You need to read this, especially if you were 50 or older when you got sick with CFS/ME. And if you were a little bit younger, read it too; because if you are like me, you are not sure exactly how old you were before Chronic Fatigue Syndrome hit. You just knew, that your illness had gotten unbearable.
Part 1
Do you ever read an article and comments that seem so familiar, and they hit so close to home, you have an emotional response to what you read? That happened to me today; therefore, I have to share with you, because I admit to feeling disappointed at how my illness was misdiagnosed by medical doctors.
First of all, I think most MD's mean well. They want you or me to feel better, but they only have a modicum of information. Maybe, the patient doesn't say enough; or perhaps, it is just too hard for them to believe someone that looks younger than his/her age and looks healthy could be sick with an incurable, unsupported (by all their training) disease. So what, if the different body systems they test are in the low normal range--this couldn't affect a person so very much? Therefore, it must be depression. Depression affects motivation and a person can feel fatigued, so send the patient to a psychiatrist. (Please know, that I am not trying to insult physicians, but that is what it seems like in my experience. Sometimes, I think I should have a fever or something when I go to the doctor, something the doctor can see.)
So the patient, me or you, goes to a psychiatrist and a psychotherapist, as well as taking an anti-depressant and a drug for anxiety. The patient feels better, but is not well. Therefore, the doctor decides you cannot handle stress and should not work.
However, there was a defining traumatic event in my life which I would rather keep private, that could have triggered a depressive episode (what it was is not necessary to know - we all have events that are different): there was the Fibromyalgia I had for years, the constant stress from a job that affected the entire family, serious viruses caught because my immune system was unable to resist them, the fight to get healthy again: and then, there was more stress from dealing with family illness and subsequent deaths, and another serious illness and menopause. Maybe these things contributed to the onset of Chronic Fatigue Syndrome.
Part 2
Basically, the above is a synopsis of my experience up to the point I knew something was wrong with me other than depression. I collapsed one day with such fatigue, I could not possibly go on. Naturally, I was depressed and felt I could stand no more. So what happened -- I was put in the hospital for 48 hours and told to go to a psychiatrist.
By then, I knew that was a waste of time, because I had already been down that road. Also, my insurance would not pay for it. I felt horrible, like I had influenza for months. I could not function normally; therefore, I quit looking for psychological answers; and after much research, I found From Fatigued to Fantastic by Jacob Teitelbaum. As I read his book, I saw myself. I could hardly believe I was reading about almost every symptom I had experienced, and I had never been treated for Fibromyalgia or Chronic Fatigue Syndrome. What an eye opener! (Before the depression, I had a doctor that thought I had myofascial syndrome or fibromyalgia, but he never treated it.)
Finally, I went to a clinic that specialized in FM and CFS. Each visit was very expensive, and it took most of our savings. Insurance only paid for parts of the treatment, all the rest was out of pocket. However, my husband wanted me to have help, and we took the one way, 3 hour trip to the clinic. Every jiggle of the car was agony. I hurt from the top of my head to the tip of my toes. To make a long story short, going to the Fibromyalgia clinic made a difference. Even though I am not well, I am in far less pain and have more energy than I had then. At that time I had nada, zero, zilch: I could hardly bathe myself. I have flare-ups, but I know things to do that help; and, I have learned to be patient during those times, rather than anxious.
Part 3
Part 3
The thing that I want to stress here is age. I first began experiencing re-occuring fatigue in my mid-forties; however then, I was able to get back some of my former activities, including tennis, swimming, working out with weights, and walking. However, I still struggled with depression, so they kept upping the dosage of my anti-depressant. Every time the fatigue hit, I thought it was lack of motivation. I even began to think I might be bi-polar. Who wouldn't after all those ups and downs?
My huge "breakdown" occurred when I was fifty; and, I now know why I felt like I could not go on with life as it was. It was because I was very ill. My whole body was breaking down; however, I didn't have cancer or mental illness, I had Chronic Fatigue Syndrome and Fibromyalgia. I am not going into the details of the abnormalities found in my blood tests, because I don't think there is anyone with FM and CFS that have exactly the same results. However, I can tell you I followed my new doctor's orders and I got better. With medication that helped with nerve pain, medication for hormones that were not in normal range, and supplements, I began to feel better.
Guess what! After I had been going to the FM clinic for several months, my depression disappeared. One day, I realized I had not been depressed for several weeks. I actually felt happy!
The whole point is I believe the article I read today is correct. The cases of chronic fatigue syndrome beginning after age fifty are different from those that begin earlier in life (Young Vs. Old: Different Type of Chronic Fatigue Syndrome, Adrienne Dellwo). I think around age forty -five and up might be the onset for some age-related cases, and I believe there are probably many undiagnosed people, who have CFS.
I haven't given up hope, that one day I might find a way to minimize flare-ups. However, I think a more realistic scenario is to admit I have an illness that will not go away without a miracle and to know I can have a happy life though ill. I think finding help was a God-thing: it was an answer.
Finally, f I had not been sick for so long, I might not be writing this blog today. I have learned to live one day at a time and to be happy in that.
May God bless you all,
Finally, f I had not been sick for so long, I might not be writing this blog today. I have learned to live one day at a time and to be happy in that.
May God bless you all,
Deborah
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It is always lovely hearing from you.
Deborah