Pain Awareness: How I Defeated The Fear Of Touching My Body and Making Pain Worse

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Two Decades of Writing. Sharing Helps Me Out

Pain Awareness: How I Defeated The Fear Of Touching My Body and Making Pain Worse

If you are a chronic pain patient, you likely know the fear of touching your body and making pain worse. If you don’t live with pain, perhaps my 2025 entry for pain awareness month will give you something to think about.

This month I’m writing about the fear of touching my own body and making my pain worse. Touching certain parts of my body has always resulted in more pain for me. I’ve suffered from allodynia for well over a decade.

Imagine my surprise to pop this search term into search engines and learn that the only info being offered on this topic is focused on psychological pain!

In other words, there is no information about patients who are experiencing actual pain in the limbs that they are touching. It’s all chalked up to psychological pain!

I could show you photos of what my legs look like after I touched them. It’s real. It’s definitely not in my head. The rippling muscle spasms and fishhook sensations in my legs are visible. I can see my muscles moving and twitching under my skin. I know my fascia is tight and messed up and causing massive issues.

A woman with long dark hair is standing confidently with her hand on her hip. She is wearing a coral top and white skirt. She is staring confidently into the camera.

2025 has been a brutal year for amped pain.

There is no end to the way that chronic pain disrupts my life. I’ve suffered a lot this month, but I try to write a new article for Pain Awareness Month every year. I have participated in this awareness campaign for over a decade.

Each year, pain saps more of my strength, drives me to the edge, and hammers me with depression. I’ve experienced non stop pain high impact, widespread pain for months this year.

I came out of remission in 2021.

2025 has been a year filled with pain that has been quite different to what I’ve experienced since coming out of remission.

How I Defeated The Fear Of Touching My Body and Making Pain Worse

My pain has been out of control now for nine agonizing months. There don’t seem to be any treatments that help my leg pain.

Inflammatory arthritis leg pain is one type of pain that I cross swords with all the time. But I’m also aware that arthritis is one of several pain culprits behind my daily pain attacks which worsen significantly later in the afternoon and evening.

Fibromyalgia leg pain is also crippling in many ways. You can’t imagine how many types of pain I experience with fibromyalgia. From paresthesia to allodynia, fibromyalgia continues to find new ways to torture me day in and day out.

Last year my pain started changing. I started noticing massive lumps under my skin during extensive allergic reactions to anti TNF treatments.

It also feels like my muscles have changed. I attribute this to many things:

lack of movement despite my very best efforts to hold onto my daily step count
loss of muscle tone with menopause
unstable disease activity
too many immunosuppressants
stagnant lymph fluid in my legs and arms
my neuropathy has gotten much worse

Without a doubt, my trigger for what I’m experiencing now is international travel

We got back to Taiwan five weeks ago. International travel is unspeakably hard on my body. I did two massive international flights (14-16.5 hours on a place) twice in 30 days to see my family.

Going to Canada in July took two days of travel but I had some strength behind me as I knew rest was the utmost priority for prepping for my travels. Coming back to Taiwan it took three days. It beat the hell out of my already fragile body as I was not recoverd from my flight to Canada.

Even though I shelled out five thousand Canadian on a business class ticket again to give my body as much support as possible, it didn’t do much. That said, I didn’t have to be carried off my flights like other times when I’ve flown economy. There is no doubt in my mind I’d be worse if I had flown economy.

My flights have resulted in debilitating leg pain that has not let up since our return. I’m in agony every day.

I’m past the five week mark from our return to Taiwan from Canada. My pain started escalating shortly after my flights.

It’s clear to me that my APS and vascular issues have gotten worse since my disaster flight in 2023.

My limbs are filled with fluid that is stagnant and the backs of my legs especially are beyond tender. Even having my cats move onto my lap to nap is painful.

It’s so bad, thoughts of amputation almost seem normal! I’m desperate for relief.

However, I am trying to remain hopeful with some routines that I’ve established at home. My treatments have not come close to relieving the pain I’m experiencing in my legs right now.

When I touched my legs in early September, my pain sky rocketed.

My first week back in Taiwan I started trying to do very light lymphatic drainage. I tried gently palpitating the backs of my knees for thirty seconds to see if I could get the fluid moving.

It resulted in searing and debilitating pain.

The next day is when I realized I was scared of touching my body and making my pain worse. I started searching through my medical notes to see if I could find any clues to what was happening.

Being unable to tolerate anyone or anything touching me for over a decade reminded me that the only person who might be able to make small changes is me.

I started following board certified lymphatic system doctors online to see if they might tips.

My only hope is that I’m creating small positives for myself right now.

I’ve poured through my medical records to find clues to what is happening.

First, I uncovered an old and unexplored diagnosis from 2015 that could be an answer to the lumps and bumps in my muscles. I have Myofascial Pain Syndrome on my charts. Back then it mostly affected my back and one of the specialists I was seeing had me try a number of meds to no avail. Klonopin, Lyrica, and Cymbakta were all utterly useless.

I keep coming back to this diagnosis and lymphatic problems because it’s checking every box on my list.

Since I know the treatments I’ve tried in the past don’t work, I’ve literally taken things into my own hands this fall.

I still fear touching my body and making my pain worse, but the positive is I can now touch my legs and that’s huge!

I’ll take this tiny victory on this last day of pain awareness month to share with you.

Here are five things I’ve tried to alleviate some of the pain I’m experiencing in my legs.

Photos of the author of My Several Worlds with a red light therapy belt and a LED wand featured on a black background with red and white text. The text on the banner says Red Light Therapy for pain and inflammation by MySeveralWorlds.com

1. Red lightly therapy every day. I’m doing 20 minutes on the front and backs of my legs every morning with my red light belt. You can read more about red light therapy for pain and inflammation here. I’ve used this technique extensively on my face and on my limbs from time to time. This is the first time I’ve committed to doing it every day for five weeks.

A pink blog banner for MySeveralWorlds.com with an image of hot pink leg compression sleeves and several graphics of blue compression socks. The text on the image says How Do Compression Socks help with pain and blood clots. Compression socks work to improve circulation and reduce swelling and edema.

2. I amped up compression for pain. Switching up compression has helped. I ordered compression arm sleeves and decided to take lower leg compression off because it was aggravating my leg pain. I was unsure of this decision until a doctor mentioned too much compression is bad. Do your arms or your legs, not both. Read about compression therapy for pain and inflammation here.

3. I started at home lymphatic drainage by focusing on the main seven termini in my body. This involves gently palpating the lymph nodes in my chest, jaw, under my armpits, in my stomach and behind my legs every day to get lymph moving. When I started I could barely touch my legs. After five weeks, I can touch my legs and the back of my knees, but these areas are still tender.

4. I’m drying brushing every day to help the painful knots and painful lumps under my skin on my arms and legs. Dry brushing also helps to move lymph along.

5. At home leg massage: I’ve started massaging my legs twice a week with sweet almond oil. I’m following a cancer rehab specialist who has taught me how to move lymph by massaging up towards my heart and around the back of my legs.

So, that’s how I defeated the fear of touching my body and making pain worse.

I wonder what October will bring? I hope it’s some pain relief!

A microphone against a purple background with the words Let's Talk About Pain with Carrie Kellenberger at MySeveralWorlds.com

Further Resource Reading

I’ve been writing about chronic pain for close to 17 years. I’ve learned a lot about my journey with pain. Feel free to have a look at other articles I’ve written by clicking on the image above or using the links below. Each article I write is carefully cited and includes research about life with pain.