First up in my CFS Symptoms Series is the incapacitating fatigue PWCs (people with CFS) experience. Although this is only one of many symptoms we experience, this one has to be the worst.
The causes of Chronic Fatigue Syndrome are still unknown, but studies have shown that multiple nutrient deficiencies, food intolerance, or extreme physical or mental stress may trigger CFS. Studies have also indicated that Chronic Fatigue Syndrome may be activated by the immune system, various abnormalities of the hypothalamic-pituitary axes, or by the reactivation of certain infectious agents in the body.
To try and explain the type of fatigue PWCs experience is very difficult. It is not your normal tired. “Incapacitating fatigue is experienced as profound exhaustion and extremely poor stamina. I had written an online article one time where I tried to explain the fatigue experienced with CFS. I used what I call my “Balloon Analogy”:
Imagine a balloon full of helium floating in the air. Now take the balloon, untie the knot and leave all of the air out. What happens? It will fall to the floor. Pick up the balloon and try throwing it back up into the air to float. What happens? It falls to the ground. No matter how many times you throw the balloon up, it’s going to fall back down. You can’t force something that is not there. It’s the same with Chronic Fatigue Syndrome. CFS is more than just the normal tired. There are days when I am just like the balloon analogy I used. There is absolutely no energy available to do anything, even get out of bed.
People severely ill with chronic fatigue syndrome have a functional level that is significantly lower than that of someone with cancer undergoing chemotherapy, someone with heart disease or multiple sclerosis. So obviously we are a lot sicker than the name “Chronic Fatigue Syndrome” implies.
It is normal to be tired when you work, are raising a family, and just in today’s stressful world in general. When I was still able to work, I worked many hours a week (more than full-time), but I always felt good at the end of the day even though I was tired. I had accomplished a lot during the day and it was a purposeful tired. After a long hard day, most people go to bed, sleep, get up and start all over again refreshed and ready to go. Ever since I developed CFS, I have always had this feeling of defeat because I wake up in the morning feeling the same as when I went to bed – and I hadn’t done anything yet. It is as though there is this never-ending exhaustion that refuses to leave – day after day, week after week, and year after year.
The fatigue with CFS is truly disabling. We often hear people say, “I am so tired/fatigued, I can’t move another step”. For someone with CFS, this is not an exaggeration. This is our life. Physically, when a CFS flare hits, there is no energy reserve. Taking a shower may be all it takes to put a PWC in bed for the day – or even the week. I have had times where I have had to physically crawl to the bathroom because I could not walk. There is no “forcing” it with CFS.
Another very frustrating aspect with the disabling fatigue is that a PWC desperately wants and needs to sleep. The body is so weak that it begs for sleep, yet because of the completely sick and miserable grip CFS has over the PWC’s body, sleep will not come, or it will only come in short waves.
Chronic Fatigue Syndrome disrupts work and family life for hundreds of thousands of people. Because of the sheer devastation of this disabling fatigue, many of us have been forced to give up our jobs and go on disability because we are no longer reliable, no matter how hard we try to be. There are many more PWCs fighting to receive disability either through the government or work due to the stigma that surrounds CFS.
The emotional affects of CFS are almost as devastating as the physical ones. Most PWCs (myself included) I have talked to were high achievers, “type A” personalities who loved life, loved working and who wrapped their identity around what they achieved. Once CFS took over their lives, they no longer felt good about themselves or knew who they were. Everything they did in life revolved around physical and mental stimulation. Now that they can’t do anything at all, or very little, it is as though life no longer had any meaning. I know I often said to family members and friends, “Who am I if I can’t work?” Even though I was a wife and a mother, I still had that intense need to work – I still do. For those with CFS who were the sole supporters of their family, the loss was even greater. Depression is common among CFS patients, but is not the cause of the illness. The depression with CFS is because we are sick, we are not sick because we are depressed.
Socially CFS has left many PWCs isolated from their family and friends. It’s sad to say, but you do find out who your real friends are when you become ill with this disease. It is very hard for people to understand how someone can feel sick day after day, week after week. Most people when they become ill get better. We don’t.
Because the fatigue is so unpredictable with CFS, it is hard to make advance plans. Many times when we do, we have to cancel so many PWCs avoid any type of social events completely. We can get up feeling okay but by lunch or dinner time a PWC can be bedridden. After canceling so many times, friends and family members take it personally and invitations usually cease. Many times people will look at us as “flakes” because they think we are just trying to get out of doing what we promised when in reality, we just physically can’t. I rarely volunteer for anything anymore for this reason. I don’t want to promise something I physically might not be able to deliver.
