Hi all! Thought I would introduce myself. I’m a single mom to 3 and grandma to 1.
I’m not sure if what I am dealing with is Fibromyalgia or not as I haven’t been diagnosed yet. I am only now starting down that journey again. I tried over 12 years ago but got frustrated with the “nothing wrong with you” speeches and gave up. Since then I’ve just tried to live with it all and cope as best as I can. Sometimes that goes better than others, as I am sure you all know.
I guess I should share a little of what I am dealing with now.
Widespread pain that can be deep, sharp, dull, throbbing, burning or aching; in muscles, joints, etc. It can last for weeks or months, then seems to vanish for a time only to return in force. Areas affected include any and all of the following: Shoulders, upper back, elbows, wrists and hands, lower back and hips, knees and feet. What is affected one day may not be the next; or even later in the same day. I also deal with spasms in my lower back when things flare up.
Stiffness that varies in intensity and duration – sometimes it’s not too bad, other times I feel like I have 2x4’s instead of arms, legs and back. It’s there when I get up (many days I wonder how I’m going to get out of bed) and as with the pain it varies during the day.
Fatigue that is a near constant feeling of exhaustion; like I could sleep for days, even when waking in the morning after sleeping all night. The pain can affect my sleep too – either in getting to sleep or waking during the night because of the pain. The urge to take a nap can be overwhelming and I will many times end up giving in; on the worst days I’ve been known to nap multiple times and can still sleep that night.
Things like grocery shopping or laundry, even with help, will wipe me out for the rest of the day (and even the next couple of days too). Some days even just basic housekeeping is almost too much. What’s the fun of making the bed or washing lunch dishes if you need a nap afterwards or are in more pain?
Another issue I deal with is the ability to focus, pay attention and concentrate on tasks. It just is not there many days. I often feel like I’m wandering around in a fog; sometimes it’s just a light hazy fog, other times it can feel like I am swimming in pea soup. I used to say I had pregnancy brain or baby brain, but with the youngest almost 18 I lost that excuse a long time ago! Now I just tell people I have swiss cheese for a brain. Remembering anything can often feel like an exercise in futility. Forget remembering names, I’m lucky if I can remember, by lunch, what I had for breakfast – and that’s on a good day. If I don’t write something down, I’m not likely to remember it later and even then, I may not. (Anybody seen my grocery list? ) And just because I make a list does not mean I will actually still have it in hand when I get to the store!
Another newer issue is numbness in both hands – sometimes affecting the whole hand, often just the last 3 fingers. The left hand is now constant (has been for a couple of months), varying in intensity throughout the day. The right hand is varying in frequency and intensity. It is not real painful, but rather a numb/tingling, pins and needles, feeling. It can be difficult to feel what I am doing, for example feeling the keys to type this, or feeling if I have a good hold of something to pick it up. Which just complicates things – did I drop it because I didn’t have a good grip or because my hand just gave out again?
I have noticed that certain things trigger the pain or fatigue more. If I get too cold, or if storms are moving through (I think it has something to do with the barometer) or if I am dealing with a lot of stress, the pain levels flare up big time. Conversely, the higher the heat and humidity, the more the fatigue levels flare (it also brings out the asthma more). Which means, that since I live in Kansas, I have yet to find a time of year where I feel really good. We are cold in the winter, hot and humid in the summer and have volatile weather year around.
I haven’t noticed a connection between my symptoms and food really. I never had major troubles with stomach/intestinal issues, etc. but was told by well-meaning friends that if I would just give up dairy or use goat’s milk or would give up gluten or caffeine that I would “get better.” So, in the last 7 years I have been dairy free (about 6 months), I have used some dairy (butter, etc.) and goat’s milk (about 4 or 5 years), I have gone completely gluten free (a year) and even gave up all Pepsi, etc. (5+ years). I saw no improvement in my symptoms with any of it, rather things have only gotten progressively worse. So, I gave up on all of it and eat what I want, in moderation.
I look forward to meeting ya’ll and learning new ways to cope.