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Fibromyalgia, Chronic Fatigue Syndrome & Interstitial Cystitis

Dealing With IC On Top of Fibromyalgia or ME/CFS

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Updated April 20, 2013

Fibromyalgia, chronic fatigue syndrome and interstitial cystitis (IC) -- a painful bladder condition -- frequently occur together. Women may be up to 10 times more likely than men to develop it.

Having IC alone can impose a lot of restrictions on your lifestyle and, like fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), it's linked to depression. Also like FMS and ME/CFS, IC can be difficult to diagnose, treat and manage. Some people have good luck with basic treatments and dietary changes, while others may need more intensive treatments or even surgery.

What Is Interstitial Cystitis?

Interstitial cystitis (IC) is abdominal or pelvic pain related to your bladder getting full, often accompanied by other urinary symptoms, but with no infection or other obvious diseases. The cause of IC is unknown. Frequently, doctors misdiagnose it as a urinary tract infection, and most people have IC for about 4 years before they're diagnosed correctly.

Symptoms of IC include:

  • Urinary frequency (more than 8 times a day)
  • Urinary urgency
  • Urinary discomfort
  • Pain during or after intercourse
  • Pelvic pain

You're most likely to develop IC in your 30s or 40s, but it's also possible to get it earlier or later.

Why Do Fibromyalgia, Chronic Fatigue Syndrome & Interstitial Cystitis Occur Together?

Good question! Problem is, we don't have an answer. Researchers are still trying to puzzle out the causes and underlying mechanisms of all these conditions, and until they can, we probably won't understand why they overlap. Some possibilities exist, including:

  • Researchers suspect chronic infection could play a role for all 3 diseases
  • The pain of all 3 is believed to originate in the nerves
  • Chronic pain from IC may lead to the central sensitization suspected in FMS and ME/CFS
  • Research released in early 2009 suggests that some patients with IC have a systemic syndrome and not one that's confined to the bladder

Because all 3 conditions are far more common in women, hormonal or anatomical differences may be at work as well.

An emerging umbrella term for conditions involving central sensitization is central sensitivity syndromes.

Diagnosing Interstitial Cystitis

IC is diagnosed primarily based on symptoms. Before diagnosing IC, your doctor will need to rule out other possible causes of your symptoms. Tests include:

  • Bladder biopsy
  • Cystoscopy (endoscopy of bladder)
  • Urine analysis & culture
  • Urine cytology (for detecting cancer and inflammatory diseases in the urinary tract)
  • Video urodynamics (which shows how much urine it takes for you to feel the need to urinate)

To confirm an IC diagnosis, your doctor may perform a hydrodistention, in which your bladder is filled with water. That helps your doctor view your bladder walls for possible hemorrhages common in people with IC.

IC isn't well recognized or easily diagnosed, so if you think you have it, mention it to your doctor.

Treating Interstitial Cystitis

There's no cure for IC, and treatment needs to be tailored to the individual. It can take a lot of trial and error before you find the right combination of therapies and lifestyle changes.

Your doctor may prescribe one of several medications for IC:

  • Elmiron (pentosan)
  • Opioid painkillers, such as Vicodin (hydrocodone acetaminophen) or Percocet (oxycodone acetaminophen)
  • Tricyclic antidepressants, such as Elavil (amitriptyline)
  • Vistaril (hydroxyzine)

Other treatments include:

  • Bladder training (relaxation techniques to train the bladder to go only at specific times)
  • Medicines placed directly into the bladder
  • Physical therapy and biofeedback (aimed at relieving muscle spasms)
  • Surgery

Dietary changes also can help manage IC. The Interstitial Cystitis Association has information about dietary changes that may help.

Interstitial Cystitis Treatment vs. Fibromyalgia/Chronic Fatigue Syndrome Treatment

If you're being treated for IC and FMS or ME/CFS, you should talk to your doctor and pharmacist about any possible drug interactions. For instance, you shouldn't take SSRI/SNRI-type antidepressants, which are common treatments for FMS and ME/CFS, with tricyclic antidepressants used for IC. Also, the FMS treatment Lyrica (pregabalin) doesn't mix well with prescription pain medicines.

However, the tricyclic antidepressants prescribed for IC work well for some people with FMS or ME/CFS, and other IC treatments such as physical therapy and biofeedback may provide a cross-over benefit. You may also have food sensitivities that exacerbate more than one condition, so an elimination diet could really help you.

Because pain from other conditions can make FMS symptoms worse, you'll really benefit from finding a good treatment regimen for IC.

Living With Interstitial Cystitis & Fibromyalgia/Chronic Fatigue Syndrome

Any one of these conditions is hard to live with, so when you have them in combination it can take a big toll on your life. Limitations imposed on your life by pain, fatigue, and urinating possibly dozens of times a day often can lead to depression, loss of social life, unemployment and other problems.

It's important to find and follow a treatment regimen that works for you, and to seek out support either from people in your life or support groups, online or in your community.

Here are more resources to help you learn about, manage, and live with IC:

Sources:

Hanno PM. Painful Bladder Syndrome/Interstitial Cystitis and Related Disorders. In: Wein AJ. Wein: Campbell-Walsh Urology. 9th ed. Philadelphia, Pa: Saunders Elsevier;2007:chap 74.

Leslie A. Aaron, PhD, MPH; Mary M. Burke, MD; Dedra Buchwald, MD Arch Intern Med. 2000;160:221-227.

Moldwin RM. Rational approaches to the treatment of patients with interstitial cystitis. Urology. 2007;69:73-81.

Urology. 2009 Jan;73(1):52-7. Antecedent nonbladder syndromes in case-control study of interstitialcystitis/painful bladder syndrome

Webster, D.C. “Sex, Lies, and Stereotypes: Women and Interstitial Cystitis” The Journal of Sex Research Volume 33, Issue 3 (1996): 197-204.

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