Isolation among PWCs also occurs because other people close to us just don’t get how traumatic the fatigue is for us. Loved ones will say things like:
– Suck it up
– You need to get out of the house
– Get a hobby
– You’re just depressed
– I’m tired, too but you don’t see me lying around the house
– and many more rude comments
We are often accused of being attention seekers, lazy, and bored and people tire quickly of being around someone who is sick all of the time.
So after reading this article, I hope I have shed some light on how severe the fatigue is in CFS. If you had doubts before about the validity of this illness, I hoped I took those away.
I would like to hear how others with CFS describe their incapacitating fatigue. Please comment!
Tomorrow I will discuss the next major symptom of CFS – unrefreshing sleep.
I have only known of your blog recently. Yesterday and today’s post spoke of my life. I feel trapped somewhere deep within this illness. I have every single attritube listed yesterday, except for seizures. Gee – maybe there’s something I have to look forward to. Sorry for the sarcasm, but I am sick and tired of being sick and tired. My husband used to describe one of my greatest qualities was my “zest for life”. How ironic. I want to write more, but I can’t think and I’m too weak to formulate the thoughts or words – oh, maybe I should just suck that up too. I am the family “breadwinner”, walking (no crawling) on a fine line. I now have my unemployed husband working for me, as I cannot do my job on my own. For the most part, if I was not working in my own business in my home, with a dress code that revolved around pajamas, I would be unemployable. It blows my mind to even put that down in words. It’s not for lack of knowledge, ability, drive, accountability, or any other adjective to describe a competent worker. It’s this digusting illness that has decided upon the moments of my life. Yes, I know, now I sound like a victim. Well, maybe I feel like one at this moment. I have 2 sons who are older, fortunately, where they do not require my physical care. However, there are many other aspects that have been ripped away from me these last years. If I can’t believe this illness and what it does, and I’m living with it, I guess it’s unfathomable to the rest of the population who don’t have a clue. I am sitting here at my desk, just about holding my body upright, closing my eyes and praying for some sembalnce of a workable day. Thank you so much for this amazing, well-thought out, insightful blog. I only “found” you 3 days ago, but I have been voting for you daily. Regardless as to the outcome, you are a winner. This is by far the best CFS blog I have seen thusfar. Thank you again, Nancy
Thank you so much, Nancy for your support of Fighting Fatigue. I understand your pain – I really do. For us people will often say things will get better, but we know that this is our life. I hope you find some peace.
Irene Johnston says
I just found your website last week through the weblog awards site and just wanted to say how validated I feel after reading your posts. I was diagnosed with bi-polar mood disorder in 1980 and part of my treatment was lithium. After 5 months on this substance I had gained 100 pounds and began vomiting continually with any exertion. By the time I was hospitalized I had severe lithium poisioning and had to be taken off all my meds until the lithium cleared my system. Since that time my moods have been stabilized through Paxil, vitamin therapy and acupuncture but the chronic fatigue developed from the lithium poisioning is always a part of my life. The Chinese medical doctor who treats my condition has helped me improve my energy level but I am still lucky to have 1 semi normal day per week. Of course, like most others with this syndrome, I have so many neglected chores to do that I run around trying to get them done before the fatigue settles in again. The worse part of this illness is the feeling of uselessness and isolation from the outside world. I am lucky that many of my friends have stayed with me and supported me but I am only able to visit with them in my home and on a very casual basis as I am unable to prepare a meal for them like I used to and my house is always in a state of disaster, although my husband tries to help with as much as he can. I would love to email your post about extreme exhaustion to some of my friends who tell me that I just need to get out more or go for a walk, etc. and then I would have more energy. When I try to explain the extent of my tiredness to them, I feel that I am just sounding like a pitiful and lazy person. Anyway, thank you for putting the effort into this blog. I feel like I have finally found a place where I am accepted without judgement.
