There are Too Many of Us to Remain Invisible

Have you ever had a flu so severe that you sleep all day and every time you try to get up, you are so weak you have an urgent need to lie down before you fall down? That is what the acute stage of ME/CFS is like, but it lasts for months or years. A simple activity such as taking a shower can be so exhausting that you have to go back to bed. Some wonder how it is possible for someone to sleep so much and still be exhausted. Research studies indicate that ME/CFS patients do not get into the deep stages of sleep, where the body restores itself. Some patients are so severely affected that they are bedridden for months or years and are dependent on others for their care. Others are housebound and may require a wheelchair for mobility.

In the chronic stage, the majority of patients have some periods of time during the day that they can function but not at the level that they did before they became ill. They may sleep a lot of the time, or have insomnia, and are usually exhausted. The smallest amount of physical or mental activity can cause flu-like symptoms, severe fatigue, and worsening of other symptoms. Cognitive difficulties become more pronounced – the patient’s responses are slower, less coherent, more confused, and they have difficulty recalling information and words. Recovery from reactive symptoms can take a day, weeks, or more.

Patients face many physical, mental, educational, social, and emotional challenges, which also affect their family and work opportunities. One thing that makes ME/CFS so difficult to manage is that symptoms fluctuate from day to day and from hour to hour, even when the patient is able to do limited activity. Many remain too ill to work, while others with milder ME/CFS are able to work part-time. Children and youth may require special educational considerations or study at home, as they are able. Social activities may become severely reduced. It is important that the patient’s meaningful others remain understanding and supportive.”

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients are more functionally impaired than those suffering from diabetes, heart failure and kidney disease.

Research has demonstrated physical abnormalities including changes in micro RNA, different types of immune dysfunctions, and multiple viral assaults. Without treatment, long-term sufferers develop significant neurological and cardiac abnormalities, and die an average of 20-25 years before their time.

  “Do you recall the fairy tale where the princess could feel a pea under her mattress? FM patients are extremely sensitive to pain and the pressure of a fold in their night -clothes can cause enough pain to wake them up. How many minutes can you hold a muscle in a flexed state before it becomes tired – 5, 10, 15 minutes? FMS patients are living with muscles that are permanently contracted and relentlessly pulling on their joints. Their constantly stressed joints are unstable and have abnormal movement, and sometimes are pulled out of alignment. This puts more stress on the muscles, which in turn puts more stress on the joints, and so the vicious circle continues. Their body can become lopsided. They have difficulty sleeping, and do not get into the deep states of sleep that are needed for restore the body. They wake up in pain, stiff, and exhausted – feeling like they have been hit by a truck. They have impaired cognitive functioning, and symptoms of ANS/endocrine origin. The severity of FMS can range from mild to debilitating.

Many thanks to my wonderful daughter for allowing me to “borrow” these quotes from her blog post for today.  I’d love to share the personal part of her post, too, but her blog is private and I respect that.  Both she and I have really been struggling for the past few months and reading her account of it is heartbreaking from a parental perspective.  She rarely opens up about her struggles, so I know that many of her friends who read her blog have been shocked. 

There are so many of us living with one or both of  these syndromes, yet awareness in both the general population and the medical community is still shockingly limited.  Thank you to all of you who believe in us and support us.  You’ll never know how much that helps.

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3 thoughts on “There are Too Many of Us to Remain Invisible

  1. i missed this yesterday, sugar, but i am so glad i read it today. you have my support! i can only hope that science can offer relief and assistance sooner, rather than later. xoxoxox

  2. My mother suffers from FM and I know it is so painful. I can only attest to a sampling of the symptoms and pain. Last year a doctor started me on meds for cholesterol. I took them for a little over one month. I was so sore by then I could hardly walk or lift my arms. I stopped taking them but it took three months for me to get past the pain. Then a different doctor put me on a different med for cholesterol saying this would not do that to me and it did. After one month I could not lift my arm to get something in the frig. I could not wash my hair. I could not walk. I have been trying to get past all this for two months now. I just don't know how someone living with myalgia pain can do anything. Not anything. I have so more sympathy because I experienced such pain in the muscles and they are still here.

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