CFS and mental health. This is a subject full of landmines. Does CFS affect my mental health? Oh yeah. Unfortunately, when I say this, some mistakenly assume that CFS equals depression. Or that it is a psychosomatic condition. That I'm mentally ill. That I can't cut it in normal life and am in hiding.
So you can understand that I try to stay away from this subject. But maybe it's time to dive in and get messy.
I personally have been pretty fortunate. I don't run into this brick wall too often. And I know that most people reading this article are open to a greater understanding of CFS. For this openness I am very grateful. It gives me hope that the prejudices so many of us encounter may change one day.
Many compassionate readers will be astonished to learn that the response that so often meets a CFS sufferer, is rank disbelief.
CFS is a VERY physical illness. This point apparently needs to be made over and over again. Emphasized and dragged back into the forefront of the CFS discussion. Because the reason my mental health is affected is, that these symptoms are SO physical. They dog my entire day every day.
The neurological problems. The immunological problems. The endocrinological problems. The heart and circulation problems. The gastric problems. The orthostatic intolerance. The muscle and joint pain. The problems with speech and understanding what is being said.
It gets me down. It affects my mental health. And the assumption on the part of some, including many in the medical community, that these symptoms are not -- "real" somehow -- REALLY gets me down.
Not being able to go out and do the things I used to do frustrates me every day of my life. What it has done to my homelife and my non-existent social life is still a shocker even after all this time.
Many of us with Chronic Fatigue Syndrome must repeatedly re-define "mental health" as it relates to CFS, to so many people who do not seem to understand. This saps an enormous amount of our tiny energy stores. Gets us down.
But I am willing to do this as many times as it takes. CFS is a VERY physical disease, that has a powerful dampening effect on my mental health. And I guarantee it has this same effect on every other person who lives with this illness.
I spent 15 years losing the battle against CFS. Two years ago, I found treatment that worked for me, and now I am making a comeback.
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I have been a sufferer of Chronic Fatigue Syndrome ever since moving to the Northern Virginia area.
The only thing I can attribute this to is Lyme Disease and Epstein Barr Virus.I tested positive for Lyme 8 years ago.At the same time also tested positive for Epstein Barr Virus titer and believed to have had mono .
In addition, I have had several blood tests that were positive for c-reactive protein or inflammation in my bloodstream.The doctors could never tell exactly where the inflammation was coming from.Further testing always showed negative for Lyme etc.. but one can have Lyme with a negative test result I have read. So I also sit in ruins daily from CFS and Fibromyalgia for 10 years now . It has devastated my daily life as I cannot do the things I use to do.I have put on weight... am in the middle of changing life or perimenopausal.
I have tried Effexor xr years ago however that made me gain 40lbs in 1 year. You can imagine going from 120lbs and 5'3 to 160lbs plus .I only tried Effexor xr because I thought maybe I am depressed so let me give it a try!However, it was not depression, it was chronic fatigue syndrome !
CFS ultimately make one feel down as the other person who posted has stated. The medicine did make me feel a little better, but my blood pressure was elevated and I was becoming unhealthy so I got off of them and lost 25lbs. which was great .I am still battling CFS and regained the weight back 8 years later! I attribute this weight gain to aging and inactivity due to CFS and Fibromyalgia, and cannot seem to take it off this time around. The doctor said he thinks I am going through a syndrome of some sort such as Epstein Barr Syndrome, but who knows? All this and perimeno bodily changes is just awful! I never dreamed I would ever feel this way.For those who are skeptical just makes things worse.
Hopefully one day the medical community will begin to unravel the mystery of CFS and Fibromyalgia. I hope there will be a cure for this dreaded illness/ condition. I thank the previous person who posted about CFS and her plight with it, and hope and and pray one day soon the medical community will pay more close attention to CFS and Fibromyalgia. I was always in good shape physically, great wife and mother, clean fanatic and a good cook.
