Guest Blog: Allodynia and Fibromyalgia written by Pamela Jessen

Once upon a time, there was a magical room with a magical tub. This magical tub could be filled with water and special solutions that would make it fill with bubbles and beautiful scents. You could lay in the tub and soak for as long as you wanted, even until the water started to cool off. It was delicious and decadent and altogether delightful. You were a person with an achy body because of something called Fibromyalgia, and the magical tub felt good.

Then one day, you realized you were having trouble getting in and out of the magical tub, and it wasn’t fun anymore, so you decided to start doing something called “showering”. Showering was still fun because there were lots of different body gels and bath washes you could use with pretty scents like Peach Mango and Vanilla Blackberry and they all lathered up into rich soapy bubbles. It wasn’t as good as a bath, but it was still okay.

After a while though, you noticed that the shower was starting to hurt you. The water felt painful on your skin and even though you had an adjustable showerhead, even the rainfall setting made you hurt. It was like an electrical shock from static, zinging off of your body in so many places that you couldn’t wait to get out of the shower. Now you were having trouble even washing your hair. You would do it in the bathroom sink so you could avoid the shower, but it hurt holding your arms above my head to scrub, so most of the time, you would have to lean on your elbows. You realized that nothing about personal grooming was any fun anymore.

Then you started to notice that even getting dressed was a chore. Your clothing actually started to hurt your body when you put it on. Favourite jeans scratched you, beloved sweatshirts itched, and labels had to be removed because they irritated your tender skin. You find yourself relying on the same 3 or 4 pieces of clothing over and over again because everything else hurts. That’s right...your clothing actually hurts. 

Do you see yourself at all in this scenario? Have you ever found yourself going from bathing to showering to struggling with personal grooming because it's so hard when the pain from Fibromyalgia kicks in? I've been known to use the baby wipes for a quick clean when I'm in too much pain for a real shower. Fibromyalgia robs us of even the most basic tasks. It seems unfair that everything to do with grooming and dressing is difficult now.

It's because of something called Allodynia

Allodynia is a rare type of pain, generally, on the skin, that's caused by something that wouldn't normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well.

Other conditions associated with allodynia include neuropathypostherpetic neuralgia (shingles), and migraines. Outside of these conditions, allodynia is a rare symptom.

Types of Allodynia

Allodynia comes in three different and distinct forms. It's possible for you to have one, two, or all three kinds.

The different forms are:

1. Tactile allodynia: pain caused by touch. This can include clothing lying against the skin (especially the tighter parts of clothing, such as waistbands, bra straps or the elastic part of socks,) a hug, or someone touching you lightly on the arm.
2. Mechanical allodynia: pain caused by movement across the skin. This can be a towel as you dry yourself off, bed sheets brush against you, or even the air from a fan blowing moving over your skin.
3. Thermal (temperature-related) allodynia: pain caused by heat or cold that is not extreme enough to cause damage to your tissues. Your hands and feet may burn if they get chilled, or getting too hot may make them ache. (However, if your hands and feet turn blue when they're cold, talk to your doctor. This may be a symptom of a different condition called Raynaud's Syndrome, which can lead to tissue damage.)

Causes of Allodynia

Allodynia is believed to be a hypersensitive reaction to things. Research suggests that it may result from something called central sensitization, which is believed to be an underlying mechanism of fibromyalgia, chronic fatigue syndrome, and several other conditions. "Central" indicates the central nervous system and "sensitization" means that it's become extra sensitive.

The pain signals of allodynia come from specialized nerves called nociceptors. The job of nociceptors is to sense information about things like temperature and painful stimuli right from the skin. Most nerves have to send signals to the brain and wait for the brain to send a signal back before they respond. Nociceptors don't have to do that--they react immediately based on what they detect. That's what allows you to pull your hand away from something hot before you get burned, often before you consciously perceive the heat.

When these nerves become sensitized, they start interpreting all kinds of sensation as pain. Again, this is real pain that has just as much of an impact on you as any other source of pain.

Living with Allodynia

Allodynia can make your life difficult. Something as simple as wearing a shirt may become painful, or even agonizing. Many people who have allodynia find that they need to tailor their wardrobes to reduce the impact of this pain, finding very soft clothing such as pure cotton or very light clothing. Tagless items are a must for many people with allodynia

Thermal allodynia can play a role in another one of our symptoms: temperature sensitivity. To manage it, you may need to do things like dressing in layers or moving your workstation away from vents that blast you with hot or cold air if you are still working. You may have to learn how to compensate for both cold and hot conditions.

It's possible for massage therapy to make allodynia worse, so it's important to find a massage therapist who understands your condition and knows how not to aggravate this symptom.
It's also important to note that some people experience only minor symptoms of allodynia, in that only one aspect of the condition may affect them (such as tags touching their skin) but other aspects are fine.

If you have experienced symptoms like this, it's important to see your doctor for treatment. There are things that can help. Most of the common drug treatments for these illnesses can help alleviate allodynia along with other types of pain. These include:

● pregabalin
● gabapentin
● Tricyclic antidepressants such as amitriptyline.

A lot of people have said they also get some relief with topical painkillers, such as lidocaine, BioFreeze, Tiger Balm and Aspercreme.

You don't have to give up the bath or the shower without a fight. 
See your doctor and take back the bubbles!


Thank you so very much, Pamela, for this blog, 
I really enjoyed reading it and I know many of my readers will feel the same. 

About the writer: 

Pamela Jessen lives in Langford, BC, just outside of Victoria. She is happily married to her amazing husband Ray and they are proud parents of 2 grown kids and three wonderful grandsons. She was formerly employed as an Administrative Specialist and is also a Certified Event Planner. With her career behind her and now being on Long Term Disability, she is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness.

In addition to blogging, Pamela is an active volunteer with the Patient Volunteer Network. Outside of PVN, she has also done volunteer work for Island Health as a Patient Advisor, was on the Advisory Committee for Opioid Guidelines in Canada, and recently volunteered with the Downtown Victoria Business Association's Busker Festival

If you would like to read more by Pamela then give her a follow here:

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Love and gentle hugs

Ness xx

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  1. This is so accurate. For all the clothes I have I only wear a few and won't part with them until they fall to bits. The worst part though is not being able to hug my daughter or husband. Just their body heat near me causes pain. I've tried all the drugs but not found anything yet. Ice can reduce it for a couple of minutes but that's all.

  2. This is so well written. It's hard to explain to people that it feels like every hair follicle has a needle in it, that sheets not from a specific line from a specific brand feel like sandpaper on my skin. It's like my whole body is under attack 24/7. My muscles feel like they're seizing up, my joints feel like they need to be oiled, I flinch if a hug isn't very gentle (there are also 4 'don't touch' spots on my back that my loved ones know about). I feel like my body is foreign to me .


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