Painful to Touch: Fibromyalgia & Tactile Allodynia

Warm water therapy, I am very grateful for a jacuzzi tub. Find the temperature that is right and suspend. In line heating for jacuzzi tubs will regulate temperature for extended periods.

Thanks for this article. Both my mother and I have fibro, and it’s always nice to know that out issues have names

Now I have a name for why it hurts so much to have people touch my feet lightly!

Great post – very informative about this strange condition- thanks!

My waist band bothers me. When sitting at my desk, I use a microwaveable wheat bag as a heating pad. You can order them online at http://www.wheatbags.com.

Yes! Wearing a bra or pantyhose with elastic waistbands is so painful that I have had to stop wearing both. I can tolerate a camisole with a non-binding support layer, but that is it. Once I made the change in clothing, it was a great relief.
I have to cut the tags out of all my clothes because the little nylon threads they use to sew them on poke me and trigger an itch that quickly turns into pain and a kind of adrenaline response that makes me nervous and irritable all over. This is especially bad with those tags in shirts or jackets.

No wool, too itchy to bear.

Wow, I consider myself very well educated about FMS, and I never heard of this. It would explain a lot, though. I thought the problems in my feet were caused by my diabetes, and yet, my blood sugar control is near perfect, and the pain comes and goes. I found it’s the worst after wearing my shoes all day, which are a bit tight around the instep. But they don’t bother me when I’ve been home wearing my loose houseshoes all day. Hmmm….might have to go back to wearing lace ups again.

I’m wondering if extreme ticklishness is a sign of this? My husband has always been very ticklish, but since he’s been on Lyrica, that has gone away (along with much of the fibro pain). We’ve started wondering if the ticklishness is actually a pain type of signal. Would certainly explain my ticklishness, which is pretty extreme.

Thanks for giving this a name. I can usually keep the pain at bay with 800mg ibuprofen, especially when I am at my physically challenging job, but some days, not even that helps. It seems much worse for me in the evenings, when I am exhausted from work, or when the weather changes.

I’m 63, & have had Fibro since I was 18. I have very sensitive skin that causes actual pain when my arms or back are very lightly touched; water tricking down my back from a shower hurts really bad but a heavier blast doesn’t; I know, sounds crazy. Also, even in hot weather, I can’t stand cold or cool water on my feet or body-it hurts too much. Guess now I finally know why. I’m very sensitive to clothes, too,especially when
there’s any pressure from them at all.
Sue

My pain is veru similar! Loose fitting clothes and light touch sends me almost into tears. But, firm touch and tight grips make the pain go away. My dr. just prescribed me Lyrica, i’ll let you all know how it goes!

medical hypnotism works very well.

Thanks for the ID on this problem. I thought ‘crazy’ was added to my list of symptoms.

Some days I can wear my sports bra all day & others I might last 10 minutes. I live in stretch pants (sweats, maternity…like yours, light weight ‘jammies’, etc.); with loose tops, short gowns or even long gowns when my legs just won’t get warm.

I love the spa my hubby got me for our anniversary in 2007, but will have to leave it with the house when we sell, or sell it before then. Our new home is gonna have a jetted tub in the master bath for my long, hot soaks… I also love long hot showers.

I worked at a spa (as a massage therapist) before my FMS & OA took me out of service. I loved the tanning beds & heated pool.

Heat of any kind is wonderful.

May you all have more good days & less bad days. God Bless & keep you. Kathy

I forgot to say that in massage school, they taught us that a tickle is the first pain sensation, so I guess it is a pain response.

Aqua Therapy, gentle Tai ‘Chi and Gi Gong movements help me. I’m on an herbal maintenance program which is gentle on the system. Narcotics and a myriad of medications for numerous conditions, not the least of which is fibromyalgia, rendered my body and mind toxic. I struggled to come back from that hell. Still struggling.
Grateful for this site. It’s very helpful.

Has anyone ever read the book, “Too loud, too bright, too fast, too tight”? The book contains some retraining suggestions for tactile disfunction that seem to work. One of which is called Body Rolling. It is uncomfortable at first but gets better. Look for a certified therapist in your area. However, there are not many of them.

