1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

interstitial cystitis

Discussion in 'General Treatment' started by place, Feb 12, 2013.

  1. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    I have looked in the forums and there is no thread for this topic alone....

    I have been battling a bad case of ic . It's been 4 weeks of off and on symptoms. I can't shake it. Tested negative for uti.

    I have tried fish oil and Advil and rest but as soon as I start to pick up my normal routine, I'm back where I started within 24 hours.

    Just took turmeric. Not sure if it will work....

    Is it inflammation that causes it?

    If so what kind?

    Any suggestions would be fantastic!!!!!
  2. Sea

    Sea Senior Member

    Messages:
    718
    Likes:
    820
    NSW Australia
    I'm sorry you suffer with this place. I don't think it is understood yet why it happens although it is unfortunately one of the conditions that has some link with ME/CFS

    My daughter who is now 15 has suffered with multiple episodes of this since she was 3. It can come from inflammation or it can be neuropathic. There is some evidence that it can be autoimmune and for some be related to mast cell issues. if mast cells are involved then an antihistamine can be helpful.

    For some people various foods or food chemicals are triggers - common ones are tomatoes, citrus, coffee, alcohol, high acid foods, spices and artificial sweeteners. After doing an elimination diet with my daughter for migraine and staying away from her migraine triggers she has had less trouble with the IC as well.

    My daughter has found cranberry tablets to be somewhat helpful when she feels an episode starting.
  3. Ema

    Ema Senior Member

    Messages:
    3,318
    Likes:
    3,553
    Midwest USA
    place, IC is one of the most difficult and trying symptoms I've ever dealt with and I understand your pain and frustration completely.

    I take a supplement by Designs for Health called UT Synergy when I feel any urinary symptoms. I take 3 capsules 3x/day for a few days and that generally seems to take care of things for a while anyway. It's very pricey but I wouldn't be without it. It contains D-Mannose which some people have found helpful by itself and that would be a cheaper option.

    Another remedy I have found useful is Solidago by Nestmann. It is officially for the kidneys but I have found it soothing to the bladder as well.

    Another option is a supplement called Cystoprotek...I take Neuroprotek by the same company and like it quite a bit. It helps with inflammation.

    I know of people that get Valium suppositories that are inserted into the urethra. I think this can also be formulated with a syringe and used that way. I've not tried it but it might help for spasms. Something to talk about with your doctor anyway...

    Hang in there!

    Ema
  4. Wayne

    Wayne Senior Member

    Messages:
    2,199
    Likes:
    1,294
    Ashland, Oregon
    Talk to this woman (Andrea) at the evenbetternow.com website: 520-877-2637 -- She's recovered from both CFS and IC, and now runs this website. I've talked to her on the phone, and found her to be very easy to visit with.

    [​IMG]

    Here's a link for a section entitled, "Books for Interstitial Bladder Health"

    I dealt with a moderate amount of IC for a couple years or so. When I tried minute amount of MMS (chlorine dioxide), my IC went away.

    Good luck!

    Wayne
  5. beaker

    beaker CFS/ME 1986

    Messages:
    409
    Likes:
    622
    USA
    The ICA has a great website HERE
    Tons of information and tips --It can be a little overwhelming though as far as neuro cog stuff goes though. I get the newsletter -- quarterly I think. Easier. and they have info packets you can send for -- easier for me to read off screen.

    Have you been to a urologist ? Finding a good one near you to work with is important. I was dx'd back in the late 80's -- directly linked to alpha interferon injections. DMSO cocktail installations helped a bit. Not sure many docs use those any more -- there are better options. They are certainly worth seeing someone to find out what might help you. Make sure you find a IC savvy doc though ( the ICA support groups can help with that)
    Mine was constant and unrelenting for years. Over the past few years, for reasons unknown, it has calmed down and I get flares a few times a year. The base symptoms are there but mild.