These days it is very difficult for me to clean and cook let alone leave my home.Altho I do get out on occasion, I am too achy and fatigued to even get to the doctors!When I do go to the docs it is a rarity as I feel whats the use!They won't find anything to cure!
Thanks for listening.February 18, 2010 - 12:22pm
I think your point is quite accurate. I can't think of too many names more dismissive than Chronic Fatigue Syndrome. Except maybe, The Yuppie Flu. Which, of course, they also gave us at one point.
The name most certainly is misleading for people.
The example you give of Muscular Dystrophy is a good one. You highlight the strange way in which this serious disease of ours is so often discounted and trivialized.
Or take Multiple Sclerosis. Some experts say that CFS and MS are both autoimmune. And some also say that there are many similarities between the two illnesses.
And yet, MS is considered a serious disease. And so often, CFS is not.
Historically, diseases where not much was known about them, have been negated by the medical community. There was a time when people with MS and diabetes, among other illnesses, were told that it was "all in their heads". If the research hadn't come up with anything, ... there must not be anything wrong.
In my view, CFS is running into that same myopic brick wall.
Thanks for your comments, Diane. As always, they are thoughtful, and on point.January 16, 2010 - 2:47pm
What treatment did you find that helped with your CFS??
ThanksJanuary 22, 2010 - 1:24pm
There have been quite a few things that have helped me in my ongoing recovery. I'll list as many as I can think of here.
I had to change my diet. I'd developed a number of new food sensitivities since I got sick, and a few mild ones from pre-sickness days had gotten much worse. For me, a high protein and low carb diet with lots of non-starchy vegetables and good fats, made a huge difference. Gluten and dairy, eggs and corn, potatoes and tomatoes and peppers, are often allergenic, so worth checking out. To do this, just omit that food for a time and see if you feel better for it.
Adding Omega 3 oil as liquid fish oil helped, as did adding Vitamin D3. I take Vitamin B12, have used milk thistle and a number of different things for adrenal support. Acupuncture once a month. Many other supplements may have made a difference.
Rest is a huge factor. Don't be on the go (if you're able to be on the go) for more than 2 hrs tops. Take time to rest, 20 min., half an hour, longer than that if you can. If you are doing very poorly, take more breaks more frequently. Never go to the ends of your energy. If you use it all up you will have none for regenerating.
Hope. Hope has been essential, especially during the times when there seemed no reason to hope. Hope to get better. Picture it. Savour it. Believe it. Even when you don't believe it. Hold on to it like a rope that is pulling you out of a hole.
If you are interested in looking further into the treatments that have helped me, have a look at my website at http://www.ncubator.ca.January 24, 2010 - 12:53pm
Another column filled with education and insight, Jody.
Occasionally I wonder if something as small as the name of a disorder affects how it's perceived. "Fatigue" is seen as something a person can just "get over." "Syndrome" can signifiy a varying degree of affectedness, from mild to devastating. So it's perhaps easy for people to make assumptions that are completely wrong.
No one questions the debilitating effects of muscular dystrophy, just as one example, or debates whether the symptoms are primarily mental or physical. But with CFS, they do. Interesting.January 15, 2010 - 8:51am
That is so true.
This illness inflicts damage on every aspect of life. And yet we continue to fight for our lives. We continue to speak up for ourselves, in the face of disinformation about us and our illness. We continue to strive to be heard rather than ignored.
And despite how difficult life is with this illness, we continue to love life and want with every fiber of our being to return to it full-force.
Hardly hiding from life or afraid of it.
Thanks for your words.January 13, 2010 - 7:28pm
I couldn't have said it better myself. Of course living like this wears on you - it would anybody as it's 24/7 and has been for years on end. But to think that one would like to live like this - to lose everything along the way - is plan crazy! Most of us afflicted have once upon a time been "highly productive" - be it in a profession or in running a family - then our lives are suddenly cut and turned upside down making us just watching life go by from the sidelines.January 13, 2010 - 5:44pm