A few times I’ve mentioned suffering from allodynia, thinking I needed a diagnosis of it. I have had moments, even days, of pain.
But this pain is not like normal pain. Allodynia can cause body pain all over, where even the slightest touch can ache you. Wearing a T-shirt can feel uncomfortable, a bra is out of the question, and pants, well, those aren’t happening, either.
Having pain like this can be hard to explain. I take my hands and I press lightly on my skin, and everything, from the sides of my face to the back of my legs and feet, hurts. I get tender to the touch on every inch of my skin. Light touches of a hug or even a bump on the counter can cause severe pain.
Pain is supposed to warn and deter you from harm. It serves as a warning to hopefully save someone from an injury. With allodynia, the pain is unnecessary and unwarranted. It also can be related to migraines.
When I’m suffering from allodynia, even getting ready in the morning is difficult. I have to change a million times to find something loose and comfortable enough to avoid making my pain worse than it already is. I call these my “eggshell days.”
No jeans, no belts, no tight-waisted dresses or skirts. No bra if you can get away with it, no tank tops or tight T-shirts. No hugging or goofing off, and no pats on the back. I won’t dance or be as lively. I try to wear a seatbelt as loose as possible. Walking can hurt, and definitely no running. (Who am I kidding? I never run!) A blanket can be too much. Something soft is needed, but I’ve heard a weighted blanket helps. Showering with a high-pressure head can be risky, but sitting or lying for a bath can be just as bad.
With allodynia, nerves are causing this dramatic reaction leading to pain. With migraines, sensitivity to light and vision changes, pain, and nausea can occur. Migraines can change the nerve stimuli, causing abnormal pain and even allodynia. I do suffer from migraines regularly. I go through my Imitrex (sumatriptan) so quickly, with only nine prescribed per month, that it makes it more difficult to fight or prevent them from getting out of hand.
Are Crohn’s disease and allodynia related? Because Crohn’s disease is so poorly understood, there are still many questions left unanswered. Crohn’s disease may be just a contributing factor.
Crohn’s disease, an autoimmune disease, can affect the body’s systems, creating and fighting inflammation, but also affecting locations other than the bowel. Because Crohn’s disease can be found anywhere in the body, not just in the digestive system, sometimes the nervous system is affected, too. With Crohn’s disease, other autoimmune diseases and inflammation disorders can develop.
Neurological manifestations of Crohn’s disease can include peripheral neuropathy, which includes pain, numbness and a tingling sensation to your hands or feet.
As I mentioned earlier, I am used to this allodynia and I have suffered with it for a long time. It used to come and go. I would wake up some mornings hurting all over, fighting tears. A few times it would last just a few days. But now I have had it for over a week. I have stayed in pajamas and called into work (which is a good thing because the gabapentin and mirtazapine cause blurred vision).
I have had allodynia fits before, but nothing like this past week. Leaning on the couch or driving in the car caused pain to my back. Carrying my over-the-shoulder purse caused pain to my shoulders, and wearing my leggings to the doctor was painful to my sides and hips. I wore a bra to the doctor, but it had to come off immediately when I got back into the car for the drive home. It hurt my chest, shoulders, back, and ribs.
With Crohn’s medications, your doctors may suggest a different treatment plan from what I have tried. I cannot, and would not, offer medical advice. I can only share what I know from my personal experiences. Remember, my Crohn’s disease is individual for me, and what works for me may not necessarily work for you.
For me, It Could Be Worse.
Remember, Crohn’s disease and ulcerative colitis have no cure, and complications from them can worsen over time without remission.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.