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Adrienne Dellwo

Painful Bladder in Fibromyalgia & Chronic Fatigue Syndrome

By October 31, 2009

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Oct. 31 is Interstitial Cystitis Awareness Day

A lot of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) develop bladder pain and other bladder-related symptoms that can be severe. These symptoms, though, are NOT related to FMS and ME/CFS -- at least not directly.

A condition called interstitial cystitis (IC) is a common overlapping condition for us. It can cause abdominal or pelvic pain, and it can mimic a urinary tract infection. In fact, it's so frequently misdiagnosed that most people have IC for about 4 years before they're diagnosed correctly.

If you develop bladder pain or other urinary problems, it could be a good idea to bring up IC with your doctor. To learn more about IC, the symptoms, and how it's diagnosed and treated, read:

Do you have IC? What symptoms have been worst for you? How long did it take to get a diagnosis? Leave your comments below so we can all learn from them!

Learn more or join the conversation!

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Comments
October 31, 2009 at 11:12 am
(1) Shawna says:

I noticed symptoms of a urinary tract infection and I just started taking Cranberry supplements every day. I don’t have the pain anymore but I am not going to stop with the Cran pills. They do no harm and my doctor said if they help, go for it. I always try a natural solution before I ask my Dr. for a prescription. At this time, I am taking 5 supplements and 5 prescriptions to treat Fibromyalgia and overlapping conditions.

October 31, 2009 at 11:36 am
(2) Joanna says:

I had a long history of bladder infections AND interstitial cystitis in my twenties. I was able to stop the infections with changes in birth control and other habits, but was baffled by the continued symptoms for years. Now I understand that is was most likely related to the fibromyalgia that was undiagnosed for a long time. I underwent many painful tests and procedures that did absolutely nothing to help me. I hope this knowledge will help some people avoid that.

November 3, 2009 at 5:48 pm
(3) Kaz says:

I have cfs and have not been able to have sex since 1999 (except for one surprising time!). I have been with the same partner and since 1999 we got married. Its a nightmare as I was sexually abused by my dad as a kid and I just want to be normal now. Mentally I feel as over it as I can be, I just want to get on my life, but the constant reminder of it all is very painful.

As if cfs wasn’t enough to deal with. I am lucky I have a very understanding partner and hugs are always available, he also understands if I need to goto the loo every 10 minutes!

I am in the UK where I have had loads of tests to disprove everything else, but they are not very up on ic over here. My gp thinks cfs is just about tiredness and has no knowledge of all the other symptoms that can go with it.

I see an occupational therapist who says daytime sleep is bad and when I try to explain that I have ic and sometimes have to get up every hour or more throughout the entire night, she says that that has nothing to do with cfs and I must have an infection. Well we proved I don’t, my immunologist understands there is a connection between the ic and cfs, but that has not trickled down the NHS overhere.

I could just whinge about this, but it won’t get me anywhere, theres no help overhere. Sorry, you got me on a day I am feeling sorry for myself – afterall worse things happen at sea!

November 6, 2009 at 8:51 pm
(4) Rebekah LaSala says:

Hi. I have been dealing with Interstitial Cystitis since March. My life dealing with this has been a chronic and constant nightmare.
I first want to say if you have IC (and I am of course holding myself accountable to this too when I say it) to:
1. Don’t give up on yourself. Tell everyone about it and tell them you need extra love and support. I for one come from an abusive family so I do not get support from my family, but I do from my husband.
2. Don’t shut up about it: Meaning: Empower yourself! HEAL YOURSELF! BE DILIGENT AND READ UP ON HOW TO DEAL WITH CHRONIC PAIN AND FIND A THERAPIST. I KNOW IT IS HARD, AND ALL OF THIS CAN BE VERY EXHAUSTING AND FATIGUING, BUT IT IS WORTH IT.
3. Write about it and reach out to whoever you can who is compassionate and willing to listen to you about it.
4. READ EVERYTHING you can and DECIDE YOUR TREATMENT PLAN AND WHAT WILL WORK FOR YOU: Do NOT base it on what someone else is doing, BUT DO RESEARCH THE POOR SUCCESS RATE ON MANY OF THESE PROCEDURES.
5.) GET OFF SYNTHETIC BIRTH CONTROL! I am using all caps for emphasis here! Use progesterone cream and read Catherine Simone’s books to find out why I am saying this.
6.) Take Fish Oil and Marshmallow Root and do NOT SUBMIT TO INVASIVE PROCEDURES, unless they are ruling out bladder cancer or other cancers. Try Cystoprotek on the IC network. Try Cysta Q. Try Bladder Ease by Vitanica.
Realize that your bladder represents a breakdown in our immune systems (those of us with IC) and it is up to us to find out where the root of the problem is.
My heart went out to the woman in the UK dealing with IC. I have news for you: IN the Pacific Northwest and I would presume more of the United States: There IS NOT ENOUGH RESEARCH, EDUCATION OR INFORMATION ABOUT THIS CONDITION! WORSE, WOMEN WHO HAVE THIS CONDITION LIKE MYSELF ARE MADE TO FEEL STUPID.
Don’t give up…Seek the Naturopathic Route: There is something to all of that. See below:
The hardest thing about having this condition is having had to deal with:

