I have had migraines since I was a child. Sometimes I can go weeks without them, but not very often. Sometimes I have had them that lasted a whole month without a break.
The last several years its more like several a week. Sometimes on a good week just two. Sometimes 5 days of the week will be migraines, sometimes just one 4 day migraine.
I have found ways to function with them. Caffeine helps, over the counter migraine meds take the edge off, rest, avoiding sound and light, prescription medication, eating, and some days just ignoring them as best as I can, distractions help. I rarely miss work because of a migraine. If its a work day I do all of the above, and force myself to go into my classes. Sometimes they are so bad though I can’t stand to hear my own breathing, I need to wear a blindfold and hide behind a closed door. I hate this because there is nothing at all I can do except focus on the pain.
I have tried herbs, meds, diets, and all sorts of alternative remedies and nothing makes them go away.
Its been recently that I found out they are most likely caused by my Psoriatic Arthritis. When I think about it they probably started about the same time my Psoriasis started, preteen. But the truth is they aren’t 100% sure what causes any migraine.
Knowing that, as I sit here with depressed and unambitious on my third day of a migraine, I have some hope that the Remicade will actually help with the migraines.
Has anyone else with an auto immune or arthritis also suffer from chronic migraine?
Well the problem with writing a day later is I always feel so removed from yesterday’s pain, which is a good thing in a way. If I met a friend and they asked how yesterday was I would say it was fine. And in my mind now it pretty much was. I have to think hard to recall that although my energy was good nearly all day, my migraine was rather intense. I took several different medications and had coffee and it would calm down here and there but not go away. It was its second day around. I spent the day sitting quietly or laying down. I couldn’t gather the strength to get my paints out, which is a huge problem with having my studio so cluttered and crowded, I can no longer just go in and paint, but it requires me getting things out and setting them up, so I paint less. If I leave my painting stuff out on the kitchen table which is where I usually paint lately it can stay there for a week, and I really treasure my family time around a table. Maybe the solution is a nice painting lamp in the corner of the living room where I wouldn’t be too much in the way, but could have a small about of my paints out.
Today I didn’t have much to do but a routine mammogram, so today I spent the day not doing much at all. Spent a lot of time on the computer, shared some ice cream with my son and watched a little TV. I felt ok today, not too bad at all, but with a migraine that varied in intensity throughout the day. I was able to make dinner, and feel better at this time of day, 9 pm, than I have felt at this time of day in literally months. I will have to remember to take it easy more often. My body obviously likes it.
I have noticed many of the websites about Psoriatic Arthritis don’t even touch on the scary stuff. Many just mention stiff joints, and aches . Wouldn’t it be a blessing if that’s all it was?
Some go on to mention fatigue and joint damage, and fewer still joint deformity. It was years before I found out my migraines were probably caused by it. There is very little about how aggressive this illness can be.
Very few mention the things that scare me most. Heart attack, and that this illness can attack the organs. It can lead to blindness or auto immune deafness. Yes, luckily these things are rare, but shouldn’t we know they are part of it. I was completely ignorant until I went off my meds without my doctors permission and got a stern lecture from my doctor. If I had known more earlier it may have made for an earlier diagnosis. It took me years to learn that the crushing heart attack feeling pain in my chest and jaw was simply the Psoriatic Arthritis. Just swelling around my heart. Knowledge makes such pain less frightening when we experience it.
I had ear problems and I went to see three doctors and had to ask if it could be autoimmune, they said yes, gave me steroids and it went away. I can’t expect every doctor to know everything about PsA, and I do think I have the most amazing specialist ever, but I would love more information without having to dig so hard for it.
This is a metaphor that I used to explain to a friend how chronic illness effects my energy levels.
Everyone is a car, most are cars with 10 gallon tanks. Some have more…some are monster trucks. Those who are chronically ill have smaller tanks. Maybe we can fit in 8 gallons, or maybe only three. But the main problem isn’t how much we start out with, its that our tanks leak gasoline. If we stay parked they leak much slower, but even staying parked the tank is getting emptier and emptier. If we drive we not only use gas to keep the engine running but we leak gas too, and the faster we drive, the quicker it leaks. That all sounds annoying but it gets worse.
The gas guage doesn’t work, so we can think we have two gallons left, and all of a sudden we are on empty without warning. Then we just stop, and there isn’t really anything you can do, except fill up again. But the gas stations are closed. Maybe for a night, maybe for a few days. Maybe a tow truck can deliver a gallon of gas, but it cost a fortune. So we always need to be very careful to not run out of gas, it effects every choice we make.
If that is isn’t bad enough there is something wrong with the engine and we don’t know what it is, but sometimes even with a full tank of gas the car doesn’t run right or at all.
So my energy/exhaustion scale is 0-10, Zero being no gas, 10 being a full tank. I really don’t want to talk about “How much gas do you have now” so I will just leave it a scale of 1-10.
Today I woke with a migraine wound up staying home for the day. I got some computer work done, some house work and finished a painting of a blue dog that was suppose to be a brown dog. My energy level stayed pretty decent until about 6 pm which is great for me, and besides my migraine my pain stayed moderate at about a yellow.
After thinking hard about the numerical pain scale I started using a color spectrum for pain, see the color of pain blog post, but pain scale alone can not communicate how I feel. Energy level also has a huge influence. Pain of orange with high energy and I can still probably make it through a work day, blue pain with no energy and I can’t function.
I do think the numerical scale for energy can work, but backwards. I am thinking of it as a 10 gallon gas tank. Energy of 10 and I can do most anything, Zero I am flat on my face.
With the two scales I can use them together to give a more precise idea of how I am feeling. I will start using the two together and see how it works. A yellow pain with a 6 energy is very different than yellow with a 3 energy. It might help me communicate better with my family and doctors as well.