Question

I know that in addition to all the classic diagnostic symptoms of ME there are a considerable number of other symptoms that can sometimes occur. But should we always go and see our GP every time a new symptom appears? Or when an existing symptom changes character or gets significantly worse? In my case, after several years of having ME, I’ve now developed intermittent joint pains (without any swelling or redness) and bowel symptoms (mainly loose motions with occasional stomach cramps and bloating) that sound like irritable bowel syndrome. I haven’t yet mentioned these symptoms to my new GP – who tends to blame everything on ME! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. At the same time, I don’t want to find that a new and treatable medical condition is being missed

Answer

It is always a good idea to speak to your GP if/when a new symptom – affecting either physical or mental health – develops during the course of ME/CFS, even if the symptom is one that is often reported in ME/CFS. This is because it’s quite possible that a new or worsening symptom is being caused by a completely different condition that might be treatable.

For example, an overactive thyroid gland (thyrotoxicosis) can cause fatigue, sweating and palpitations. An underactive thyroid gland (hypothyroidism) can cause fatigue, constipation, increased sensitivity to the cold and cognitive dysfunction. These are all symptoms that can appear in the course of ME/CFS.

In the case of new onset joint pains it’s important to make sure these aren’t being caused by something like rheumatoid arthritis or lupus (SLE). There are very sensitive immunological blood tests that can help with making a diagnosis here. And although symptoms of irritable bowel syndrome (IBS) are very common in ME/CFS, it’s also important to check that these aren’t being caused by conditions like coeliac disease or an inflammatory bowel disease (IBD). As with joint pains and rheumatoid arthritis, there is a simple screening test for coeliac disease. So in the case of new onset bowel symptoms it’s worth checking for inflammatory markers (i.e ESR and CRP blood tests) and a screening blood test for IBD called calprotectin.

Please go back to your doctor if these new symptoms continue, or get worse, because they do need to be properly assessed and investigated. You may need to be referred to a rheumatology or gastroenterology specialist if there is still uncertainty about the cause.

See also: Joint Pain, Rheumatoid Arthritis.

More information

• The ME Association has detailed information available to download from the website shop:
  • We examine thyroid disease, review the symptoms and overlap with ME/CFS, the testing that can be done, and the treatments that are available.
  • A significant proportion of people with ME/CFS report that they also have stomach and bowel symptoms very similar to those found in irritable bowel syndrome (IBS). We examine the symptoms, explain how they should to be investigated, and discuss available treatments.
    • You can buy a key from The IBS Network shop or Disability Rights UK shop that can help you access public toilets if you get symptoms while away from home.
  • The Symptoms category of the website shop contains all the information you need to know about the most common traits in ME/CFS.
• The NICE Clincal Guideline: Irritable bowel syndrome in adults: diagnosis and management | February 2008 (Updated April 2017).