My Hair Hurts: Dealing With Tactile Allodynia & Fibromyalgia

My Hair Hurts: Dealing With Tactile Allodynia

I mentioned in one of my recent posts about my fibromyalgia flare that seems to have been hanging around since my most recent discharge from the hospital. A lot of the abdominal pain, and even pelvic pain, has largely subsided recently but the constant joint pressure and hypersensitivity have made it difficult to enjoy the new-found freedom from some of my other issues.

I think explaining joint pain to others is pretty routine. Most people are at least familiar with arthritis so drawing a pain parallel between the two seems to end with an understanding nod of acknowledgment from the other party. To say that your entire body feels bruised? That your sheets feel like sandpaper? Or eve crazier – your hair hurts? That’s a different story.

The medical term for this sensitivity to touch is tactile allodynia and in my personal experience, it has become one of my most frustrating symptoms of fibromyalgia. Early in my diagnosis, it only surfaced sparingly yet as time as passed on, it has become a more recent visitor. It has been hanging out since my discharge which would make this my longest flare with this symptom specifically.

I think one of the most frustrating things about it is that I have found little that helps the pain and irritation go away. There are times where the breeze of the fan against my skin feels like a thousand needles. Sometimes the pressure of sitting or laying down feels like my skin is covered in bruises. Other times it seems that my skin is crawling with ants.

The pain and frustration have reduced me to a heap of tears on more than one occasion in the last three weeks. Heat and keeping my skin covered have been the only two things that have seemed to help but given the heat and humidity that accompany summer in the south its not very fun. I have often wondered if  could bath in Lidocaine gel in order to ease the symptoms.

But You Don't Look Sick

Let’s get this conversation started – do you deal with tactile allodynia (with or without the presence of fibromyaliga)? Find support from others in the comments section & be sure to add yours as well!


P.S. Be sure to stop by the follow up post Allodynia: The Pain No One Sees to check out five treatment options that may be able to provide you some relief from your hypersensitivity.

I love hearing from you!

  1. Have you ever tried a Lidocaine injection? It’s done in a drop format over a couple hours and basically delivers lidocaine all over your body from the inside. Quite helpful.

      • I cannot figure out how to leave my own comment on here, but I have the exact same symptom and had no idea anyone else had it! I thought I was crazy, like having delusions and in the beginning phase of sctzo-affective disprder/ What a relief to know I am not alone. I have no clue why I have it, but I am beging worked up for autoimmune as we speak because I tested positive for basic autoimmune markers(sed rate, ana, etc.). Thank you for sharing your experience.

        • I too have it where my hair hurts, hard to explain but my head and hair hurt!! My hubby try’s to rub it but I can’t take it, any clues? Yes I do have fibro, and just being diagnosed sucks. I’m not sure what to expect except this all over pain and muscle and joint pain, plus I forget everything! Help

          • What types of treatments have you tried up to this point? When my allodynia is at its worst, one of the things that helps the most is taking the hottest shower I can stand. The effects are only temporary of course as you and I know we cannot stand in a hot shower indefinitely as much as we would like. There are some medications that may be able to help. I had a lot of luck with Savella before I became immune (I was actually able to run again!). I am tempted to give it another whirl now that some time has passed. I have also had some luck with an OTC homeopathic cream called FibroAway but I am not sure how well it will work on the top of your head. Satin pillowcases may help. I would definitely be completely open and honest with your rheumatologist and make sure you have a doctor that truly listens and allows you to be an active participant in your care. I have learned that my allodynia flares the most when I am really stressed or exhausted. If you ever need to chat or talk more, please feel free to leave me another comment or drop me an email at anewkindofnormal at gmail dot com.

    • wow i thought i was the only one that had that feeling .i have lupus and fibromyalgia and just this summer the clothing touching my skin would hurt i didn’t know there a name for it thank you for sharing

      • Hello I have struggled with this vulvadynia and fibromyalgia for over a decade no medications have helped. Just touching the external labia majora and minor a I have pain. It’s like having rug burn tight clothes make it worse. Along with this I have chronic pain off and on that moves around to different body parts. If you have any advice I’ve been to over 30 doctors and finally gave up on doctors. I may try the oxylate diet.

        • I finally have a rheumatologist that finally understand allodynia and vulvadynia which means everything. After spending three weeks in the hospital a few years ago after my obstruction, all he had to do was to look at me and know how badly I was flaring. My flares tend to get worse the more stressed or the more exhausted I am (which is easier said than done). Sleep is hard to come by in my word which makes managing flares a very delicate balance. Where are you located? I understand not being comfortable not sharing that information in a comment section but if you would like to shoot me an email, I would love to try to help. I apologize for the delay in responding to your comment. I have been out of commission since Christmas but have decided enough is enough and its time to get on with it. I hope you are feeling better. If I can be of any help, please do not hesitate to contact me! Love & gentle hugs, Jamee

        • I as well have it and I understand completely if you don’t want to go this route but the ONLY thing I have found to work for me are pain medications. It is the only thing that makes me able to even put clothes on in the morning. Unfortunately starting a physical dependence to a drug is better than not working or wanting to live with my senses and pain

          • I see a pain management specialist monthly for my chronic pain. It was definitely a step that I wasn’t excited to make but it was necessary in order to have any quality of life and be able to spend time with my family. For some reason it doesn’t help with my allodynia pain but it does make other pain much more manageable.

  2. Jamee
    I feel your pain. I’ve had SLE for 20 yrs & finally got some relief. I went to a pain mgt Dr who prescribed Methadone 5 mg 3 x day. He said it’s safer than taking anti-inflammatories. I also have Lidocaine patches.
    for joint flare ups. Lyrica sometimes work for fibromyalgia or a mild anti depressant. Heat also helps me. I don’t do well in humidity or heat. This So Ca summer is making my joints hurt. Hope this helps..

    • I didn’t tolerate Lyrica well at all. It made me very twitchy (my poor husband got beat up every night in my sleep! LOL). I’m going to check with my pain specialist about some other treatment options for flare ups like these!

  3. I use lidocaine patches to help when the allodynia gets bad. If I cut up a patch & place it on my skin in random spots (under my clothes) it seems to “break up the surface” of the pain and does help some. They are prescription only. I also use Icey Hot. The roll-on version is always in my purse!

    • I have a lidocaine gel my gyn gave me for vulvodynia but didn’t know there were patches! I will definitely as my pain specialist about these at my next visit!

  4. I am with you on this one, Jamee, but not to the extent you’ve been feeling. My hubby has heard me say too often that my hair hurts, and that’s usually when I’m in migraine mode. As for the skin issues, last night the feeling of ants crawling all over my back about drove me nuts! I don’t have any solutions for these in my life because one of my FMS sensitivity symptoms includes meds, mostly Rx ones. I’ll be praying for you!


  5. I too have difficulties with allodynia. Mine is quite severe and I have it over my entire right side. I find tight breathable, stretch clothing (4 way stretch not just 2 way) very helpful. Much of my clothing comes from outdoor shops. Heavy cotton quilts and blankets instead of down quilts helped with allodynia in the legs at night.

    The two classes of medication that seem to be most helpful are the tricyclic antidepressants and various seizure medications such as Lyrica. Lyrica has helped me but has caused significant memory problems which is not at all unusual for that medicine. recently, my doc added a low dose of a tricyclic (nortriptyline) which has also helped. Medical marijuana has also helped me and others with allodynia.

    best of luck managing it..

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  7. I have never been diagnozed with Fibro,I just figured it was normal even though people look at me like I’m crazy when I say the skin on my head hurts pr the skin on my back,or shoulder or whereever it’s hurting that day. I have never even mentioned it to my dr.I do have Neuphathy is it connected?

