Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hello All,
I'm new here. I hope you can shed some light on my situation.
I have not actually been diagnosed with CFS, but I have chronic fatigue. It started about 3 years ago and it is getting worst and worst.
Everyday after work in the late afternoons, I'd feel this fatigue in the head (not pain, but a sort of pressure or heaviness right above my eyes and my forehead) that makes me want to lie down and close my eyes. I may or may not fall asleep, but I need to close my eyes for about 1 hr before I can make dinner.
On weekends, I'd wake up around 10 am, and after making myself lunch, I'd feel this way again in the early afternoon.
About 4 years ago, I was diagnosed with an autoimmune disease (Sjogren's syndrome). This syndrome does cause fatigue, BUT I recently realized that is not the same fatigue that I have! I went into the Sjogren's Daily Strength discussion and realized my kind of fatigue is not what the others have (I think theirs is more MUSCLE/JOINT fatigue). If I do any moderate exercise, my body feels fine afterwards, but I would need to immediately lie down and rest/sleep for an hour. Even my Sjogren's doctor wonders if anything else is going on. (She had also thought I had been talking about muscle fatigue.)
In the last 5 years, I had been under a lot of stress also. I was taking care of an elderly ill parent with alzheimers at home. So I thought stress was what was causing my fatigue. Now that he's passed away for 2 years, the stress should be gone and my fatigue should dissipate, yet it's getting worst!
I just read the entry "Pressure in the head" here and saw some similarities. I have noticed my breathing is sometimes shallow and caught myself holding my breath sometimes.
As for hypoglycemia, I have tested negatively for it. But I have a extremely fast metabolism and seems hungry 2 hrs after I eat a full meal. (I already saw a dietitian and she said my diet is balanced.)
Does anyone have any ideas or advice?
I'm new here. I hope you can shed some light on my situation.
I have not actually been diagnosed with CFS, but I have chronic fatigue. It started about 3 years ago and it is getting worst and worst.
Everyday after work in the late afternoons, I'd feel this fatigue in the head (not pain, but a sort of pressure or heaviness right above my eyes and my forehead) that makes me want to lie down and close my eyes. I may or may not fall asleep, but I need to close my eyes for about 1 hr before I can make dinner.
On weekends, I'd wake up around 10 am, and after making myself lunch, I'd feel this way again in the early afternoon.
About 4 years ago, I was diagnosed with an autoimmune disease (Sjogren's syndrome). This syndrome does cause fatigue, BUT I recently realized that is not the same fatigue that I have! I went into the Sjogren's Daily Strength discussion and realized my kind of fatigue is not what the others have (I think theirs is more MUSCLE/JOINT fatigue). If I do any moderate exercise, my body feels fine afterwards, but I would need to immediately lie down and rest/sleep for an hour. Even my Sjogren's doctor wonders if anything else is going on. (She had also thought I had been talking about muscle fatigue.)
In the last 5 years, I had been under a lot of stress also. I was taking care of an elderly ill parent with alzheimers at home. So I thought stress was what was causing my fatigue. Now that he's passed away for 2 years, the stress should be gone and my fatigue should dissipate, yet it's getting worst!
I just read the entry "Pressure in the head" here and saw some similarities. I have noticed my breathing is sometimes shallow and caught myself holding my breath sometimes.
As for hypoglycemia, I have tested negatively for it. But I have a extremely fast metabolism and seems hungry 2 hrs after I eat a full meal. (I already saw a dietitian and she said my diet is balanced.)
Does anyone have any ideas or advice?
Actually, migraine is more than just a headache, it has to do with the circulation in the brain. It's a neurological condition, and I suppose it's possible to have something similar to migraine without actually getting headaches. Some people get only mild headaches with migraine, but they get the other symptoms like aura and nausea.
What we get with ME/CFS isn't really fatigue, it's a kind of malaise and exhaustion. You can drive a doctor crazy if you tell him or her symptoms that are not specific enough for a diagnosis. It sounds to me like you need a full physical and a lot of tests.
I wish I could be more help, but your symptoms don't really point to anything that I know about. That's not saying much, I just know what I picked up here and there.
