Do you have interstitial cystitis in addition to CFS/FMS

Discussion in 'Fibromyalgia Main Forum' started by Smiffy, Aug 28, 2005.

  1. Smiffy

    Smiffy Member

    Hi, I just wondered how many of you have IC too,& what medications you take. For me, IC has been the 'last straw' on top of the other conditions. It is making my life a living hell, & I find leaving the house for medical appointments very difficult.

    I'm following the IC diet,only ever drinking water & taking Elmiron, Vesicare & Amitriptyline (& Prerelief with meals). I'm hoping the Guai protocol will eventually help all 3 conditions,but at the moment am in despair.
  2. blondie45

    blondie45 New Member

    Yes I also have interstitial cystits. I have had this for 20 years now and the FM for about 2 years. I take amitriptyline and Detrol for the IC and mainly just tramadol 3 times a day for the FM. Hang in there. There is life with IC. You just have to find what works best for you. Bladder retraining helped me tremendously.
  3. EllenComstock

    EllenComstock New Member

    I have FMS, endo and I.C. My urologist recommended a product called "Prelief" that takes the acid out of foods that is so irritating to the bladder. I wish I had heard of this product years ago-it would have saved me a lot of agony! It comes in a small white tablet (or powder to mix directly into your food)and is over the counter at your drugstore. It's about $10.00 a bottle. I got a list of foods that are high in acid-some surprised me like yogurt (which I eat every day), carbonated drinks, mustard, etc.

    I take three or four tablets at each meal. The tablets are calcium and magnesium and you can take as many as you need. You can also take them at bedtime. Also, Prelief won't cause any problems with any other meds you are taking.

    I am not a sales person for Prelief in case you are wondering. I am 80% better on this. I still have my occasional flare-ups (especially during extra stressful times). I have suggested this to several other people here and they were helped, too. I hope this helps you. I know how miserable I.C. can be, especially at night when you are trying to sleep! Good luck!

    Ellen
  4. LISALOO

    LISALOO New Member

    Luckily, I got IC first about 3 years ago, CFS about 1 year ago. My IC does not normally bother me anymore. You can get it under control. I took detrol la when i needed it. But that's it. No other drugs worked. What worked for me, physical therapy of the pelvic muscles, I had such pain. Also, totally changed my diet to a non acidic diet. Added all veggies, no fruits. And changed my water. Most waters are acidic! Doesn't help. I also took baking soda in a capsule each morning to help. I didn't notice a change over night but after 6-7 months, I started noticing I had times without pain, anything, now nothing unless I take some medicines that bother it.
  5. Smiffy

    Smiffy Member

    Thank you all three for taking the trouble to answer.
  6. Oh yes, I have been diagnosed with it, it seemed to get better and comes and goes. It is horrible. I am now on an antibiotic as I thought I had an infection , it feels pretty much the same to me. I have had both. Years ago my dr. gave me detrol and it really helped. Then I quit taking them.
    I do know tomatoes, green beans, oranges, grapefruit, teas, pop can make it worse, along with so many other things.
    I went on Weight watchers yrs ago and all the veggies made it worse. Good luck. I know it is miserable, I do know guai made it worse at first also, I guess excreting the bad stuff.
  7. kch64

    kch64 New Member

    I got it in 1992. It's mostly better, but lately, right before my period, it's started to hurt me much more.

    Not on any meds right now.

    Kendra
    [This Message was Edited on 03/15/2006]
  8. caroleye

    caroleye New Member

    I'm having my first "flare" in years. Caused by pounding up 'n down our stairs, which is one trigger, in addition to an acidic body.

    Going into my 3rd week of it, and finally getting somewhere. Here's what I did:

    1. Chiropractic adjustment on spine, pelvis, etc.

    2. Drinking "alkaline" water from our machine

    3. Initially took pyridium for a few days (drugstore)

    4. Tried Prelief, but it upsets my stomach,(I have gastritis)

    5. A chinese herb that "cools" & calms

    6. For burning, the homeopathic "Hypericum" is the best!

    7. Another homeopathic works for the bladder "Cantharis"

    8. I put Cinammon Spice Tea in my morning coffee & also a cap of Guarana (an alkaline herb that has some caffeine)

    9. Ice compresses

    10. Was about to do acupuncture...........

    Won't be doing anymore pounding of my feet anymore!!

    Have to be consistent with your program, as it hangs on.

    Good luck..............carole
  9. kbak

    kbak Member

    Hi,
    I'm taking D-mannose. It's a simple sugar related to glucose. It gets the e-coli that's in your kidney and bladder lining to stick to it and not your lining, so it can be flushed out of your system.

    I'm also taking Quercertin and Glucosamine, both of which are suppose to be helpful. I'm also taking Prelief.

    Another thing I'm doing, that's highly recommended, is I've told my husband that if he wants sex, than he has to take a shower beforehand. If he isn't sqweeky cleen, I can tell right away. Sex really is the No. 1 thing that will give me problem's.

    99% of the time I do pretty good. Once in a while tho it gets out of hand and I am a hurting girl.

    K.
  10. Meghanne

    Meghanne New Member

    I have IC, and have been through all the meds, with no luck. Finally they implanted the Inter-Stim sacral nerve stimulator into my hip, with leads into four of the sacral nerves to decrease the urgency and frequency. I've gone from 30 visits to the restroom a day down to about 8-10. It doesn't get rid of the pain, but using the IC diet and Prelief does help some.

    Trish
  11. pawprints

    pawprints New Member

    Sorry to say but this is a club I can join. I have both.

    Trying all the traditional drugs plus alternatives at the same time and watching my diet. I do believe something so simple as chewing gum can trigger mine.

    It is so rough and the pain is unbearable but I'm determined to keep trying. This group has helped me with some good ideas. The baking soda in water I learned from Lisaloo helps me. Plus I am doing some acupuncture for it...does not help the other pain, but works for the bladder. I have taken pain pills for a few days when it got really bad. My doctor said I had to break the cycle.

    I don't have the energy to go on so many groups a day for every ailment so it is good to know there are several of us on here.

    Stay strong!


    [This Message was Edited on 03/15/2006]
  12. Sandyz

    Sandyz New Member

    I just got diagnosed with it about a month ago. It was the last straw for me too. I was in such bad pain from it I could barely function. It is settling down some finally so don`t give up hope, it will get better. I take elmiron, prerelief and made some diet changes.
  13. kiyoka

    kiyoka New Member

    I was dx with ic before fms. I had dmso treatments weekly for six week. It did help me for about three months, but i never did the once a month treatment since my uroloigst was to busy to see anyone old patients.
  14. Smiffy

    Smiffy Member

    Thank you all - since posting this in August, I've been told that the fibromyalgia is affecting my bladder & urethra muscles, & they're no longer working in harmony. Apparently this happens in MS too.

    It's still driving me bonkers & I've had to give up the Elmiron because it adversly affected my bowels. I'm now waiting to be assessed for Botox injections.

    Best wishes to all you other ICers!