Lyme & Allodynia
Approx. 4.5 min by Sophia Galpin
Allodynia is pain from a non-painful stimulation of the skin, such as light touch. When the skin is sensitized, wearing a shirt or taking a shower can be excruciatingly painful. It is the result of a mixed-up processing of sensory signals within the central nervous system, and can be caused by undiagnosed Lyme disease. Treatment is more likely to be effective if Lyme disease is diagnosed early. To find out more please visit: www.wakeuptolyme.com.
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)
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 traveled 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.
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. 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 (wash cloths)
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! Yay for having a clean face again! 🙂 I now need 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.
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.
If I can help someone else who suffers from this dreadful symptom I will be very happy! Remember you’re not alone.
Sophia Galpin lives in the UK, and writes Spoonie Sofia, a food, health, and lifestyle blog. http://spooniesophia.com
This is a perfect example of the type of pain Lyme/MSIDS patients may suffer from. As Dr. Bransfield wrote in his letter to NY senators, it is quite common for undiagnosed Lyme/MSIDS patients to be prescribed opioids for pain relief. For his letter: https://madisonarealymesupportgroup.com/2017/09/16/lyme-and-the-opioid-crisis-dr-bransfield/ However, the period of sobriety altered their tolerance to the drug and that same dose is now a lethal dose. They are discovered deceased and everyone is surprised, puzzled and grief stricken. The point I would like to make to the Committee is that inadequately diagnosed and inadequately treated Lyme/Tick-Borne Diseases as well as inadequately treated mental illnesses are contributing to the opioid epidemic. (More links within this one on the variety of psychiatric issues with Lyme/MSIDS)