It’s time to talk about the days that aren’t so good. FLARES. UGH.
Most of the time my pain is manageable, but sometimes I do have “breakthrough pain.” For me, this usually means bladder pain — the kind that feels like a bladder infection, but isn’t. Deep in my lower abdomen I feel a heavy ache with burning on top of that. It can also feel like a pinching feeling, like tiny sharp pointed fingers are pinching the lining of my bladder. Ow! Ow! Ow! (If this kind of flare lasts for more than 3 days I call my primary doctor and go in for a urine test. Most of the time I am clear, but once in awhile I get a real bacterial infection and need to take antibiotics asap. Antibiotics cause even more bladder pain so I know I will be down for at least another week. Ugh.)
PNE flares are when the damaged pudendal / perineal nerves in my left pelvis get “turned on” and it feels like a knife wrapped with barbed wire piercing into my flesh. Yes, it hurts as bad as it sounds. (Thankfully, with the pump dripping bupivacaine into my spinal fluid, this pain is masked most of the time.)
Flares happen when:
- I don’t get enough sleep
- I eat too much acidic food
- I am stressed
- it’s too hot
- it’s too cold
- for no particular reason
You may notice that one of these – STRESS – is in bold. I have grudgingly come to the conclusion that STRESS is the number one cause of my pain. I did not want to believe that for a long time, but now I admit that I can feel the effects of stress in my body. Immediately.
The moment I hear or see something that is upsetting, I can feel noxious chemicals flowing into my body and heading for my bladder. When this happens I try to relax and breathe. If it is a minor stressor I am able to head off a flare by taking good care of myself in these moments. I apply everything I know from my 12-step program and my meditation practice.
The best pain reliever I have discovered is ART. I can forget about my pain for up to an hour at a time by browsing art online — or, even better, by getting involved in making my own art.
This doesn’t always work, however. Some flares are so BIG that all I can do is take medication, go to bed with a heating pad and try to sleep through it. Drinking water mixed with a teaspoon of baking soda seems to help too. This and other tips from The IC Network and The Interstitial Cystitis Association have been life-savers.
Do you experience these kinds of flares? Do you have any tips to share that might help someone else?