Does anyone have allodynia? I would like to know how you deal with it.
In other words, pain for no reason. YES. It is amazingly annoying. Iāve cut way back on sugar, working towards totally cutting it out of my diet. (You have to make everything from scratch when you cut out sugar!!!) and Iāve noticed what I call my sensitivity level has dropped considerably. Not making any claims, this is just what Iāve been noticing in me.
Thank you for responding Kronicchick . . Iām not really a sugar person and the little that I do use can be eliminated easily.
My biggest problem right now is finding bed sheets that are comfortable. I was using 100% pima cotton sateen that I bought either in Macyās or Bed, Bath and Beyond. Problem is they both discontinued them.
Do you have a problem with comfortable bed sheets? If so, what do you use and where do you buy them? I would appreciate any help you can provide. Iām at a low point with this allodynia. Very depressing. My clothes hurt and now my sheets are worn and need to buy new but canāt find them. Iāve tried so many stores already.
Thanx again !!
Debarybabs
I do have a problem with sheets. I canāt seem to find any that I can feel comfortable with. Microfiber is of the devil. What happened? The whole industry changed. I recently bought some that are labeled percale, in hopes of getting sheets like I remember from childhood. They say 100% cotton but they feel like brushed plastic. Are they coating everything with some kind of chemical? When I can afford it, I think Iām going to try to find some organic cotton or bamboo sheets. Iām losing way too much sleep because of sheets.
I just bought a set of 100% pima cotton sateen from Target. I havenāt opened the package yet. Iām afraid theyāre going to be the same as all the others I bought and were like sleeping on sandpaper.
Iāll let you know if and when I open the package and give them a try.
Fingers crossed !!
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Well now youāve got ModSupport all worked up as well. I know exactly what you are looking for, Kronicchick. Iāve been looking for those sheets for years. The sateen ones from Target, yup, debarybabs, had those. They are very soft, if you like a soft sheet. I want a crisp and cool sheet. The sateen wears out fairly quickly too, and some can pill. But they are still much better than a blend. Bamboo is soft, but comfortable and pretty strong.
And as for microfibre ā¦ OMG I stayed in a high end hotel once, and at bed time I discovered that those luxurious sheets were ā¦ EEEEEEKKKKKK! Hardly slept. And you know what? There was a card on the dresser telling you how you could order some for home. As if!
OK, this is going off-topic. Weād better look out or someone from ModSupport is going to ban us. Oh wait ā¦ I am ModSupport. LOL
Message me as soon as you find the holy grail of sheets.
Seenie
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Hi ModSupport,
Regarding the sateen sheets from Target, have you had experience with them? I know theyāre strong . . 800 thread . . they feel soft in the package. Though, many of the sheets that feel soft and satiny feel that way until you wash them. Then they feel like sandpaper. I wonder if they put a coating of something on them to be able to pass them off as sateen !!
This is getting me crazy . . Iām almost out of my comfortable sheets and I donāt know what to do.
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Iāve had lots of sateen sheets, and I canāt remember whether Iāve had the ones from Target. Iāve given up on them because of the pilling and the short life.
My go-to sheets (when Iām desperate) are the 100% percale sheets from Lands End or LLBean. They arenāt perfect, but they are pretty good. Last year I bought a set that was very cheap, but had good reviews from Overstock. They are pretty good, but when I ordered them, I was prepared to send them straight to Goodwill after the first wash.
We sheet snobs are not alone. Hereās a blog. And a quick search revealed this. Must check those out.
Seenie
ive got allodynia and all clothes and fabric against my skin irritates me.I have flannel sheets andi just changed them for cotton sheets which are awesome.I have a super soft blanket thats chanel and was a gift from someone i know .Its the most softest blanket ive ever owned and is a godsend.I have yet to buy clothes that are comfy and soft and presentable.But one cant stay in pjs 24/7 although i do try ha.A clothes shopping trip is in order!
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Hi Mandy,
Do you know what kind of cotton the sheets are that you just bought? Also, can you tell me where you purchased them? Weāve been trying to find 100% pima cotton sateen finish for a while now. They feel soft and silky when you buy them, but after washing theyāre as rough as sandpaper on my skin.
My skin is very sensitive on my legs from allodynia. I canāt wear pajamas because even the softest cotton hurts.
I was thinking of buying the flannel sheets. Now I wonder if theyāre too rough on the skin.
Thank you for your input. If you can tell me where you purchased the cotton sheets and the brand and type of cotton they are I would appreciate it.
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Iāve noticed my allodynia pain. Seems worse when Iāve eaten sugar, caffeine, or a lot of salt. As for sheets, when my expensive high count Egyptian cotton sheets began feeling like splinters in my skin, I tried the bamboo sheetsā¦they were much better than others but the twill still bothered me so I finally made the major investment in
Cariloha brand bamboo with the sateen, which is the most expensive, but is the softest. Now I donāt want to use my other sheets. I read loads of reviews first on all bamboo, and this one had the best ratings.
Thank you Megan54. Iāll look into the sheets you mentioned. People have mentioned bamboo, but until I lie down on them with my bare legs and the fabric doesnāt irritate my skin, I canāt make a judgment.
