them (when you're hooked up to a drip you have to take your pleasures where you can find them and they've stopped me hacking into the hospital wifi to mumsnet!).

Can I just add

"Aren't you too young for that?"

Yy to the fertility thing. People are always trying to persuade me that I will be able to have a baby if I take certain herbs or a homeopathic pill. Everyone loves the 'stop worrying and it will happen' line too.

I bought a friend a gooseberry bush, she got pregnant soon after. I'm sure it had nothing at all to do with the gooseberry bush which was a joke present. I'm sure some other people will claim it was the bush that did the trick.

Does anyone smoke pot for medicinal reasons?

Does anyone smoke pot for medicinal reasons?

I did! I had cancer, and as a result of the extensive radio therapy (you know, the one that combined with surgery saved my life - yay modern medicine!), I had bad neuropathic pain. Still do to some extent.

Anyway, I tried lots and lots of painkillers, and sometimes had a bit of a smoke. Most painkillers worked, all had some degree of side effect.

Diet doesn't cure everything, but it can have an immense effect on certain conditions.
The films 'Forks Over Knives' and 'Fat, Sick and Nearly Dead' are well worth a watch.

I can be fairly woo about some things (and ginger did actually take the edge of the morning sickness!) but I personally would bite anybody who started on at me about homeopathy, healing etc.
Diet, meditation and the like has it's place but in general that place is far, far away from modern medicine and serious or ongoing illness.

YANBU. just bite the bastards...

The Witch has spoken

"I think stress has a massive affect on the body & the way it works, so a lot of the woo woo treatments that relax you can help."

I agree re: relaxation. Before I was diagnosed, my symptoms were quite vague and I was so stressed, convinced I was a hypochondriac and begun to get very low in mood. I had reiki which didn't cure my symptoms but I loved the hour a week lying in a nice smelling, dark, peaceful room. I actually switched off and got some reprieve from the confusion of my body and mind. I have enjoyed reiki and massage therapy but when we move into homeopathy, I become less convinced it will do me any good. I have tried it though, tried most things!

i don't know.

it gets fucking annoying being given all sorts of random made up solutions, especially when they're based on fresh air (not even anecdote)

i can't not listen to them though, because at some point someone will say something that might just work (ie something you've not yet tried)
DD has horrid eczema, and we're hoping she'll grow out of it and we're constantly being told that oilatum is the only thing that would shift xyz's eczema. and oilatum runs off dd's skin like it's water (and makes it just as dry) but other people have suggested other creams that we've then asked the GP for.

fuck it, nothing works.
nothing fucking works!

maybe the power of prayer is the only hope.

(dd was practically born in the bloody church and she's still suffering, so... )

I have a problem in my retina which can trigger horrific migraines. According to an otherwise sane older lady in work I should just try positive thinking .
Yup , that'll grow the cells back in my retina for sure