Allodynia

Allodynia – That’s the technical term for feeling your skin 24/7. My skin is so sensitive that a gentle breeze can trigger a pain response on a bad day. Pants are torture, but skirts are worse. I hate leggings because they make me constantly aware of my skin. Which I assure you is not nearly as much fun as it sounds.

A quick anatomy lesson for the integumentary system (hair, nails, skin and sweat glands) your skin is by far the largest organ you have. It’s not just a meat sack holding your body together. There are billions of nerve receptors in your skin. They are designed to bypass the rational mind and are hardwired into your subconscious or reflexive mind. This is why you move your hand away from the flame before you even realize you’re burning. There are about 2 billion or so nerve endings in the outermost layer of skin. More in the under layers, the hair, sweat glands etc. They are there to alert us to potential danger and to alert the brain that we have been damaged.

You have different nerve receptors for different things. Some are ticklish. Some detect change in Temperature. Some itch. And some say OUCH!

Now imagine if something happened and suddenly all of the receptors start telling your brain OUCH. Meaning that breeze causes pain, the brush of your hair across your skin causes pain, warmth/cold causes pain. Sound vibrations caues pain. Clearly this is a problem with the wiring. But they don’t know what it’s caused by.

When my skin hurts I don’t want delicate gentle touch, I want specific, firm and with intention touch. I want clear and obvious sensation (think stingy and thuddy rather than feathery or ticklish)

Author – Unknown.

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I do get this myself. Mine is thankfully on & off . Like the OP, I prefer firm contact, but I also need to know it’s coming. It’s easier to just have no contact at all tbh.

It’s weird. If I’m sensitive with this, a hair that falls out of my head & lazily makes its way down my back or my arm can be excruciating at worst, mildly painful at best.

I even have a “Don’t Touch Koolaid” Necker for Cubs. Meaning they know they can not touch me when I’m wearing it. They don’t understand why – just that it hurts me alot if they do on those days. Fortunately, I don’t have to wear it often

Allodynia

Allodynia is a type of pain that many of us with Fibromyalgia have. It is basically a extreme sensitively to touch. People with this can have extraordinary pain from simple every day contact like combing one’s hair.

My Allodynia

I don’t know if my situation is unique, but mine seems come and go, and it can vary depending on the amount of pressure.

Some days I’m golden. I have zero issues. Other days, I will shed a hair from my head and when it falls on to my unsuspecting arm I am in excruciating pain. Other times I with just come in light contact with something and the pain is agonizing, but I can have firm contact like a hug and there’s nothing. I don’t get it.

There appears to be no rhyme or reason as to which circumstances will crop up on any given day. Fortunately, it does not change from one to another on the fly. I’m more likely to switch from one to another on different days. So on one day I’m good, but the next day it hurts to brush my hair or even my teeth (yes, it can impact my gums).

I have found that the most noticable instigator of this type of pain is from a hair touching my skin, either stopping, caught on hard or leg hair, or feeling it as the single hair strand bounces on my skin as it falls. Because of this, I tend to brush or comb my hair fairly frequently. My sister was surprised when I mentioned that I will brush my hair several times a day, vs the once or twice she brushes her hair. I also tend to pull my hair back or up to prevent loose hairs from falling.

The other way it frequently hurts is a casual touch. A light hand on the shoulder. Someone brushing by me. My mom no longer touches me because of the number of times I have flinched unless I have asked her to, like rubbing A535 into my back. My sister is the same. My neices & nephew tend to forget. My intimate relationships don’t seem to be impacted as much cuz those touches tend to be more firm.

The hardest part is incidental touches by others who don’t know me as well. I am a leader in scouting. I’ve had youth come and touch my shoulder from behind so I’m in prepared, or a hug from a child who forgets they aren’t allowed to touch without consent.

There are also times when I know to expect contact. A perfect example is another scouting situation. As the ‘head’ leader (usually called Akela, but the Scouts named me Koolaid before I went to Cubs) I do opening & closing. This includes the challenge. I yell “Pack! .. Pack Pack Pack!” and the youth come running to challenge me, as I am the head wolf (hence wolf cubs). They come to a tight circle around me, but every meeting someone will run too far or have a hand out or jostle with another youth & contact is made Because I know it’s likely coming from somewhere, I can prepare for it and it’s less of an issue.

Lately, it doesn’t seem to be as much of an issue as it has been in the past. I don’t know why. Is it the improvement in my overall health? Is it my weight-loss? Is it than my activity level has changed? Is it that my pain levels had dropped? Is it a change in medications? I have no clue.

if you experience this condition, how does it impact you?

The Princess & the Pea

For those not familiar with the story. See Below. It was also made into a movie in ’02.

^{The princess slept on a pile of twenty mattresses and twenty feather beds and still did not sleep well due to the small pee in the middle of the bed under all those mattresses .}

I am convinced that the princess in this story had some sort of chronic illness.. From the description, she could have any of the following: Ehlers-Danlos Syndrome, Fibromyalgia, CFS/ME, Rheumatoid or Osteo- Arthritis, Allodynia, Complex Regional Pain Syndrome, Sensory Processing Disorder (In conjunction with or due these other conditions.

