chronic illness

Allodynia: The Pain No One Sees

Allodynia & Invisible Pain

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!

chronic illness

My Hair Hurts: Dealing With Tactile Allodynia & Fibromyalgia

My Hair Hurts: Dealing With Tactile Allodynia

I mentioned in one of my recent posts about my fibromyalgia flare that seems to have been hanging around since my most recent discharge from the hospital. A lot of the abdominal pain, and even pelvic pain, has largely subsided recently but the constant joint pressure and hypersensitivity have made it difficult to enjoy the new-found freedom from some of my other issues.

I think explaining joint pain to others is pretty routine. Most people are at least familiar with arthritis so drawing a pain parallel between the two seems to end with an understanding nod of acknowledgment from the other party. To say that your entire body feels bruised? That your sheets feel like sandpaper? Or eve crazier – your hair hurts? That’s a different story.

The medical term for this sensitivity to touch is tactile allodynia and in my personal experience, it has become one of my most frustrating symptoms of fibromyalgia. Early in my diagnosis, it only surfaced sparingly yet as time as passed on, it has become a more recent visitor. It has been hanging out since my discharge which would make this my longest flare with this symptom specifically.

I think one of the most frustrating things about it is that I have found little that helps the pain and irritation go away. There are times where the breeze of the fan against my skin feels like a thousand needles. Sometimes the pressure of sitting or laying down feels like my skin is covered in bruises. Other times it seems that my skin is crawling with ants.

The pain and frustration have reduced me to a heap of tears on more than one occasion in the last three weeks. Heat and keeping my skin covered have been the only two things that have seemed to help but given the heat and humidity that accompany summer in the south its not very fun. I have often wondered if  could bath in Lidocaine gel in order to ease the symptoms.

But You Don't Look Sick

Let’s get this conversation started – do you deal with tactile allodynia (with or without the presence of fibromyaliga)? Find support from others in the comments section & be sure to add yours as well!


P.S. 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 hypersensitivity.