When you are sick, but no one understands…living with CFS

"Painful Descent", an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.

“Painful Descent”, an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.

Today’s subject is inspired both by my personal experiences with health issues and the experiences of others I know or have known that suffer from Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). Although I myself have not been formally diagnosed with CFS, my doctor has ruled out many other autoimmune conditions and it is looking more and more likely that CFS may be the culprit. Of course, this post is one that many others who have an “invisible illness” will be able to identify with. Please remember that just because someone doesn’t look ill on the surface, doesn’t mean they aren’t suffering or fighting a tough battle.

So, what do you think of when you hear the words Chronic Fatigue Syndrome? Do you call it the “Yuppie Flu” like so many others have in the past? Do you think these people are lazy, faking it for attention or all hypochondriacs? I hope not, but if you do, maybe some facts might change your mind. For instance, did you know that fatigue is actually just one of many symptoms of CFS? In fact, you have to have multiple symptoms to even qualify for a CFS diagnosis. Here is a list of some of the symptoms of CFS that afflict most sufferers to one extent or another:

  • Incapacitating fatigue for no apparent reason
  • Extreme fatigue after exercise or exertion
  • Sleep problems
  • Pain in joints
  • Muscle aches and muscle weakness
  • Chronic infections that are hard to cure
  • Sore throat and ear pain
  • Severe headaches
  • Constantly swollen lymph nodes
  • Nausea and IBS symptoms
  • Constant flu-like symptoms
  • Mental fogginess
  • Chest pain
  • Numbness
  • New or worsening allergies
  • Sensitivity to noise, light, odors, foods, chemicals, medications, heat and cold
  • Irregular heartbeat
  • Hypotension, possibly fainting
  • Dizziness
  • Depression and anxiety

And those are just SOME of the symptoms! I personally have experienced all of the above symptoms, some worse than others, but I am still one of the lucky ones with CFS. I can still get out of bed without fainting and I can still walk and do some normal activities on good days. Some people with CFS can’t climb a flight of stairs to the second floor of their home and some sufferers almost never leave their bed or home (especially those who have severe hypotension and fainting).

Also, for those who think this illness is all in the head, did you know that there have been reported outbreaks of CFS in communities where hundreds of people came down with it all at once and suffered severely from it for at least 5 to 10 years? This research leads scientists to believe that at least some cases of CFS are actually caused by a virus that really messes up the immune system for some reason. Although some CFS sufferers do eventually feel better, only a small percentage will fully improve and never have symptoms again. There is also no tried and true treatment so far. Treatment options currently used include antidepressants, stimulants, exercise, nutrition plans and various other alternative approaches. Although some of these treatments do help some people, there are still many CFS sufferers who have found nothing that helps them. Perhaps that is why the suicide rate for those with CFS is high compared with many other physical ailments.

So, after reading all that, has your view of CFS and those who suffer from it changed at all?

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7 thoughts on “When you are sick, but no one understands…living with CFS

  1. I have CFS/ME an my parents don’t believe me although I’ve been ill for just about 8 or 9 years now, definitely will be sending a link of your blog to them, they may just then have a glimpse of belief, Thank you for this!! I love this blog<3

    Liked by 1 person

    • I’m so glad you like my blog and that this post was helpful to you. I hope your parents do start to see that it is a real condition. I think most people have trouble seeing it as a real problem because the illness is so mysterious and hard to pin down.

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  2. Hasn’t changed my views because they reflect my own and my experience. I was fortunate when I was first diagnosed 20 years back and before, in that my doctor always believed I had something even when we weren’t sure what it was!

    Liked by 1 person

    • You sure were lucky! Even now it can be hard to find a doctor who takes the condition seriously and really delves deep to figure out what is going on. Since your user name says optimumhealthnow, I will assume you made a full or almost-full recovery. I hope someday to be able to claim the same 🙂

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      • I know! Most of my recovery is down to the help of my naturopath, but I was fortunate in that my doctor always believed me, even though he couldn’t do much to help. I recovered about 90% but I’ve had a bad crash this year — the usual CFS thing of doing too much for too long (in this case nursing my mother through bowel cancer — fortunately she’s made a 100% recovery — and undertaking a demanding course that I signed up for before she was diagnosed). Still, because of all the work and study I know the root causes and can work on them. Good luck with your doctor!

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  3. When you require a faster recovery, then you will
    have to eliminate temporarily products which only add to growth of yeast, making the
    infection to be worse and taking longer to cure.
    After a couple of days I had still continued to get worse so I went back after waking
    up that morning and was choking and having trouble
    breathing because my throat was so swollen it was closing up.

    Infections can appear in lots of areas but generally on the genital region, in skin folds,
    as well as in the mouth and around the finger and toe nails.

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    • Although it is not actually a cure for CFS, I do agree that eliminating products which add to the growth of yeast can help some symptoms. I have had to cut out yeast-causing products in the past and while it did not cure my CFS, it did help with certain symptoms, such as some of my chronic infections and my energy levels (eliminating the “sugar crash”). I do think diet and avoiding certain allergens can really make a difference in the CFS experience, but personally, I have not found an actual cure.

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