    • Yep, can be connected to neuropathy. I’m a type 1 diabetic and have had severe allodynia on my chest for 8 years. Have to be bare chested all the time I’m in the house. This condition has genuinely brought me close to suicide as it has also caused me terrible back ache due to trying to ‘cover’ my chest pain while in clothing. Terrible condition, we need a real nerve pain specific drug. Not just anti depressant/seizure meds.

      • Hi I’ve just been diagnosed with allodynia and I have it all over my body. It’s awful. I had vulvodynia a few years back and was on ami for it and eventually it went away. Now it feels like I have it all over my body. This is why they have come to the allodynia diagnosis. I can’t wear clothes sitting for too long hurts me slightest touch is unbearable. I only have to knock my self slightly and I mark so bad and hurt I get pin pricking sensations too and spark type feelings In my toes wrist, face and arms. I get the creepy crawly feeling and some times I itch. I am on gabapentin and I use some Emla cream (lidocaine) on the areas that are so bad so I get some relief. Is there any other techniques to help with the pain. Prior to this I was suffering with vestibular migraines but since getting allodynia it just stopped. Any comments would be appreciated thanks Amanda x

        • Sometimes I find taking a really hot shower helps! Like as hot as I can tolerate! It seems to knock the oversensitivity down at least for a little while! I will also use my heated throw! When I got out of the hospital for the last time last summer I had a huge flare and the allodynia was in overdrive! I was completely covered head to toe under a heated blanket but with a fan running so I didn’t melt! Hope this helps!


        • I understand all too well what allodynia is. As I’m typing this, my skin is hurting and is sensitive all over – my thighs, my back, my upper arms, and the back of my neck. It’s worse than usual. It makes it difficult to sleep when I’m in so much pain. And sometimes I get the feeling that something is crawling under my skin. People who don’t have this just don’t understand.

  8. Hello, I have had muscule and joint pain for at lest 5 yrs. It has only gotting worse and now my leg and thigh hurt to touch. Just when I think it cant get any worse, it does. I’m on ultracet and my Dr says that I will need to go onto the hard stuff next. What does that mean? I’m going to become a junky!!! I started colesterol meds yrs ago and felt that they may have caused all this pain, but I took myself off of themand I still have this pain, My family doesnt understand and i feel so useless,

  9. I have had this for over 12 years and no doctor knew what it was and acted so confused when I brought it up even my rheumatologist! Glad to know there is a name for it. The only people that know what I mean are my kids because they’ve been hearing about it or so long. Thank you for this post. Really helped.

  10. Yes I know your pain well heading into my seventh year of a leg nerve injury. Read good books about both pain and depression as you need to prepare if you have not already had to deal with depression. If you need any names of pain management books just ask. Best of luck

    • Over the past 3 years I have been diagnosed with narcolepsy, fibromyalgia, osteoarthritis, neuropathy, and raynauds. Down to taking gabapentin routinely & ultram and flexeril as needed. Last week my skin started burning/stinging and paining to touch around my L waist and hip then over the next five days went up my L side and back. This lasted about 6 days, I wore tight stretch clothes under clothes and used aspercreme not knowing what else to do. Lips have been tingling and I feel like I’m going crazy. Glad I’m not the only one going through this. It’s rough to say the least.

      • I noticed that you have very similar set of disorders as my wife does. She has what you have plus sjogren’s.

        I’m wondering how things have been for you since you commented?

        My wife takes lyrica, cimbalta, feoracet (sp?), and some other anxiety oriented drugs. It seems like your doctor has taken a different approach. with neurontin and tramadol.

        • I still struggle quite a bit with the allodynia. I ended up having really nasty side effects with neurontin and the tramadol was not effective at all. I couldn’t tolerate Lyrica and Cymbalta made me very depressed. I have not found anything medically that has made a lot of difference. I did write an updated post just a few weeks ago: Allodynia – The Pain No One Sees

  11. Hi . I’ve found the previous posts interesting & can empathise over how distressing & debilitating this condition is . I don’t have fibromyalgia , however I’m awaiting surgery for cervical spine multilevel disc replacement (3levels) and the latest MRI & CAT scans show no nerve compression .
    However , the more my discs continue to degenerate I’m finding increased pressure from clothing , to the extent that I cannot ware anything heavier than 6/7 oz due to extreme pressure/weight sensation . I’m on 90mg of morphine, & 2.4g of gabapentin & 20mg nortriptyline . The latter 2 drugs are for my idiopathic peripheral neuropathy which only affects my feet & ankles , but is extremely painful as it flares up due to stress & low mood , to have that sensation over over parts of your body must be extremely distressing .
    As for myself I’m finding keeping warm during these winter months leading up to surgery extremely problematic . As for going out its virtually impossible unless I’m driven door to door . I was exercising twice a day if only for 150 yrds to help with my spinal disorder up until surgery , now this is not possible , as the last time I did 15 mins exercise in the cold wearing summer clothing my left arm & upper body went numb & I ended up in casualty .
    I would be helpful if anyone else has experienced pressure/weight sensation on their shoulders & how they coped with it .

    • I’m not exactly sure what you mean by the pressure/weight sensation but there are times when I feel like my entire body is bruised and any amount of pressure on my skin is incredibly painful. When I get flares like this the only two things that have proven to be helpful is wearing very soft clothes (even though sometimes the softest cotton feels like sandpaper) and heat. I’ve been known to wrap up in my heated snuggie to ease the flare while running fans in the summer to keep from getting too hot. I hope this helps!

      • Thats the usual response I get from Health Care Professionals , including my own GP who informed me the condition was called Allodynia . I’ve read the other posts & I’ve noticed that quite a few say tight stretch clothes help . Its the opposite in my case , though I agree about soft clothing, as a lose fitting fleece is bearable and warm.
        The only analogy I can give , that remotely reflects the sensation is a tight fitting Pringle thermal top feels like 3 Heavyweight Donkey Jackets , combined with choking sensation round my neck , in fact tolerating near zero temperatures in lightweight summer shirts is preferable . The only normal thing with this condition is the direct correlation to my cervical disc degeneration & the amount of weight I can tolerate on my shoulders .
        I’m being wonder if I have Allodynia as apart from intolerance to clothing , my symptoms are totally different , as I’ve never had the type of pain associated with neuropathy & I’ve experienced most of the sensations I’ve read in the posts , but there in my feet & ankles . I’ll soon find out after I’ve had artificial disc replacement .

  12. This is the fibro symptom that I find most distressing! I certainly understand your pain!

    I’ve completely changed how I dress to in order to decrease my discomfort. I used to wear jeans and t-shirts most of the time, but now ANY elastic around my waist or chest is just too horribly uncomfortable. So bras and underwear are out of the question most of the time. And I also can’t stand any friction against certain areas (especially the side of my hips), so loose pants or dresses don’t work either.

    I finally found that wearing tight-fitting (just right tight, not too tight!) jersey-knit tank dresses work really well for me. I usually wear at least one thigh-length tank as my undergarment, and then layer a maxi/floor-length one over that to keep my girl-parts easily covered up. No need for a bra, even though I’m large-breasted, since the tight fabric keeps everything snuggled in place (just lower than typical), and the multiple layers keep me well covered, modesty-wise.

    I find the compression and soft fabric to be very soothing. It’s like wearing a soft compression bandage over my torso and hips. These clothes have drastically decreased my skin pain. Which in turn has decreased my lower back joint and muscle pain that was being aggravated by the allodynia.

    I layer a longish t-shirt, blouse, or tank-top over the dress(es) to disguise my plump hips and bum (most people assume I wear skirts). It’s actually a very flattering look, even more so than the pants and tops I used to wear. And I can dress the outfit up or down, depending on the fabric of the dress on top, and which shirt, jewelry, shoes, etc., that I coordinate with it. In the winter, I layer up to three long dresses for warmth, top with a long-sleeve shirt, and then wear knee-high, flat-heeled boots.