One more thing Megan, yes, sugar does have an effect on the allodynia. I donāt drink caffeine and Iām careful with the salt intake.
Iām also gluten free. That makes a difference also. Thanks again for responding !!
Megan . . what kind of clothing do you wear? And where do you purchase them? I have found that cotton is the only fabric that is comfortable on my skin. Polyester is out . . it pinches as do many other fabrics. I find it very difficult to by 100% cotton clothing. Itās suggested I wear dresses and skirts so thereās no rubbing on my legs which are the most sensitive part of my body right now.
Any suggestions are appreciated . . . 
Ahi Deb, I have found that how somethings feels to my skin matters more than the fabric, so I stopped worrying about the fabric. If it is soft I get it. My all cotton sweatshirts and pants start to pill After awhile so I do t count on them anymore. Iāve found some of my favorite clothes at Dollar General and Macyās. A department store has a better selection of course. The brand of sheets I mentioned also carries clothes and pajamas that look great but they are very pricey. The sheets were over $200 but I spend over half my day between them so decided it was worth it. Clothes I generally have on for only a few hours away from home, and then I change into my super soft, inexpensive, baggy Walmart pjs when Iām home. One long sleep shirt and and a slinky pair of black pj bottoms look like outside wear so I feel I can wear those out and no one knows they are actually pjs. I also bought a long gown at Macyās that looks like a sundress. I avoid pants with a wide or tight waistband obviously. I buy pj bottoms too big if I have to to get them baggy enough around my hips and thighs, then stitch it safety pin the waist to hold them up. Iāve also got some micro fiber leggings at the grocery storeā¦got biggest size they had, and they are incredibly comfortable with a big blouseā¦canāt tell you names because the labels are long gone! I also have polyester blends tops that are incredibly soft that I got at dept store. I only have a few places I have energy to drive to but have been thankful Iāve found enough variety once I just focused on the feel of the fabric first and foremost. I have one nightshirt I found at Macyās that seemed soft but the seems itch a bit so I wear it inside out. I have bought e erything but clothes on Amazon.com, but if you can find things on there they will take returns with no question and no shipping charges as long as you say for reason of return ānot as describedā. I ordered 5 different folding chairs from there at the same time re entry so I could try them out and returned all but the one I like. ā¦I have POTS so was looking for something small I could carry with me to a store or anywhere lines in case of emergency. Iāve never gotten any flack from them. But clothes and socks are pretty hard subjects. I found a bra that is comfy so ordered 5 or those, and canāt deal with any undies as they bind me where my nerve pain is worst. Good luck!
I think those great bamboo sheets can only be bought from their websiteā¦but I bet they would take them back if you didnāt like them. The twill is less, but when I could feel the rough fabric of the twill from another brand, I didnāt want to take a chance on twill again. If is debatable if the little bit softer was worth the a lot more expensive, but I wanted atleast one set that was amazing. Bamboo feels heavier, for such a thin, slinky sheet, so I find I often donāt need any other lightweight plush blanket over me. They say bamboo is cool in summer and warm in winter. Iāve been through both seasons now and I donāt understand stand how, but it does seem true!
Some companies might send you samples of their sheets before you buy them online. I ran across some of them before when I was looking for body pillows. Wouldnāt hurt to ask?
Hi All - new to the site. Was in bicycle accident 24 years ago (Iām in my late 50ās now). Damaged/crushed/desiccated S1-S4, L3,4,5 T5,6 and C6,7,8 ā¦ I have viral neuropathies, C6 nerve-pinch symptoms in my hands and both mechanical and tactile allodynia.
The mechanical manifests in my upper body; I wear a scarf all the time to keep cool/moving air off my neck and I wear long-sleeves for the same reason - my legs can tolerate both A/C and moving air, so, I am able to wear shorts.
The tactile manifests if someone touches me, ESPECIALLY if I donāt see them coming (they approach from behind and touch me for example). This has improved some over the years thanks to body-work which includes osteopathic treatment.
What happens when the allodynia is ātriggeredā is that my body receives/reacts to an āelectrical shockā which looks like Iām having a seizure ā¦ these āshocksā can range from mild to very, very intense ā¦ since my spine is damaged at L5/S1, rotating my hips is difficult and so, being intimate can result in a lot of frustration.
Ok; thatās probably TMI. Is anyone experiencing either/both versions of allodynia? How do you manage your discomfort? I have topical creams, Voltaren (sp) and Lidocaine patches to control the acute and chronic pain of my injury, but, I havenāt found a way to āturn offā the allodynia, either with creams, patches or medications.
Thoughts and comments, please!
There is a support group on fb for people with Allodynia. Allodynia associated with clothes and or touch pain. Please join if you have clothes pain and or touch pain.
Thanks.
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I have it and my skins are crawling like bugs , itās burning , itās chill, itās itches, itās shocking , itās painful, itās annoying, itās scary , so first choice was off with all the brand name tags on every thing i wears, all seams have to be inside out or with lining fabric only.
I love soft knit rayon fabrics. On cold/hot sweaty night I stitch 3 soft beach towels togerther to use them as blanket. Dried cold night with soft micro plush blanket . And I use lidocaine cream as my new body lotion. Sometime ice if Iām suddenly burning so badly. Canāt get a break which this symptom. Always something.