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

30 Things About My Invisible Illness You May Not Know – 2015 Edition

Invisible Illness Awareness Week - 30 Things About My Invisible Illness


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: endometriosis, fibromyalgia, chronic migraines, celiac disease, vulvadynia, orthostatic postural hypotension, adhesion related disorders, chronic pain, chronic fatigue, gastroparesis

2. I was diagnosed with it in the year: I received my first diagnosis in 2003. They kind of snowballed from there!

3. But I had symptoms since: 2003. I got really, really lucky. I had an amazing doctor that had just moved to town that I was referred to when my primary care doctor decided that I had a “female problem.” By the time my pain started to significantly impact daily life, I had surgery and was officially diagnosed within three months. The average length of time it takes to be diagnosed with endo is roughly 7 years.

4. The biggest adjustment I’ve had to make is: Leaving the workforce and pursuing disability. It was honestly the hardest decision I ever made. I felt like such a failure. I had worked my butt off to get my Master’s degree (sometimes working two jobs) to become a hospital chaplain and I loved it. Absolutely loved it but my body didn’t so I tried to stick it out in the job I had been working throughout grad school but it got to the point where I could barely function. I am still in the disability process and my quality of life has continued to declined but at least I have more time with my family.

5. Most people assume: That now that I am not working, my life is a piece of cake and I lay around eating bonbons all day.

6. The hardest part about mornings are: Getting my joints moving! I feel like the Tin Man without his oil can most mornings (especially in cool or rainy weather)

7. My favorite medical TV show is: Untold Stories of the ER (as a chaplain I spent a lot of time in the ER and you wouldn’t believe some of the crazy stuff that takes place in there!)

8. A gadget I couldn’t live without is: My tablet – it helps keep me connected with the outside world but can be easier on the hands than a laptop

9. The hardest part about nights are: Getting comfortable temperature wise! Many nights, I need my heated blanket for my joint pain or allodynia but I also get terrible night sweats so I end up sleeping in the least amount of clothes possible to make being able to tolerate the heated throw possible.

10. Each day I take __ pills & vitamins. (No comments, please) Somewhere between 15-18

11. Regarding alternative treatments I: have tried just about everything under the sun. Physical therapy, chiropractors, herbs, dietary changes, etc.

12. If I had to choose between an invisible illness or visible I would choose: My illness is becoming more and more visible as I have had to start using mobility aids more frequently and this summer I decided “what the heck” and started wearing a two piece bathing suit to the pool and the beach, so I’ve gotten a lot of strange stares and whispers. Add in the purple hair and our transracial family, we’ve grown accustomed to it.

13. Regarding working and career: I’m in the final stages of the disability process (I actually have my hearing date! Hallelujah!) but I am also coming to a place where I am redefining what career means to my life personally and how I want this blog to function and where I want it to go in the future so I’ve got a lot rolling around in my brain on that one.

14. People would be surprised to know: That I still love to ride roller coasters. I cannot ride them as many times in a row as I used to but there is nothing better than a good coaster!

15. The hardest thing to accept about my new reality has been: Learning to say no and learning how to be more flexible in scheduling. I am a creature that thrives in structure with a plan and lists in hand and I have always had a people-pleaser, “almost type A” personality so letting go of that and most importantly learning that letting go of that is not equivalent to failure has been a hard hurdle to climb over.

16. Something I never thought I could do with my illness that I did was: Meet so many amazing people all over the world. I have developed some of the most deep and meaningful relationships in my life after being diagnosed and being a part of various support groups or activist groups. My life has been truly changed by some of the amazing people I have met (including all of you guys!).

17. The commercials about my illness: make me want to scream. No one wants to have a happy period. I don’t care if you have endo or not. You do not want to go down a water slide or turn flips off a diving board in a white bikini when Aunt Flo arrives for her monthly visit. Get real.

18. Something I really miss doing since I was diagnosed is: running. I miss being able to lace up my sneakers and pounding the pavement for a couple miles. I got the best thinking and praying done that way. Maybe I can find a way to ease into doing a little running. I may not be able to go back to 5-8 miles but maybe I can shoot for 1 or 2.

19. It was really hard to have to give up: Gluten. Well, it has gotten easier over time and even living in a tiny town, there are now so many more gluten-free options available so its not a big of a change as it would have been if I had been diagnosed even ten years ago. I just really miss Krispy Kreme donuts, Wendy’s Spicy Chicken Sandwich, and Pizza Hut breadsticks.

20. A new hobby I have taken up since my diagnosis is: Blogging/writing. I always liked writing and was rather good at it but I never thought that I would be pursuing it as a career and even considering writing a book!

21. If I could have one day of feeling normal again I would: Eat a lot of gluten and head to Cedar Point and ride as many roller coaster as possible.

