As most things in life go, writing about some topics is a bit more challenging than others. I was diagnosed with a rare (likely autoimmune) condition a little over a year ago and haven’t found the voice to share what life has been like since.
More recently, I’ve noticed that taking the time to write how it feels to live with a chronic pain condition can sometimes be helpful to more than just you. Support groups, and blogs, and forums about my condition have provided patients who are facing similar problems a place to come together, relate, and share tips on what has helped them improve their quality of life.
Nowadays, I find myself reading through forums and support groups to hear what other women (and some men) are going through with their symptoms. I say mostly women because as many of you probably already know, 80 to 90 percent of autoimmune patients are women. This phenomenon has not been explained scientifically, but it is one of the reasons that I believe my condition is an autoimmune disorder.
I suffer from Interstitial Cystitis (IC), also known as Painful Bladder Syndrome, which is an inflammation of the lining of the bladder that leads to painful urination, a constant urge to use the restroom, tightened pelvic floor muscles, and other symptoms depending on the person. The symptoms feel very similar to a bladder infection or a urinary tract infection (UTI).
There is no cure for IC and the last FDA-approved medication was released in 1995, called Elmiron. Most IC patients don’t take Elmiron because it doesn’t always help relieve the symptoms and side effects like dry mouth or hair loss make it unfavorable.
One of the biggest challenges of living with IC is the process of diagnosing the disease. Many patients seek help from several different healthcare professionals before a doctor is able to accurately diagnose their disease. IC costs the United States over $100 million annually due to direct healthcare costs and loss of worker productivity.
Once you are diagnosed the treatment options are limited. Most people suffering from IC today achieve remission or a lessening of symptoms by following a strict diet that limits acidic foods, MSG, soy, and more. “Trigger foods” vary depending on the person, which makes it especially difficult to settle on a diet that is best for your pain management.
Most doctors recommend using a food diary to keep track of meals and to journal how certain foods affect your pain levels and other symptoms. Like a lot of other health conditions, there just isn’t enough research out there to provide patients with a treatment plan that works. In fact, doctors haven’t even pinpointed what causes the condition. Fortunately, there is a lot of current research underway to find some answers.
One study that I’ve been keeping my eye on, and am excited to see the results of, is testing the efficacy of bladder instillations. This is a common treatment type for patients with severe IC where the bladder is filled with a solution that helps reduce inflammation in the bladder to provide pain relief. The study also tests the effects of oral gabapentin, which has been known across forums and pelvic pain blogs to have helped many IC patients find relief.
Primary Biliary Cholangitis
Another autoimmune disorder that affects my family is called Primary Biliary Cholangitis (PBC) or Cirhossis. PBC is a progressive liver disease that attacks the bile ducts of the liver. As a result, bile seeps out into the liver which then attacks cells and worsens the condition. As time goes on, the liver scars and weakens, leading to liver failure known as cirrhosis.
Like IC, there is not enough research out there to successfully treat PBC. The only FDA-approved medication for first-line therapy is called ursodeoxycholic acid (UDCA or Ursodiol). Approximately 40 percent of patients who try this therapy don’t respond, and 5 percent have such poor side effects that they have to stop treatment.
Obeticholic acid (Ocaliva) is approved by the FDA for second-line therapy for patients who don’t respond or have an inadequate response to UDCA. Unfortunately, 50 percent of patients don’t respond to this second line of therapy and some even experience a worsening of symptoms.
When my cousin was diagnosed with PBC it put my chronic pain condition into a whole new perspective. Although I too suffered from daily pain, at least my condition wouldn’t lead to major organ failure someday. We have found support in one another, and in the hope that before we are middle-aged women there will be more research released on our conditions that can help treat them more effectively.
One interesting PBC clinical trial is testing the efficacy of a new drug called Seladelpar. It is an investigational therapy used in patients who didn’t have adequate results or couldn’t tolerate UDCA treatment. They are in the third phase of the study, and so far the results have been positive.
Whether you’re an IC patient or a PBC patient, it can be difficult for your friends or family members to understand how you feel because your symptoms are not visible to those around you. Our community has categorized our illnesses, and many others, into a group of invisible illnesses. Which means that you are chronically ill but your symptoms are not apparent or do not seem as severe as they feel.
When a person’s illness isn’t easily visible, it can be difficult for outsiders to grasp the challenges he or she faces. This can be extremely frustrating, especially for patients who feel pain daily or constantly on an area of the body that isn’t comfortable to talk about regularly.
Family members and friends who are supporting a patient with a chronic pain condition or an autoimmune disease should read this article on invisible illnesses to better understand and approach the situation.