person struggling to carry intestines while the sunrises on one side and sets on the other

Chronic Fatigue Syndrome and Crohn's Disease

Last updated: February 2020

Sadly, most people with inflammatory bowel disease don't just suffer from one condition. Not only does having one autoimmune disease make you more likely to have another (don't you just love that statistic?) but we also are more likely to suffer from things like nutritional deficiencies and fatigue. Today, I'm going to talk about chronic fatigue syndrome: something that studies suggest we're much more likely to have as IBDers. But what is it? And how does it differ from the fatigue we struggle with every day anyway?

What is chronic fatigue syndrome (CFS)?

While you might be used to suffering from fatigue all the time, chronic fatigue syndrome isn't just the definition of having fatigue on a 'chronic basis.' It's a condition that should always be diagnosed by a doctor; who will exclude other causes and take a look at other symptoms. CFS isn't JUST about being tired.  It's defined by fatigue that lasts at least six months; along with all sorts of symptoms, such as problems concentrating, joint pain, headaches, sore throat and sleep not making much difference to energy levels.

How is CFS linked to Crohn's disease?

A study has shown those with Crohn's disease, in particular, have a much higher risk of developing CFS than healthy controls but this wasn't the case necessarily with ulcerative colitis. The study also found the risks was more in males and increased as we got older. There's not much understood about the cause of CFS in the first place, so it's difficult to know why this is.

Although, it is thought CFS could be linked to our digestion as one study has found that some people with chronic fatigue syndrome have lower levels of certain strains of good bacteria when compared to the general population; which as we know those of us with Crohn's often struggle with our gut bacteria too! Of course, a lot of the symptoms of CFS also overlap with Crohn's disease too- joint pain is common and problems concentrating are caused by our nutritional deficiencies and perhaps as a side effect of medication too.

How can we deal with CFS and Crohn's disease?

There's no magic solution for either of these conditions but in my research, I thought I'd share a few things I've learned that may help.

  • Make sure your doctor checks your vitamin levels regularly. An obvious one, but I recently realized my ferritin (aka iron stores) have been really low for a while. Because I'm not actually anemic, my doctor hasn't done much/checked them much but since reading up on this, it can definitely cause fatigue! Of course, getting things like our B12 and Vitamin D is important too.
  • I think it's hard to be taken seriously if we go to the doctors with suspected CFS as they'll just blame it on our illness! But it's worth printing off the diagnostic guidelines of CFS. If you're in the UK at least (like me!), a diagnosis is important for things like getting access to support (CBT and graded exercise therapy is sometimes offered).
  • Some suggest that undergoing a graded exercise therapy program can help but there's not much evidence to suggest it can (This is when the individual sets goals and slowly works towards them with a specialist).
  • As there seems to be a gut bacteria link, it could be worth taking a probiotic.

Do let me know below if CFS is something you've experienced and the things that have helped you?

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

What has been the most helpful for managing IBD symptoms?