Allodynia: My Clothes Hurt

*I have a more up to date post here.*

I have been in a chronic pain flare up since the beginning of January – the longest and worst flare to date! The pain I have experienced in this flare has probably been the worst so far. One of the most problematic symptoms of my condition is allodynia and I want to talk about it in this post to educate non sufferers.

Allodynia is an intense neuropathic pain due to a stimulus that does not usually provoke pain. 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 neuropathic pain, those receptors are being triggered incorrectly – they react to stimuli that for most people are harmless and shouldn’t cause a pain response.

There are 3 types of allodynia; Tactile Allodynia (pain caused by something touching your skin i.e. when brushing your hair, shaving or showering), 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). I suffer from all three, especially tactile allodynia.

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I have allodynia in both of my legs, hips and back. I have had to completely change how I dress to in order to decrease my discomfort. I haven’t been able to wear jeans or tailored trousers for years because as soon as I put on clothing that puts any form of pressure on my legs my pain soars. I tend to stick to very loose light-weight pyjama bottoms, loose maxi dresses or 100% cotton soft leggings. Even socks cause discomfort at the moment where the elasticated band around the top touches my skin. I also cannot tolerate having anything resting on my legs such as a laptop, a book, etc. The heat too has been a big problem for me, I have to have lukewarm/cold showers and extremely thin and light summer duvets. It’s funny though as I am able to have hot water bottles on my hips but the minute I step into a hot shower my legs go crazy?!

I think one of the most frustrating things about my allodynia is that I haven’t yet found anything that helps. There are times when even the cool breeze against my skin feels like a thousand needles or the vibration of my wheelchair as it moves causes a horrible burning sensation. A lot of the time at the moment even the pressure of sitting or laying down causes so much pain where my limbs make contact with anything. Sounds crazy doesn’t it?!

Do you suffer from allodynia? Have you found anything that helps?

25 Comments

  1. Donna // Fibro Geek May 7, 2015 / 5:59 pm

    Oh Sophia, I feel for you. Allodynia is horrible. I remember I had a flare up a couple of years ago and then got the flu. I have never been in so much pain, no pain killer would touch it and I wanted to curl up, go to sleep and not wake up until it was over. Even my soft pyjamas hurt me. Day-to-day it’s my arms that are my sore spots, even the lightest touch used to be very sore. I have found that my allodynia has reduced through the herbal protocol I am following (Vital Plan Restore Program), as has my pain over all. Sorry to hear you have been in such a long flare of pain :( I hope that you find a way to get some relief. Hugs.

    • spooniesophia May 11, 2015 / 1:14 pm

      Gosh that sounds awful Donna, thank goodness you’ve not experienced anything like that since! I will definitely look up that protocol, thank you!
      Thanks, me too!
      Hope you’re having a good week xxx

  2. Berta Karaim May 7, 2015 / 9:57 pm

    Arghhh! This sounds far worse than anything I’ve ever experienced I think! Reading your posts makes me realise just how much I take for granted, and I always realise that there something more to be grateful for! Thank you for sharing and I truly hope that you’ll feel better soon!

    • spooniesophia May 11, 2015 / 1:15 pm

      No problem at all Berta! Thank you for always taking the time to comment on my posts :)
      Have a great week! xx

  3. Lorna May 8, 2015 / 10:56 am

    I’m aware of allodynia from my experience working with people with autism, but I didn’t know you suffered from it Soph!

    I admire you so much for sharing your experiences so candidly, to increase awareness in people without chronic illness & to share experiences with people that are going through it, so that they don’t feel so alone!

    I wish there had been online support networks when I had CFS/ME, I literally was just on my own and no-one understood! I think making use of blogs/social media is such a positive thing and you do it so well! You write so openly and your food photography is just….. beyond words!!

    Lots of love xxxx

    Lorna | naturally-bee.blogspot.co.uk |

    • spooniesophia May 11, 2015 / 1:18 pm

      I didn’t realise people with autism experienced allodynia. I knew of them experiencing sound sensitivity but not allodynia, thats very interesting!
      That must have been awful, no wonder you felt to alone and misunderstood <3
      I dont know what i'd do without the online spoonie community!
      Thanks for being so lovely!!

      Hugs and love xxxx

  4. devrivelazquez May 10, 2015 / 5:19 pm

    sending you some spoonie love. I can’t imagine how allodynia feels. sending positive vibes your way– hope your flare-up ends soon!

