Interstitial cystitis anyone?

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Jan 18, 2006.

  1. Does anyone have it here? It supposedly is a part of fibro and is miserable. I have been taking detrol la for it, but it has flared up again big time.
    I have heard people say drink a tsp of baking soda to help it? Does anyone have any suggestions besides eliminating spicey, citrus, etc. foods.
  2. tandy

    tandy New Member

    I've heard of alot of us members having IC along with Fibro,and CF. I have'nt been DX with that yet but I highly suspect it.
    Way too often I have all the symptoms of a bladder infection but no bacteria found.
    My low belly gets very tender and sore all the time.My low back will ache too. and I'll pee all the time. (small amounts) but seems like every hr I hafta go!
    A member here named Ellen sugested something called prelief. You can find it in alot of the drug stores or online. Alot of IC sufferers say it helps.I hope this helps.
    Best of Luck :)
  3. Smiffy

    Smiffy Member

    Yes, I have really bad IC, it's a really miserable condition. I take Detrol LA, Elmiron & Amitriptilyne, & alkalise my food with Prelief (which I think can be bought in US pharmacies). I'm waiting to be assessed for Botox.

    The dosage of bicarb is half a teaspoon in half a glass of water, 3 times a day if you have no blood pressure or heart problems.

    In addition to avoiding spices & citrus, we can avoid chocolate, caffeine, tomatoes, carbonated water & vinegar (pickles etc.). The only fruit I can tolerate is pears, & I only drink water.

    The various treatment options are discussed on the I C Network message board fibrobutterfly, which has a number of members with IC. best wishes xxx

    LISALOO New Member

    Yes, I have IC, but it's pretty much in remission. I only have problems if I have too much acidic foods or drinks (like lots of orange juice last week).

    I found physical therapy with a specilist helps. The nerves in your bladder set off muscle tightness, which causes the most pain. There's books on exercises for IC if you can't find anyone.

    I went really slow on supplements. I found out I couldn't take Vitamin C, Vitamin B except sublingual, or Malic Acid. There were more I couldn't take in the beginning. I quit all supplements, then added one at a time to see if it helped or hurt.

    Find your delayed allergies, your bladder releases histimine to deal but allergies make it worse.

    Look into drugs. Elmiron is suuposed to rebuild the layer of your bladder. I couldn't handle it as it caused my hair to fall out. But that's a small side effect.

    A good support board is on yahoo, called the interstitial cystitis puzzle, people talk about what helps for them. They helped me heal. People were getting better, which gave me hope!

    Liver cleanses - I could tell I started feeling better after each one!

    Make sure your hormones are balenced. I had to get off the pill because it made my IC 10x's worse. Then I worked towards getting them balenced.

    That's all for now. If you have more questions, ask!
  5. pawprints

    pawprints New Member

    Marshmellow Root Tea or Aloe Vera capsules for this problem?

    I tried the Elmiron but it seemed to make my body pain much worse. My bladder felt better within the first week but I could not tolerate it. My Urologist could not figure out that side effect. Since it is a blood thinnner, I thought maybe I was having a Herx?

    I have now switched from Elavil to Pamelor and seem to be having a similar problem with increased body pain.

    I do watch my diet very carefully, but the more pain I am in the more stressed I become, which it turn makes the pain worse.

    How do you find a qualified physical therapist in your area?

  6. kch64

    kch64 New Member

    I was diagnosed in 1992. My urologist gave me a list of foods to avoid, but the BIG one was nutrasweet. I stopped using anything with it and it took about a month, but it helped me very much.

    Stay off of anything with Tyramine (sp?) They are the same foods that cause migrane headaches. Look them up on the web. Sour Cream used to hurt mine a lot, as well as caffeine.

    The baking soda was a lifesaver for me. Also, chew tums several times a day.

    the goal is to alkalize the urine and stop the pain.

    My best to you.
    [This Message was Edited on 01/19/2006]
  7. caroleye

    caroleye New Member

    Worst pain ever!! Found an IC group online that gave me all the information I needed, and I no longer have symptoms.

  8. mary124

    mary124 New Member

    I have it, dx in 1992. I was being treated with the DMSO but that stopped working. The only medication that I'm on for it is Elmiron 3x a day (100 mg.)Been on this med. since 1997, haven't had any side effect. other than that, they do a hydro about every 6-8 months. I do watch my diet, but I'm not overly diet sensitive like alot of people are. I can have a coke now and then, but mostly I stick with water. Someone mentioned the IC network, there are a lot of people that can help you, I joined them almost 3 years ago. You need to see a URO who specializes in IC, the network has a list of them. IC can mimic an UTI, (I'm just getting over one, in fact I waited over a week before I went to the doctor because with IC you are never certain if you have an UTI or if its IC, but finally the pain brought me to my knees..
    Good luck.
  9. I found out I do have a bladder infection, but how can you tell the difference! They both hurt about the same. This one is BAD. My dr. suggested cranberry pills, but I am afraid that will flare the IC. This is a horrid thing I wouldn't wish on my worst enemy.
    Does Prelief help alot of people?
  10. EllenComstock