    It took me a few years to figure out that just the right clothes help reduce my pain to huge a degree, so thought I’d share in case it’s of help to you.

    Wishing you all the best as you learn to manage this! Gentle hugs!!

    • Thank you SO much for your comment! It is so nice to know that someone else understands as there are times where I’ve been looked at like I had four heads when I tried to explain what this felt like. I definitely stick to dresses a lot between the hypersensitivity issues and the massive scars I have on my abdomen from surgeries. The scar from my obstruction surgery is huge and incredibly sensitive so pants with a waistband can be problematic which makes dresses or yoga pants a big part of my wardrobe.

    • Interesting, I have the same chronic back pain that I am 100% sure is simply caused by the stress/physical tension caused by the allodynia in my chest. The hyper sensitivity in the chest means I am tense and wound up (understatement, I’m actually highly depressed and suicidal due to allodynia pain) to the point my back is totally screwed. I am going to try and use compression binding or wraps made from super soft material and tightly wrap around my chest. Thanks for the tips : )

  13. I’m not sure if anyone has tried this, but it has certainly worked for me. I picked up this condition after breaking my leg, and for 4 months it destroyed my life. I couldn’t sleep and even the act of wearing trousers was a nightmare. I was prescribed opiods and a combination of drugs which did nothing but turn me into a zombie.
    Anyway, a quick fix for me – which just allowed me to get through the day (and nights too) – was to buy some really wide surgical tape and put it on the painful areas. The tape still allows your skin to breathe but gives you an extra layer of protection so your nerves aren’t exposed. I also found that shaving the area prior to doing this helps if you plan to remove the stuff (doing this in a bath helps too).
    The result is that I can wear the clothes I want and my skin gets that extra layer of protection it needs. It may not be perfect but it has saved me from going nuts with this condition.

  14. Hi Jamee. I happened to be researching tactile allodynia and came across this thread. I just started experiencing pain in a patch of skin on my leg that felt like a bad bruise or sunburn and is painful upon light touch. I knew I hadn’t injured it in any way. I am now aware that this is a symptom of migraine, fibromyalgia etc and I suffer from chronic migraines, so it makes sense. I’m sorry to hear it is so bad for you and others on here. However, my feelings are that all things, especially chronic pain syndromes come from a mental/emotional root ultimately. The mind body connection is powerful. There is a lot of positive research on the effects of meditation on the mind and body, including alteration of genes and boosting of the immune system. Allodynia results from pain modulation not functioning correctly in the body either after injury or due to stress. I can’t promise any outcome for you, but I think that the mental root of pain disorder involves in some way a lack of self love or not believing in yourself. I encourage you to believe that you can be without your pain. I think through a meditation practice (in addition to other healthy practices like diet and exercise) we can restore a degree of balance in our bodies and can stimulate the release of endogenous opioids (which are the body’s natural pain killers). Believe that you can be without your pain and work toward that. That means taking everything into account that you are doing to your body mentally and physically. If we just pop pills because something is going wrong, it’s never really going to solve it, especially when the roots are so much deeper. That being said, you do what you have to do along the way. Good luck. –Razelle

  15. Hi all. I have been given a spray called Opsite. It is a spray that turns into a layer like a dressing when it dries. I put about 2-3 layers on my allodynia areas (chest) and then clothing is more bearable. For me I get about a 5-10% pain reduction. It’s not great but it is something. Please please if anyone has anything to share about allodynia add more! I’m really struggling to mentally cope with this and am finding my depression is taking me to some very dark places. Clothing is simply not an option without intolerable pain. Tried every drug out there and all types of tight/loose clothing, taping it, everything. Feel like I’m running out of time

  16. Hello everyone, i believe everyone deserves to be treated like a himan being by doctora, but this is not the case, I have been suffering from full body allodynia since 02/2013 scalp to toe, and on my forehead nose chest/ tummy area its burning as hell, on the other parts cant bear clothes and touch too, its soul destroying i agree with Jack! I feel like i cant be my happy self anymore because this illness robbed me of my personality and im so ashamed, of who i become since i have this, I think nobody should think about suicide, but it happens way too often with this condition. Dont know what to do, ive tried cymbalta, zoloft,co-dydramol, tramadol, amitriptiline,Fluoxetine, venlafaxine,Codeine, to no avail., I take gabapentin since last july, and i just come off amitriptyline because wasnt able to take the side effects, i feel hopeless,only able to take gaba and i just can barely move i have fibromyalgia since 2005 im 25 and female what a life…lol hugs for u all best wishes xXx

    • OK. I think after reading these posts it’s fare enough to say doctors don’t know about the condition or how to treat it. I myself have tried absolutely everything I know to deal with cold allodynia. The cold sensation is from the top of my head to the tips of my toes. I’ve done all the research I can on this condition. I’ve even contacted researchers that has donevtesting on this condition. And the answer I got was that no drugs have been created for this condition. It’s considered a symptom and no testing will show why it’s helping. Why our nervous system has recruited these painful receptors. My thoughts are as follows: this condition is beyond stressful – enduring this much pain is inhumane…… But I feel that doing absolutely everything possible to find calm and peace is essential for any type of recover. This monster is emotionally driven. I know because the more depressed I became the more the pain ramped up. Right now I am trying something called Brain State Technology. It’s suppose to help you rebalance the brain. Now it’s very expensive, but I’ve been lucky because the lady treating me can’t bare to see another human in this much pain. And is treating me for free. In saying all this….. This is a very debilitating condition. It’s extremely isolating. I’m going to put my email on this post because I feel it’s time for people like us to get heard. If anyone is interested in contacting me with a positive attitude and a will to fight and be heard please email me. I know this makes most of us want to give up….. But the only choice we have is being strong. I’m willing to Skype with anyone as well in the hopes of finding answers. Glo

      • Sorry I’d also like to add some of the things I have tried that have someone helped or not at all. Cymbalta and Lyrica not at all. Ativan to a certain degree, but the benefits are short term because you need more and more of the benzo for it to calm your nervous system. IV therapy with magnesium a bit, quantum biofeedback not at all, supplements not at all, valarian root yes for crazy attacks (it’s a herb but be careful because it also depletes gaba receptors like Ativan does), reiki helped emotionally, regular sleeping, eating small portions, mild aerobic exercises get me stable. Meditation keeps me somewhat grounded, Warm showers ease crazy attacks.

        The Brain State Technology I just started, and very slowly. I find that doing everything at a slower pace then recommended is key. The pain often happens because the nervous system is hypersensitive. It’s basically recruited bad pain receptors and created a lovely new path to our nervous system that is out of control. So calming it down is key. Hence why some anti depressants and anti seizure meds help a little. I have found that any opiod has increased my pain. But every one is different and each of us might have other conditions as well.

        I have also found that befire my period the pain and emotions are out of control. So again it leads me to think that calming everything down may help. I haven’t found the solution to this by any means, but I went from completely bed ridden to being able to walk and run again. My tactile allodynia is much better. The cold one spread after doing oxygen therapy, which spread because it over stimulated my nervous system with toxins.

    • I do understand what your saying. I have always loved talking to and seeing my friends ,I have been told that I haveperipheral neuropathy but that is mostly on hands and feet. my pain is over my entire body so I have to be naked almost all the time and this has been going on for years. not only does my body feel so bad but I feel so lonely . over the years I,ve lost all my friends because they don’t under stand. when I go to my DRS. I tell them I need to take off my cloths and they tell me just wait for a bit. I,m at the point that I,m not going to go somewhere to feel as bad as I do to get no help. I really don’t know what to do or where to go I feel lost. I truly wish you the best. Richard.