I’m sensitive to certain things in clothes. I have to cut out all tags and as someone mentioned, those plastic threads. I have found that wearing certain things inside out, especially outer garments such as sweatshirts does help. I also wear underwear inside out so the seams don’t hurt as much and I wear terry socks inside out so the smooth side is against my skin. I hate wearing a bra but really do have to except when at home. I’ve made bra liners of smooth cotton quilting to put under the elastic bands of most bras. Much elastic contains latex which is an allergen for many people. Goddess makes a sports bra that has no elastic against the skin.

Capsacin is the worse thing to try in my experience. The pain was INTENSE when I tried it. Wearing a Very soft fleece nightgown and nothing else is my coping strategy. Warm bath helps sometimes but not always. As for bras, I refuse to wear regular bras. I get a pull over bralet from “Barely There” available from onehanesplace.com that works better than anything else.

When I remarried, I had to explain to my new husband that a playful touch on my arms caused severe pain. Also bumping into things, stepping on cords, causes extreme pain. I am glad to finally have a name for this.

I read all of the comments before mine and all of you are related to me. Ha Ha.
I am soooo uncomfortable in my own skin and anything that touches it. Tight waistbands, turtle neck shirts, elastic wrist bands, tight socks ( or shoelaces tied too tight ), panty hose, bras……. a tight hug, strong handshake………no wool, nylon threads, shirt tags or berber carpet. Just try and explain all this to someone who DOESN’T have FMS.

Have Ankylosing Spondylitis and always thought that the pain around my waist that is so sensitive to having clothing around it was just part of A.S. Mentioned it to my rheumatologist and found out it isn’t related. So thrilled to find a name for it and to know that there are others out there with similar symptoms. I change my clothes throughout the day. My neighbors are used to seeing me in pjs.

i have found MY wonder help. it is emu oil or cream – from australia, and this works for me like magic. when i wake up and cannot move – on it goes- and half an hour later i have forgotten about it. also for all fibro pains however good or badc

I too use emu oil and it is a lifesaver. I now manage to go to pilates and yoga for the over 60’s and I use the emu oil before I go and then have a long sleep on returning home and put on more emu oil and then I can carry on with my day.

Well good. Now I can SHOW my husband why it hurts to touch me. He sometimes thinks I’m crazy or over exaggerating the facts. Ummmm, no.

NO ONE HAS MENTIONED ABOUT YOUR “HAIR AND SCALP”HURTING…VERY PAINFUL…ANYONE ELSE???

I suffer with a sensitive scalp, it feels like my hair hurts. I used to wash my hair and the pain would go but after the last week even washing my hair didn’t help. I find that it comes on when I’m due my period but seems to be getting worse and for longer periods of time. I did go to my GP and he said he had no idea what it is, he sent me for some blood tests but they came back normal. So I’m left suffering with no clue what to do. This site is great, nice to know I’m not the only one!

In the last week I have developed this. My hair hurts, my upper arms, back and chest. My family luaghs at me. I’m glad I found this sight, now I would like to know wht I can do besides take Motrin

I get sensitve scalp along with migraines. When I am prone to migraines, my glasses or anything touching my temples will cause one. It seems I go through cycles when I’m more prone. My scalp will feel like my hair is standing up.

Wow! As all of you, my symptoms keep piling up. When I first became ill (5 yrs ago), I developed a dent in my head (about 1 inch long). If I am going to have a flare of one of my illnesses, it hurts like heck. I can’t even brush my hair. Also, went to a new physician and he doesn’t believe in Fibro. So now I have to travel 250 miles to my old doctor(s)). Oh well!

The doctor that I work for traines other doctors on a technique he developed called Quantum Neurology. Some of the doctors he has trained have had very favorabable results with Fibromyalgia after attending the Sensory Seminar he teaches.

You can find a list of trained doctors on our website: http://www.quantumneurology.com/findadoctor.htm. When looking for a doctor, make sure they have attended the Module 2 seminar as that is the Sensory seminar.

