Fibromyalgia Action UK
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Interstitial cystitis

Apparently this goes with fibro, I had no idea it was part

Of fibro it does not show up on a dip stick as infection

But may have blood in the urine

The specialist don't know why this happens and there is no

Cure for it and the systems are the same as a UTI. I myself

Have been having this on and off for a few months I don't

Want antibiotics as its not an infection but hurts like hell

And it's just the same effects as an infection burning running

To the toilet making your eyes water when you only pass a

Dribble.

I just wish I had known that I might get this, the doctor or specialist don't

Tell you do they, oh well drinking lots and lots and more water

Apparently it can be helped by diet and what you drink but I don't

Know what.

Why do we suddenly get these things, there goes my sex life not that I

Had one anyway legs hurt to much poor husband don't like my skin touched

Either not a lot he can touch good job the poor man did not read that book

Gary some thing

Good night every one, for me it will be a journey to the toilet it's amazing the

Things you see at night mainly spiders yuck, and dust must get behind my sink

See you can see lots in the dark

Love viv

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Hi viv.

Yes, IC can be associated with Fibro, though having Fibro does not mean you will necessarily get IC.

Have you had fungal infections ruled out? I've had it happen in the past that only bacterial infections have been tested for and a thrush infection in your bladder is still a UTI and has exactly the same symptoms. Systemic candida can also be a problem that Fibro masks.

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Hi Viv,

How awful for you - as if Fibro isn't enough in itself!

I've had "normal" cystitis over the years.

I developed a ritual of wee --- drink lukewarm water --- relax with a hot water bottle ---- repeat for hours on end.

Lemon and barley water and sodium bicarb never helped me but help lots of people.

I hope I don't get IC - what a misery on top of everything else we have to endure.

Julie xx

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Hi Viv

I fnd the fastest cure is Cranberry juice I know it sounds bonkers nut it takes it away very fast and you will feel better I keep it in the fridge just in case. Do try it x gins

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Thank you I did try this and yes it does work but when

I stopped it started again so there must be a trigger

That starts it I think.

Years ago they would give you a medication called mispotisis it was

Really bad I am 59 now and I remember having this when I was 15

It was so gross that just the smell of it made you heave, and to but it

It your mouth was just awful so at least we have come away from

Medication like that.

Thank you I will buy some more cranberry today

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I have had IC for years. Learned early on NO NO NO cranberry juice. It may be ok for kidney infections not for IC

will be in desperately pain for weeks.

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Sorry but cranberry is an absolute no-no for interstitial cystitis - all acidic and citric drive MY IC mad anyway+chocolate, alcohol, tomatoes and caffeine. Does anyone know if aloe vera juice or apple cider vinegar are any help. When I get a flareup, the IBS getes much worse, I ahve nausea, vulval pain and fatigue. Nothing medical has helped I was a long time before I got a diagnosis. Any advice welcome - thanks. Alex63

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Hi Viv

I've also been diagnosed with this, I found a very helpful paper written on IC at ncbi.nlm.nih.gov/pmc/articl...

Shower gel sets mine off very quickly and certain foods. If you shower every day it is worth not using shower gel for a few days to see if that helps. Diet can help and is worth keeping a food diary. I find sweetners, pineapple, grapes can really set mine off too. Drinking plenty of water and a hot water bottle helps ease pain.

Below is a bit from the reasearch paper:

Strong anecdotal evidence suggests that diet modification

offers some benefit to patients with IC. The elimination of

certain foods may help to control symptoms and avoid

flare-ups of the disease. Foods to avoid include chocolate,

caffeine, spicy foods, and foods high in acidity, including

tomatoes and citrus fruits and juices. Artificial sweeteners

and cigarette smoking also appear to exacerbate symptoms

of IC.

Good luck, it is a matter of eliminating the triggers, but I have been without bladder pain now for quite a few weeks

Big hugs x

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Cranberry juice. Everyday whether you have symptoms or not.

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No cranberries juice PLEASE, you will suffer for weeks. Good for kidney problem NOT BLADDER!!!Try prelief before eating foods that you are NOT sure of. It's over the counter at kroger Wal-Mart. They can order it for you 120 Tablets per bottle it's approx

8+ dollars. Good luck I am in a flare now. Miserable for a week. Even tried aloe Vera juice. Have Not FELT any improvements. I do know STRESS plays s big part in IF flares

I have been searching everywhere for help and had bladder installations for 8 weeks, had my bladder stretched

No relief, I AM ON MISSION GUYS LET YOU KNOW WHAT HAPPENS

XXOO

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good morning to you all, thank you for all your

Replies

Thank you so much brown owl very very helpful

I am going to follow the things that you said thank

You

Having fibro is bad enough but this is the pits as it effects

Mood as well

On no chocolate, bloody fibro oh well what must be

Thank you viv

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Some bacteria got in the track ..it's just the autonomy of a woman's body..

everything is so close in that area that contamination isn't hard...You need to

see a doctor soon..drink a lot of water..cranberry juice is high in calories..a lot

of women choose to use the cranberry capsules..it contains an antibiotic type

of cleansing when you urinate..(love talking about this stuff at midnight as it is

here) I always told my girls that a shower in the morning and at night is just fine..

it keeps everything bacteria free...also (shhhhh...secret here) try to urinate soon

after sex..it will clean out the urinary track..sometimes us women need to be blunt..

I knew a girl that was normally quite clean, tidy but she always came down with

bladder infection/ urinary track infection - he lady doctor told her that both partners

needed to shower before intercourse..remember, I was in the nursing business..

Nothing is shy or private when you work in the medical field.. My face doesn't

even get red anymore - so many women come down with UTI's ..it's positively

awful to have an infection as you describe..= /..

Just an FYI..when you urinate out any blood ever, it's a 50./50 shot that

there could be or could have been a kidney stone..they are sharp and jagged..

they can cut as they pass through..so that's why it's important to get to the

doctor..I had one in my lifetime..I wouldn't wish that for my worst enemy...

The jagged edges cut me, infected me..I threw up for 4 hours and had

morphine..it was terrible..pain wise.. =./ xxxKaren

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