  17. I’ve had this same sensation for YEARS now, and have only just discovered there is a name for it. I was diagnosed with Hashimoto’s thyroiditis (an autoimmune disease) last year, along with hyperinsulinemia, hyperhomocysteinemia, and possibly PCOS (doctor is still working on ruling that one out). It never occurred to me to ask my doctor about the burning, impossibly painful sensations on various body areas, but now I think I will. For me, the worst and most common areas are the inside of my forearms, and the back and inside of my upper arms. I frequently have it along my thighs, and the tops of my hands and feet. I’ve learned it’s quite common for people to develop more autoimmune diseases once they develop one, and while I am certainly not trying to be a hypochondriac, its hard to ignore symptoms that obviously interfere with a good quality of life. I may ask about the lidocaine gel, as that sounds somewhat helpful. Thank you for this article, I may even forward it to my doctor to help with the discussion I plan to have!

  18. I’m sorry you all are suffering with this as well. I have fibro and allodynia it effects my hands, fingers and feet. I can’t wear certain shoes and with my hands i feel like every time i touch something its burning and zapping me. So i use medical tape and tape up my fingers (like Michael Jackson style) and it helps dull the sensations. I thought that may help someone. These comments make me feel less alone and less depressed about the whole thing. Blessed be for you all.

    • Still going through this allodynia hell. I get the hot sensations in my hands as well. The cold pain all over. And unbearable pain in my feet and hands. The doctor I saw last week said Lyme disease can do this craziness, so I’m in the process of getting different tests done in Canada and in the States. This weekend I was at my wits end with all the pain and have checked myself into the hospital for feeling suicidal from all the pain. They have decided to start me on Lamictal for now. Praying for some significant relief. Just terribly sad.

  19. I have lived with this nightmare for almost 23 years now. I’ve been sick since the day I was born, I’m about to turn 24. As a little girl, my parents took me all over the world, to hundreds of doctors. Never once got answers besides “You are crazy” & “Nothing can make your skin hurt that bad”. 5 years ago I was diagnosed with Fibromyalgia, which is very painful. But it’s nothing compared to feeling like you are in fire from head to toe. My life has been taken away from me because of these horrible problems and of course it is extremely depressing. There are days where I just want to give up & have had suicidal thoughts as well. It’s hard not to when you have a sickness controlling your entire life. I have yet to find any help =( I’m gonna post my email, so if anyone does find anything that helps or just want to talk to someone that completely understands, please feel free to email me anytime!

    • I am sitting crying while reading what you wrote. I too feel as though I have lost my life to this awful condition. I have allodynia from my face to my toes. It honestly hurts to type so I need to make this short. I have Lupus, Sjogrens and Fibromyalgia and they all seem to attack my nerves. The one thing that seems to usually make a difference is something called Butrans, it’s a patch that you change weekly – it helps with system pain, not just one spot. Although right now it doesn’t seem to be helping so, I truly believe that overall, I would probably be worse without it. This week has just been extremely stressful. Ask your doctor about it.

      • Hi Marcy and Brianna,

        Brianna you and I had spoken before. I am still working on the website and I would love to include your stories on it if I could.

        The website is called Hope for Allodynia. I have been doing a lot of research on various ways to help our pain. I’ve got cold allodynia, mechanical allodynia in my feet and movement allodynia.

        After a significant amount of research on medication I have found that Lamictal has reduced the cold allodynia by 40%. I just started nortriptyline which has so far decreased my mechanical allodynia by 20%. I think it will be more. I’m on a very low dose of nortriptyline. Only 30mg. It’s an old anti depressant.

        I am also.combining a lot of natural treatments to my regime. Everything is helping. I believe that this can go into remission. Avoiding stress is HUGE. Some days I meditate all through the day. My supplements also include a lot of food sources of magnesium such as ground raw cocoa knobs, which has 50% magnesium in one spoon. A adrenal support formula from a local practitioner. 4 types of oils and dedicated liver. Adrenals need to function properly to help cope with the constant stress and windups of our body.

        There is so much more that I have found and done which is why I’m creating the website and ways of reducing our pain.

        If anyone is interested in sharing your story, I’d love to include it in my website so we can help everyone out there hurting.

        I am also waiting to go to the Cleveland Clinic for various treatments. Apparently for some Ketamine infusions have put people into remission. This is not a light treatment in any way… But maybe an option. Still need to do more research.

        I can be contacted at

        I won’t stop until there are ways of living a normal life. One second, one minute, one hour and one day at a time.


      • Sorry one more thing…. Although I didn’t describe the horror of this pain in my life in my last post…. The horror is real. I couldn’t walk for almost two years. The pain of touching anything cool was enough to put me in a straight jacket. I don’t have the painful skin but it is all allodynia and includes a painful response to something that is not meant to be painful. I found one website where an individual was able to stop the reduce allodynia through sitting in warm water. If this is something you want to try please go to a salt water pool and not chlorine. Toxins like this can put more stress on our bodies.

        And sorry for the typos in my last message. Just thinking quickly.


  20. Hi all, I’m still here, still in hell but still fighting.

    If anyone wants to talk directly my address is

    I am interested in actually getting a full allodynia support site up and running to raise support and as a place we can come and share/moan/laugh together.

    Please please get in touch if this terrible condition has effected you as much as it has me.

    I wish you a pain free day as possible.

    Ps. I’m in Brighton England if anyone british is on this thread. : )

    • Did you ever get a support group for this going? I started a Facebook group but hardly anyone joins.

      • I am actually getting ready to make an announcement this week about a private/secret Facebook group where we can freely discuss our problems and enhance the community feeling here at A New Kind of Normal even more! Look for details in Tuesday’s post!

  21. Hi there I am a 45 year old male. I have severe scoliosis and I have had three major operations on my back and on my shoulder. I was looking up information about my hair hurting. What I get is when I touch my leg hair and my arm hair and sometimes my chest hair it seems to cause a lot of pain and irritation in that area. Clothes that touch the hair drives me nuts, like when I’m wearing pants or long shirts that rub the hair. I get episodes of this and when it comes it lasts for weeks, but then It goes away for awhile then comes back again. When this happen I have to wear camisole shirts, and shorts to keep it from rubbing on the hair. In the winter time though that doesn’t really work because I live in Canada where it get pretty damn cold, makes it kinda hard to wear shorts.

    I have told people this and they think I am nuts, even my ex thought I was crazy when she could not touch me for weeks sometimes cause it hurt so bad. It seems to me that the parts that have no hair like my feet or my back doesn’t do this it’s really weird not to mention very painful. It’s only when the hair gets touched. I told my doctor once and he also looked at me like I was nuts. So I have had enough. What I am wondering is, if I get rid of the hair would that help? Any help that you could give me would be greatly appreciated, if you have any tips please contact me at Thank you….

    • Hi Dave,
      How are you doing now?

      I get it, it started on my neck now on my head. But its okay so long as nobody touches it. I have had it on my leg when I’ve had a migraine and couldn’t touch it I was wearing cotton trousers, it could be to do with hair follicles but could also be to do with nerves. I get it because I get migraine. And that effects nerves, I have joked about shavbing my head but my other half gave me a look of dread. Plus I’m not sure I could carry off the look. I hope alls okay though.

  22. Sorry to hear you’re going through this, and possibly worse since you wrote this blog/article. I have a rare brain condition and spinal condition (chiari 1 malformation and syringomyelia), I’ve been blaming them for all my symptoms for years, so has my GP and Neurosurgeon. After 12 brain and spinal ops, my GP has finally referred me to Pain Clinic. There I was diagnosed with Allodynia and Fibromyalgia. Certanly not what I was expecting, but does make sense,
    I am so pleased I found this page, It made me feel less alone in this world that there was not only you, but the other people that commented on it, that have these conditions too. If I mention these things to anyone here, they look at me as though I’m loopy. lol. I swear I’m not, my arm really does hurt that much, I can’t wear sleeves!
    Much Love to you all. xoxoxo

  23. Hello, my name is Jacob, I am 22, and I have recently been diagnosed with Allodynia. Thank you to everyone who has posted. There are some really helpful things in here.