Maybe it will clear up on its own. It took me years to recover from caring for my dad in his later years, in fact I still have anxiety over being a caregiver 24/7 all those years. I lost Dad in 04 and I still have anxious dreams where I'm worried about him.
Being a caregiver for a person with dementia is the world's toughest job, don't expect to just go back to being a carefree person again like it never happened.
I good Rheumatologist who is familiar with ME/CFS might be a good place to start. If you go to CoCure.com you will find a "good doctors" list of docs in your area familiar with the illness.
As ME/CFS is a disease of exclusion, a lot of testing has to be done to rule out everything from cancer to HIV.....I mean, it takes some time. The fact that you have Sjogrens makes the situation a little more difficult because I'm sure fatigue is a part of that illness as well.
I would suggest getting to a good Rheumy, or knowledgeable D.O. to get the testing started. The sooner you do, the soone you'll have an answer.
In the meatime, can you rest when you feel the need? That would be wise. Treat your body as though you have ME/CFS.....you'll be getting a head start on how you will be learning to live.
This is a nasty illness. You already have a lot on your plate. Praying ME/CFS is not what is making you so fatigued!!
RicheD: What is the difference between "fatigue" and "malaise" and "exhaustion"? These are such vague terms to me, and I really want to describe it accurately... And thank you for sharing about being an ex-caregiver. Many people don't understand.
What is the right kind of doctor to see about CFS? Is it a rhumatologist? I am already seeing one for the last few years and she is one of the best in the city. Ran a whole bunch of tests including autoimmune antibodies, heavy metals, vitamin D, B-12, iron, thyroid, Lyme (even saw an infectious disease doc to rule out), hiv, etc.
A Rheumy diagnosed me 12 years ago but was not interested in treating me! ("Not much I can do," he said.) But I have gotten very good healthcare from my general practioner, my acupuncturist, and a fabulous neuro-psychiatrist here in Baltimore who placed me on Concerta (ritalin) to help my cognitive and energy issues.
As far as your question about definitions, I think most of use "fatigue" to mean exhaustion and malaise. The CFIDS Association describes the symptom this way:
"...incapacitating fatigue experienced as profound exhaustion and extremely poor stamina. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period."
This definition fits me to a T, unfortunately.
Hope this helps. :0) Jeb
I don't know what the cause of your symptoms is of course but it is possible to be migraine.
Everyone has a different opinion on this but I have had the most success with a holistic doctor. Mine happens to be an MD. But an osteopath might help if they know their stuff or a natropath. Some are fortunate to get help from GP's. It really depends on the individual doctor. A headache specialist might help if for no other reason then to rule that out. Of course headaches are part of ME/CFS for some of us too. I'd start with whoever is willing to listen to you and help you.
Most people think of fatigue as the normal everyday tiredness a person gets after a day of stress and exertion. That's not a disease symptom, obviously. And it's not what we experience with ME/CFS.
Malaise is something different, I think. It's what you feel when you have the flu and you are totally miserable. It's what we get after we push ourselves too hard physically and don't pace ourselves. It's usually called post-exertional malaise or PEM as it relates to ME/CFS.
I think exhaustion is similar to the term fatigue, but it implies a disabling kind of condition, something that a healthy person might get after not sleeping for several days. I think it's closer to what we feel than using the word fatigue.
I think we would be much better off if we never had to use words like fatigue anymore. The word "fatigue" is extremely misleading and it trivializes what we endure.
"Did any of you get CFS abruptly following an illness/injury or stressful event? (I noticed my chronic fatigue started abruptly.)"
Yes - My CFS started after a bout of Glandular fever (Mono EBV), I just never fully recovered from it. Felt really terrible for about 6 months then made gradual improvements to the point that I thought a full recovery was possible, sadly this was not to be as a few months later I was laid down again but even more severely than before. I am glad to say that I have again improved over the last 2 years but my progress has been very slow and gradual. But as for an Abrupt start to it, I could even give you the exact date that I was struck down.
I think many others here can relate to this kind of onset.
Jen