chronic illness · IC · medications · migraines · Physical therapy · self-care

All the pain

Here’s the real reason why I am here. Pain. I have been in pain since I was diagnosed with IC. But since September/October 2016 I have been having off the chart pain levels for both my IC and migraines.

For about a month, I had a migraine. I woke up with a migraine every day, which never had happened before. I’ve had migraines since I was 18 but never have I had a morning migraine. And now I was having them daily. I didn’t realize how long it had been going on, I was only minimizing the pain by taking Excedrin Migraine. My migraines we between a 7-9 on the pain scale for that long. I wasn’t on migraine meds because for a long time they were under control. But no longer. My sensitivity to lights, smells, and noises increased drastically. Smells that never bothered me before were coming at me like a blast of air in your face. And my visual auras, which are like headlights flashing in my eyes, were frequent as well.

I went to my doctor of 10+ years. She has seen me on every migraine med ever. We immediately got me on a preventative, Topamax (aka dopamax). And an abortive, Sumatriptan. As soon as I started taking the Topamax there was a huge decrease in my migraines. But my visual auras have increased and sometimes leave me feeling off balance. They are still continuing now. But we might be changing my migraine meds, at my next follow-up on January 4th, because of that. We shall see what happens.

I also bought migraine glasses, which are not RX, nor are they cheap. But they are made with a special tint, called FL-41, which helps to cut out certain types of light. I really like them when I am in the classroom because of the terrible fluorescent lighting. I would say that they have helped me a lot. They are worth the price of $149, if you have migraines with light sensitivity, you will understand it. I bought mine from https://www.axonoptics.com/  but there are different stores that sell them.

As for my IC, it turned into debilitating pain. The pelvic floor muscles, which everyone has, they sit at the bottom of your pelvis and cradle your bladder and uterus and whatnot. Mine decided to tense up as tight as possible. To the point where I can’t pee when I want or need to go. And because I have IC, I tend to have to go often…especially when I’m stressed. So not being able to pee really does not help the situation. I can sit on the toilet anywhere between 1-10 minutes before my muscles relax enough to allow me to pee.  Yea…it does hurt. This often ranges from a 7-10 on the pain scale.

My urologist referred me to a physical therapist for this. I have gone to physical therapy for this before, and at the time I thought that hurt really badly. Oh, how wrong I was. No this time around for physical therapy…is pure hell. Physical therapy for pelvic floor muscles involves manual internal manipulation of the muscles. This is why it can’t be just any old Joe PT Schmo off the street, it has to be a Physical Therapist who has had specialized training. But as one might imagine, internal physical therapy hurts something fierce. I had PT on my ankle and that hurt quite a bit and I didn’t like it at all. But PT for internal PFM is like no pain that can be described. So I’ll leave it at that. Afterward, I could barely walk for a week. Please understand she did minimal internal work, she didn’t push me too hard and stopped when I couldn’t take it. It was just my body’s reaction to be like OMG WTF ARE YOU DOING TO ME?!?!? I couldn’t walk or move. This was a 10-11 on the pain scale. It was bad. I expect it to happen again. Unfortunately. But I do see a difference, I have more release in my PFM. So the PT is working how it is supposed to.

Another symptom that was appearing during those months was all the muscles from my thighs to my abs were sore. This tends to be a consistent 5-7 on the pain scale. They felt like I had worked out a lot, which I don’t…because… IC. When I went to my now physical therapist, Dr. Jen. She told me that my whole body was tensing up because it was trying to protect my bladder and it was unable to release itself so it stayed tensed up all the time.  So needless to say Dr. Jen and I have a lot to work on. My main thing is: relax! lol Like it’s that easy.

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