    • spooniesophia May 11, 2015 / 1:18 pm

      Thank you! Sending it right back to you too. xx

  5. Polina May 12, 2015 / 8:11 pm

    Haven’t seen this post before, but finally catching up. Sophia, send you the most light and genlte hugs and love. So awful to read about your struggles, I can’t even imagine how it’s tough for you. You always find away how to write things and cause not pity in readers but wish to support and gratitude for you sharing it. From time to time I feel simptoms which are close to tactil allydonia, though definitely not as horrible as yours. Wish my words can make a difference, and though they are just words, my heart is full of love to you.

  6. Claire May 19, 2015 / 2:29 pm

    Wow – I never knew it was allodynia!! I don’t have it now, but when I was in high school there was a few days in a row where my clothes really hurt me in the afternoon – I remember feeling every fiber against my body so clearly, and when I moved the scratchy, painful sensation was so intense! Reading your words, I am just ever more grateful that it was only a brief encounter, I couldn’t imagine having to deal with it all the time – keep being brave!

  7. sandytoesraven May 23, 2015 / 2:51 am

    Hi. I have just started to read your blog. I’m crying and yet feel slightly relieved at the same time. I’ve been living with postherpetic neuralgia for the past 2 1/2years after having shingles. It affects my spine and left arm. Over time my list of symptoms has started to increase and the fatigue is becoming overwhelming. Like most I’m sure, I’m having trouble getting Drs to take me seriously and get a diagnosis. I don’t mean to sound ‘dramatic’ but reading your blog feels a little like reading my own diary….
    Thank you thank you thank you for writing so openly and honestly. I can’t wait to try your recipes as I feel a overhaul of my diet certainly is needed. I know I’m on a long frustrating journey to find some answers, but reading blogs like yours full of great information is such a help to me.
    Thanks so much.
    Dee…

    • Sophia August 4, 2016 / 11:00 am

      Hi lovely, Sorry I haven’t replied sooner, I didn’t realise I had missed some comments.
      I don’t often speak to people with PHN so it’s nice to know I’m not alone but I am terribly sorry you’re suffering too <3
      It’s great to hear that you found comfort in reading my blog, that makes sharing my experience all the more worth it.
      Not a problem at all! I am grateful to you for reading it :)
      I hope you have made some progress since you wrote this comment?
      Hugs,
      Sophia x

  8. Chelsea January 26, 2016 / 1:57 pm

    I have all 3 kinds but especially the dynamic mechanical. It sounds almost paradoxical, but compression garments can sometimes be my best friend. They’re tight enough that they don’t move and rub against me. It’s lime a mini hug. Haha

  9. Lindsay July 20, 2016 / 3:52 am

    I have all 3 kinds too and I can sympathise with Chelsea because compression or tighter fitting clothing tends to help more. I too have been unable to wear jeans for over a year after the development of CRPS. Thank you for writing about your experience.

  10. Kathy ford July 21, 2016 / 4:54 pm

    I have Allodynia just below my ribs. Can’t stand a breeze blowing over it, showers have felt like bullets and have not worn a bra for years. 2 years ago it got so bad I started using capcation cream but on hot days it felt like I was burning alive, I spoke to my pain team and they asked if I would like to try a quinteza patch which is applied in hospital, it’s a chilli based patch and send the nerves into over drive, which in turn calms the Allodynia down. It has been amazing, not only is my Allodynia 10 fold better than before it has also reduced muscle spasms.

    • Sophia August 4, 2016 / 10:56 am

      Hi Kathy,

      That sounds dreadful. I feel your pain <3 Wow so glad you have found something that helps :) That’s great news! I will definitely look into it. The only trouble is, is that my pain is so widespread that I’d need so many patches lol. I haven’t gotten on with capcation cream in the past but maybe this will be different!
      Thanks lovely! xx

  11. Caity-Ann July 28, 2016 / 10:42 pm

    Hi Sophia,

    I realize this post is old, but I am hoping you can help me. I currently suffer from CRPS in my left leg. I have all three types of allodynia going on throughout my entire leg, but primarily my hip/thigh – the inner part of my thigh where inseams of pants typically rest. I haven’t worn pants in over a year now (aside from super soft brand new fleece PJ Pants). The pain is so severe that I had to quit my job and now work part time from home. I am writing wondering if you have any BRAND SPECIFIC recommendations for loose pants and skirts that you wore / wear during such flare-ups? I’m pretty desperate as everything I buy I can only wash it once before the fabric is no longer soft enough for me to wear. I have found that rayon based garmets seem to last more than one wash, but only sometimes. Any suggestions or advice would be so very much appreciated. Thank you in advance!

