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andi01
11-09-2004, 06:53 PM
i just have to say - this site is the most informative and up-beat i have seen. i think most of u r in USA and im in UK so not sure if the meds r the same.

my story is i was on methadone for drug addiction for 16 yrs. i reduced in 3 months and stopped 3 weeks ago. had a mild bout of cystitis which can happen to me with withdrawals, for a week, then it intensified in one night. thus started a fortnight of doctors visits and one anitibiotic after another. they helped but didnt take cystitis away. i had 2 urine samples return clear. so i went on internet and found out about IC.

i now have to wait weeks for a specialist to see me which is depressing as i do not know definitely wot i have and i am trying to give up the foods with acid in which is hard when it comes to tea and coffee.

its also depressing cos after years of taking opiates for a crutch i now may need to take them for wot they were actually meant for - real pain! kind of a roundabout way for someone up there to make a point - painful too!!!

it will be hard for me if i have to take opiates as i never want them in my body again as i know wot they can do - to me - anyway. i have been give co-proxomal for the pain which is a mild opiate and it makes me feel edgy and yukky for some reason and i dont know how easily i could get addicted again. its only been 3 weeks.

has anyone ever tried natural remedies? i bought something called ********* i think, on the net yesterday for £25 as was desperate. goodness knows wot it is. also i have read about spraying yourself after urination wiv water and baking powder baths. i have tried a hot water bottle but didnt really help.

i have had a couple of nights sleep wiv the help of a sleepaid called nytol, but am going back to work for first time today.

i am really finding it hard to be positive and admire all u people out there for getting through this.

Hollydoll85
11-09-2004, 06:56 PM
I know it's really hard to be positive...but we have to be...there's no other way...we all get down sometimes but this is a wonderful place. I hope you get better soon!
Holly

vm
11-10-2004, 12:46 AM
:welcome: You have found a wonderful source of support and information here. I hope to see you around. :kissing:

Sarojini
11-10-2004, 01:40 AM
:welcome: to the ICN... I'm glad you found us. I want to wish you good luck in your search for a formal diagnosis. Please, during that time, feel free to post all of your questions and concerns here. You will get answers and lots of support!

You may want to check out our Patient Handbook at http://www.ic-network.com/handbook when you get a chance. It contains a lot of info about the diagnosis and treatment of IC, and also contains a large array of self-help strategies that you can use at home to help ease the pain you are feeling.

Good luck and keep posting! :grouphug:

Myli
11-10-2004, 01:06 PM
:welcome:

The online handbook, linked above, also has in it the IC diet. Many of us get relief, in part at least, from following it and from identifying foods that either trigger a flair or make the pain of a flair worse. There are medications for pain that are not opiate in nature. That is a good concern you should talk about with your doctor when you do get to see him. I would be concerned as you are given your medical history.

There are so many alternatives and each of us reacts differently to them, so it can take a while to find the one that best helps you. A look through the posts will help you learn about different things you can try, many of them without the need for a prescription. Try the diet, try using heat or cold in the areas that hurt. Some use both alternating, I find sitting on my icebag gives me a lot of relief. Prelief or Tums can help reduce the acidity of your urine and that can relieve some of the pain.

The better you educate yourself, the more you will be able to assist your doctor in finding a treatment regime that works for you.

I hope you find some relief very soon!

:grouphug:
Myli

kate118
11-10-2004, 03:48 PM
Hello!

Try to give yourself a break. If you only take pain medication when in pain the likelihood of addiction becomes less. Read up on drug tolerance verses drug addiction so you don't kick yourself about if need be. After 3 weeks of soberity you can handle this!

Best Wishes,

Kate

theclownster
11-10-2004, 05:18 PM
HI there! I wanted to add my warm welcome to the ICN.

I am on medications that help with my symptoms and so far have been able to manage my IC without taking any form of opiates. I wanted to mention this as a way of hope for you. You may never need to take opiates for your IC.

Oh, by the way - congratulations on being drug free for three weeks. You have so much to be proud of.

Take Care and feel free to post anytime!

Hugs~
Jennifer

andi01
11-10-2004, 11:33 PM
thanks for all your postings - it made me feel much better.

can any of u tell me what opiate free medication there is available, especially in UK, but even USA.

i saw my doctor who just said i have to wait to see a urologist - could take weeks and said take paracetamol and ibubrufen. these do nothing. i take nytol to sleep at night, its an over the counter sleepaid but the effect lessens the longer u take it.

i have to say u r all very brave indeed.

Katrina
11-11-2004, 05:09 PM
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html

I know there is a guide of meds and their names with different countries....I am not sure if this it ....but if you look through ICN and ICA you can probably find it.
:welcome: :grouphug:

ICLori
11-12-2004, 01:01 AM
Hi, Andi, welcome, and congratulations on breaking the chains of addiction!

I'm sorry that you are having these IC symptoms, I know how awful they are and how frustrating.

But the good news is, there are many drugs (at least in the U.S.) which can help make you comfortable, without opiates. If need be, there are always the opiates, but for now maybe you can try some other things first and see if those don't work.

Many people have found relief with an older tricyclic antidepressant, which is known in the U.S. as Elavil (amitriptyline). It's an older drug, been around for decades, and when it is used in very small doses (way lower than those needed to have an antidepressant effect) it interferes with pain signals, sort of turns the volume down on them. Something like about 70% or more (depending on which study you read) of IC'ers have gotten significant relief from this medicine alone. The only downside is, it can make you feel drowsy during the day when you are first getting used to it, and it can increase hunger which can lead to weight gain.

Some IC'ers have gotten relief from Atarax, which is a type of antihistamine. Then there is Elmiron, which I am not sure is available in the UK and anyway the latest studies have me wondering if Elmiron is really that helpful. The studies seem contradictory and I just don't know what to think.

Many IC'ers are comfortable just by altering their diet, to lessen the acid and spicy things. If you can't give up tea, at least try taking some calcium with it - do you have something like TUMS in England, which is for acid indigestion, and you chew it up, and it contains calcium? Some IC'ers find some relief using a pinch of baking soda in a glass of water. I couldn't tolerate it without throwing it back up, but if you can keep it down, many say it provides almost immediate relief but it probably should not be used longterm and don't use it at all if you have had any blood pressure problems.

Blessings, and I hope you feel better soon,
Lori