Allodynia: My Clothes Hurt (updated post + video) 

One of the most viewed posts on my blog is the allodynia post I did over two years ago now. This makes me incredibly sad as it’s obvious many other people are suffering from allodynia too. Since that post a lot has happened with my body pain-wise so I thought it was about time I did an update. I have now had allodynia for many years and have been thinking of a few suggestions I can share with other sufferers to hopefully make life just a little bit less painful.

What is allodynia?

Allodynia is pain produced by a non-painful stimulus (something that shouldn’t normally cause you pain such as wind or light touch). When you hurt yourself, whether it be from a burn on a hot oven or if you fall over and scrape your knee, your brain receives a pain signal. These painful sensations are interpreted by our nocireceptors (specialised nerves where pain signals originate). In patients with allodynia, those receptors are being triggered incorrectly – they react to stimuli that for most people are harmless and shouldn’t cause a pain response. What does it feel like? Like having really bad sunburn all the time. And when clothes, sheets, or people touch you it feels like sand paper rubbing across your sunburn. Even other people’s hair touching you feels sore.

There are 3 types of allodynia…

Tactile Allodynia (pain caused by something touching your skin i.e. when brushing your hair, shaving or showering or even being in a light gust of wind), Dynamic Mechanical Allodynia (pain caused by movement across the skin such as stroking or massage) and Thermal Allodynia (mild heat or cold temperatures causing pain).

When I last posted I was suffering from all three types of allodynia from the waist down. That alone was incredibly difficult to manage. I have since travelled to America and back, and had many months of intensive Lyme disease treatment. This caused an almighty flare which has not receded and I now have all three types all over my body. The severity has also increased.

I made a video for Lyme Disease Awareness Month in May this year highlighting some of the ways allodynia now affects my life…

My allodynia is so severe that I spend 95% of every day on my bed, or my day bed downstairs. I cannot lie on any sofa (due to the fact sofas are not completely flat and have ridges), I can’t sit for more than ten minutes maximum due to the pressure causing pain,  I am going out less and less (about once a month at the moment) due to unpredictbable weather conditions, the sitting involved and the motion involved in travelling by car or in my wheelchair. My neuropathic pain and allodynia mean I am in excruciating pain all of the time – it feels like my body is on fire :(

My tips to make everyday living with allodynia a little easier:

1. A shower head specially designed for sensitive skin

I have the Mira Switch Four Spray Showerhead. It has four different spray modes to choose from, including a soft pressure spray that means instead of big water droplets like a regular shower, it sprays a very fine mist. It’s much gentler than a regular shower head. I wouldn’t be without it anymore!!

gentle shower head

2. Bamboo flannels

I haven’t been able to wash my face as much as I’d like to since the allodynia spread there. Flannels are typically rough and rough fabrics are incredibly painful. I recently purchased some bamboo flannels from amazon and they’re wonderful – very soft! Yey for having a clean face again :) I now need to try and get hold of a bamboo towel!

bamboo flannels

3. High thread count sheets

The pressure and feel of bedsheets on my skin is very painful. I cannot tolerate any bobbles (which often happens to polyester/cotton sheets) and they have to be as soft as possible. This 400 thread count fitted sheet has been great for me – it’s both soft and silky.

soft sheets

4. Soft stretchy loose clothing

The softest fabric I have found is made with a combination of modal and cotton. It’s light, stretchy and very soft. H&M do a great selection of clothes made with this fabric. Their stitching is also not scratchy like some other shops (namely Zara – their stitching in t-shirts is so rough – ouch!).

soft t-shirt

5. Soft loose bras

As you can imagine if you have such severe sensitivity, you don’t want a tight bra strap going around your chest. I have been wearing non-wired, soft bras like this one from Ted Baker. Primark also do a good selection and are just as good. The bras with silky straps are the softest. I am a size 8/10 in clothes but buy a size 14 in these bras to ensure the strap isn’t too tight.

soft braI really hope you find some of these tips useful. If you have any tips that have helped you please comment below so others can see them too.

If I can help someone else who suffers from this dreadful symptom I will be very happy! Remember you’re not alone. 

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13 Comments

  1. Julia August 25, 2017 / 10:12 pm

    Hi, just to let you know that i experience allodynia waist down, too, but i manage it with a low fructose diet. When i eat fruit high in pectin/fructans, it worsens. Thought i let you know 😉
    Xxx

    • Sophia September 1, 2017 / 11:14 am

      Sorry to hear that Julia. I am on a very low sugar diet and also doing low fodmap at the moment but it’s not helped unfortunately :( but that’s for the suggestion!

