If you’re struggling with ME/CFS, help is at hand…

In our last blog post – It’s ME Awareness Week: Here’s how you can help… – we looked at some of the ways that you can help support someone living with ME. We also gave you some advice about what not to say to someone with ME. Even though you think you’re helping and giving them encouragement, your good-natured words can often have the opposite effect.

For today’s post, we’re sticking with the ME/CFS theme and are going to go over some of the symptoms exhibited by ME/CFS patients, as well as some of the mistakes people make in the early days. We’ll also look at what you should do if you or someone else thinks they have ME/CFS.

Common ME/CFS symptoms

The most common symptom associated with ME/CFS is extreme fatigue that’s not relieved through rest or sleep. Now that can be fatigue that has started recently, has lasted a long time or that keeps coming back. This fatigue will prevent you from doing many of the things you normally do and even activities of daily living (ADLs) can be extremely difficult.

Another telltale sign of ME/CFS is post-exertional malaise i.e. a worsening of symptoms following any exertion or activity – often not until 48-72 hours later. Even something like a short walk – which might not seem very strenuous at the time – can result in someone with ME/CFS crashing hard a couple of days later.

The third common symptom typically associated with ME/CFS is brainfog. That’s basically when someone experiences problems thinking, concentrating and remembering things in the short term. Don’t simply dismiss brainfog and put it down to getting old. It can often be a sign that something else is going on.

  • Unrelenting fatigue – Fatigue that’s not relieved through rest or sleep and prevents you from carrying out activities of daily living. It can be continuous or recurring.
  • Post-exertional malaise – This is a feeling of malaise (weakness or discomfort) that comes specifically after an activity and often not until 48-72 hours later.
  • Trouble thinking – This is often referred to as brainfog. This includes trouble remembering, as well as difficulty concentrating and following conversations.
  • Muscle and joint pain – This can be pain that’s intermittently or consistently in a specific area of your body or pain that seems to move from one area to another.
  • Headaches – These can be continuous or recurring and constant in intensity or fluctuate. There may be potential triggers or they may feel random.
  • Issues with sleep – This can be struggling to drop off, disturbed sleep, not being able to sleep through the night and vivid and disturbing dreams.
  • Flu-like symptoms – Persistent flu-like symptoms, including sore throat and sore but generally not swollen glands, without actually being the flu.

NB – This list of symptoms is based on the criteria used by the NHS in the UK.

And here are the symptoms of ME/CFS in a handy infographic for you to refer back to whenever you want:

Please consider sharing this infographic with your friends/loved ones and help raise awareness of ME/CFS

Factors that often exacerbate ME/CFS symptoms

One common story we encounter is where someone exhibiting signs of ME/CFS attempts to pull themselves together by hitting the gym. It’s a pretty natural response, but, given the likelihood of fatigue and post-exertional malaise occurring, this is actually one of the worst things someone can do.

People who don’t know they are experiencing symptoms ME/CFS can attempt to ‘solve’ their sleep issues by relying heavily on sleeping medication in an attempt to help them get a good night’s sleep. However, the problem with relying on such medication is that it’s not sustainable, it doesn’t address the root cause of the issues they are experiencing and the sleep it affords usually isn’t the kind that’s conducive to relieving the fatigue typically associated with ME/CFS.

The third thing many ME/CFS patients do in an attempt to lead normal lives is take stimulants. Things like Berocca, energy drinks or coffee can help perk someone up when they’re feeling a lethargic, but, again, they should never be relied upon as they are not addressing the root causes.

Some ME/CFS patients also find that standing up too quickly makes them feel dizzy, feint, light-headed and/or have heart palpitations. This is something known as Postural orthostatic tachycardia syndrome (POTS) and it’s caused by an abnormal activities relating to the function of the heart after someone sits up or stands up too quickly.

Getting help with ME/CFS

Unfortunately, there isn’t a definitive blood test (yet) to diagnose someone with ME/CFS. But that doesn’t mean it’s not a real condition. If you or someone you know is experiencing any of the symptoms we’ve outlined above, help is at hand.

As we’ve already mentioned, post-exertional malaise is one of the main symptoms associated with ME/CFS. That’s why activity management (pacing) is so crucial for people living with the condition. By understanding the need for rest and activity, people with ME/CFS can reduce the chances of post-exertional malaise flare-ups.

Now obviously everyone is different, so what causes symptoms for one person won’t necessarily beg the cause for another. The key is to understand individual symptom (like post-exertional malaise or fatigue) catalysts and work to address them.

If all or some of the things we’ve gone over in today’s post sound familiar, there’s a chance you (or someone you know) might have ME/CFS. If you’re battling with something that feels like you’ve caught the flu but never seems to get better, we urge you to get some help and support.

You can:

  • Contact your GP – Ask for a referral to your local ME/CFS specialist clinic. If your GP isn’t very accommodating, get a second opinion.
  • Find an ME/CFS support group near you – You can find nearby ME/CFS support groups by checking the MEAction, The ME Association and Action for ME websites (NB – The Helpful Clinic is not affiliated with any of these organisations).
  • Get help from a private practitioner – There’s a growing body of practitioners (like ourselves) who specialise in conditions such as ME/CFS, Burnout, Fibromyalgia and Irritable Bowel Syndrome.

If you’re struggling and feeling disenchanted, maybe a Discovery Call with The Helpful Clinic could be what you need. It’s free and will give you a chance to find out how we might be able to help you get back on track in terms of your emotional and physical health.

You can also download our helpful information pack to learn more about us, the support we offer and how it could be of benefit to you.