Good luck to you all,
Dan

I have constant extreme sensitivity to anything that touches my body, especially to my head, neck, shoulders, all over my backside, hips, behind, etc. (sometimes even my eyeballs hurt when I put in and take out my contacts). I also cannot tolerate variances in temperatures, so ice packs or heating pads are out of the question. All clothing that touches my body, tags in shirts, showers, wind blowing on me, the sun shining on me, anyone touching me…anything and everything that affects my sense of touch, it is all very painful for me. I also have frequent “electrical type” of shocks all over my body when it gets really bad. I cannot have massage therapy because that means someone has to touch my body and that’s “painful” for me. I have been put on all types of pain drugs, no help (I currently am on my pain meds). I have had Fibromyalgia and Chronic Fatique Syndrome for 3 years now. It is true from one of the other postings, explaining this type of pain to someone who doesn’t have it (most everyone I know) is difficult at best. They all think this is the craziest thing they’ve ever heard of. Thank goodness for a loving and supportive husband.

it is my gums that have am abnormal response. it is only the left side of my mouth that is involved. brushing my teeth doesn’t hurt, but breathing through my mouth is agony!

I’m one of the unlucky ones that suffers from fibromyalgia. When I’m in real pain I sit in the sunshine for about 15 minutes and it really helps!!! Unfortunately not everyday is a sunny day.. As for pain killers, Excedrin extra strength is the only one that really helps me. I take 3 caplets when I can’t take it any longer.

To Sandra: Yes!! I get scalp pain. It’s just terrible!! I hate it!! Nothing seems to help for that.

Try vitamin D3, it’s the “sunshine hormone” it really helped my pain. Have your doctor test for a deficiency, it s very common in people who live ABOVE South Carolina. Most of us DON’T get enough sun to keep us healthy. My leg twitching, and much of my “phantom pain” disappeared with Vitamin D supplementation. Good luck, John

I have had contact allodynia for a few years now. In my case it seems to be the result of various operations and accidents that have joined forces against me. My pain is very localised but recently has started to spread. I’m beginning to wonder now if I might not have an undiagnosed underlying condition.

I really thought I was losing it. I’m a nurse and couldn’t figure out why my skin was hurting like it was. I asked co-workers and no one could remember a name for it. My problem is the pain is in my buttocks and upper hamstring area. Just wearing pants is a problem, including underwear. A hot bath helps some, I guess its time for pain management. Thank you for this article, I’ve been looking for answers for over a week now.

so i’m not crazy? i’m a nurse and wouldn’t even consider mentioning this to my dr. because even I think it sounds nuts….my pain is very sporadic and feels like a terrible sunburn, but no redness, rash or breaks in my skin. it can start one place and travel to another for no apparent reason, leaving the first area without pain! it helps reading these accounts so that at least i don’t think i’m imagining all this….frustrating!!!

I can’t tell you how much better I feel knowing that I’m not the only person who experiences painful skin! I’ve taken articles to my doctor and explained to him how many symptons of FMS I have. He said they are also symptoms of sleep apnea. While I don’t disagree that I may have a sleep disorder, I also have at least two thirds of the other symptoms of FMS. (I can remember having symptoms starting as young as high school.) Fatigue just defeats me somedays, and my painful skin can be in just a few spots, or can go from head to toe. I never know when it will happen, or how severe. The only medication that truly helps me when this happens is vicodin. My hands and feet are constantly stiff and sore first thing in the morning . . . . after that, I just never know what the day will bring. Sensitivity to light and noise drive me crazy as well. Anybody else?

I feel like I’m babbling here, but it’s just so refreshing to share with people who actually know what I’m talking about! Does anyone else have weight trouble along with everything else? I’ve become alot less inactive over the years just because of increasing symptoms. Thanks so much sharing all these comments!

its primarily my legs that are effected and it sucks because i cant skleep for 3-9 days at a clip. light touch is excruciating burning like pain in my peripheal nerves but yet if i scratch my fingerlais hard enough to draw blood its a relief or using sandpaper but i wish i knew something that worked longer and better

This is for Sandra. Yes, my hair and scalp hurt. This was my first symptom. I have postherpatic neuropathy secondary to a Shingles inoculation. I have also be diagnosed with Fibro. I never had chickenpox and therefore had no immunity when given the live virus. I had a short outbreak of blisters above my buttocks that traveled up my spine. I have all the painful sensations others here have described but my scalp is very sore all the time. I have been checked by dermatologists and they say its part of the pattern.

