The Positive Side of Medicine

Fibro Stuff No One Tells You (But I Will)

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Fibro Stuff No One Tells You (But I Will)

Some of the things I have learned about fibromyalgia have been learned the hard way, because it started happening and I check with my wonderful support team, friends who have it, and find out that it’s quite common. I don’t know if it’s things that doctors feel uncomfortable telling you, because it’s not at all nice, but it is a fact, and it’s nice to know you’re not alone.

I have always been proud of my spelling, one of my professors used to call me his “little spell checker” as he was writing on the board. I am still a good speller, but on days when the fibro fog is bad, and sometimes just because, I will often write the wrong form of a word, which I never did before. Here instead of hear, their rather than there, and so on, it’s annoying. I can be thinking of the right word in my head, visualize it as I type, and my fingers still type the wrong one. I find that taking gingko biloba helps keep this to a minimum for me.

Irritable bowel is another common symptom of fibro, you almost never have normal bowel movements, either it’s too loose or you just can’t go. I take probiotics every day, this also helps counteract the effects of my pain medications, I also eat a lot of fiber. I hear that incontinence is quite common, thank goodness that hasn’t happened to me yet, but I am not looking forward to it.

Speaking of incontinence, bladder problems are huge. You literally cannot wait to get to a bathroom always. It’s humiliating enough to be dizzy enough to not be able to walk to a bathroom, when you start going on the way it’s even worse. Pads are a person’s best friend, especially on a car trip. It happens. It’s not pretty, it’s life, we have to get past it. I am also a firm believer in Kegel exercises, it makes a huge difference.

Sleeping, either you do it all the time or you can’t do it at all, there is no happy medium. Chronic fatigue is a hallmark symptom of fibro, much of this is pain related, if you hurt a lot you can’t get comfortable enough to sleep, or pain wakes you up. I sleep with 4 pillows, one under my head, one between my knees, one between my elbows, and one behind my back. I can’t stand to have my knees or elbows touch each other, and I can now only sleep on my side. I also now have to put my knee pillow the long way, as my ankles have decided they can’t bear to touch each other either.

Numbness and tingling in hands and feet is another one, it’s rather like when your foot goes to sleep, only 20 times worse, and instead of happening once in a while it happens several times a day. Water and Vitamin C are your best allies here, as well as exercise, anything to improve circulation. I also take CoQ-10 for this.

Hair loss, 2 weeks before my sudden onset of symptoms I went in for a haircut, and found I had bald spots all over my head. As things progressed I ended up losing about half my hair, thank goodness I have a full head of it. I started taking biotin for that, my hair originally grew back much thicker in the bald spots, but it has now evened out.

Beware of people who promise “miracle” cures, fibromyalgia is a real disease, and right now there is no cure. Eating better and taking supplements can improve your symptoms, they will not go away, these people are using your desperation and misery as a way to separate you from your money. Fibro is a nerve disease, so everywhere you have nerves you will have issues, which is everywhere, unfortunately. People who promise miracles and say they themselves are “cured” probably never really had the disease, it’s a beautiful thought, I agree, but people like this destroy the legitimacy of our claims, and make it even harder for people to understand how sick we really are.

I hope this helps some of you a little, I make jokes about getting a disease that ruins your life, but it doesn’t… it changes it, definitely, but the only thing that can really ruin your life is death. Attitude helps, believe me. The main, sometimes only,  good thing about having an awful disease is trying to help other people with what I have learned, and letting you all know you are not alone. Love peace & hugs…

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