    Caity-Ann

    • Sophia August 4, 2016 / 10:54 am

      Hello Caity-Ann,

      I am really sorry to hear about your CRPS. I wouldn’t wish chronic pain on my worst enemy! You sound very similar to me in terms of your hypersensitivity. My allodynia has actually gotten worse since I wrote this post. I now cannot even wear the 100% cotton leggings I used to wear and loose maxi dresses aren’t great now as there is just too much material touching my legs. I am now living in loose shorts or culottes or midi loose dresses.
      I’m not sure I can recommend any brands specifically, but I like 100% cotton bottoms or I too like rayon. Have you tried lyocell? It’s really soft.
      How are you with polyester? I wear polyester culottes from Zara and they are so loose and don’t cling. How frustrating for you that you have to keep buying things are they aren’t suitable after a wash.
      Sorry I haven’t been able to help much and I really hope things improve for you soon!

      Sophia xxx

  12. deb September 29, 2016 / 10:19 am

    Hello,Do you have a reccomendation?
    i suffer from the wind and fabric touch allodynia too. I am trying to find thermal clothing that will work. There is cold, windy, and dry air around me. Humidity is great for me. The heat is great. But the cold causes extreme motor function problems as well as allodynia. The breeze does the allodynia the most. I can only wear cotton tights in the winter but it is not enough. The fleeze is too tight, like compression but not as tight and causes immense pain. I am trying to fimd thermal underwear or clothing that I can tolerate. Something that isnt compressing but it can be tight on the body. It would be better if it is not loose fitting. Not too tight though. Any suggestions?

  13. Susana January 5, 2017 / 11:03 pm

    Hi Sophia.
    I live with Allodynia since 1998. I have tried probably everything there is to try and had no luck. I tried the capsaicin cream (which makes the skin really really hot), I tried (for 6 times) the qutenza patch that Kathy Ford mentioned, I tried many different medications, I tried botulinum toxin injections and even had a spinal cord stimulator implanted for 3 years.
    What I found that helps a bit with clothes and water in the shower is using an adhesive like this http://www.3m.com/3M/en_US/company-us/all-3m-products/~/3M-Tegaderm-Transparent-Film-Dressing?N=5002385+8707795+8707798+8710820+8711017+8711097+8711738+8717839+3293321979&rt=rud . Of course that you can’t use it on such a large area but I chose to use on the places that move the most (the knees, for example) or where the clothes hurt the most (the place where the elasticated band of the socks touch the skin, for example). I only change them once a week so that i don’t have to think about the pain of removal. After a week, the borders get loose and start causing more pain so I remove them and put new ones.

    Keep strong!
    Love, Susana

    • Sophia September 12, 2017 / 11:37 am

      Hi Susana, I am sorry for the delayed reply. Gosh you really have tried eveything! Even the spinal
      Cord simulator :( I wish I could take the pain away for you.
      Thy is such a good idea about the adhesives! Thank you so much for sharing!
      Keep going pain warrior <3

  14. Carla July 26, 2017 / 3:49 am

    Hi there!

    My allodynia has improved significantly once I started injecting myself with Vitamin B-1 as part of my multiple sclerosis protocol (http://www.mymultiplesclerosis.gr). Another thing that helps a lot is taking niacin every day. My MS protocol suggests taking it twice weekly (I know it thins the blood.) However, I take it daily for a natural high cholesterol treatment. Niacin works wonders. I highly doubt I would be able to walk as good as I do without it.

    • Sophia September 12, 2017 / 11:31 am

      Hi lovely! Thank you for sharing what has helped you. I’ve only ever heard of b12 injections so will have a look at b1. I’m unfortunately allergic to niacin but I hope others can find relief from this too! Gentle hugs xx

  15. thewritingmommy andora henson August 20, 2017 / 4:35 pm

    I understand as I too suffer from those symptoms. The itching associated with this is the WORST !!! Wearing almost any fabric other than a rayon is torture, and sometimes that is too soft and i have to wear snug but not tight cotton because the movement of the fabric is horrible. I have found that focusing more on comfort than fashion is the only way to manage, and this is harder for me as I have gained 30 pounds since this all started 20 years ago. Gentle hugs ~ Andora

    • Sophia September 12, 2017 / 11:29 am

      So sorry to hear you’re suffering too :( yes I get that itching too and it’s a nightmare when you’re skin is so sensitive! I totally agre and only shop for comfort now which makes me sad as I’m obsessed with fashion! I really hope things improve for you soon Andora! Sending gentle hugs xxx

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