I have had skin pain on and off for some 30 years. At 53, I have it more often now. It is usually in the same spot on both arms, or both legs, or both sides of my rib area. Tomorrow it may move to both elbows or both calves. The pain changes areas but it is a mirrored pain on each side of my body. Does that sound like fibromyalgia?

I am thankful to learn that there is a diagnosis for this skin pain. I can attest that women are not the only sufferers of this condition. Although vary infrequent, 4 or 5 cycles per year, in my case, other than the scalp, there are no consistant areas that are affected. In the past only one area at a time, however, now I have upto 4 areas affected at the same time….not fun!! Will try Tramadol next, tylenol does not help.

Iam seventy years ols and have had psoriasis since I was fifteen. I developed fibromyalgia when I was in my fifty’s. I have always had sensative skin but in the past ten years it has worsened to where I can not wear the same clothing for more than a few hours. Trying to sleep is the worst. I change the sheets daily, as any pilling sends me into spasms. My husband has always called me princess with the pea and it is true. Trying to watch television or read while sitting in a chair is sometimes so painful that I spread a sheet on the floor and try that. A change in temperature helps. My Doctor diagnosed my condition and perscribed the ultracet. I just wish there was a cure for this problem.

I am just 28 few years ago. I am a Chinese who developed fibro last year. People here have never heard about it and I felt like an alien when others heard of my case. They would think I act like crazy! I really want to know is this terrible pain when being touched will be carried on in our lifetime, which means forever…..

I am always afraid of losing my boyfriend since I would scream to pain whenever he touched me. I wonder how women can marry and get pregnant with such kind of pain.

I don’t know if what I have is tactile allodynia or not. It started in my mid 20s and comes on for no apparent reason.

Its like a sunburn … and its only on one side of my body or the other. It never crosses the spinal column. I went to the doctor once and he said it sounded like shingles but he had never heard of someone not breaking out in that characteristic rash that people with shingles have. He didnt’ know what to diagnose me with … he said it was kind of like reverse shingles … like maybe the rash was on the inside ?????

There is absolutely no change to my skin when this happens ! It looks like the same as it always does. Its really ridiculous. But it hurts like heck !!!

For Stacey:
Like you, I had sensitivity in my skin, especially if I had an infection or the flu. After years of this, I finally had a breakout of Shingles. My doctor things it was developing over the past several years and finally erupted.
You may be in a similar situation. Good luck.

My wife started having Pain to touch in bicepts-upper arms and back. She’s in her mid 40’s.

Question – Those that suffer from this, do you drink a lot of soda that has Sodium Benzonate (spl?)?

My wife drinks a lot of Mt Dew and has for most of her life. Just wondering if there is some link to the perservitive and these symtoms.

Thanks

I am 24 years old and my husband thinks I’m crazy because just a poke can make me cringe. He calls me a hypochondriac all the time. It’s so good to know I’m not the only one who does weird things in the name of comfort. Like wearing your socks inside out. I feel better knowing that there is a reason why it hurts for my husband to massage me. It’s awful and I hate it, but at least its real and not just in my head.

I’m lucky in that I get the tactile allodynia occasionally. But when I get it, it’s either in my scalp (my hair hurts), along a butt cheek, the ankle, or the bottom of a foot. It can be in more than one place at a time, but rarely anywhere other than these places. The butt cheek and bottom of foot are the most annoying since it’s very hard to avoid having things touch those areas. I also get a deep ache underneath the allodynia. So, while I sit at my desk at work, I feel like I’m sitting on a bruise.

I use Lidocaine cream and tramadol and tylenol. Nothing really knocks out the pain completely, but this combination at least lessons it so it’s tolerable.

The good news is that more and more research is being done and they are learning more about what Fibro is and what causes it. Hopefully this will result in some better treatments and possibly a cure!!! I’m currently participating in a clinical trial at NIH for a new pain killer. Hopefully it will be something that works.

