My “bad periods” are becoming a regular companion in my experience of Lyme disease. I don’t mean the overarching up and down of my fatigue, headaches, and other symptoms, but the specific moments when I suddenly realize that something is wrong and my body’s demands overwhelm anything else.

At this point they’ve become so common that I’ve named them flares… the experience of each is unique and as a group they are becoming increasingly well defined… so I thought it might be worth documenting what I’m experiencing.

So let me describe the most recent one. It happened during an airplane flight (there’s a reason I avoid them!). First, my extremities began to feel cold and then they started to tingle. I felt a bit nauseous, and then I felt really really hot and started sweating like crazy. I took layers off in an attempt to cool down and tried to focus on something else besides my body which clearly wanted nothing more than to be off that plane and home in bed. When the plane landed and I could stand up, I was out of breath almost just from that activity. I also felt dizzy at first.

When I got to the front of the plane, my friend who was waiting with my bag took one look at me and asked if I was O.K. I shook my head no and started trying to get my bag. But my hands were so clumsy I couldn’t easily manipulate the handle or arrange my belongings so he ended up just taking both my bags and both of his own. I used my new cane (I should write a separate post about that!) to make my way out of the walkway and through the airport, and after walking for about 5 minutes I got to the moving walk. At that point I needed both the railing and my cane to help hold me up and spent the next two minutes trying to catch my breath. Also I stopped sweating and got very very cold (this usually happens after the sweats).

My friend suggested I sit down at the other end of it and rest. As I made the last push to the seats, I experienced a sort of tunnel vision focused just on the chairs I was aiming my body at. While I was catching my breath (after I sat down) I started to feel as if the room was spinning.  I was also having trouble projecting my voice (strength? amount of air?). We decided a wheelchair was in order and with the airport’s help I sat still for the remainder of my trip out of the terminal. At that point everything was making me out of breath (even transferring from my seat where I was resting to the wheelchair).

Once I got the wheelchair I didn’t have to move for some time and slowly recovered some strength. The worst flare up of this sort I ever had was in September 2008, and that one lasted about 6 hours. In this case, it started around 8:30pm and by the time I was finally at home around 11:30pm  I was past the worst of it.

It is also interesting to note what is not part of a flare. For example, while a stiff and painful neck and back may herald a bad day (and increased likelihood of flares) they don’t appear just because of one. Headaches are similar. In fact none of my pain related symptoms seem tied to flares.

I don’t know how similar this is to others’ experiences of Lyme disease, but my gut feeling is that the causes are primarily neurological. I am thinking of speaking with a neurologist who specializes in Lyme disease to learn more about the causes of these symptoms and whether there’s anything I can do to manage them. In the meantime, I am very very grateful to have friends who will take care of me when these unpredictable episodes happen in circumstances outside of the safety and comfort of my home.

5 thoughts on “Flares

  1. I don’t have the chills and sweats (though I might have just started with sweats recently on Plaquenil), but the rest of it sounds familiar. And I too believe it’s neurologically driven. Lately I’ve been improving, but for most of my illness if I encounter any little stressor, like being around too many chattering people (restaurant, basically anywhere in public), I have *instant* extreme fatigue and severe brain fog, trouble manipulating hands, like you said. Not so much short of breath as depressed breathing, like I have to remember to do it. And for unknown reasons I always begin limping, sort of not able to control the left leg as well, I think it is. Normally I have no limp. It comes on *instantly*, and then all this lasts anywhere from an hour to a day.

    So, it sounds familiar to me, neuro, and I don’t know how to manage it, except for killing the bugs. I have been seeing a chiropractor who practices Total Body Modification and other stuff involving tapping of my spine in specific locations while I breathe, etc. That stuff works very slowly, so not sure if I’d be getting better without it or not. But regimens of tetracycline, mepron, diflucan, ceftin, biaxin, and now plaquenil, have been key.

    Re-reading your post, one thing that I feel was beneficial for me was that if I feel at all bad, I don’t push at all. I just hunker down, stay home. I couldn’t imagine even today flying anywhere, managing the airport, luggage, crowds, walking, etc. I walk every day a little bit in a quiet farm setting. Aside from that I go out on short errands, and that’s it. In the summer I sit in the garden a lot.

    Feel better,

  2. Thanks! I stay home when I can (and when I can predict), and I try to (almost) never fly, but as far as I can tell most of the time having these doesn’t set me back in the big picture even if they are difficult. And I wouldn’t have given up this most recent trip for anything! Although a work trip, it gave me unexpected and deep new resources of spiritual and mental health. But that’s a story for another blog, or at least another day :).

  3. It sure sounds neurological, doesn’t it. I have chills more than sweats they come at night. But I feel strange and out of body at times with weird symptoms. Sorry this has become something else you must deal with….glad it does not come and stay.

  4. PS I am wondering if your have the orthostatic intolerance where your heart rate changes quickly or it goes up to a place where you go into anerobic energy? I know little about this and maybe am not stating this clearly but I wonder if this is causing the cold/hot sensations and complete weakness, etc.
    Just a thought

  5. Very interesting .. I looked this up and it is a surprisingly close match to my symptoms. I know that I have orthostatic hypotension (aggravated by my medication at times, but present on days I feel particularly bad even now). I had no idea that it could affect me beyond the momentary dizziness I sometimes feel when I stand up too quickly. Also easy to treat supposedly — just drink lots of water. Certainly can’t hurt to try that :).

    Thanks for the pointer.

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