  2. Paige Brasington August 30, 2017 / 10:38 pm

    I weirdly experience allodynia like symptoms whenever I get sick. If I get a fever then it is almost guaranteed to happen. I don’t really know why. I feel fortunate to only deal with it occasionally. It is so miserable. Laying in bed not moving hurts because even the sheets and blankets are painful. When I am suffering from it I often find myself wishing I could just be naked and float so nothing would be touching me. Thank you for sharing your words of wisdom on this topic. I can’t imagine what I would do if the pain was constant for me like yours is. Please know you are in my thoughts. I appreciate your candor in sharing your life and story here.

    • Sophia September 1, 2017 / 11:13 am

      Hi Paige! It sure is miserable. That’s so strange you only get it when you’re ill. I guess everything becomes a lot more sensitive when you’re poorly.
      Yes bed time is a tricky one – I have only the softest sheets and only manage to have them on my top half. Winter isn’t fun to say the least.
      Haha I’m always saying to my boyfriend that I’d love to live in a world without gravity so I could float! And that would be super fun too.
      Thank you for taking the time to comment lovely and for thinking of me! Lots of love xx

  3. June September 14, 2017 / 9:52 am

    Thanks for sharing your experience with this. I am wondering would this condition also cause people to have an overreactive pain response? I have been treating Lyme and sometimes when I get a minor injury the amount of pain I get associated with it is way out of proportion to the injury. I’ve often wondered if it’s just me or is it the Lyme.

    • Sophia September 18, 2017 / 10:46 am

      Hi June,

      No problem at all. I hope you found the post useful.
      Yes definitely. Have a look into hyperalgesia – that’s the name for what you’re experiencing.
      Lyme causes all sorts of neuropathic symptoms.
      Hope that helps.

  4. arlene September 17, 2017 / 5:26 pm

    Thank you for sharing this. I will pass your info on to family/friends who don’t understand the acute pain related to a nervous system dysregulated by Lyme.

    We are a family of 3 who have had 6 known cases of Lyme (and multiple co-infections), mostly acquired in the northeastern U.S.; our daughter (now 24) got her second case in Greece while doing a work-study abroad.
    We three have had almost every symptom associated with Lyme and co-infections, so my heart goes out to you. I personally understand what it’s like to be only able to tolerate a few articles of clothing.

    I am glad you have loving and kind people around you.
    Thank you for using your precious energy to share both your story and helpful hints with others.
    As my best friend always says to me, “Never give up!”

    • Sophia September 18, 2017 / 10:41 am

      No problem Arlene. I hope it’s a useful resource to show your friends/family to give them a little insight into life with allodynia.

      Gosh that’s a lot of Lyme cases! So sorry to hear that. How are you all doing at the moment? I hope you’re doing well.

      Oh yes I am so very lucky to have such an incredible support system :)
      Don’t worry, giving up isn’t an option! Too much to live for!!
      X

  5. Noel Campbell September 18, 2017 / 7:55 am

    Have you tried medical ozone and / or bio resonance?

    • Sophia September 18, 2017 / 10:38 am

      No I haven’t. My doctor recommended ozone therapy a while ago but changed his mind. Plus I’m not sure it’s available in the uk?

  6. Revy September 20, 2017 / 3:58 pm

    Thank you for posting this article! I spent the first several years of my illness wrapped in soft blankets because I couldn’t stand other fabrics touching my skin. 10 yrs later I still need to surround myself in softness. It’s not as intense as it was before my Lyme treatment but the pain is still there! I have fuzzies all over my house from all the super soft blankets, pillows, socks & clothing! I ‘ve described it as feeling like there are teeny shards of glass stuck in my skin all over large areas of my body. For me the worst is my extremeties.
    Thx for putting a name to what I feel!

    • Sophia September 20, 2017 / 4:35 pm

      Hi Revy! Thank you for your comment. No problem at all. I am so glad you finally have a name for what you’ve been suffering with for so long. Sorry you’re still suffering but I am glad it has eased a little since treatment. I hope the same happens with me once my treatment starts to work.
      That is a very good description.
      Take care and I hope it goes away completely for you soon! Gentle hug

  7. Mary October 21, 2017 / 8:09 pm

    Hi Sophia,

    Finally, someone who describes a exactly what I have been going through for the last 8 years! Although I do not have Lyme disease, I do suffer from tactile and dynamic mechanical Allodynia. I believe mine to be caused by spinal disc problems I have suffered from for over 20 years. It may be possible that I have a neuromuscular issue as well. My daughter has a muscular Dystrophy via physical diagnosis. We are not sure which type, and can’t afford to look into it further. I have some very mild, yet similar issues, which leaves us speculating. Anyway, I shared your info on Allydonia, so others can hopefully understand what I go through every day.
    Mary

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