I have read from the internet about a surgery for fibromyalgia and allodynia invented by a professor in Switzerland which helps to cure fibromyalgia pain. Have you heard about that or from anyone or any patients operated by him in your side? Or what is your opinion on it? Can we save by him?
The link is : http://www.fms-bauer.com/gb/

The allodynia drives me crazy everything. I feel like being unable to touch things or being touched.

I have the same problem as Stacey (38). Pain in my skin is terrible. Travels daily to different spots but is always on one side of my body. It hurts through layers of skin actually and even bothers me just sitting here. Feels like a burn that has cold air blowing on it constantly. Very frustrating and I have no idea what is wrong with me.
No diagnosis yet….
Stacey, did you ever get any more information or a diagnosis?
What is going on with me??

I am relieved to hear others describing what I am feeling – and the cold air blowing on a burn is incredibly accurate! My left shoulder, top of back and left arm to the elbow are affected with the most awful sore skin. Every day I have been looking for the rash, but after a week there’s absolutely nothing to show!

I also suffer occasionally from pain associated with an old injury to my upper back, and find that when I move my neck to the left I get a pain all through the sore places. I now wonder whether this is actually associated with a trapped or pinched nerve. Really beginning to get me down, and if it gets cold it’s excrutiating.

I have been suffering from fatigue, depression, migraines, panic attacks and sore skin and achy joints for years. Probably all started happening arounf the late nineties. CFS and fibromyalgia werent big soo I have always been diagnosed with depression and anxiety disorders. Now I wonder… Right now my waist is sore to touch and I am soo tired. I noticed my symptoms get worse if I eat alot of sugar or corn or canola oil or sybean oil. If I eat lots of fish ,, rice, fruits and veggies, I can ALMOST feel normal again. But I honestly havent felt normal for years. My suggestion is to look up information on diets that you shoud eat with fibromyalgia.. and info on gmo crops. Ive been eating natural and organic as much as possible and Whe I do I feel bettter, but sometimes I go on these sugar binges and chips and stuff and It takes me weeks to recoup, so I know the diet is very important in recovering. I have lived it and live it everyday. Good luck to all and to me!!!

I have been experiencing painful forearms. Painful to touch with no rash. I have had it between my shoulder blades and skalp before too. I have not gone to the Doctor for fear of not being taken seriously. I also suffer from Raynaud’s Syndrome ( thats what they told me anyway) and geographic tongue. As we speak I am experiencing the burning tongue sensationa and painful skin. I wonder if its related? I really hate going to the Doctor and just know if I do I will get looked at strangely or sent for a berage of costly tests resulting from no answer. I just went through tests for a supposed gall bladder issue and it turned out ok. They wanted me to go for another test, but I can’t do it . Too costly. So exhausting.

I am a guy, and I hear this is a womans thing. I can assure you, i have the same thing. Right now, it is the worse it has been, thats why I found this site. It usually just affecting like one part of my body (thigh, forearm, either sided of my face,or my shoulder) But since Friday it has been hurting from my spine to my sternum. I still don’t understand why it dont “cross sides” anyway, right now its hurtin bad and it had spread to the top of my shoulder and down my arm. It is particularly sensative on and around my left nipple. I missed church this morning because it was uncomfortable to wear a shirt. Mine is sensitive to heat (sunlight) and air blowing on it. If I get chills(goosebumps) it is really paiful. I get this off and on but this is the longest it lasted. most OTC meds for pain don’t work so I don’t know what to do. I have a DR appt tomorrow and I hope she knows what to do and not think I am crazy.

Thanks for this information! I always wondered what the heck was going on.

I was diagnosed with CFS 5 years ago and the rheumatologist told me i had Fibro a year ago, my body hurts to touch and it feels like the pain gets worse before it eases like when someone playfully pokes me on my arm or when i scratch I am left in pain which intensifies then wears off. I feel exhausted and sleepy all the time and do not know what to do, what painkillers apart from Ibuprofen work?

thanks guys, hope everyone feels better .

About 10 years ago, I was on a trip and the skin on my right arm at the elbow started to hurt. I stopped at the drug store and ask for something to put on it. 10 years later and i have found nothing to stop it. I have tried over 25 meds that are used for depression to try to stop the pain transmission. absolutely nothing and i mean nothing has any affect on it. you can diagnose until the end of time but it doesnt help. I have been on oxy contin, oxy codone, hydrocodone, and a host of others for 9 years. all i get is partial temporary relief. i will continue to test and try until i die because my mother has it and my children have it. I would like to figure it our for my kids.

