After a diagnosis of M.E./CFS has been made, it is important to discuss each new symptom that you are experiencing with your physician. Do not take for granted that your new symptom is due to having M.E./CFS. Other health disorders must be constantly ruled out over the course of your illness.
Symptoms often wax and wane. For some, the illness may improve to the point that they are able to return to an acceptable state of recovery, albeit with caution, carefully monitoring and balancing their activities with rest. Others, however, may plateau at a minimal percentage of their prior activity which alternates with relapses. A few may gradually deteriorate over time.
Please note that you may not experience all of the symptoms outlined here. These symptoms have been noted by many patients over the course of their illness.
The fatigue that individuals with M.E./CFS experience is unlike that experienced by healthy individuals after working long hours. Healthy individuals can regenerate their energy after a night's rest.
The fatigue we experience does not disappear after a night's sleep, nor does bedrest alleviate the fatigue. As simple a task as washing our hair can exhaust us. Attending a doctor's appointment may cause some M.E./CFS patients to be bedridden for days. Our legs and arms feel heavy, making walking exhausting.
If you are a jogger, remember how you feel at the end of your run. That is how we feel all day, every day. We may experience periods of improvement, making our condition confusing to those around us. But many are unable to sustain this improved level of activity, making it very frustrating for ourselves and our families.
Neurological Symptoms that interfere with Memory, Concentration & Thinking
Short-term memory loss and concentration difficulties severely impede our ability to function. The simple task of writing a grocery list may take several attempts. Verbal and written instructions can be hard to follow, resulting in frequent mistakes and tasks left incomplete.
The sorting of conversation from background noise also may be difficult. If someone speaks rapidly, we may have trouble understanding what is being spoken. Our brains can be sluggish in processing the information. In addition, having to complete a task in a specific time frame can pose a significant challenge. Again, this is due to the fact that we cannot process information rapidly. Difficulty with mathematics makes handling our finances a chore.
Spatial disorientation means that we frequently misjudge the distance to a table top, resulting in items landing on the floor, or being unable to use familiar kitchen appliances.
During a conversation, we may have trouble remembering familiar words or names. Often, we substitute words starting with the same first letter, such as "silver" for "shampoo."
Tasks requiring sequencing are also difficult for us. At times, following a simple (and familiar) cooking recipe may be impossible.
If we are not giving the type of emotional response you expect or want, it may be because our brains take more time than usual to sort out your information. Thus, we may not always express ourselves emotionally on the spur of the moment. Please be patient with us.
Standing in line at a store is impossible for many. We need help with shopping for groceries, clothing, gifts, etc. If you are talking to us, please offer to sit down and talk to us rather than have us stand. For some, excessive standing can cause a relapse.
Research studies are suggesting that the cause of the difficulty in standing (orthostatic intolerance) may be a drop in blood pressure (Rowe and Calkins, 1998). This drop in blood pressure may be caused by having a low blood volume (Streeten and Bell), or from our having excessive venous pooling in the extremities (Stewart and Bell, 1998).
It is not uncommon for us to faint if we have been standing too long. This can be avoided by shuffling while standing in line at the check-out counter or talking with someone. There are times when even opening a refrigerator door can be a challenging task.
Anger, Frustration and Irritability are feelings that can occur for a myriad of reasons. For example, if we are asked to sort too much information quickly, or are asked to do more than we are physically capable of, this can lead to frustration and anger. In addition, sensory overload (loud sounds, bright lights and visual motion) can make us irritable. Please be patient with us, as it may be the symptoms of the illness that are making us irritable.
Environmental / Food Sensitivities Symptoms
Sensory Over-Stimulation Symptoms
An increased sensitivity to sound and lights may require some M.E./CFS patients to keep the television sound and household lighting very low. Sunshine may be very painful to our eyes. If we attend a social function where there is music and multiple background conversation, we can become disoriented and unable to understand or sort out words in a conversation. At a workplace or school, the lighting system, phones ringing, and the movement of people around us can leave us confused and disoriented.
When we experience sensory overload we become exhausted, and it may be necessary to stay in a darkened, quiet room for several hours.
Other Neurological Symptoms