A few times I’ve mentioned suffering from allodynia, thinking I needed a diagnosis of it. I had moments, even days of pain.
But this pain is not like normal pain. Allodynia, meaning other pain, can cause all over body pain 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.
To have pain like this, it 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, they hurt. 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.
With pain, it is supposed to warn and deter you from harm, letting the pain serve as a warning to a person, hopefully saving them from an injury. With allodynia, the pain is unnecessary and unwarranted. The technical term, Dynamic Allodyniais, and it can be related to migraines.
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, it had to come off immediately when I got back into the car for the drive home. it hurt my chest and shoulders, back and ribs.
Even getting ready that morning, or any morning I’m suffering from allodynia, I have to change a million times to find something loose enough and comfortable enough to not make my pain any 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 the seatbelt as loose as possible. Walking can hurt, and definitely no dancing or running – (who am I kidding, I never run). A blanket can be too much, something soft is needed – but a weighted blanket I’ve heard helps. Showering with a high-pressure head can be risky but sitting or laying for a bath can be just as bad.
My Bilbo, wanting to cuddle on top of me, it almost left me in tears. The pressure of his paws was unbearable. I had never had face pain before, but even the slightest touch felt unpleasant.
I called my doctor earlier this week to bring it up, the allodynia, and I had called before to mention my insomnia fits. She had prescribed Mirtazapine and Melatonin just a few days prior, but a new problem had to show its face. I possibly thought I had fibromyalgia, with symptoms galore. With a draw of blood and a physical exam, her touch and pressure were miserable. But, she agreed with me about allodynia.
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, even allodynia. I do suffer from migraines regularly. I go through my Imitrex so quickly, with only nine prescribed per month, it makes it more difficult to fight or prevent them from getting out of hand.
Now, I don’t know if my migraines and allodynia are related, but an appointment with neurology is being scheduled for me at the VA hospital.
My primary care physician, Dr. C, she wanted to avoid adding another medication to my ‘cocktail’ – (it is humorous that she used that term because I do, too), so an idea of upping my Gabapentin was suggested. Primary care had told me that possibly my nerve pain in my breast could have been a precursor to the allodynia and that we hoped it would go away. There was a chance of this pain sticking around, and the doctor even said the dreaded words, that it could stay forever. Great, another ailment to add to my list of issues.
I had told her about my Gabapentin beginning, where I was prescribed to take three 300mg at 3x a day. This was way too much. I was drunk feeling, blacking out and getting lightheaded. The dosage size was too much medication to begin with, so I dropped my dosage size myself. I normally take 300mg, one pill, in the morning and afternoon, and two at night. With the Mirtazapine and Melatonin, the Gabapentin being upped was a major cocktail that would definitely make me sleep at night. Adding the Mirtazapine and Melatonin should make me sleepier but the hated Prednisone causes me some major insomnia.
Sometimes I’ll either stay up late restless or I’ll wake up extremely early hurting. I try to catch up on sleep when I can, so naps are becoming more frequent for me.
My primary care physician suggested upping the dosage size to 400mg instead of 300mg, to hopefully help curb some of the nerve stimuli causing me the allodynia suffering. With an upped dose, my breast nerve pain will surely still be taken care of, with joint pain subsiding, hopefully, too. Upping the dosage should help my all over body pain to go away.
The doctor ordered up blood tests, a CRP, C-reactive protein, which is used to look for some inflammation. I tried to view my health record but no new blood tests were entered. Inflammation or infection leads to high levels so I will try to update this post when those results are available. I’d like to add that the blood draw isn’t the worst part, the worst part is the tape. It turns my skin red and irritates me every time, removing it is never fun, it feels like it takes my skin with it.
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 just hurting all over, fighting tears as I am waking up in pain. I had it a few times to where it would last a few days but now I have had it for over a week or so. I have stayed in pajamas, called into work, which is a good thing since the Gabapentin and Mirtazapine cause blurred vision in either one of my eyes or both.
I had told my boss about this and he suggested not coming in, I even drove out to my workplace one morning, got ready and in my scrubs, trying to avoid a day off, and my boss ended up sending me home anyway. My eyes were no good to be stabbing people with needles, I would be a hazard to the patients and myself, with needle sticks, hitting nerves, or just not hitting the vein itself. This week has been a bust for me, my eyes and my body.
I am due for my next infusion this upcoming week, Entyvio infusion #4. I know my Crohn’s issues haven’t subsided, I’ve had issues regularly still. I wake up feeling miserable, that’s if I do sleep, and I have symptoms all day.
I know it had been a while since my last post, but the pain, blurred vision and trying to fit in a photoshoot here and there with working when I can, my days have been busy busy.
I’ve done a few shoots this past week, which helps me keep up with coloring my hair – I can’t have it looking awful for photos. I’ve even curled it a few times, sometimes with tutorials on YouTube and even aluminum foil. My natural curls aren’t terrible but if I want to wear it curly and stop straightening it, then I have to care for it differently. I want a perm more and more, I would wear my hair so huge! I just may get one!
I’m still in the editing process with my Everyday Health assignments, my Crohn’s journey being a little different with being a vet and moving in the middle of diagnosis, I had to clarify some things. I continue to add to IBD News, with this week focusing on the extra-intestinal problems with Crohn’s disease, discussing other organs affected and blood. See Crohn’s Disease and Extra-intestinal Problems Part 4.
I’ve thought about just writing a post whenever I get a good train of thought. Sometimes I will keep notes for a long time, intending on expanding them into a post, but next thing I know, two weeks have passed and I’ve got other things going on by then and a lot to catch you up on when I do post.
Perhaps I’ll try to post separately? One focusing on my daily issues and another for my Crohn’s disease and a further explanation of what’s going on? I also thought about titling each with the corresponding week of the year. I know that having posts focusing on Crohn’s and those problems could be beneficial to those also battling a Crohn’s or IBD journey. If you have an input or idea, I’m always open to suggestions!
Enjoy your weekend, I hope the past two weeks have been good to you. I’ll plan on seeing you very soon!
And as always, any information you’d like to offer up about Remicade infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
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