I’m not going insane! I’m so glad I found this post. Painful butt, thighs, inner arms, feet. Clothes seams HURT. I definitely found out NOT to take hot showers that can burn the skin. Unfortunately cool ones are just unpleasant. Am currently adding more olive oil and fish oil in my diet to see if this helps. Has anyone gotten relief this this yet? Any suggestions on clothing brands with oh-so-soft seams?

The skin on my back underneath my armpits ALWAYS hurts. That is my most painful area. If anything touches it I go absolutely crazy. Do any of you have terrible pain when you scratch an itch on your skin? The intense pain seems to last for atleast 20 seconds afterwards. Kind of like if you bumped your leg on the corner of a cabinet. I take pain meds and none of them seem to help at all. Very frustrating.

I was surprised to hear of so many other people sufferring like me. My neuropathy causes all the nerves under my skin to hurt with such intensity that nothing really helps. The pain can be reduced with certain drugs – that lose their effectiveness over a short period of time. Natural relief that helps to some extent include sitting in a pool (it is the cool water that seems to help), sitting in a dry cool area or with a small breeze, no clothing which seems to just irritate by entire body. I avoid any thing that constantly rubs on my skin, avoid heat and sweating and try to avoid stress or becoming angry.
Do these options help anyone else? Have you found anything else that seems to trigger the pain or help reduce the pain?

I was so glad that I came across this site, my pain is on my head it’s like my hair hurts! I’ve just had my worst ever case of this lasting over a week. Before I could wash my hair and the pain would go, this time I had to go have my cut and thinned out which has at last eased the pain. Do you think this is Allodynia????

When it is in your hair, on your face, or on your neck, it could be cutaneous allodynia caused by migraines – if you have migraines. Same thing basically as tactile allodynia. If you have FMS and not migraines, then it is probably just the tactile allodynia. I have migraines , but do not have the cutaneous allodynia. I have tactile allodynia very badly on my back making it very difficult to wear a bra and panties. I basically wear a soft cotton gown or beach cover-up around the house and I wear a loose dress with a half slip out and a loose bra with an extender when I go out.(I sometimes put tissues underneath the bra to protect my skin.)I can’t tolerate anything too tight on me. The trigger for me was wearing a bra that was too tight and some panties that were too tight with trim that was irritating my skin.

I am so glad to finally put a name to what I am feeling. My doctor diagnosed me with Fibromyalgia one year ago, fairly mild so I don’t take anything stronger than ibupropen. I am a nurse and was embarresed to mention to her that I have virtually stopped wearing a bra in the last year. The metal hooks at the closure feel like barbed wire. I have other symptoms but only on the left side under the bra strap and down the scapula and under the back left panel of the bra. It isn’t exactly painful all the time but I get a sensation that the bra is “riding” up my back. It causes my shoulder and left side of my back to “twitch” as if trying to move the bra back into place. No problem on the right side. I saw my doctor this morning and finally mentioned the symptoms to her. She had no answer for it. I just got on the internet and did some research on my own and found these postings. Has anyone else experienced what I am experiencing?

I’ve had skin that hurts, sometimes from the very least stimulation, for some 10 yrs.! Drs. do not SEEM to understand and have never offered a name for my condition. I have never been diagnosed with fibromyalgia, but definitely have ALLODYNIA! Sometimes I cannot get to sleep as my body touching the mattress sends “electrical” sensations through my skin – sometimes just breezes or slightest touch sets it off – it’s absolutely miserable! I take Gabapentin for this – it helps me get to sleep at least! I’ve had Shingles but dr. tells me “nerve pain” would result only in area I had shingles…not widespread as I have it???? It is “comforting to know I’m not alone in this! Thank you.

