Finding Your Comfort Zone: Tips for Chronic Fatigue Syndrome & Fibromyalgia Patients

Dear Friends,

Many of us remember, as children, hearing the story of The Princess and the Pea, by Hans Christian Anderson. Some of us will remember the hilarious portrayal of this fairy tale by Carol Burnett and her TV family. As the story goes, making an effort to find a real princess to marry her son, the Prince, the Queen placed a pea on the bed, and covered it with 20 mattresses and 20 feather beds. When the young lady awoke the next morning, she said she had hardly slept at all because of a bump in the bed. The queen said "nobody but a real princess would have such delicate skin."

Well, I guess many of us are princesses (actually, this is my sweetheart’s nickname for me ) because we suffer what has been called "princess and the pea syndrome." We have great difficulty finding comfort with anything that comes in contact with our skin. Finding a comfortable position in bed is probably the most infuriating. Getting all my pillows adjusted just right, pulling on the sleeves on my nightgown so they are not tight around my arms. Getting my heating pad where I need it. Adjusting my fan (I have asthma so moving air is important). Just as I get all this settled, I feel a wrinkle under my hip, so I adjust that. About the time I finally think I’m situated, I have to get up to the bathroom, or the cat comes and wants attention, so I start the whole process over again.

I’ve also been having trouble getting comfortable in my recliner. Either I’m changing shape or it is! I have had to add a pillow behind my back, and it needs adjusting whenever I sit down. For some reason, I have not been able to get my derriere in the right position, so I end up scooting around a bit. I have to adjust the angle of the chair and how I am sitting in it to support my head properly to watch TV or read. The necessary support may be different if I have a headache, or if my shoulders are tight or tender. I don’t yet have a heating pad in my recliner, but I suspect that will happen soon. But it does get “bunched up” more easily in the chair than it does in bed. Yet another source of friction, physically and emotionally. I try to have everything in reach so I can stay once I find THAT comfy position. Of course, my “FM bladder” will not let me sit for too long anyway.

I also have problems with clothing. I don’t think I have a single shirt left that has the manufacturer’s tag still in it. The ones with the pretty metallic designs are especially annoying. I also cut them out of pants, underwear and bras. Thankfully, I don’t own much that does not have easy washing directions.

If I have a headache earrings have to be very light, and not bounce, or they get left at home. Sometimes even my hair down on my neck is irritating. I have worn my hair up in a sort of ponytail/bun for a long time. This style is easy for me. But a certain amount falls out of the ponytail as the day goes on, and sometimes irritates my skin.

Any of this sound familiar? I would imagine it does. We are creatures with hypersensitive nerve endings. Our nervous systems react to many things others are not even aware of. All of this extra irritability adds up to less sleep, and more pain and fatigue. So, how do we deal with the “pea”? I imagine some of the things we need to do are similar, while others will be very individual.

Getting better sleep is a high priority because it helps decrease our overall sensitivity. We need to try to make our bed the most comfortable spot possible. Although “Cuddle Ewe Underquilts” are available from (Pro Health, Inc.) I have not yet invested in one. But I am thinking seriously about doing so. I have seen nothing but rave reviews. I have a number of pillows, including a cervical one that I use to support myself in various positions in the bed. Strangely, when I am sleeping, I seem to stay in one position until I wake up to go to the bathroom. I seem to prefer my left side to go to sleep, and I do sleep on that side a lot. My hip had started bothering me, and I was sure it was from my sleeping position. So I tried putting a square of 1 inch foam rubber under the sheet from my waist to my knees. I’m surprised how much it has helped.

I also make an effort to make other parts of my life as comfortable as possible, with appropriate clothing, and shoes. I still own some high heeled shoes, but doubt I will ever wear them again. Last week we went to a picnic at a friend’s house. I have a lawn chair that I am at ease in. I took it along, so I knew I would have a place to sit that suited me. When I stand for too long, I have low back pain, so I sit to do as much as I can, like folding laundry, gardening, and doing prep work for cooking. Luckily for me, my partner does almost all of the cooking. I have a small stool I use in the kitchen, and sometimes use it and a long pair of tongs to get things out of the cupboards. I have a long (36”) pair of tongs to pick up things from the floor. I also use it to pick up my newspaper, and if I’m good I can even pull a few weeds with it.

In short, I try to do everything I can to enhance my creature comforts in my life, by removing those things which are bothersome. I haven’t yet figured out how to get rid of the annoying people. When I do I’ll let you know! Take care and be well.

Yours in Health,

P.S. If any of you have some great comfort tips, please send them to me, and I’ll share them in a future article


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articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.

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One thought on “Finding Your Comfort Zone: Tips for Chronic Fatigue Syndrome & Fibromyalgia Patients”

  1. TamaraSinging says:

    Subject: Fight or Flight?
    Post: Another way to think of it is how our “reptilian Brain” knows two options: fight or flight. Unfortunately, neither one of these is ideal. Flight, to me, means a kind of denial and “pushing through” which we all learn the hard way, is not effective and makes us sicker. “Fight” is closer to what works but this is not an illness you fight in the usual way that illness is thought of–like how people “fight” cancer. I’d say the best way is a combination of “surrender” and “fight.” To me surrender means that at some point we have to “accept,” (not like) that we are very ill. And the sooner we surrender to the fatigue instead of push through it, the more we start building reserves. Have you ever heard of the 50% solution? The doc who coined that encourages us to spend only 50% of the energy we have that day and save the rest. At the time I thought “Well then, all I”ll do is cook breakfast, lunch, and dinner and nothing else.” I think we have to redefine what fight means. Not “push” or “overcome,” but educate ourselves. It is our best weapon. Now unfortunately, we all know that different things help different people, so there is no real way to go about it other than trial and error and they don’t call it TRIAL for nothin’ cuz it’s very difficult to endure all the side effects and dashed hopes. Studies have shown that people who believe in the “one cure” or the proverbial “magic bullet” don’t get better. I think that’s because they don’t do the one arm of the work that we must do: surrender to the marathon that is this illness. But ultimately everyone who hangs in there finds things that help–the most important being, in Teitelbaum’s opinion, to get 7-9 hours of sleep each night. Not as easy to come by as it sounds! These are my thoughts after 18 years of having CFIDS and after having achieved about 75% recovery which makes my life–well, A LIFE! Three years ago I was able to begin pursuing a long-buried dream of being a performing songwriter. I released a CD in 2006 with a couple of songs inspired by the CFIDS experience. One called “Listen Me Back” about how our identity shifts and how we need people who knew us “before.” The other is called “Are You Really There?” and is about the questioning of faith that so often comes with prolonged suffering. I am busy at work on a second CD, performing regularly, and even doing small tours. Isn’t that AMAZING??!! I feel I am getting a second chance at life. I still have sleep and stamina problems, but they no longer rule my life. Try your very best to Keep the Faith Sincerely, Tamara Lewis

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