1.) Having to deal wtih the fact that I had to wait 3 months to see a “specialist” who dealt with IC, only to find out that since June, I have not been treated with respect by her or her office and I have been berated, demeaned and disempowered by them discouraging me to leave questions for the doctor.
2.) She got angry and upset with me when she realized that I was not going to submit to procedures like the Cystoscopy with Hydrodystention and she became hostile with me and also quite arrogant to assume even after I told her I did not want to do that procedure that I woudl do it. Why would I do it when it has a TWENTY PERCENT SUCCESS RATE? MEANING THE OTHER 80% OF WOMEN END UP WITH CRIPPLING PAIN? THE ONLY JUSTIFICATION FOR THIS PROCEDURE IS TO RULE OUT BLADDER CANCER. IF THAT HAS BEEN RULED OUT, THERE IS NOT OTHER REASON FOR IT. PERIOD.
3.) I became pro active and contacted Catherine Simone, author of many books on IC and she helped me a lot by telling me what Natural Supplements to take. However, I must say that I had to be extremely pro active and SEEK OUT OTHER OPTIONS TO HELP ME GET WELL. IF I HAD NOT TALKED TO CATHERINE, I WOULD HAVE JUMPED OFF A BRIDGE BACK IN EARLY JUNE…THANK GOD I DID NOT.
4.) I would suggest Support Groups, but I had terrible luck with one b/c everyone was feeling sorry for themselves.

5.) I WANT TO TELL YOU TO HANG IN THERE, LIKE ME. WE WOMEN NEED TO BAND TOGETHER AND UNITE, I have been suffering this horrible burning, stabbing, constant pelvic pain every day and it has been the hardest thing in my life to deal with.

6.) WE ARE WORTH IT AND WE CANNOT GIVE UP ON OURSELVES.
Sincerely,
Rebekah

November 7, 2009 at 12:03 am
(5) Tizzy says:

I was diagnosed with FMS 5-6 years ago. I have had bladder pain off an on for a long time. I finally was referred to a uroligist who tested for IC and sure enough I had it.

I have been on the medicatioon Elmiron for about a year and that has helped tha pain immensely. It takes time to work. Somehow it helps the bladder to rebuild the lining. I still have to run to the john frequently but there is a lot less pain.

I have had no side effects from this medication. what a change!!! The doc thinks it will be a long term thing. No side effects and little pain? I’ll keep taking it forever if need be.

November 7, 2009 at 6:17 am
(6) Angie says:

for Kaz…
never feel bad about letting it out Kaz! sometimes this is the only place you can be yourself and it sounds like no one is helping you get better! I’ve had bladder problems for so long it’s insane! I’m going for my 2nd bladder lift on Nov 26th but always feel like I have an infection when I don’t, I had no idea until I just read this that it would be related to my fibro! We all have a right to feel sorry for ourselves bud, it’s hard not feeling well. I think we get mad because we just can’t do all the things we want to do! no one believes us and it just makes it harder. I’m happy you have a man who tries so hard to understand and is good to you, mine does to but it’s hard, I feel myself pushing him away because I am so tired of the pain of sex. I used to like it, now I hate it! Everything hurts, he tries to understand but I still feel guilty and do it anyway just so I end up in pain for days and hating him! It’s a viscious circle, so hang in! one day at a time, for you, for me, for all of us. Is there some way you can get to a doctor that will really help you?

November 14, 2009 at 6:21 pm
(7) Marie Monderer says:

I’ve had IC for 35 years and have been on almost every antibiotic imaginable for bladder infections over the years. It took many years but I found an IC specialist who eventually put me on Elmiron and I am doing very well on that. The most important thing you can do for yourself is watch your diet because that triggers most of the pain. Eliminate from your diet: coffee, tea, cranberry juice, orange juice, alcohol, carbonated drinks, lemons, limes, any foods containing citric acid or ascorbic acid (there are many!!), tumeric, tomatoes, most fruit, spicy foods, to name those that bother me. As soon as I experience pain or frequency, I take my “rescue remedy” which is Prosed DS, a prescription drug that eases the spasms fairly quickly. There is also Prelief, which you can take if you want to eat or drink a little bit of the offending food and want to avoid a flare—it neutralizes the acid in the food or beverage. Prelief is OTC with the antacids. Tums will also work to ease the start of the flare. I highly recommend joining the ICA—the Interstitial Cystitis Association. Check out their web site and join—it is the best thing you can do. I have learned so much about this condition from their magazines and online. Good Luck everyone with this dreadful condition. But you can help yourselves with the right support, knowledge and a good doctor.

October 15, 2013 at 9:22 pm
(8) Tonya says:

I have not been diagnosed with fibromyalgia yet but the amount of symptoms i have are overwhelming. Along with many other symptoms I also had 3 bladder infections back to back and now 3 sinus infections back to back and new found allergies. Can anyone tell me if this is common? Also ,yes I have pain and aches from head to toe some times. Always something hurting but I cant say its excruciating pain. Bad yes. My biggest question would be does anyone else feel like the fatigue is worse then the pain. I think the fatigue and other symptoms hinder me more then the pain . Thanks in advance for any help

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