Wow I have been suffering with this for about 4yrs
My pain is always on the back of my legs my
Calfs and groin and private areas . It comes
And goes all the time if my pants are to tight or
If my clothes is to loose. . I use heat to clam it down or
I get intothe hot tub to clam down my symptoms
But I could never figure out if this was sumthing that I was
Making up or was really happing to me. The pain
is sooooo bad that sometimes I can’t let anything touch me
But I’m so glad that I found this article n I made a doctor apt
Tomorrow and now I’m not scared to tell my doctor what’s
Going on . This is a real problem

I have had things like this occur going back to as far as 12 years old. It started out with my right thigh…super painful to the touch and would last for days. Now it seems to attack random areas and is really painful. Thankfully it is pretty rare, but when it happens it definitely grabs my attention. I have it right now spanning from my right thumb down to my wrist.

I don’t know if this is related to it ,
but I feel severe pain almost like sunburns ,
Mostly on my shoulders down to my lower back area , my arms , the back of my neck , and my thighs.
I only get this pain when I don’t feel well.
I don’t know how to take care of it either.

Have you ever received help and anything that worked? I have been suffering in the same areas and the burning sunburn feeling…please let me know if you found anything that helped – my doctors have been useless. thank you

I get the painful skin all down my thighs and on the backs of my arms. Its awful because its usually in areas that generally rub together. My boyfriend might playfully grab my thigh or arm and it feels like hes trying to bruise me, even though he’s being gentle. Cold has ALWAYS hurt me, as far back as I can remember. My sister would put ice in my shirt because I always threw a huge fit and she thought it was funny. I dont think she knew how much it actually physically hurt. Im currently 33 and I have also had swelling in my legs during the summer months. Im not diabetic, all blood tests were normal, I dont salt things, I drink caffeine maybe 5 times a week, and I cant explain the swelling. All I know is that the bottoms of my legs get that same pain a day after a swelling episode. The skin hurts, and the tissue under it feels bruised. I dont feel like this all the time, it comes and goes. I’ve noticed it getting worse near my monthly period. I dont take any medications. I’m very against all meds. It would be nice to be diagnosed, because I thought everyone got this way. I had no idea it wasnt normal for years. Its been the past 3 years that I have really tried researching the odd pains.

Kelli….I have, in the last two weeks just experienced the pain under the arm and my side and it has spread to my shoulder blade. I thought initially that my bra was rubbing me raw because that’s what it feels like but my bra doesn’t move around on me. For the last year or two, once every few months my right or left leg from the hip all the way to the bottom of my foot gets the same kind of pain. It hurts to walk, it hurts to sit on the toilet, even my private area hurts on just the one side, which means it hurts to wipe. I always thought it was a hormonal thing because it would happen around my time of the month. But now I’m experiencing it above the waist. This first instance above the waist has become really painful. My husband has convinced me to see a doctor but to be honest after reading things online, I’m kinda scared that I’m going to be misdiagnosed or told it’s a pulled muscle. I know it’s not a pulled muscle and I workout 6 days a week. Nothing intense, so excercise doesn’t necessarily make it better, like I’ve read in some posts. Anyway, I’m calling monday to make an appointment. I’m the kind of person that if I feel like I’m not being taken seriously by a doctor, I’ll just live with it instead of going through the circus of appointments. I’m so glad thought that I have terminology to take with me to my appointment.

I am 28 and have been formally diagnosed with FMS recently. I have been told that FMS is usually kicked started by an episode of illness like that flu/glandular fever which I had when I was 18. My skin pain is significantly bad today as I sit at my desk battling not to go home as I refuse the illness to dictate my life. I noticed that most people in the posts ask about drugs to help but as I was told when diagnosed… there is no cure, only lifestyle management choices that can help. I have found the diet is probably the biggest contributor to my symptoms. On seeing a naturopath (weight loss attempt) I was put on a restricted diet eliminating sugar and carbohydrates. I have never felt like a million dollars in my life whilst being on that diet!! It significantly addressed my horrific IBS symptoms and my skin pain. The sensitivity to the cold remained but lesser and my clothes did not bother me at all. I take ‘fibroplex” – a concentrated powder form of Magnesium, twice daily. The only problem I am now finding is that because I have eliminated the sugar and carbs from my diet, my body doesn’t tolerate them at all. I ate some bread and chocolate over Easter and I am paying for it big time today. This is something that I find different to the other posts…. I think I have found my pains TRIGGER in food. If I can sustain a strict diet of natural food (meats, eggs, cheese, vegetables and fruit) I feel amazing. My pain started under my left arm. I was convinced it was some type of breast cancer and have had two ultrasounds because of these fears. It now spread to my sides, back, arms and neck. I am constantly cold and have a heater going at my feet at my desk all day. Others think I am nuts and my boyfriend finds my fragility frustrating. I have been through sooooooooo much testing and feel emotional and drained by my symptoms today.  Others thoughts or advice welcome… PLEASE.

