Numb – #AtoZChallenge

Did you know that there are different kinds of numbness?

When most people think about being numb, they are thinking of anesthesia — the absence of any feeling. Most people are familiar with the term, relating it to the temporary anesthesia they have when they are having a medical procedure done. When the anesthetic wears off, their sensation returns. This is the kind of profound numbness often experienced by someone who is a paraplegic or quadriplegic, a loss of all sensation past the place that their spinal cord is injured. Some people with MS experience this kind of numbness in certain areas of their bodies. There is no damage to the tissue, but the nerves that transmit sensation to the brain are not doing their job due to being injured.

The other kinds of numbness are not the complete absence of sensation, but rather different states of altered sensation. Paresthesia and dysesthesia are the two most common in MS.

Paresthesia means “irregular sensation,” usually one that is annoying but not exactly painful. Most people have experienced that super-uncomfortable feeling of pins and needles that you feel when your foot is waking up after falling asleep. You really don’t want to walk on that foot until the sensation goes away! This sensation is really common in people with MS. Other manifestations of paresthesia are tingling, buzzing, or crawling sensations. Personally, I have the pins-and-needles feeling in my left foot all the time, but I also have intermittent buzzing. It feels as though a cell phone in “vibrate” mode has been implanted under the skin of my left leg and that I’m receiving calls that for some freaking reason are not going to voice mail. Bzzzzz. Bzzzzz. Bzzzzz. Bzzzzz. Thankfully, that imaginary phone doesn’t ring nonstop, but when it does start buzzing, it drives me crazy.

Dysesthesia means “abnormal sensation,” and can include feelings of burning, wetness, itching, or electric shock, when nothing has happened to cause or evoke those sensations. It can also refer to a sensation that just isn’t appropriate to the stimulus. For example, my left side does not feel sharpness properly from the waist down. I can feel it if you stick me with a pin, but it feels more like dull pressure than a sharp prick. On the other hand, that same area feels innocuous touch — like brushing up against something — inappropriately strongly, such that being lightly touched or even wearing clothing (or having covers on in bed) can be really uncomfortable and impossible to tune out. Needless to say, this can be problematic!

I’m very blessed to have had good results from taking Gabapentin for the paresthesia and dysesthesia I experience. It has turned the discomfort down to a dull roar. Unfortunately, I’ve had to increase the dose over the years. Back in 2009, I took 900 mg/day; now I take 3200 mg/day. I told Dr. Zarelli, my neurologist, that I was worried about having to take so much to get the same effect, but he assured me that it is by no means a particularly high dose, so I guess I have a while to go before I have to find some other treatment. (As long as that treatment doesn’t involve sleeping with no bedcovers or walking around naked, I’ll be fine.)

Pins” by Jayjay P / CC BY

Infection – #AtoZChallenge

It’s hard to explain to people how infections are related to Multiple Sclerosis, since MS doesn’t technically cause infection. But I’ll give it a try!

Think, for a moment, about sinus infections. Most people can relate to the congestion, the headache, the face pain. But it makes no sense to most people that when I have a sinus infection, I’m liable to have tingling in my foot or an achy leg. How could that possibly be related to my sinuses?!

Well, when anyone’s body gets an infection, their immune system kicks in to fight it. Just like when Pac-Man has to chase down and chomp up the ghosts in the video game, your immune cells seek out infection and attack and remove it, to keep it from harming your body.

Unfortunately, Multiple Sclerosis is a disease where your body misidentifies actual good cells — those that make up the protective myelin sheath that covers all your nerves — for bad cells, and sends your immune cells out to chomp that myelin right off the nerves. The worst part? For a person who has MS, every time the immune response is turned on to attack another infection in the body, it turns on to attack the myelin again, as well. So every infection is a double whammy of the expected symptoms  of that illness and a flare-up of MS symptoms, too.

I’m especially cursed by this phenomenon, because I have damage to the nerves that lead to my bladder. I have trouble realizing that I have to pee, because the signals don’t reliably travel from bladder to brain, and I often have trouble peeing, because the signals don’t reliably travel from brain to bladder. This puts me at great risk of urinary tract infections, which can be caused by residual urine. And every UTI causes a worsening of MS symptoms, so it’s a vicious circle.

It’s frustrating. I don’t want to be a whiner, constantly going, “You don’t understand! Yes, I ‘only’ have a UTI or a cold or an infected paper cut, but it’s worse for me than it would be for you!” But it’s true, and it’s hard to make people understand that when I’m dealing with those things, I’m also getting slammed with extra-bad MS symptoms on top of it all.

(If we were in Notting Hill, I’d be going for that last brownie.)

Little MS energy audit

My energy levels are all over the place.

Some days, I feel like I can conquer the world, and I am able to do stuff like crazy. Other days, I wonder if I want to expend the effort to roll over in bed. You know, because I’d have to get the dog to scoot over, and then lift my head up and… ugh, it’s just not worth it. (These days outnumber the energetic ones 10 to 1.)

I know on a cognitive level that this is textbook MS stuff; fatigue is present in more than 90% of multiple sclerosis patients. Web MD defines fatigue as “a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep” and adds that MS fatigue “comes on more easily and suddenly than normal fatigue.” It does not seem to correlate with the type of MS or the number of years one has had it, the severity of nerve damage, or how severe one’s impairment is.

There is no clear-cut understanding of the causation, either. The fatigue might be related to primary disease factors; for instance, since I have damaged nerves to my left leg, the muscles don’t work well and thus tire easily. Researchers also believe this, in turn, puts more stress on the central nervous system, which could cause overall fatigue. Secondary factors related to MS can also contribute. Medications might have an effect on energy levels; the depression that is common in people with chronic disease could contribute as well.

It could be MS fatigue. It probably is. I know this.

But on a minute-by-minute basis, that’s not how it feels. It feels the same way it always has – like I’m not measuring up. Other people get their work done. Other people finish their chores. Other people take care of their homes. Other people are successful, are competent, are not total and complete losers. (I even know how exaggerated these thoughts are… but I still think them.)

I tell myself I shouldn’t be so lazy, that I should get the hell up and live my life.

I tell myself that just because four different drugs for the fatigue haven’t worked or had horrible side effects, that doesn’t mean I’ll never find one that helps.

I tell myself that all the studies say that my fatigue may improve if I eat well, get exercise, take good care of myself, schedule rest periods, reduce stress, practice mindfulness and simplify my life. (Then I laugh hysterically, because all of those things take energy, and if I had any energy, I’d be a lot more inclined to do them.)

Going down to three days a week at work has definitely helped. The main floor of my house is pretty well under control. I’m keeping up with laundry for the most part. I’ve checked some books out of the library and actually read them. I’ve been blogging a bit more. I’ve managed to see some friends. I’ve even been to the gym, though walking on a treadmill at 3 mph doesn’t seem like an amazing triumph.

It’s just worrisome when lying in bed for 18 hours seems like a more appealing option than any of these – or, at any rate, an option I think I can handle – or when it seems that it takes all my effort to live my life halfway when I want to live it to the full.

Edited to add: After writing this, I went to bed for 90 minutes… but then I got up and went to the gym and took the kids to the movies and went to the grocery store. Now I’m going to bed again, but still – I’m proud. 

Hot Water Heater” by Dylan Pankow / CC BY