Baldiness Interview with Laura Bzowy of CFS Squared

Wowie Bzowy!

OK, it’s not like she hasn’t heard that before, but I couldn’t resist. I’m a sucker for a word fun. At any rate, Laura blogs over at CFS Squared. Not surprisingly, she has Chronic Fatigue Syndrome, and this past fall she began to experience some hair loss. I was honored that she sought out little old me for advice, which I gave here and here. Turns out my advice helped, so when I asked if I could interview her for Baldiness, she was overjoyed! (Perhaps that’s overstating; now leave me to my bubble.)

With that…

Bald Man: Bald by Design, Desire or Disease? This is always my first question. What’s the story behind your hair loss? When did it start? How extensive is it? That sort of thing. Let’s also talk about CFS, since that seems to be the major factor contributing to your hair loss. Can you share your story of diagnosis and adjusting to life with the disease?

CFS: I wish I was confident enough to say that I am bald by desire, but its not the case. While I am not exactly bald, I would have to say that my hair loss is contributed by disease. I have been having bouts of hair loss for the last 5 years or so. It lasts between a few weeks and a few months. Usually I notice it, when I am going through a phase of poor health. Last summer was the absolute worst its ever been, which resulted in me having to cut 4 1/2″ inches off. It was breaking off, and falling out from the root. My hair was a mess. I have only discussed this with my hair stylist and not my doctor (which one of these days I probably should do), but according to my stylist, she says its very common for mono (of which my CFS got its start) to cause hair loss. was diagnosed with CFS when I was in grad school. It completely disrupted my life. For about 18 months I felt like I had the most horrible flu ever. I was extremely tired, I hurt everywhere (even my hair hurt), I slept constantly (except at night- when I was supposed to), and every night at 6pm I would get incredibly high fevers that would last for hours…..you could actually set your clock to my fever – they happened every night at exactly the same time. I now suspect those fevers were a reaction to food, since I would eat a little bit, right before I would get one, and I would immediately get exhausted and be forced to go to bed. Strange, how we didn’t think food could be the cause at the time. My doctor treated my condition with antibiotics and low doses of antidepressants (ones that were tried were: Paxil, Elavil, Zoloft, Celexa) all of these made my symptoms worse- but since that was how you treated this illness at the time, we just kept trying different ones. It was about that time,when I first noticed my hair breaking off. Also, I took antibiotics consistently for 18 months. I do not recommend this!!!! At the time, it was the ONLY thing that worked, and I don’t regret the choice. While there are some consequences, I believe that the antibiotic treatment was the start of me getting well. If I had to do it again, well I would choose other methods, but it worked for quite awhile.

As for adjusting to life with the illness, it was baby steps. I had to move back with my parents, because I couldn’t take care of myself. After a 1.5 years of concentrating on getting well, I took on a job with a company (located in a warmer and drier climate) who knew my background and were very understanding if I needed to take a day or 2 off. After that, I just kept making small goals to learn how to live independently again. I would write everything down 50 times, because I was afraid of forgetting something….one of the symptoms of CFS is brain fog – where your brain just doesn’t function properly. There was a time, when it would take me a long time (several minutes) to tell you my own name. Eventually, I got tired of living that way, and I made up my mind to live my life without worrying what would cause a setback…..

Bald Man:CFS & Hair Loss – Were you surprised to find the two linked? What information have you found on the connection and possible treatment?

CFS: Yes! I was completely surprised to know that they are linked. I don’t know a whole lot about CFS and hair loss, but thanks to your blog I discovered that fevers can cause hair loss. Also, I think its another way to find out that something else is going on….if your hair is falling out for no apparent reason, or your skin is having issues that isn’t normal for you-then maybe something else is going on. I was already aware that I was having a bout of mono this last time when my hair started falling out, and when I read about the fever thing, I linked them together. You totally made me feel a lot better about the situation.

Bald Man: Life with Less Hair – How have you been coping with less hair? Is it something you’re fighting tooth and nail, or are you taking a more laid back approach: “Que sera sera.” What kind of day-to-day differences have you experienced?

CFS: Oh I took the laid back approach. I tried thickening products, but my hair rebelled even further. So I stopped using hair product altogether (with the exception of shampoo and the occasional lather of conditioner). I started wearing hats for a bit. Best thing I did though, was to cut a whole lot of it off. While my hair is a lot better now, than 6 months ago ( I still have a few issues). I HAVE to use baby shampoo, I don’t use styling product for everyday use, and I only use a hair dryer when I absolutely have to (such as on the days when I am running very very late….and if its really cold out- so I won’t catch pneumonia).

Bald Man: Off the Top of Your Head… – Your chance to get on a soap box about anything you want. CFS? Baldness? Canadian winters? What do you want to say to the readers of Baldiness.com?

CFS: I would like to thank you for the opportunity of talking about my hair issues on Baldiness.com. Now that I have some hair again, I don’t suppose you would have any hints about how to get rid of frizziness, due to the totally insane weather we have been getting in the Pacific Northwest

Bald Man: Hmmm… frizziness, eh? Best I can do is hope the 80’s make a comeback for you. I seem to remember frizziness being acceptable – nay desired – back then.