22. My illness has taught me: That I am a total badass and so much stronger that I ever thought I could be. I also learned that Jesus is a total badass and the depths of his love, mercy, grace, peace, comfort, wisdom, and fight surpass all understanding.

23. Want to know a secret? One thing people say that gets under my skin is: “I heard about this juice/supplement . . . . ”

24. But I love it when people: “How can I pray for you?”

25. My favorite motto, scripture, quote that gets me through tough times is: “When darkness comes, I’ll light the night with stars” ~ Skillet, “Whispers In The Dark” and “They can’t keep their chains on me when the Truth has set me free” ~ Skillet, “Not Gonna Die”

26. When someone is diagnosed I’d like to tell them: That I am sorry, that I will be praying for them, and how much I recommend researching and finding a support group to be a part of.It makes an absolute world of difference to feel like you have a place where you belong with people who can actually say “I understand” and mean it.

27. Something that has surprised me about living with an illness is: How much stronger it has made my faith. I had to do a lot of wrestling but it was through that at wrestling that I truly discovered not only what I believed but why I believed it. It was through the hardship that God’s character was revealed to me in such a deep and meaningful way and I wouldn’t trade that for anything.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband and mom have spent so, so many nights in those hellish hospital chairs to make sure that I have never had to spent the night alone in the hospital even when I told them I would be ok and encouraged them to go home. My dad always researches the best gluten-free places to eat whenever we travel somewhere and always secretly (or not so secretly) researches any new diagnoses or treatments to make sure I have the best care possible. I may be almost in my mid-30s (YIKES) but I always feel like I’m still my parents baby girl and my husband makes me feel so safe and protected.

29. I’m involved with Invisible Illness Week because: every voice matters. It is crucial for awareness, education, and resources to be shared about invisible illnesses that are affecting millions of lives worldwide and every single voice makes a difference.

30. The fact that you read this list makes me feel: like a part of something special.




This post is written in celebration of the 2015 Invisible Illness Awareness Week. You can also check out my 30 Things You May Not Know About My Invisible Illness post from the 2013 Invisible Illness Awareness Week.

just for fun

What I Love About Fall


School is now in full swing. The air is starting to feel a bit crisper. Here in NC you have started to dress in layers for the chilly mornings, hot afternoons, and cool evenings. When I left the house this morning to take Abby to school, even though it was way too early, I had a little pep in my step as I could feel autumn drawing nearer in the air.

Fall is my absolute favorite time of the year! The weather is cooler. Leaves start changing. There is pumpkin spice something around every corner. And there is a little holiday known as my birthday. I’m not too thrilled about officially moving into my mid-30s but I still love a good celebration!

To kick off the season on a high note, I wanted to share what I love about fall:

1. What is your favorite fall fashion/clothing item? I’m going to cheat and share two favorites: My Rockstar skinny jeans from Old Navy and my black moto jacket. I am having to rebuild my wardrobe as I have shrunk out of just about everything I was able to wear last fall so thank goodness for Poshmark and being able to shop secondhand. Old Navy Rockstar skinnies are seriously the most comfortable jeans on the planet and a moto jacket goes with everything and adds the bit of edge i love to add to any outfit.

2. How does your beauty routine change in the fall? It is all about the vampy lip! I am obsessed with the Ultra Matte Liquid Lipstick in Guess by ColourPop Cosmetics.

3. What is your favorite fall food? I love tomato soup with grilled cheese when the weather starts to turn cooler! Homemade chili would be a close second!

4. What is your favorite fall beverage? Hot apple cider! YUM!

5. What upcoming fall movie are you most looking forward to? The Peanuts Movie! I’m such a kid at heart!

6. What is your favorite new album? I know Skillet is working on a new album which makes me way beyond excited but I’m not sure of the release date!

7. What is your favorite TV show (which can include new premieres!)? NCIS of course which premiered tonight! I need to rewatch it again to be sure I didn’t miss anything!

8. What is your favorite outdoor activity during the fall? I love taking Chloe on easy hikes at the greenway, watching Abby ride her bike with her friends in the neighborhood while taking in the evening breeze, and taking weekend trips to the zoo! Since its not as hot, the animals are more active and it is a more enjoyable experience all the way around!

9. What is your favorite way to preserve summer as we head into the colder seasons? We look back at all of our snapshots from our summer adventures but we all love this time of year so there is so much to look forward to!

10. What traditions or family activities do you and yours do during fall? We always go to our local corn maze and pick out a pumpkin from the pumpkin patch! This year I also want to visit an apple orchard so we can pick apples and make a fresh, homemade apple pie!


Now that you know some of the things that I love about fall, what are some of your favorite things about fall? Leave your answers in the comments or if you do a blog post using the same question, leave a link so I can come visit!