    I believe I have what is referred to as dynamic mechanical allodynia, as I have pain when clothing brushes my hair. I have it on pretty much all of my body with the exception of my head, face and public hair. I also have a slightly increased sensitivity to cold in my hands and forearms.

    This all began two years ago when I was teaching my little brother how to snowboard. He knocked me over while getting off the chair lift and I fell hard on my left hip. A few weeks later, when I was back in college I had debilitating pain in my low back. I had to lie in bed at home for a week. I saw a Dr. Who gave me x rays and he said everything looked fine with my bones, and to take ibuprophen for six weeks. After returning to college, I began to learn to live with the pain. I got an MRI after about 4 weeks on ibuprophen. It revealed a cyst in my spine at the l2 l3 level as well as a small tear in my l5 s1 disk. My Dr said they were nothing to be concerned about, and that it should all be heald up in about two months. Soon my back pain began to subside, however, there was a sensitivity growing in my leg hair that I did not understand. For about a year and a half this pain stayed in my legs.

    This summer I began to see spine doctors again. After several unsuccessful lidocane infusions I began to get stressed and the pain spread to my upper back, neck and arms. I saw a dermatologist yesterday who told me I have allodonia and perscribed me a topical gabapentin creme. I’ll receive it in the mail tomorrow. My question is, if Allodynia is a result of chemical changes within the spinal chord and/or brain, not the nerves themselves, then how will a topical creme help?

    I have no weakness, and have learned to manage my pain through wearing tight clothing. I’m worried that my pain will only get worse over time.

    I work out every day and my symptoms seem to be eased while I am working out. Swimming seems to help the most. Otherwise oral gabapentin and the occasional hydrocodone are my only treatment options.

    I am considering waxing as a treatment. I understand that over time, the more you wax your hair grows back thinner and thinner until you have no almost no hair at all. Has anyone tried this with success? I don’t think my allodonia is that bad (however I do hate wearing clothes), since I can shave without any issues, so I don’t think waxing will be too bad to go through.

    I have yet to have my first appointment with a neurologist, but I’m praying we find out the cause of my Allodynia is manageable if not reversible.

    My final question is this. I do not mean to be offensive to anyone who is truly disabled, but for those of you who have filed for disability benefits, do you feel your lives are any better because of it? I am considering going back to work, even applying for a few Jobs, but I think it’s going to be tough. I don’t want to make the mistake of ignoring my problems again, but I feel focusing on them has actually made my life worse.
    Any additional advice or help would be much appreciated.

    • I’m on SSD. It took me 4 1/2 years to earn them. I won my case even though the two 70+ year old men didn’t believe in Fibromyalgia (they didn’t care about the Lyrica argument). I used to do business consulting in Chicago and Seattle and was fairly good at it – definitely miss the six figures.
      I fight with the thoughts of returning. My husband does well, but we’d be so much more ahead. The plan was always for both of us to contribute. But when I wake up paralyzed in pain unable to move, fall due to a loss of my balance, want to scream by just putting on a bra, when the major headache hits and I hold my head as if it will “help”, I realize it’s just not feasible. I still dabble in puzzles, crochet on occasion, and design container houses and draw up business ideas in an effort to keep some edge. Yet, being able to lay down when needed, taking a nap since I usually manage 2-4 hours sleep per night, and stay undressed to avoid pain are “luxuries” no paycheck can replace. I have a VA loan from my service, we get the SSD plus an allotment for our kids, and my husband has a great job with great insurance so for us, I still “contribute” to the family. I just have to be happy with that…
      It’s too hard to get the benefits to risk losing them due to a brief moment of feeling like Superman and being overconfident. I couldn’t do another 4 1/2 years getting them reinstated. Of course, if your symptoms are not that strong, you can get up routinely every morning without needing to go lay down at some point, and the biggest thing – you are very RELIABLE and can be faithful to a ROUTINE, go for it. I think SSD even will give you a trial period to see if you can return. Just be careful – make sure you know what you can truly do vs. wishful thinking. Good luck.

      • I read that a lot of people with disabilities choose to become self employed I agree with Lady Cham when your zonked out and need a rest its great to know you don’t have to worry about asking someone in fear they’ll say no, or you worry bout the heat if the office or scents, kids screaming etc,
        Its like self employment apparently you can be on disability and be self employed, I have been researching this. This could be another path comfort of your own home and flexible timing.

    • Hi Jacob!,

      I’m 27. I’m on disability, I have migraine with aura, for me yes its made my life better, I’ve actually found triggers and patterns, I find I have different perception, you may find it too because you are dealing with pain. If you feel ready to join the rodent race its only you that knows. Unemployment is whole other ball game.

      Allodynia, I get it on my head particularly on my head, I would say you mention you wear tight clothing, this can’t be good because your kind of cutting off blood supply but I think I understand your method, when I have bad head I wear bandana or beany, it supports the bruise feeling plus protects it from air or movement. I don’t know if you have seen neurologist but I hope you find something mate!

      • I too have Allodynia, as well as Fibromyalgia/Chronic Fatigue and other issues. When the Allodynia flares up, my skin is so sensitive. It feels like I’ve been burned. It can be my back, my arms, my legs, back of my neck. It varies. Gabapentin really helped me, because it’s specifically for nerve pain. But I had too many side effects, and couldn’t tolerate the drug. So now I just live with it, knowing it will go away, until the next flare up.

  24. Just in the last 2 to 3 weeks it gradually occurred to me that a palm-sized area at the top of my head (I am bald) hurts when I pass my fingers over my scalp. It stings. Ouch! No other area of my body hurts and the area in question does not seem to hurt when I press on it – only when something rubs against the skin. Very odd. I have no health problems that I am aware of and do not have any sun burns nor have I been out in the sun much at all in years as I live in a cool climate. Just beginning to look into this as it only recently dawned on my that I have a problem. I do not have headaches but I have been under an abnormally higher level of stress in my life lately. Any advice as to where I should begin researching causes/cures is welcome. Thanks you.


    • Hyah.

      I’m a chronic migraine sufferer. I’ve had the ‘ bruise’ sensation before but the past three days have been unbarable. I have it on my left hand side of my head. Its making me feel really low. I cannot was my hair though I have short hair. I’ve found dry shampoo which helps but I won’t lie it made me wince spraying it. I have migraine with aura I’m a 27 year old female. Right now it feels like a hand on my head with pressure. It has made me feel nauseas, two nights ago I had almighty migraine. I thought I was going to die! Literally. I then felt zonked out I usually wear a nausea band. Black one I couldnt even wear this it usually lives on my left arm. I actually put ibuprofen gel on my head and aspirin works for me. The old weather over here U.K I cannot take. My question to you guys is how do you deal with allodynia on your head, the the lady that mentioned an ache I too have it. Its a weird thing because I don’t usually get this. And yes it makes you feel low. Bit of subject here but could I also ask those of you that have migraine. Do you have dark thoughts and close up emotionally? I usually research on google and have found multiple sources but if I could talk to others who have monsters ( my word for migraine) it’d help me a lot.
      Thank you

    • You say that you are under a lot of stress. I’ve found that stress is a big trigger. I have fibromyalgia/chronic fatigue, allodynia, and other issues to begin with. But add stress to the mix, and I’m really hurting!

    • Thanks for the comments. Turns out I got lucky. My symptoms went away when I caught myself rubbing my head too aggressively with a towel after a shower. I never realized I pressed so hard. I’d been doing it my whole life. When I stopped with the sandpaper towel drying, the pain in my scalp went away.