    EllenComstock New Member

    I'm the member named Ellen that Tandy above mentioned. My urologist at the Cleveland Clinic gave me some samples of Prelief and it has really helped me. I can eat more of the high-acid foods now as long as I remember to take the Prelief. I can give you more information about it if you are interested. I suppose that baking soda would help, too. They neutralize the acid in foods and drinks that are so irritating to the bladder. I wish someone had told me about this product years ago. It would have saved me a lot of suffering. The Prelief has helped my IC by about 80%. I do get occasional flare-ups, especially when I get stressed out.

    I agree with you about not knowing if it's IC or an infection. It is hard to tell sometimes! Before I knew I had IC, I was constantly running to the doctor just sure I had an infection. Every time, except once, my urine tested negative for an infection.

  11. mary124

    mary124 New Member

    I agree you can't tell the difference. I just got over an infection myself. There was lots of times I either went to the doctors alot, or suffered in silence. There are test strips on the market you can buy they are about $10.00 for about 50.
  12. SherylD

    SherylD Guest

    I have never been dx with this.. But everything I read I know I have it.. It gets bad..

    I too have had reacurring UTIs.. It get so bad I get pain down the inside of my legs and can't hardly walk..

    I was suppose to have my urine and blood checked the last time I was at the Dr. but I didn't.. I wanted to see how the changes I have made would help..

    I have been doing a lot of reading on the candida..I have also done a lot of changes in my diet... I have started the Shake..I do the aloe and lemon.. A couple days ago I started taking Pau d'arco..I eat alot of natural yogurt.. I can say.. the pain is much better..And it is even PMS time. I do still get some pain and pressure when I have to go to the bathroom.. Not as bad though..

    I only thing that is not much better is my lower stomach still sticks out alot.. Does everyone else bulge out?? Maybe I have other things going on..

    Do you possibly have a yeast problem?? I can effect sooo many things..

    I hope you feel better soon..

  13. motherof2nky

    motherof2nky New Member

    I was diagnosed with IC about two months ago. I was having terrible pelvic pain and went to the Dr, he sent me to a female specialist. My MD thought it might be adhesions from my hyst. Well turned out to be IC. I also having problems when I sneezed or coughed. So six weeks ago I had a TVT (Tension-Free Vaginal Tape) a bladder distention and he preformed a cystoscopic examination. So far the TVT seems to be working, I can cough and sneeze with out losing urine. I went back today for my six week check up and he put me on Elmiron 3 times a day for IC. Guess we will see how it works.

    Debbie B
  14. rockyjs

    rockyjs Member

    If you do a search for a product Prelief you'll also find good information on IC. It was developed by the same company that developed Lactaid and Beano.

    A friend of mine who had severe IC and tried various treatments for years says it has made all the difference for her.

    Their website has a list of the stores that carry it in each state.

    Jan[This Message was Edited on 01/20/2006]
  15. I do know this is miserable. I showed a bad infection, for some reason the antibiotics aren't working. I need to call my dr first thing Monday. UGH! I will buy the prelief also. Anything to help. Someone told me a old rememdy is 1/4 tsp cream of tartar followed by a glass of water 3 times a day . Has anyone tried or heard of that?
    I try to push the water and not much else, like pop seems to make it worse.
  16. EllenComstock

    EllenComstock New Member

    Pop or anything carbonated will definitely make the IC worse. You need to get a list of foods and drinks that can aggrevate the IC. I have never tried baking soda or anything else for the IC.

    That's great that you are getting the Prelief. You will need to experiment to see how many tablets to take with each meal. I take three or four tablets with each meal (depends on what I am eating). Don't forget to take Prelief with anything you drink between meals like tea or fruit juices.

    With the Prelief I have found I can eat and drink more of the high-acid foods without it affecting my IC. Of course you wouldn't want to eat and drink a lot of the high-acid foods in one day. I have found I still have to limit it a little, but I am so much better than I was.

    You can also take Prelief at bedtime. I am 80% better and I highly recommend this. You can also buy Prelief in a powder to add to recipes, but I have found the tablets to be easier. I also carry a bottle in my purse for when we eat out. If your drug store doesn't carry Prelief, I am sure they can order it for you. I know that Walgreen's carries it.

    I still get the occasional flare-ups, especially when my stress level is higher.

    Good luck.

  17. motherof2nky

    motherof2nky New Member

    I posted earlier and mentioned that I had been put on Elmiron 3xday for IC. Well I stopped taking that med, my hair was falling out. I had only been taking it about ten days.

    Take Care,


[ advertisement ]