Blog Classic: Oct. 30, 2008
Do you have pain when you urinate or associated with sex? Are you running to the bathroom all the time? Are you frequently diagnosed with urinary tract infections (UTIs)?
These aren't symptoms of fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), and it might not be a UTI, either. You might have a bladder condition called interstitial cystitis (IC) that is common in people with FMS or ME/CFS.
Interstitial refers to the bladder wall (the word literally means "to stand betweeen") and cystitis is inflammation in the bladder. This condition can cause a lot of pain, and because it can make you feel like your bladder is full all the time, it can have you running to the bathroom constantly. Not surprisingly, these symptoms can keep you home a lot and lead to isolation and depression. Pain during and/or after intercourse can make you avoid it and damage your most intimate relationship. Add those to FMS or ME/CFS ... it's more and more piled on your plate of problems.
IC is tough to diagnose and treat as well. It takes most people 4 years to get a diagnosis, and after that you generally have to do a lot of experimentation to find a treatment/management regimen that works for you.
Learn more about IC, its symptoms, how it's diagnosed, treatment and management options and more:
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Thank you for posting this article about IC. Even though over 1,000,000 women and men suffer from this horrible disease, people are not aware of it. Much of the research monies available for IC have now been merged with funds for Fibromyalgia. While some people do have all 3 problems, I believe IC should still have it’s place in treatment, research and empathy.
I used to get up through the night, about eight to ten times to urinate. My kidneys just wouldn’t shut down and my sleep was very disrupted. I have found that amitriptyline (a tricyclic antidepressant) helped tremendously with this problem. I only get up once or twice now and my sleep is much more restorative.
I also used to have frequent painful bladder and kidney infections, but I don’t anymore. I don’t know if the amitriptyline has anything to with this, but amitriptyline does have antihismanic properties; maybe calming the reaction, calms the inflammation.
I would also make everyone aware that endometriosis is very common in women who also have ME/CFS (I’m not sure about fibromyalgia, but I think it’s also the case there), and that endometriosis can mimic the symptoms of a urinary tract infection.
The “implants” of endometriosis can stick themselves anywhere in your pelvic cavity, including to your bladder and urethra – on the outside of them – and cause pain and irritation, not just at the time of menstruation but at other times throughout the month, especially at mid-cycle when ovulation might be occurring.
I was treated repeatedly for symptoms of a urinary tract infection, and even given a cystoscopy which showed absolutely no signs of interstitial cystitis, before I was finally diagnosed with endometriosis.
Fortunately I don’t have IC however one of the many Fibro symptoms I suffer from is frequent urination. It’s toughest at night when my sleep is disturbed usually a couple of times. It often is hard to fall back to sleep. Just another lovely symptom of Fibro.
Glad you’ve written this article. I’ve had bladder problems and some times it’s an infection and other times not. However, not pleasant being accused of ‘crying wolf’ so I’m glad to be getting information regarding what this could possibly be. The strang things is it’s not unusual for me to have blood in my urine. Not usually a lot but it’s there and no explanation has been found / given for this. Thanks
IC isn’t any fun, especially with FM/CFS… BUT, I will say this positive thing about it: With a cystoscopy (a look inside of the bladder by way of the urethra with a teeny tiny little scope), it is possible to SEE interstitial cystitis. Through many years of pain from “invisible illnesses,” I felt tremendous relief (no pun intended
when the urologist who scoped by bladder showed my the photos afterward, explaining this newest diagnosis. Still, 10 years later, it’s the only one of my many physical complaints that I have actual proof of.
I realize that it isn’t CFS or fibro themselves but I have seen it listed on many lists of co-occuring conditions. I look at it much as I do IBS, MVP (which I have) and many more of a long list of conditions seen often in patients with fibro and CFS. There could be some link between the conditions but the research does not show it at this time.
I would like to add a possible helpful tip… (I’m not a doctor, what works for some people may not work for others)
I take a cranberry gel pill every night before bed along with my other meds. Cranberry naturally adjusts the PH of your urine and can help lower the frequency of the “need” to urinate. I used to have UTI’s all the time but haven’t had ANY since taking cranberry. If I start to feel that burning sensation when I urinate, I take two gel pills for a few days instead of one and it goes away.
If you don’t like pills, drink the juice. The trick is getting enough of it though.
I am NOT cured, but I have seen a definite improvement in my symptoms. It doesn’t hurt to try it.
There is more information online about how and why it works; I just don’t remember right now.
Good luck!
I have IC and it took a billion tests and 8 yrs to diagnose. Prior to my diagnosis I tried several bladder medications and nothing worked. Finally I was prescribed Elmiron and it has truly been my saving grace as well as boosted up my quality of life.
About the myofasicial pain . i have not been actually diagnosed , but know I have it. The tissue on the side of my leg….the fascia …it has a name iliotibial band hurts so bad at times. I believe in the theory, too due to having an epidural with my last child 13 yeaars ago. The nurse ansethetist was a dental patient and so wanted for me to use him. I had my other two children with nothing , but episotomy. I had only gained 10 lbs. It took him a while. I was very still. I asked if it was ok. He said yes, my back was like a road map and he could see everything. When I saw him at his dental vist, I asked him why I was hard. He said in his biggest of men…he did not know if the fibro(his wife has fibro) or working out , but my tendons and ligaments were like cement…he had never pushed so hard to get the needle in. my husband got sick.LOL! Thank God, he did not slip!