      • I’d watch that Burt, Allodynia goes and comes back. If it doesn’t that’s great! 🙂 but I’d watch it. I have found when I have allodynia have it now on left side of head, I use dry shampoo, particularly if I can’t wash my hair that day. I used to get it on my neck. Now its moved to my head. I guess were just too fabulousd body’s can’t handle it! Thats only reasoning I have.

        • I agree. It goes away for a while. But then it comes back. Usually affecting a different area of the body.

  25. I to suffer all the pains. I felt so alone until i read all of your replys. Drs dont even know whats happening, so that makes this much more frustratibg. I cant even fibish my tasks during day. Depressing. I take the limit if dose of gabapentin, does no good. I also take oxycodone. So oh great now im addicted. Just 1 problem after another. I too want to give up but im hoping someone can come up with a good medicine.

      • I also took Gabapentin for a while. And it really helped. But I had to get off it because I was having too many side effects and couldn’t tolerate the drug. So now, I just live with it, unfortunately.

        • Same here. Gabapentin was about the only thing that helped. But the side effects outweighed the benefits, so I had to stop taking it.

  26. Hello, I’m 22 years old and although I have not officially received my diagnosis of fibromyalgia I am currently being treated for it. I have been struggling with multiple in explainable symptoms for years. And whenever I see a doctor and tell them these things they look at me like I am crazy! Its so frustrating to be in so much pain all of the time and have nobody understand. I spend hours and hours on the floor to try and find some comfort…I have full body pains my skin hurts my hair hurts! Toes fingers you name it and it probably hurts me. I have tried Icey hot and heating pads but nothing seems to really help. This may sound terrible but last night I was so happy I found this site and people who seem to understand the things I’m feeling. It has gotten in the way of my job and my personal life. If anyone at all has any suggestions as to what may help some of my pain and discomfort please let me know I am willing to try everything at this point. I’m working on day two of a terrible flare up with hives and my skin hurting so bad I can barely stand to wear clothing. Thanks in advance and for sharing your stories its been a big help already!

    • Hi Francesca,

      I just read the time that you posted, are you okay?
      I don’t know if this helps but it might. Okay, I have learned a trick lately through experience, I recently got a bad migraine it zonked me out for days!, I was in a warm room. Too warm I wore denims a casual top and as sports bra, I had to wear as coat too because the weather that day decoded tyo work against me, when I get migraines I go hot and cold my body is warm but I shiver. I usually spend my time in a casual top ( always cotton vest) , cotton pyjama bottoms and a lose cardigan, if I get cold I make a hot water bottle, if too warm I put a cold flannel on my neck. I thought about how my body reacts and thought ‘ dress for it’ for example if I am going out I’ll wear something to accommodate warm and cold.

      For you. I know it sound silly are you allergic to Any materials? for me I’m allergic to polyester so I stick with cotton also maybe a halterneck dress may be of some help particularly its lose but it covers you.
      Or cotton clothing? Its not heavy, doesn’t cling and most casual clothing is made with that in mind. Another thing have you tried ibuprofen gel? You can get it in supermarkets, its to help with muscles sprains,strains and injury, I use it when I have stiff neck, when in migraine and allodynia, it sounds as though its something to do with environment, like for me when I get too warm. Another idea hand held fan, that way its sensory, you feel the air and it may be gentle, also you mentioned you sit on the floor but you don’t say ifv you have any support, something dawned on me, again it depends on if you are allergic to materials ( alot of stuff is trial and error) do you have a sleeping bag? The top of a sleeping bag is usually made with a nice feeling material, or ( the weather proof side) if you have one I would suggest trying that out on the floor for comfort, if you have one zip it up and lay on it this should help. But its just an idea. I don’t think there’s much to be done for nerves but there’s always tricks. Hope this has helped 🙂

  27. I am a medical professional suffering with FM/CF/TA that I am convinced is related to a “minor” back injury at age 19. Thinking back, I remember I had sleep difficulty due to my feet burning. Now, I am 43 and every day I am functional is a win. After reading comments here there are a few things I feel compelled, obligated even, to post.
    Jack has not p posted

  28. I am a medical professional suffering with FM/CF/TA that I am convinced is related to a “minor” back injury at age 19. Thinking back, I remember I had sleep difficulty due to my feet burning. Now, I am 43, my symptoms are widespread and every day I am functional is a win. After reading comments here there are a few things I feel compelled, obligated even, to post.
    Jack has not posted since August. Since he seemed suicidal, I hope he is still with us. He has been on my mind.
    From my understanding of how the nervous system works, temporary relief must be targeted to the TYPE of nerve that is overreacting. That been said, overstimulation whether by topical agents such as capsaicin, TENs unit, pressure are just that…temporary. If the overreaction is somewhere other than topical nerves, along the pathway such as at the juncture between the neuro chemical receptors; adrenal, pituitary or other glands; or the brain itself, medications seem to be more effective. One must consider that a combination of processes may be causing our symptoms.
    One woman describes “hives” which would lead one to question an intolerance/allergy-was an antihistamine tried? A cox2 inhibitor? Sufferers in an acute attack consider using the phone a nurse option. They cannot diagnose or prescribe, but if you know what is happening they could brainstorm quickly a temporary symptom treatment. Thinking during an attack it’s not something I can do easily but later I kick myself for not trying some creative treatment.
    It is imperative for each of us to keep a symptom diary; symptom, severity, onset, exacerbated by, relieved by, etc. OR What (symptom), when, where, how bad. This is the best tool for us and our general practitioners to direct our care, consult with the appropriate specialists. Most of the posts I have read would be best served seeing neurologist and/or endocrinologist if current care avenues are not satisfactory. Personally, I question if CBD would have significant relief for TA. Does anyone have word on that?
    Live calm, gently active, eat clean, breath deep. Do what you can when you can do it.

    • Hi Melanie,

      I had to reply to say how great it is for a medical professional to say what you have said so I thank you for that. If I could offer you advice, if I may you say you sometimes forget what works, I would reiterate a diary. In a good day write it all down so on a bad day its there. I have one question if anybody could help. I have been getting anxiety lately, I take 300 mg aspirin for migraine with aura but would love to take a supplement to help calm my nerves, does anyone know of one? I have chamomile tea but I much rather drink water. Thanks for any help or advice.


      • Magnesium has a calming effect. You mix it with water and drink it. Check with your local health food store, because there are different types of magnesium, and I can’t remember which one is good for calming. Hope this helps you.

    • I Melanie,

      I heard from Jack on January 15th through my I am currently doing Ketamine infusions at extremely low doses. It has stopped massive windups from movement allodynia. It’s 350.00 an infusion. Treatments will be futher and further apart. 2 months, 3 months etc. My cold allodynia has been controlled by Lamictal at a very low dose. This too, I will remove during the summer where my skin will not be sensitized by cold temperatures. I recently developed Tactile Allodynia. From what you say? Diazepam. I switched from Lorazepam to Diazepam so I can wean myself off. So the tactile allodynia is drug induced. So right now I am putting on aloe vera to soothe my skin. This too, I will desensitize gradually by swimming in warm salt water and slowly exposing my skin to clothes throughout the day. My very first symptom from Allodynia started in my feet. Being touched or walking would destroy me. My feet felt frozen like ice.I didn’t walk for a year. What started that? It happened shortly after coming off of citalopram. I hope everyone can see a trend. Every single one of my Allodynia symptoms started with drugs!!! After coming off Cymbalta the Allodynia spread into my glutes and my back. Well I couldn’t even sit. The windups would leave me on the floor screaming and into the hospital. I am done with drugs!!! Minus the Ketamine as the toxicity of the drug leaves quickly. I am starting magnetic cranial stimulation to stimulate the neurons in my brain. I work on meditation every day. Focus on rewiring my brain through tactics that trick my brain to start breaking these pain pathways. I can walk again. The cold does not floor me. I can sit again. And dam it, I will wear clothes again. I supplement with Omega 3 4 times a day with vitamine E, drink water with lemon to detoxify the liver and gallbladder, which helps with the absorption of the omega 3, I get my magnesium from organic ground cocoa knibs, my electrolytes from coconut water, my calcium from coleslaw, my protein from goat protein with all essential amino acids, a liquid B complex, a good quality probiotic, and Celtic sea salt for my minerals in my water. I also use a SAD lamp. All supplements are taken an hour to two hours from meds. The Sea salt is taken 3 hours from meds because the iron binds to medication if you don’t. All which restores our organs, our brain, and our gut. The gut is vital in order to heal. I see an amazing physiotherapist who works on desensitization with me. Please don’t just take supplements without a doctors approval or a naturopathic doctor. I also take my supplements by half the recommended dose as to not over stimulate my body, minus the omega 3 in larger doses. No caffeine, no sugar, and no alcohol. The mind and body are neuroplastic. What’s been created can be undown. It sucks like a son of a bitch, but I know and believe that this too shall pass as I’ve proven to myself that I have overcome a lot of this. You too can do it. Believe and never let go.

