DOES ANYONE ELSE SUFFER WITH THIS???

IVE HAD FIBRO FOR 7 YEARS AND FOR THE LAST 8 MONTHS IVE BEEN HAVING CONSTANT URINE INFECTIONS WHICH NEVER COMPLETELY GO AWAY,SO IVE BEEN TAKING NUMEROUS COURSES OF ANTI-BIOTICS AND NOW IVE GOT TO TAKE THEM EVERY DAY FOR THE NEXT FEW MONTHS AS A LAST RESORT.IVE HAD BLOOD TESTS DONE AND A SCAN TO SEE IF THERE ARE ANY PROBLEMS BUT NOTHINGS SHOWED UP,COULD THIS BE ANOTHER FIBRO SYMPTOM TO ADD TO THE OTHERS???

22 Replies

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  • Hi jane poor you theres nothing as bad as the pain from kidney/ urine infections. Both of my daughters suffer with this problem which is a genetic problem from their dads side of family. I think this is probably unrelated to fibro and should be treated as such. Our gps and the medical profession are sometimes keen to lump all our symptoms together and lable them as fibro for which as we kno theirs no cure and very little understanding.

    Repeated use if antibiotics which are necessary to treat urine infections can often leave your immune system depleted try to take some form of good bacterium which will help restore the balance. You can get good/ friendly bacteria in tablet form from health store. My daughters gp advised them to always pee when you feel urge do not hold it in. always wipe front to back after peeing to prevent cross infection, empty the bladder asap after sex to get rid of bacteria, drink cranberry juice as much as possible avoid using scented soaps bubble baths in your intimate area and to wear cotton panties as nylon and silk can irritate the area.

    I hope you find some of this useful

    Best wishes Dixie xx

  • Thanks for your reply.The advise you gave me was the same as what my g.p gave me and he also said that it could be down to my fibro.Can you tell me what tablets i need to get in the health food stores are?

  • Oh my dear Jane, a fellow sufferer!!!! I don't have infections but it seems like I have infections but in fact investigations show I have an irritable but very healthy bladder. It is like living in a nightmare, 24/7 wanting to pee. I also have a paradoxical effect with most medicines so taking the medicines to relieve the urgency symptoms actually makes it FAR worse. I live with lots of baths (without bath foam) and wearing an ice pack ( I found some the right shape, I'm not sure of the make so I can't recommend them, but search the internet), only wearing skirts when it is bad with no tights. Washing pants etc with either no washing powder (boiling them in clean water). Sleep is often impossible, I lie and rest and listen to my audiobooks and doze, sleeping tablets seem to make it worse rather than better and in any case most sleeping tablets stop me sleeping. I keep wondering what other symptoms my body can dream up to torture me. Off to see the urologist again this Friday, I don't know what he can come up with, hoping for a miracle, but suspecting there is none.

  • Hello

    I have only had fibro for a few years, but I have started with this

    Cystitis, it's not an infection and when tested it does not show

    Infection, it's called something else I did write a question a few

    Days ago about this.

    Anyway it says that anti biotics does nothing for it as its not an

    Infection but it feels like cystitis, I have found that some fruit

    Starts mine like grapes, some fruit juices, for me the way

    To make it better is drink lots of water and it seems to ease

    It lots, try and think of the things you have eaten like some of

    The fruits apples oranges all work the same I had no idea

    That cystitis went with fibro, it's so nasty even vinegar seems

    To make it happen.

    I think it's called intertistinal cystitis god the spelling does

    Not look right

    I hope that it helps its bad enough to have fibro without

    This as well

    Viv

  • Thanks for your reply.Ive looked up intertestinal cystitis and will ask my g.p about this as alot of the time when they cultured my urine it showed no infection and sometimes it showed only slight infection.There is a link with this and fibro though according to the research i done.How long you had fibro for?

  • I think I have had fibro for about 10 years but very mild

    So did nothing about it, then mum died and I had a car

    Accident although not injured,

    And it got worse so went to a specialist who did all the usual

    Things and said you have fibro , and it's just got worse and worse

    Now like you I have this cystitis, I work as a nurse so every time

    I had cystitis I put the sample on a machine and tested it

    Every time I had no infection just a little blood.

    I have found by looking at what I eat I have controlled a lot,

    I to looked up

  • Sorry had not finished my reply, after looking up

    intertistinal cystitis and seeing that nothing could be

    Done I then looked at what had been washing with

    And eating drinking, and so far it's been ok as I don't

    Have an infection for me antibiotics would not work

    But you may have an infection

  • hi again.Iam also a qualified nurse but had to give up working 6 years ago.The docter said that sometimes i had an infection and sometimes i didnt which was very confusing!What specifically did you change with washing and eating and drinking?

  • Mainly I found fruit like grapes apples seemed to

    Start it but if I had a lot of water it flushed it out.

    It was worse if I had not had much to drink

    During the day

    I just don't have anything scented, your can get

    Stuff from the chemists it's don't know if am allowed

    To say the name but the second name is fresh

    Also fruit juice seemed to start it and lemonaid

    Vinager for me mine never showed an infection

    But you sound different it seems to me that the

    Whole body changes with fibro I also take the

    Probiotic tablets

  • Thanks for that.I will see if any foods make it worse.Iam terrible at drinking loads of fluids so i do need to improve on that.Was told by g.p to do that and ive noticed that when i actually do it,it helps.I also am using the same cleanser from the chemist.Iam going to ask my g.p about this cystitis as iam confused now.I seem to have the symptoms for this so maybe ive had an infection and also have interstitinal cystitis?

  • Good luck I hope some thing works for you

    It makes you feel so down and under the

    Weather

  • yes me too just lately its infection after infection

  • Iam so glad that iam not the only one!Its been making my life a misery.Previous to having them my fibro was getting better but since having them its constantly been flaring up symptoms all the time,especially pain in back and pelvis,also severe headaches and tiredness.How long you had fibro for?

  • Me too :( No infection but urge to pee alot. I have had it since going on pregabalin. Im now off it but symptoms are persisting. Hoping it will fade when drug is out of system long enough as never had it before.

    Kind thoughts NN :)

  • Iam also taking pregabalin.How long have you had fibro for?

  • Hi must be between 5 and 7 years i guess. Diagnosis took ages and drs disagreed alot.

    :) NN

  • How long have you been getting infections for?

  • Mine started about May this year after some 6 months of pregabalin

  • hi there,thanks for your reply.I would love to chat as iam keen to get in contact with other people with fibro.Can i ring you tonight?Will wait til my kids are in bed say about 8.30pm?x

  • ITS AMAZING THAT YOU CAN WORK!THAT WOULD BE GREAT X

  • Hi jane their probiotic tablets ands theres a few different brands and prices you can also buy probiotic yogurts and drinks in local supermarket chilled sections. Like all advice check first with your doctor before trying any natural remedies because they can have an adverse impact or react badly with diff meds. So ur gp should always be first port of call :-) good luck with your condition and I hope it eases soon x

  • I have had the same thing along with weight gain and pain in the right hand side. I had an ultrasound and it found that I have a gallbladder issue and I have small stones which can get into the urethra and cause UTI's so it may be worth getting that checked out. I get the gallbladder taken out a week on Monday which I am glad about as I think it keeps giving birth to new stones. The smaller the stone, the bigger the issue.

    Sorry if this has already been said.

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