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?

INVISIBLE-ILLNESS-AWARENESS-WEEK-2015

 

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 illnessfaith

Dear Skillet – Thank You

Dear Skillet - Thank You

Dear Skillet,

I know you more than likely not see this but just in case you happen to find yourselves in this corner of the inter webs, I wanted to say thank you. You have no idea how much your music has carried me through some of my darkest moments. Your music keeps me dancing, your lyrics keep me fighting, and your message keeps my heart focused on the reality that I am never alone. As dark as it feels at times, I have a Savior and Hero that has created me with a plan and a purpose that surpasses all understanding.

I have struggled with chronic illness for over ten years. I was a panhead before my first diagnosis but as time passed and the diagnoses started piling up, it has taken my appreciation for your music to a deeper level. It would be nearly impossible to pick out favorites but I thought I would share how three songs in particular that have carried me when I needed it most.

One of my favorite passages in Scripture is Luke 8:43-48. So many times I feel like that woman going doctor to doctor looking for help. When you spend years hearing “we know you are sick but there is nothing we can do to treat it,” it is easy to become discouraged and wonder if life is worth living if every day is spent in pain. It can be easy to allow your faith to be swallowed up in your grief. I think this is why Come My Way is so close to my heart. I have learned that sometimes healing doesn’t come in the form we expect or want. While I still yearn for physical healing and believe that God has the power to do so, I have learned that true healing comes from the inside out. God has healed my heart and has overcome my life with a power that goes beyond anything physical.

In this journey of healing, I have had to redefine my understand my relationship and my understand of who God is. I grew up in a church where you didn’t ask questions. The hand you got dealt was the one you got dealt and if you are sick, then God must have wanted you to be sick. I could not understand how that made sense. It just did not align with what I knew in my heart. So as time passed and the diagnoses started to pile up and my husband and I were knee-deep in our battle with infertility, I had to wrestle. For the first time, I began asking questions and sought to find out for myself what faith meant on a deeply personal level.

I wanted to understand not only what I believe but why I believed it. I learned many of the answers I was looking for but I also learned that there would be times where there were no answers. I learned to put my trust and hope into something much bigger. When I didn’t understand the why’s of life, I could understand the Who. I learned that I would have times that I wouldn’t know why things were happening or what lied ahead but I could trust in the One who writes my days. It is that trust that would carry me. Even when the path seemed dark, God would put reminders in my path to remind me that I am not alone. Whispers In The Dark was one of those reminders. I cannot put into words how much this song has meant to me. God has used the words to help me understand that God still has a plan for my life even when I cannot see it just yet. Every day I must make a choice. I can allow my illness to make me bitter of I can choose to honor Him in spite of it. He can give purpose to my pain.

The last year has been the hardest. Treatments that once worked have failed. Despite second, third, and fourth opinions, the conclusion is the same. My daughter is old enough to recognize that I am sick and asks why the doctors can’t make me feel better. My husband has had to take on the role of caregiver much too soon. Even though God has brought me on a beautiful journey of a deeper understanding of who He is and what faith really means, I wish I could say that the struggle was over. I wish I could say that I never had moments of wondering if things would be better off without me.

I really wish I could but that would be a lie.

Thankfully, my journey doesn’t end here. I serve a God much bigger than anything the Enemy tries to dish out. It is not my strength that gets me through each day but His. Christ came to break my chains and set my heart free. Not Gonna Die has served as a reminder to keep fighting. It would be easy to give up but God does not always call us on a journey that is easy. He does, however, promise that we do not have to go on this journey alone. Not only is He with me but He has placed so many amazing people in my life to fight alongside of me. God has surrounded me with reminders of His love and His power and God has opened so many doors that have allowed me to share my testimony of faith and triumph with so many people that I would not have otherwise been able to share it with had I not been diagnosed with my illnesses. Through the roller coaster of infertility and adoption, I have been able to have a deeper understanding of what it means to be adopted through Christ. By watching my daughter’s birthmother love her and be selfless enough to place her in our arms has given me such a deeper understanding of God’s grace and love.

While life has been full of trials, God has blessed me so deeply and I know I would not have the relationship I have with Him without those challenges. I would not have compassion without the suffering and while I would never have signed up for this life, I would not change anything because of what God has allowed me to be a part of through it.

Again, I just want to say thank you. Thank you for your service. Thank you for your message. Thank you for your music. God has used you in an amazing way to change my life. To save my life. I could not be more grateful.

P.S. We definitely have a little Pinhead in our household. Her favorite song is “Monster” and she wanted to be “Skillet Girl” (her reference to Jen) for Halloween so thank you for sharing music that not only teaches the message but that we can also rock for Jesus!

Dear Skillet: Thank You

chronic illness

The Week-Long Migraine & Hating The Word “Normal”

I have struggled with migraines for years. Initially we were able to pinpoint that they were primarily triggered by hormonal shifts so I was able to take preventative medication during the times my migraines would primarily peak. After my hysterectomy, I definitely experienced a decrease in migraines because obviously there were no longer any hormonal shifts to trigger them.

Unfortunately, in the last year or so, my migraines have returned with a vengeance. My doctor has checked my hormone levels just to be certain there wasn’t anything wacky going on (such as the possibility of a piece of ovary being left behind from surgery) but everything came back normal.

The last day I was in VA with Abby visiting my family, I was hit with a massive migraine. I could hardly lift my head because of the pounding and extreme nausea. I had absolutely no idea how I was going to survive the drive back to NC the next day. Thankfully I wasn’t the one driving but being in the car for 5 hours was definitely not a pleasant experience.

Usually my migraines pass within a day or two but this one hung out for a week. I wanted to go to the ER but the last two times I visited the ER (once for a migraine, once for extreme abdominal pain), I ended up with the same doctor who refused to treat because I was a pain clinic patient. Pretty sad scenario, huh? I had an appointment with my rheumatologist and my pain specialist that week so I tried to just stick it out.

In addition to the increase in migraines, I have had a major increase in joint point and fibromyalgia flares were now accompanied by low-grade fevers and butterfly rashes. My rheumatologist decided to do blood work to check for lupus (and other similar autoimmune illnesses).

While we waited for test results, I had my appointment with my pain specialist and when I told him about my week-long migraine, he was able to give me a shot to help knock it down. I honestly think that syringe must have been filled with liquid fire because it was honestly one of the most painful shots I think I have ever had. I had to bite my tongue in order to keep from blurting out some unladylike comments. Thankfully, the pain was worth it as my migraine finally started to fade.

A few days later, my lab results came in: all normal. I am really beginning to hate that word. The list of symptoms and their impact on daily life is growing but answers are few and far between. I have spent most of 2014 bouncing between my doctors searching for answers and it seems that every test, scan, or procedure comes up inconclusive. We know that there is scar tissue causing abdominal/pelvic pain and GI complications but we don’t have the cause of the increase in migraines, joint pain, fevers, rashes, dizziness, or heart rate issues.

And they wonder why I have anxiety.

After every test, I feel like I hold my breath hoping that maybe this time, we will find the answer. Maybe this blood work will reveal the missing piece of the puzzle. Maybe we will find a definitive diagnosis.

Its pretty sad when you pray for abnormal results. A new diagnosis could mean the possibility of new treatments which could mean the possibility of relief.

Normal results means we have nothing and everything stays the same.

I spent some time pondering the word “normal” and the name of this blog. When I started blogging, my “new normal” was living with chronic illness. Maybe now that is my “old normal” and my “new normal” includes more excitement and fulfillment than I am allowing myself experience because I have to let go of the old in order to embrace the new.

Maybe its time that I embrace my inner Elsa and let it go.