      • Hi Gloria, how are you? I am very sorry for the lack of contact. My mental health due to my allodynia and back pain has all but gone. I am at the very brink of killing myself, and have been for some time now. I have given up on all medication bar sleep medication as I think it has made me worse. Up until my operation in 2012 I had a good life so I am trying to focus on what parts of my life I have been grateful for. Allodynia is a killer, i am proof of that. Wishing you the best. Jack

  29. im haveing a terrible flair of dont touch my head been itcy on legs too.. ive been under to much stress these three days just got over two weeks of hives.. drsay just stress ill be ok but now i have this new pain.. sometimes i feel like i have a tens machine on but i dont.. i just took some mag and half perk.. shope it helps but sometimes the perk make my head hurt worse and get hi blood -resser..i have ice pack not heat on my head i just took a hot shower and hurt even more. i get horrible panic attacks and racing mind thing like im dying but i kmw im not; thank for listining

    • Hi Gwen,

      it sounds like it’s all to do with over excited nerves, do you have a fan? if you got a handheld portable fan that might help against the places that hurt (you can get them on ebay really cheap), also stabilising your temperature will help, ive discovered this, when your over heated like a hot shower, you open up pores, and your body has to find a way of cooling down, have you ever heard of ibuprofen gel? I swear by it, you rub it on the effected area, (but please check its suitable with other meds you take). when we get stressed we have two possible outcomes, one is we run, our body runs away from the danger, the other is we fight, our muscles tense, you say that you have had a lot of stress, our brains are programmed to overcome obstacles, it could be the stresses way of coming out on your body its basically saying ‘woah dude your doing too much, I dont like this, I am going to cause you pain. I get panic attacks too. those with illnesses are more subsebtable to them because its our way of dealing with things, the trick is deap breaths, believe it or not this helps, when your in pain take deep breaths, depending on where your flare is put something cold on it, but keep breathing. The mind racing is because your brains confused, this is probably due to the stress, im guessing that what has made you stressed lately has been lifted? your body is reacting to this. your brain has made the first step of realising you have been stressed, your body is following suit. from a migraineur i’d just say remember that you are human!

      i hope this has helped 🙂

      Gem 🙂

  30. Ive experienced the symptoms of allodynia for almost three years now, began after a horrible chafe during a ten mile hike, the abrasion from the chafe healed but the burning tingling electric pain remained- like a severe sunburn without any skin blemish. skin rubbing on skin was painful and cotton clothing Ive worn all my life was now painful. This pain spread to my underarms in 3 weeks, then the thighs, then back and torso, ultimately my entire body felt pain by skin contact or clothing being on my skin. pain is constant and never ending unless im not moving. the heat and humidity seem to increase the hypersensitivity. seams of my clothing were becoming painful especially with pressure from sitting etc. doctors threw their hands up with no answers over the years. have tried numerous creams and powders. baby powder reduced friction for a while but once I began moving and sweat the powder was gone and pain from friction of skin remained. no prescriptions over the years have decreased the intensity. I have focused mainly on changing the clothing I wear to reduce the friction, best thing I have found is 100% polyester clothing. my wardrobe is now all polyester and polyester shorts worn inside out (because of seams) as underwear, may be hotter than cotton but it is tolerable. latest discovery that has helped is applying gold bond’s anti- friction stick liberally in areas where skin contacts skin. with change in clothing and applying anti-friction stick I am beginning to partake in activities (like hiking) before this happened. It is comforting to see that Im not the only one struggling from this issue, no one really believes me and will ever understand what affect this has on everyday activities and life. Just felt like posting this because I understand the frustration and maybe my new found relief in polyester wardrobe and anti friction products could help someone who is feeling the same pain. best of luck to everyone feel free to respond with any questions or comments, thanks

  31. I’m curious for many on here if they can trace the start of their pain back to anything specific. My wife is 18 months out from a reaction to a Flouroquinolone Antibiotic called Levaquin (Cipro and Avelox are also common and in the same family). For some that report that it started following a hospital visit or illness they may want to check the drugs they may have taken around that time. Cholosterol drugs can also have bad reactions.

    My wife had a wide variety of symptoms and many have healed. That is good. What is not good is the main issue has remained the same and that is severe pain in her legs. Both legs. Both in the quads. From groin to knee. It is 24/7 pain that includes severe sensitivity to clothes and bed sheets. Doing a new round research and came across this thread as I’m researching Allodynia. We are in a major heat wave right now where we live (100 degrees each day) and she says she feels a bit better with the extreme heat, sweating, etc. She also says my warm hands, hard massage can help alleviate the pain. Seems to me then that the free nerve endings just below the surface of her skin are affected. Perhaps the pathways to the brain are malfuncitioning? Obviously as a female she doesn’t have much hair in the areas of her pain, but I can’t help but wonder if something like laser hair removal could have an impact? Anyone try it? We don’t want to do drugs because it is a pharmaceutical that got us in this mess, so I’m thinking what can flip this thing around. Trust me, we have already tried so many things, but the problem persists. Any ideas are welcome. And, not that it matters all that much what caused it because all we want to do is get rid of it, but for some of you it might be worth looking into if your reaction followed use of an antibiotic called Levaquin (or Cipro or Avelox). There are support groups for this and many of the symptoms discussed on this thread are similar to others with reactions to these drugs. Thanks, Chris

    • Hi Chris.

      I also have tactile allodynia for 1.5 years since having been hospitalized for pneumonia and taking 5 500mg pills of Levaquin.

      What I’ve found is that very few people I can find have this specific reaction to Levaquin or other Floroquinolone Antibiotics, There’s general neuropathy but not many people with allodynia. (which I also have a bit of, especially parasthesia/electric shocks in my face and legs and numb/aching feet/hands at times).

      I recently discovered that Gabapention (Neurontin) takes the edge off (900mg a day), but not enough to not have to shop for clothes more by feel than looks and wear tights inside out under my dress slacks. I’d take more neurontin but can’t concentrate/am sleepy and have a very active and mentally demanding job. It’s been a rough year on me and my family. I cannot find any evidence it goes away either.

      BUT I also had tinnitus so bad it drove me nearly crazy 5 years ago. I had a hard time finding anyone who said it got better. 5 years on and it’s barely noticeable/doesn’t impact my life at all. Sitting in a dead quiet room right now. The fact is, people tend to not come back to the Internet years later to say they improved. They move on with their lives. floxiehope is the closest site I have found to testimonials of those that improved, but nobody seems to talk about this exact symptom.

