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...
Hey everyone,
I"ve posted this to the Fibromyalgia Support Group, but will also post here.
After living with Fibromyalgia with Chronic Fatigue for many years, I have classified my symptoms of tiredness.
Stage I: regular, stable everyday CF tiredness. Still able to read and drive, but never energetic.
Stage II : moderate CF tiredness. Arms and legs getting tired, loss of power. Scratchy feeling in eyes, and muscle pain starting in spine and thorax.Need utmost effort for driving or reading. Feel urgent need to rest, or will enter stage III.Recovery possible, but if not resting in time, will proceed to stage III.
Stage III: Beyond tired. Muscle weakness and pain in arms and legs, feeling as if each limb weighs 100 lbs. Dizziness, feeling like passing out.Cannot drive, read, talk on phone or watch tv. Too tired to eat. Need to lie down in quiet room with eyes closed. No recovery on same day. Effects may last 2-3 days.
These are my symptoms. How many of you can identify? Do you have your own pain or fatigue rating scale?
I"ve posted this to the Fibromyalgia Support Group, but will also post here.
After living with Fibromyalgia with Chronic Fatigue for many years, I have classified my symptoms of tiredness.
Stage I: regular, stable everyday CF tiredness. Still able to read and drive, but never energetic.
Stage II : moderate CF tiredness. Arms and legs getting tired, loss of power. Scratchy feeling in eyes, and muscle pain starting in spine and thorax.Need utmost effort for driving or reading. Feel urgent need to rest, or will enter stage III.Recovery possible, but if not resting in time, will proceed to stage III.
Stage III: Beyond tired. Muscle weakness and pain in arms and legs, feeling as if each limb weighs 100 lbs. Dizziness, feeling like passing out.Cannot drive, read, talk on phone or watch tv. Too tired to eat. Need to lie down in quiet room with eyes closed. No recovery on same day. Effects may last 2-3 days.
These are my symptoms. How many of you can identify? Do you have your own pain or fatigue rating scale?
I think of it as just good, normal and bad days.. easier for hubby to understand. It's sad that for so many of us, normal is stage 2....
Stage three, for me, is a crash. It will last from 3 days to 3 weeks. I never know.
I've been sick with CFS/ME for eight years now. I pretty much know when I'm beginning to overdo. If I would knock it off (whatever I'm overdoing) I could probably slip into a stage two. BUT NO! I go from feeling just my normal CFS tired to a crash, which you describe as stage three tired. At crash time, I am an inanimate object, confined to bed, and tired isn't the word. I'm out of it for as long as it takes for my broken energy cells to replenish themselves.
I really hate this illness! Really! I'm in a crash right now! Eight days in...who knows how many to go! UGH! Life with CFS......!!
soreness, back and neck discomfort. I have stage one energy
most days. Sometimes, I wake up with stage !! and have to lie
down about an hour after getting up. I try to get whatever done
I can, breakfast and dishes or cleaning and then I'll lie down for
usually an hour to recoup. I listen to music, sleep , or read
depending on how clear my head is Sometimes I'll rest for
longer. I go through most days like this. Moderate activity and
then resting. When I overdo for one or two full days, I will
always crash at stage 3. Then, I sleep for however long.
Most of the day. This usually lasts for two days. In winter and
colder weather, especially rain, this can take longer for me to
pull myself out of it. When this happens, I am achy all over,
sometimes chilled, and with no reserves.
Stage III. So exhausted that I feel sick all over, down to my very cells. So exhausted I can't breath well: not deep enough, too slow and not regular. And that results in low oxigen (I can't remember how to spell oxigen), which increases the weakness. Mind stops working. If I have to walk, like I am out and have to get home, my balance becomes so bad that I lurch and stagger. To recover I stay in bed 1-3 days, and sleep a lot. Not unusual
And none of these stages are like a healthy person's tiredness. That would be like heaven, to be regular tired, and rest, and get past it.
If I don't take frequent breaks, the pain in my back spreads upward through my neck, head, and shoulders. Then I start to stagger, lose coordination, crash into things, etc.
Very good points:
Good, normal, and bad days.
Sudden change from Stage I to Stage III for no apparent reason.
If no frequent breaks, the pain increases and climbs the spinal column.
Worsening to Stage II after years in Stage I.
Feeling so sick, down to my cells!
None of these stages are like a healthy person's tirednes.
I can see my own pattern in all of these points. I have learned some "tricks" over the years to try and compensate and make my life easier. But you all know the cost; missing time with friends and family, no longer able to work or play sports, or pursue some of your dreams.
I tell myself that even though I am not well, some people my age may have cancer, severe mental problems, or heart attacks and stroke. But at least there is medical treatment for those conditions, and none for mine. So far.
This illness is so terrible.
Point is, I keep to a regular schedule that works for me in the long run. This avoids those big crashes for the most part. You have to look at the big picture, not hour to hour or day to day. Keeping a journal helps a lot.
I've found that I've been able to regain some physical strength with regular resistance exercise. Aerobics don't work for us, but we do tolerate resistance exercises within limits. I do a little bit each day, rather than big workouts that leave my body sore and burning. You might be surprised to find out how much your body can tolerate in small, intense doses of exercise. It can take a long time to overcome deconditioning if you've been inactive for years, so it's far from easy.
There's a Youtube video on this by Dr. Mark VanNess, the second half of his hour-long lecture is the part with the recommendations for ME/CFS exercise....https://www.youtube.com/watch?v=q_cnva7zyKM
that was a very accurate chart.
thanks for sharing.