Yes, it is a real diagnosis.
No, it is not just being tired.
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is so much more than being fatigued. The Centers for Disease Control and Preventions describes it as the following:
Chronic fatigue syndrome, or CFS, is a devastating and complex disorder. People with CFS have overwhelming fatigue and a host of other symptoms that are not improved by bed rest and that can get worse after physical activity or mental exertion. They often function at a substantially lower level of activity than they were capable of before they became ill.The range of CFS/ME varies considerably. Some people with CFS/ME can still function fairly normally while others can be severely impacted and bedridden. At this time, I have a moderate case of CFS/ME as I spend most of my time in bed yet I am still able to walk shorter distances and my mental function is good. I am capable of doing most of my activities of daily living; however, require assistance with some things such as washing my hair. Some people slowly get better, others go through up and down cycles, while others remain the same. A lot about CFS/ME is unknown, including the cause, prognosis, and cure.
Besides severe fatigue, other symptoms include muscle pain, impaired memory or mental concentration, insomnia, and post-exertion malaise lasting more than 24 hours. In some cases, CFS can persist for years.
Researchers have not yet identified what causes CFS, and there are no tests to diagnose CFS. Moreover, because many illnesses have fatigue as a symptom, doctors need to take care to rule out other conditions, which may be treatable.
My symptoms included: fatigue, weakness, muscle pain (potentially fibromyalgia), muscle spasms, hand cramps, general malaise, post-exertional malaise, headaches (dull to severe), chest pain, palpitations, orthostatic intolerance (POTS), poor circulation leaving my feet and sometimes hands, nose, and legs very cold, sensory overload (sensitivity to some light, sounds, and smells), vertigo, dizziness, sleep disturbances and insomnia, hot flashes and excessive sweating, difficulty regulating temperature, disregulated menses, brain fog, depression, anxiety... and the list can go on, however, that includes the majority of my symptoms!
If you or someone you know is battling CFS, I would love to chat and share some of my experiences with medications and other treatment modalities! Leave a comment or send me an email at lifebeyondthewindow(at)live(dot)com
If you are interested in reading more about CFS, here are some good resources:
Centers for Disease Control and Prevention
The ME Association
International Consensus Criteria from the Journal of Internal Medicine
The Spoon Theory on Chronic Illness
Christian Resources on CFS:
Jesus Today Ministries
The Grace Charity for ME
Everything Beautiful in Its Time - a book written by Catherine, the founder of Grace Charity for ME, who was miraculously healed after almost 20 years of CFS! A must read!
Blogs I follow by other people with CFS:
Tanya Marlow's blog - Thorns and Gold
Dead Men Don't Snore
Learning to Live with CFS
4 Walls and A View
Hey Rebecca! I see you already know about the Spoon Theory and I guess But you don't look sick? I was diagnosed with lupus at 19, just after my freshman year in college. BUT I have been in remission for over 5 years!! I really don't write about it much on my blog except for the occasional post for lupus awareness month in May, but I love connecting with others out there.
ReplyDeleteOne of the things that has bothered me about being in remission and being well is that people who are older than me constantly talk about how I don't understand what it's like to get old or be unable to do something. It's a normal assumption to think that because a person is young and looks good that they are healthy. But it can be wrong. It makes me boil inside really (I know it's an overreaction). Sometimes I will speak up and say, Actually, I have been living with a chronic illness since I was 19. As a nurse, it's helped me to understand my older patients much better. Here's a post I wrote that you might like:
http://www.over-the-threshold.com/2011/08/i-was-old-once.html
Wow. Praise The Lord. That is incredible :)
DeleteI am so glad you have been in remission for 5 years and can do more. Yet it is amazing the things you have learned from having a chronic illness, eh?
I can totally understand how it would help with nursing, as I was training to be a nurse and in my last year came down with CFS and was unable to complete. But it has opened my eyes a lot and I definitely have grown in ability to show empathy from this.
I will jump over to your blog :)
Thanks again and blessings!
Xo
Rebecca,
ReplyDeleteI have had mild-moderate CFS for twenty years or so and can understand part of what you go through. Recently the Washington Times has published a series concerning work that has discovered the likely cause of fibromyalgia, which seems related to CFS. For example, see
http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/30/fixing-fibromyalgia-pain-relief-rem-sleep/
http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/
I am no physician, but what has helped me with cramps, which I mostly get when I am completely asleep, is taking a tablet of naproxen an hour before I go to sleep. This can disrupt my sleep a bit so I am now sometimes take a small dose of melatonin as well (both over the counter). One of the articles emphasizes the importance of deep sleep.
GG