    What helps me during flares :
    Constant sipping of (filtered)water. It helps flush out the inflammation, it is also less painful to have something in there when you have the constant urge then to be empty, imho.
    Phenazopyridine Hydrochloride ( brand names uristat, AZO) sold OTC will numb the inside of your bladder. Gives me some good relief for some of the symptoms.
    ice pack on the lower pelvic region can help spasms. ( if you are in a cold climate, use a heat pack somewhere else -- ie shoulders) to counter act the cold effect on your whole system)
    Stay away from foods that are high acid, carbonated, high potassium, caffeine, and spicy. In other words a bland diet.
    Keep a journal of what you eat, how frequent you go, etc... can help you figure out triggers and good info to share with dr.

    It's a horrible disease. Sorry you are suffering.

    ETA: the suggestion of anti-histimines. It can help some people, others it can make worse. Just thought you should be prepared for that. Best .
  6. Asklipia

    Asklipia Senior Member

    Messages:
    597
    Likes:
    454
    No recurrence for a couple of years after a double approach :
    (1) - Bains Dérivatifs http://forums.phoenixrising.me/index.php?threads/bains-dérivatifs.15574/
    (2) - and following every day the exercise program in "Heal pelvic Pain" http://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561
    I believe there is a build-up in tissues of something very toxic. After a few days things are better, but it took me 25 days of the exercise to feel there was a definite change. I did 120 days of the first series, only the first three weeks were difficult, after that it was exhilarating liberation towards a new feeling in my body. I did only once a day (they say that you can do up to 4 times). After the 121st day I just added the second series. Total I did 240 days of the first deries and 120 days of the second series. This has changed my body and my life.
    Bains Dérivatifs helped from the start.
    Lots of good wishes!
    Asklipia
  7. Asklipia

    Asklipia Senior Member

    Messages:
    597
    Likes:
    454
    Also I forgot a (3) : Riboflavin supplementation.
    A study has found that consequent Riboflavin supplementation increases the percentage of Fluoride excreted in faeces compared to that excreted in urine.
    http://jdr.sagepub.com/content/52/4/843.full.pdf

    I suppose if it does this, it gives relief to the bladder and urethra and adjoining tissues.

    While doing (1) and (2), I also did (3).
    Since my IC started after Fluoride exposure, it could well all be linked.
  8. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    Thank you everyone! The turmeric has helped but I have also been resting due to a really good book : ). I will try some of suggestions and report back. As always you folks are the best! Thanks!!!!!!!
  9. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    I wanted to update. While having issues with ic I also had some weird sinus issue with great fatigue. All went away when I used misprision in my nose wash for a week. I swear, everything is leaked to my sinuses.
  10. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    Update to the update..... I finally realized my sinus bottle had some kind of mold growing in it. got new one, and all is well. I swear, the stuff we have to go through!!!
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,784
    Likes:
    1,451
    Florida
    The low oxalate diet helps me everytime. I've tried going back on high ox foods while variety of treatments
    but the pain always returns. I suspect my body collects oxalates in my pelvic region.

    Fwiw, b2 makes mine worse. So does azo cranberry without the probiotics. The azo w pro helps.

    Thanks for the new ideas tho. Mannose is on my list.
  12. Wayne

    Wayne Senior Member

    Messages:
    2,199
    Likes:
    1,294
    Ashland, Oregon
    I too have found high oxalate foods to make my bladder area sensitive, and always notice when I eat more than a moderate amount of spinach. Here's a link to a short article on oxalates:

    http://www.whfoods.com/genpage.php?tname=george&dbid=48
    Asklipia likes this.
  13. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,784
    Likes:
    1,451
    Florida
    Wayne and Asklipia like this.
  14. Asklipia