Danease Gresch says
Sandy, I just found this blog as it was posted on Facebook. You so accurately describe what I go through with the fatigue flares. I also have Fibromyalgia and after being diagnosed with Fibro, Menopause set in which further exacerbated the symptoms I was having. I was very sick during the worst part of Menopause. I had every symptom in the book but the pain from the Fibro and the unrelenting fatigue was the worst. There are mornings I get up and after only doing a few things, I must lie down and sleep until I feel refreshed enough to get up and continue with the day. What we are not told is that there are root causes to our symptoms, many tied to Thyroid dysfunction and Adrenal Exhaustion. But we have to find the right doctors or alternative health professionals who take us seriously and do the right tests to diagnose this. Then the treatment has to be tailored to our symptoms in order to get any relief. Professionals who understand and can treat those of us with these symptoms are few and far between. When you do find a clinic, they charge you well over $2,000 for a year of treatment that you can only hope will work; and most of that money is not recovered from insurance plans. In desperation to get well, we will spend this much and more and go in debt in the process.
I have had encephalitis about 17 years ago and ever since i feel very tiered all the time and my personality has changed a lot. I have been told that i am not the same person any more. Now i am getting so frustrated with the fact that i am afraid to go out because i get disorientated and feel light headed.Plus i have regular headache and almost constant pain. Most of the symptoms for CFS/ME i have got but my GP branded me with Depression and was that as far as she was concerned which made me really angry. For my doctor to start taken me seriously it took another doctor to refer me to the ME clinic where i had one 2 hour introduction to CFS/ ME which excepted me but now i am struggling to get diagnosed. I am just wondering if anyone knows what happens after being diagnosed because i am curious to know as i am getting sick and tiered of feeling this way.
Thank god, a person , SOMEONE, SOMETHING I can finally relate to. I would saerch on hours and hours on the internet on my cell phone just HOPING to find some hope, others who have the same conditino as severe as it is.
I’ve suffered depression all my life before I had this horrible illness (CFS).
I used to be a high achiever too. I would practice my magic tricks, all the time. I got actually very good and advanced at coin magic. I put in over 1,500 hours for over 1 trick. I’d practice 3-6 hours a day everyday for over a year and a half.
I also have very mild aspergers. I also was always interested in numismatics, and would obsessively read abuot it all the time. Numismatics is the study of money, or, coin collecting (either term).
I got addicted to an online game for 12 years. Severely. This was all before the fatique set in. I got extremely good from typing it though, and got accepted into the semi-finals of a united states championship for typing. My typing speed with 98% accuracy was 169 WPM. I would’ve accepted possibly to be entered into the finals, and compete for the grand prize at the SWSX film festival, but I didn’t answer my email. Eventually I conqured my demons and quit the game. Several tiems actually.
Throughout my depression, ( I Used to be very thin, underweight as a child, until I got addicted to this game around age 13) around age 14-21, I became very obese. I gained alot of weight. Over 100 lbs than from where I am now.
I used to be 250 lbs at 5’7” as a male. Waist was size 48. Now at my lowest I was 149 lbs and 32 inch waist. Although now I’m aruond 153-154. I lifted weights 5 days a week, excerised vigourously. I got very good at riding the bike, and eventually went on very long bike rides from different cities in my state, sometimes across 3 or more cities. Usually around 60 miles at most. Biking/cycling became my passion. Then, after I staretd losing the weight, something strange happened. I noticed some slight fatique. Gradually, it got worse. And worse.
And even more severe where it is today. Now, thank god, I’ve lost all the weight (101 lbs and down to 10% bodyfat, but I ertained muscle from lifting weights, so I don’t look too thin). But, I cannot excerise, even ride my beloved bike anymore, or excerise. it kills me, really. I just got new racing tires for it and a really nice floor pump. I just can’t ride anymore. Not even short distances. Weight training is out of the question, too. The past month, several months, things have gone real down hill. Now, it was bad before, manageable, barely, but now it is unbearable and I am almost bed-ridden.
I was found to have mild to moderate sleep apea. However, it wasn’t “severe” enough, and so I wouldn’t get it AND insurance ‘probably” wouldn’t cover it anyway they said. So, no CPAP machine for me and just another blow to my self esteem and whatever glimmer of hope I had.. After that I became even more depressed.
Every other test checked out. I aws put on 2 stimulants, first nuvigil, which worked at first, now does nothing, and now ritalin, which, my insurance doesn’t cover and I can’t buy anyway because I’m over the age of 20. And if insurance DOES approve, i have to wait up to 3 weeks.
I could go on and on. sory for rantnig so long. I’m just desperate for answers too. I hate feeling like this and can’t cope with it anymore.