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!!
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!
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.
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!).
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.
I 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.