    Asklipia Senior Member

    Messages:
    597
    Likes:
    454
    I did not know there was a company supplying Oxalobacter Formigenes. Good news.
    Some time ago Catherine Tamaro included these bacteria in her Vitamin K protocol for autistic children.
    Oxalobacter Formigenes is supposed to be plentiful in cabbage leaves, those outside which have turned floppy and are cut off by the greengrocer. With a carrot and an apple if you make a juice twice a week you are supposed to have your dose.
    http://health.groups.yahoo.com/group/VitaminK/message/13379

    Now I think that if your cabbage has been covered with PAA (paracetic acid), which is allowed even in organic products, there is little chance of finding Oxalobacter there.
    Be well!
    Asklipia
    Wayne and xchocoholic like this.
  15. beaker

    beaker CFS/ME 1986

    Messages:
    409
    Likes:
    622
    USA
    Just a word of caution on the Mannose. It can cause intestinal symptoms -- gas, bloating, etc..
    I would start at a low dose and try and work your way up.
    I didn't help me and I had too much intestinal SEs, but I have heard from others that it has helped.
    I hope you are one of them.
    Wayne and xchocoholic like this.
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,784
    Likes:
    1,451
    Florida
    On the company providing o. Forminges, I read on the tryinglowoxalate board that it wasn't, what's
    the word ?, uh! It's too early for me. Shoot. Well it didn't replenish like it should.

    The reason this bacteria isn't readily available is that it's hard to grow outside of it's natural environment.
    Recent info states that other bacteria can break up oxalates too.

    Thanks for the mannose warning. I'll go slow.

    Zzzzzzzz ... X
  17. Hip

    Hip Senior Member

    Messages:
    2,950
    Likes:
    2,773
    Calcium citrate supplements, taken with food, help prevent the oxalates from being absorbed.
  18. John H Wolfe

    John H Wolfe Senior Member

    Messages:
    220
    Likes:
    36
    London
    Good call

    May be best to avoid oxalate foods in general too OP as calcium oxalate that forms in muscle tissues e.g. when a patient has a low mag:cal ratio (common in PWME according to the likes of Myhill) is theoretically linked with myalgia/FM

    WellBladder.com: "Experienced IC patients are usually careful to eliminate “extreme” foods like coffee, vinegar, soy sauce, and alcohol, in favor of bland, neutral, and non-acidic foods"

    IC has been (theoretically) linked with autoimmunity, neurological disorder, and mast cell activation (the bladder is packed full of mast cells!). Unfortunately many, including myself, feel there is often a role for each of these in ME/CFS, and hence if you have IC too there may be also be a role for each here too

    WellBladder.com: "In some people, chronic inflammation and accompanying irritation may indicate the existence of an autoimmune condition like celiac disease"

    My major allergy is grass pollen, so I avoid most grass pollen family foods (especially wheat, and by extension, gluten). I get seasonal sleep disturbance around this time of year that I associate with increased water intake and increased exposure to allergens (hay fever), and in the past I have had one or two other symptoms that correlate with IC

    Personally I take EPA/GLA/Omega 3, NAC, turmeric, and zinc routinely anyway, which have inflammation modulatory, and reparatory effects. On top of that, to manage nocturnal bladder discomfort/diuresis I manage my evening water intake quite carefully, supplement with a little salt to aid systemic water retention, and use a nasal spray and take a fraction of an anti-histamine before bed:

    Hydroxyzine has been recommended on IC forums as an antihistamine that provides some relief from IC symptoms (noted by people who note allergies similar to mine e.g. hayfever, dust, food sensitivities). Not sure one can get it over the counter in the UK but I should find out and mention it to the doc

    Glucosamine & Chondroitin are supposed to be handy for healing the bladder too, although watch out if you have shellfish allergy

    If you suffer with sinus congestion type problems again I would recommend the regular use of manual lymphatic drainage: 'nasal release' (1-2 mins top and bottom, daily) and therapeutic application of things like menthol rub/gum

    Hope this helps :)
    Asklipia likes this.

See more popular forum discussions.

Share This Page