      I’ve seen 3 seperate neurologists and 1 pain doc who tried a lot of things. No test seems to show any neuropathy and most drugs turned me into a zombie with no real help. The pain specialist refused to treat me and said I was imagining it/to see a psychiatrist was the best course. I gave up on all doctors 6 months ago.

      in truth it’s not as bad as last summer (! year ago) and I have a good amount of hope in a few years it may still be present but doesn’t impact my day to day. The brain has a way of adapting and the body does want to heal. If I don’t hold onto those beliefs I’d go mad.

  32. I have had Fibromyalgia for 30 years.
    My hair has been hurting for the last 5 of those years. Last year I noticed that after eating any kind of wheat product I would have a severe pain flair-up. I gave up ALL wheat and my hair stopped hurting, most of it grew back as well, my depression lifted considerably, my anxiety level dropped and I lost 15 pounds. All that being said, I still have Fibromyalgia and my clothes still hurt my skin. It’s a constant struggle and we tire of the battle but we keep putting one foot in front of the other. Hang in there all of you.

    • Omg……thank you to the person who started this post and each of you since. I actually cried when I found this. I have had fibromyalgia for quite a while…and the actual diagnosis for about 3 years now. They should have named it “endless frustratio n and pain”……EFAP! Lol. About two years ago I began to constantly feel like people were mentally rolling their eyes the second I would mention fibromyalgia. And forget sympathy, understanding. or even just simple compassion for the awful rollercoaster of pain and frustration that fibromyalgia is. I have tried to explain why hugging me hurts, or my skin hurting. Or that the sheets hurt against my skin….and no way can I wear a hairclip without getting a headache or migraine. Clothing??? No way…….I haven’t even been able to pinpoint that or understand why I can often change clothing multiple times a day to get the pain to stop….Or stop the “crawly” feeling. I (at the insistance of my husband), thought I was just ocd. Don’t get me wrong……I’m definitely particular……but when it comes to the sheets, clothes etc…………well…..if it hurts…….it hurts. I will be looking further into the allodynia now. I had stopped even trying to find anything new regarding fibromyalgia or treatment for a while now because, well. It is what it is. Knowing that maybe I can just get the folks around me to not be offended when I don’t want them to touch me etc will be a great help.

  33. So glad to find all of you! I have the same head to toe alldonyia for 10 years. Although I, too, have been handed various similar diagnosis as many of you but, I’m a type of person that wants proof not just a doctor’s best guess ex: labs, x-rays, mris, etc. I have started ordering my own labs. So far: high folate, iron serum and iron saturation (but low ferritin, normal b12). High growth hormone, low thyroid panel. I’ll be doing more tests this year (including genetic testing) I think it might prove benefical if we all stayed in contact and compared notes. Maybe we can find a common link between all of us. Please notify me with any news.

    • Hi sweet, I had low vit-d, and iron after my head to toe allodynia started, and normal thyroid,and all else was in range. Have my last test in my 3 year allodynia journey in September I will see a professor in Birmingham Queen Elizabeth to check for small fiber neuropathy with a biopsy, did anyone of you had this test? Hugs and Xxx

  34. I get allodynia on my scalp, my hair hurts too and I completely understand. I get it on my sides around my ribs, my head and neck, and on my feet often, and anywhere else at random. I also have an extreme intolerance for heat, and I just read that it could be another type of allodynia.
    Sometimes brushing my hair is not possible because it hurts too much, same as clothes, anything tight is unbearable, shoes are unbearable.
    I have started adding peppermint oil to my shampoo, conditioner, and body wash to help make me numb so that the water hitting my skin and scalp is bearable. This helps me, but maybe not a good idea you are cold intolerant.
    Bathing in epsom salts (magnesium) helps me a lot, I also add a lot of lavender oil, which is said to help with inflammation, but it can also hurt to sit on the hard tub, so a cushioned bathmat is on my wishlist.
    I also put muscle rub on my scalp, which looks terrible, but I’ve found a way to wear my hair in a bun so that you can’t see how nasty it looks, ha ha ha.

  35. Just a nice little comment I read the other day.

    “What is more important? The compass of the watch?

    Always the compass; no matter how slowly your journey takes, it will always ensure you are going in the right direction.”

    To all those with allodynia and severe chronic pain, I encourage you to forget about the watch and put ALL your efforts into watching the directional hand of the compass.

    Today is a huge struggle for me, but then they all are. I have been fighting suicide (because of my allodynia) since 2012, it has very nearly got me a few times.

    If you can, keep going. X Jack X

    • Hi Jack I’m sorry to hear that you still struggling yes I do feel your pain it’s just never ends it’s like a torture , this kind of pain is just always there, and never lets you forget about it, so very frustrating. I have been fighting with suicidal thoughts today too, very hard way of living and we are truly soldiers for still staying strong and look normal despite of our severe pain syndrome, nobody who looks at us could tell that we live in a broken body with these absurd pain signals that keep firing every second of every day. Stay strong brother you’re not alone x

  36. Dear Friends,Your comments help me realize that I’m not alone; isolation is a heart rending condition of years of chronic, hard to explain pain. Skin pain, prickly, burning sensations are the sure sign that I have eaten something that triggered these symptoms. Strict compliance to a gluten, sugar and preservative free life style is crucial to me. Also chemicals in any kind of soaps or shampoos can cause these symptoms. It is possible to find foods and products that are “safe” for you. These things were not in any of your comments and therefore I felt that I must bring this most important topic to your attention. This will help much more than md prescriptions.

  37. hi guys, finally got a diagnosis of Celiac disease after years of struggling with extreme pain all over my body and my doctor thinks there’s a link between my small fibre neuropathy and Celiac I have iron deficiency anaemia, and had low vit d 2 years ago I still don’t know if this id the cause of developing this neuropathic pain syndrome. Wish you as pain free day as possible hugs x

  38. I also have “my hair hurts” pain. I spend a lot of my time at home in flannel pj pants and a loose fitting T-shirt. The pressure of the band from a bra is often excruciating.
    What else do I do to relieve the worst flair ups?
    *If I lie on my tummy, with no clothing or blankets touching my back, my husband can butterfly touch the hairs of my back (not rubbing, not even touching the skin) and the pain subsides enough for me to fall asleep.
    *I also use a sauna several days a week and the heat and the steam will help me sweat out the toxins that my body is having troubles eliminating.

    • Hi,
      I have RSD/CRPS, RA & fibro. Severe tactile allodynia. I’m on tons of Gabapentin (tried lyrics, too many side effects), and it helps the burning pain of my vulvodynia, no other relief.

      I’m looking for a clothing line (s) that might work. I live in baggy dresses, no bra or underwear. I can even feel every seam, not just in clothes, but also on my sofa, chairs, even bed linens!

      I miss wearing pants. But with it all (it even hit my pelvic floor & hemmorhoids… all burning pain), any suggestions?

  39. Pingback: Allodynia: The Pain No One Sees

  40. I am happy to find this post. I have been living with tactile allodynia for years, and didn’t know what it was called until fairly recently. I get flares of really sensitive skin, mostly around my hips, low back, and upper thighs. I haven’t found much that helps other than waiting it out, but I haven’t tried anything other than topical lidocaine. I’m at the point where it might be worth seeing a doctor – does anyone know what the best type of doctor to see is? A neurologist? Thank you.

    • I am glad you found me! I see a rheumatologist for my allodynia as it is related to my fibromyalgia! I hope this helps! If I can be of any help, please do not hesitate to reach out!

      • I do ketamine infusions over an 8 hour period. It gives me a couple weeks to a couple months of remission. The only downside is I have to drive 4 hours to the only hospital that does them. It’s worth it though . A friend in England recommend the treatment.

  41. I have experienced the same hair pain. It is ridiculous, head, eye lashes, beard, chest, and even pubic. Like i’m laying in a bed of fire ants. A slight breeze or rubbing from clothing and i’m instantly on fire.