Chronic Fatigue Syndrome Patients – Sick and Tired of It All

Chronic Fatigue Syndrome (CFS) is an immune dysfunction disease that is currently treated like the red-headed stepchild of the medical community. Despite the fact that CFS has been recognized by the CDC, many doctors still believe it isn’t a real illness, but others who do recognize it as a valid concern ignore it because there still isn’t a simple diagnostic test to identify it. Since there is no cure for CFS, medical professionals are hesitant to label a patient without being able to fix them.

Patients who have CFS are sick and tired of being shoved aside by the medical community. They are literally sick and tired as well. Take a look at the primary symptoms of Chronic Fatigue Syndrome, four of which must be present for six months or more for a diagnosis:

  • Unrefreshing sleep
  • Post-exertional malaise
  • Poor memory and/or concentration
  • Joint pain without swelling or redness
  • Unexplained muscle aches or pain
  • Headaches of a new type, pattern, or strength
  • Lymph node tenderness in the neck or under the arm
  • Sore throat

Any one of those symptoms alone would be annoying to live with for a week at a time, let alone for six months. Can you imagine not getting a single good night’s sleep for six months? Six years? What if every time you went to work out at the gym for  30 minutes, you were bedridden for the next three days? How about if that happened every time you walked up a flight of stairs, let alone a workout? Then add to that the frustration of having your friends, family, and even your doctors tell you that there’s nothing wrong with you, that it’s all in your head.

Then there are the secondary symptoms associated with CFS. Each patient will experience a unique combination of these physical and  mental complaints, which ranges from annoyances to serious obstacles to overcome in daily living  activities. Secondary symptoms include:

Dizziness, fever, chronic cough, brain fog, irregular heartbeat, nausea, abdominal pain, chest pain, ear pain, jaw pain, morning stiffness, visual disturbances, sensitivity to light, mood disorders such as anxiety or depression, dry mouth, sensivitity to odors, limbs that feel heavy, shortness of breath, unexplained weight change, hypersensitivity to heat and cold, gastrointestinal problems, orthostatic instability, allergies, chills, night sweats, food sensitivities, sensitivity to chemicals, noise sensitivity… and more.

If you start putting these things together with four or more of the primary symptoms, you can begin to understand why Chronic Fatigue Syndrome patients have valid concerns, and are not just “lazy” or hypochondriacs. We happen to know someone who has CFS who can personally attest to these concurrent symptoms: difficulty falling asleep and staying asleep, ineffectiveness of both OTC and prescription sleep medications, post-exertional malaise, poor memory, poor concentration, joint pain, unexplained muscle pain, skin that is sometimes painful to the touch, occasional intense headaches, anxiety, multiple gastrointenstinal problems, sensitivity  to light, hypersensitivity to heat, dizziness, brain fog, chronic cough, heavy limbs, and food sensitivities. As a matter of fact, she has been known to feel faint taking a shower and have to crawl up the stairs at night when her legs feel too heavy and weak to walk upright. Do you want to tell her it’s all in her head?

If you know someone who has CFS, there are a few things you should never say or do:

  • DON’T refer to them as lazy, even jokingly. It’s been said hurtfully before.
  • DON’T tell them they just need to get out more. Leaving the house can be exhausting.
  • DON’T tell them they need more exercise. Exercise makes CFS worse. Trust them. They’ve tried it.
  • DON’T tease them when they have to leave early. Just because you can party for four hours doesn’t mean they can.
  • DON’T pressure them into coming out when they say they’re not feeling well.

What you can do is be supportive. Even if you don’t understand their illness, you can try to be understanding. You may need to call them to remind them when you have plans together – their memory may not be very good – and don’t lay on the guilt if they have to cancel on you. Reassure them that you believe them – they don’t get much of that from the rest of the world.

Want to do more? Join the Blue Ribbon Campaign or visit the CFIDS Association of America. Because CFS patients are sick and tired of being sick and tired.

{ 1 comment… read it below or add one }

Shelli June 12, 2009 at 5:17 pm

I have had CFS for three years now. It is difficult, because most people just don’t understand what it is! In fact, I feel embarrassed telling people what is wrong with me. Can you believe I’ve actually wished I could tell them something more \real\, like a brain tumor or MS? There is a great article on the stigma of CFS at http://www.chronic-fatigue-community.com/chronic-fatigue-syndrome-stigma.html. The best thing to fight against the stigma, though, is people like you — people who choose to get informed and then share what they know with others. You have no idea how much you are helping those of us who are hiding in the shadows with this disease! Thank you for this post.

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