The American National Library of Medicine says “Possibly the princess in Hans Christian Andersen’s ‘The Princess and the Pea’ suffered from FMS since chronic sleep disturbances are typical in FMS. These sleep disturbances have been attributed to a dysfunction in the systems regulating sleep and wakefulness resulting in loss of deep sleep. ” That can be said about the other conditions I mentioned as well..

If you do a search of “The Princess and the Pea, chronic illness”, you will get a long list of articles believing that the lass in the story wasn’t just ‘sensitive’, but had a chronic illness. While all of the conditions I mentioned above, it seems Fibromyalgia to be the most common conspiracy theory..

What do you think? Does she have a chronic illness? Which one?

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The Story – The Princess and the Pea

^{A pile of 40 mattresses with a pra under the bottom one}

Once upon a time, there was a prince who lived in a wealthy kingdom. When he had reached the proper age, his mother, the queen, decided the time was right for her son to find a bride.

The prince, however was determined not to marry just any girl, but that his future wife should be a “real” princess. So he traveled the world and searched in all the kingdoms and met with all the princesses, but he still wasn’t satisfied.

One evening there brewed a terrible storm, with thunder, lightning, and rain. It was really frightful! In the midst of it all came a knock at the town gate. The old king went to open it.Who should be standing outside but a young lass, and what a sight she was in all that rain and wind. Water streamed from her hair down her clothes into her shoes, and ran out in the heals.

She claimed to be a real Princess. Although no one believed her, she was invited in to stay for the night.

The queen decided to test the young girl’s claim of nobility – without saying a word, the queen went to the bedroom stripped back the bedclothes, and put a single pea in the bottom of the bed. The queen then took 20 mattresses and stacked them on top of the pea and took 20 eiderdown feather beds and piled them on the mattresses. Up on top of all these the princess was to spend the night.

The next morning when the girl woke up, the queen asked how she slept. “Oh very poorly!” she said. “I scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, and now I am black and blue all over my body. It’s horrible!”“

They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.So the prince took her to be his wife, for now he was sure that he had found a real princess

My Hair Hurts

I owe an apology to many of the ladies is some of the various fibro Facebook groups I’ve been it. There have been many conversations over the years about Fibromites whose *hair* hurts. Turns out it’s a form of allodynia

I always assumed that they were talking about head pain but not the sensation that it actually does feel like your hair actually hurts – not your scalp. You see, over the years I have had a bunch of concussions.. Three of those concussion inflame on occassion, so I will have swelling & tender points on my scalp. I can even tell which incident it was.. One of my bike accidents? Falling on the ice at school? Accidentally bashing my head against a wall?

Well, nope, that is not the feeling it turns out. Those repetitive reactions are *not* what these women mean. I found that out today.

I was brushing my hair like I normally do, and decided to wash my hair. When I do this because my hair is so thick I tend to flip my hair over and back brush to get the hair to relax so I can more effectively clean it. Well my head felt weird bending over and putting my hair down.. I started your back brush from the base of my skull and I was good until I got about 4 in down then – Oh! My! God!! My hair was in agony.. Not my scalp – My Hair!

So I stopped brushing my hair stood up flipping my hair back & again – Oh My God! More excruciating pain. I had to have a shower because I was stinky from heat sweat, I still had to do something with my hair. I put it in a quick loose bun that was clipped in not elasticized in.. I found that was the least painful option for hopping into the shower..

I can still brush my hair normally and it doesn’t bother me but if I could try to do anything else for my hair right now, I’m f**ked..

So I owe these ladies an apology cuz I was thinking their issue was not so bad cuz my version wasn’t too bad. I should know better.. Cuz my Fibro is not her Fibro & her Fibro is not my Fibro.

A little research yeilded this information:

Apparently the number one culprit for this kind of pain is not washing your hair.. The oils that your scalp produces naturally accumulate around your hair shaft, and if not cleaned can promote an overgrowth of yeast on the scalp. It is apparently the region around each hair, pore, or follicle that is becoming inflamed, which translates to sensitivity that can feel like your hair hurts.

Wearing your hair in the same style, like a high ponytail, cornrows, buns, or braids for days at a time, can also contribute to more pain.

How can we help it? It all depends on what hair type you’re starting off with. Finer hair can’t go multiple days, because it produces more oil, Yet curly or gray hair can, as it produces less. As a rule of thumb, people with oily hair should shampoo every day or every other day. Dry or coarser hair should do every three to four days.

I know we tend to be exhausted an washing one’s hair is an exhausting chore, but consider that it might be worth it.

Could You Handle it? Constant Pain?

Yes, I live in pain every minute of every single day. It is the Nature of the Beast..

If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.

Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.

The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.

^{I have Fibromyalgia. I live in sin every day. Yes, Every Single Day}

So, do I wake up in pain? Yes.

Do I walk my dog in pain? Yes.

Do I do groceries in pain? Yes.

Do I write my blog posts in pain? Of course.

Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.

Do I socialize in pain? Yup, otherwise I’d be a hermit.

Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.

Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.

Don’t I take meds to help with the pain? Yes, but he important word there is *help*.

Now think about this.

Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??

Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.

How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.

What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?

Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?

Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.

So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.

Could you handle it?