One of my most frustrating symptoms of any of my chronic illnesses is the one that is the least visible and the least understood. The medical term is “tactile allodynia” or simply “allodynia” but is often just referred to as hypersensitivity. Sounds like such a simple description for something that causes excruciating pain. Of the variety of types of pain I deal with on a regular basis, this hypersensivity is by far the most frustrating because there is so little that can be done for it. Allodynia is often associated with conditions such as fibromyalgia, neuropathy, and migraines or may not be connected to another condition at all. The joys of all the unknown that comes with invisible chronic illnesses.
I felt so alone when I started dealing with it on a regular basis but after writing a blog post about the frustration in dealing with allodynia in 2012, I quickly learned that I was not alone. To this day, it continues to be one of the most popular posts here at A New Kind of Normal. I have learned a lot about managing hypersensitivity since then through my own trial and error but I have also learned a lot through the comments left by readers and the community.
Today I am going to share some options for managing the pain and frustrations of hypersensitivity that I have found helpful over the years of battling allodynia:
1- Hot bath/shower: Sometimes one of the best things I can do to knock the intensity of the hypersensitivity down is to take as hot a bath or shower as I can stand. Epsom salt helps when I can soak in the bath. I would LOVE to have a whirlpool tub (maybe one day!). There have actually been times where I have crawled to the bathroom in the middle of the night just to have to soak just to knock the pain down enough to sleep.
2- MyPainAway Fibro Cream: Usually I would pass by this cream on the shelf without giving it a second glance thinking it was some kind of gimmick but I am so glad that I gave it a try. I found MyPainAway Fibro Cream at my local CVS and it is is a homeopathic cream to relieve pains associated with fibromyalgia and neuropathy. After taking a hot shower or bath, I will put this cream all over and it really helps cut down on the hypersensitivity. I also really appreciate that it doesn’t have a strong odor like so many other pain relieving creams have. A bonus perk is that 3% of all the sales are donated to the Fibromyalgia Research Foundation.
3- Invest in soft sheets/blankets/pajamas: When allodynia flares at its worst, even the softest fabrics can feel like sandpaper but it is really important to have some items on hand that feel soothing on your skin whether it is a really soft cotton or silk. I’ve always been a big fan of investing in pajamas that make you feel good (whether they are just really cute or really comfy) when you have a chronic illness but when you suffer with hypersensitivity, it is extra important.
4- Lidocaine can be a miracle: Lidocaine is a numbing agent that comes in a variety of forms (creams, patches, injections, etc) that can do a variety of miracles. Unfortunately, in my experience, when my allodynia flares, the vast majority of the time, my vulvadynia flares as well which makes sense since both are related to overactive nerves and the pain from vulvadynia can be excruciating. It hurts to stand, sit, or lay down. Sometimes even the pressure of wearing panties is enough to make you want to climb the wall. My apologies for the TMI if there are any male readers but for my fellow female warriors, if you deal with allodynia, do you deal with vulvadynia as well? After a hot bath, I use lidocaine gel to help knock down the pain but unfortunately, this is one of those symptoms that just hast to pass on its own.
5- Sometimes medications like Lyrica, Cymbalta, and Neurtontin can be helpful: All medications come with a list of side effects but sometimes the benefits can far outweigh the side effects. Unfortunately medications help people differently so there will be some (sometimes a lot) of trial and error involved in finding the medication that helps you the best but once you do, it feels like the heavens part and angels start singing.
Other helpful resources:
When Touch Hurts & Blood Matters: Getting At The Pain In Fibromyalgia & CFS
Allodynia: When Touch Hurts But Shouldn’t
Migraine, Allodynia, and Central Sensitization
Do you have any recommendations for dealing with allodynia?
P.S. Check out the original post, My Hair Hurts: Dealing With Tactile Allodynia & Fibromyalgia, to become a part of the community and read the many ways other battling allodynia are choosing to fight!
2 comments on “Allodynia: The Pain No One Sees”
I’m on a blood thinner and can’t take anything for the fibro, and I just today learned what the skin-to-muslce pain is but haven’t talked to my doctor about it yet. I can’t lay on a mattress for more than 2 minutes, and when I stand up the pain even on my skin is so bad that it itches. Blood pressure cuffs make my skin turn so red it looks burned, and that itches (no matter if done over clothing or not). Every little thing that touches my skin leaves red marks than hurt, burn, and itch. I’m scared I’ll never be able to sleep in a bed again, which just terrifies me. I sleep in a recliner, a big lazy boy that is my only saving grace. But that recliner is now making my back and shoulders, even hips ache. I don’t know what to do. Being on Eliquis means I can’t try the usual meds for fibro pain, and I can’t afford to gain weight with Lyrica and others due to pre diabetes. My biggest dream right now is to be able to lay down and sleep on a mattress. I’m glad I found your site.
[…] Be sure to stop by the follow up post Allodynia: The Pain No One Sees to check out five treatment options that may be able to provide you some relief from your […]