Try vitamin D3, it really has helped my pain. Most people are deficient because it is created in the skin by sunlight. Every one of us in Northern latitudes (above south Carolina) are deprived of sunlight. Have your Doctor check for a deficiency, my “restless legs” have ceased, and I’m now just about sleeping through the night! I haven’t in 3 years!

John

I think i have this now, everything on my top half is sore to touch, clothes hurt putting my bag on my shoulder hurts. I have had to take migraleve today as i have a migraine, but i never realised this could be due to that.

I’ve had fibromyalgia for over 15 yrs now, It started with what I thought was cold spots on my back many of them. Dr’s told me it was from a back injury nerve damage it came and gone all the time. So now without insurance and no extra money i deal with mine as much as possible.My pain is never in the same area.. it travels from my scalp, arms, waist, legs, back inner thighs is the worse for me, etc etc.. never in one place long. it comes and goes but when it hits its burning to the touch. So this drives me nuts. I try my best to eat right. I have asthma, and beginning of copd. So everything is hard for me. trying to keep fit is a big deal here in hot atlanta. Any help would help me I rather not take anymore Medication. thanks

i have had this skin pain for as long as I can remember….I monitor it, and found a pattern…if I am getting a cold the skin on my arms hurt. If I am getting a fever the skin on my entire body will hurt. I cannot even stand for my husband to stroke my hand, it feels like someone is using a grater over an open nerve. It comes and goes and sometimes is accompanied by quick sharp shooting pains, kind of like an electric shock that can originate anywhere in my body. I understand it is a cause of chcken pox or shingles.

I have had this pain in a very localized area just below my left ribs in the front for a few weeks now. the chronic fatigue started months ago before the sensitive skin symptoms. cold sandpaper when the clothing brushes across it is a good description of it. I was stumped for a cause until i found this thread, thank for all the info and for sharing.

I have had painful scalp for as long as I can remember. I’m 32 now and I feel like my entire leg (both sides) is completely bruised. Just the lightest touch makes me grimace! My kids crawling into my lap is excruciating. This is the case for my shoulders, low back, and neck as well. Crawling into bed is painful, and I never feel rested. Recently, I have become overly sensative to mosquito bites as well. A single bite after 24hrs becomes hot, red, horribly itchy, and swollen to the size of a silver dollar. Anyone else have that?

I dont know if i have the same as everyone else but ever so often i keep getting a wierd sensation pain on parts of my body not to poke just sensitive to touch or wen i have clothes on it its sore, it feels warm, the pain iv got at the moment is on my knee i got my boyfriend to put some cream on it to sooth it but it hurt so much and the cold sensation from the cream made it worse..can some one help me please…and to top it off i have headache and all of a sudden feel like i got flu symtoms??

I have had Fibromyalgia and Chronic Fatigue for 17 years, but this tactile allodynia just started a few months ago. Thank you for the information, at least I know I am still dealing with the same’ol stuff. I may have to move to a nudest colony if this keeps up.

DOES ANYONE ELSE GET THE THE PAIN AT THE BACK OF THEIR HEAD.ITS WORSE AT THE BOTTOM OF THE HAIR LINE.EVERYONE SEEMS TO GET IT AT THEIR FEET

I have to cut off all the labels from all my clothes. I cannot sleep in a bed where the sheets are tucked in – ohhhhh far too tight for me. I need a very loose duvet to cover me. I have to sleep with earplugs and a sleeping mask to hide out all the noise and the light. then the sleeping mask bothers my eyes.

Oh you lucky lucky people who do not know what I am talking about and have never had any of these symptoms.

I’ve been dealing with this condition for 15 years and now I finally have a name for it! I found something that works really well for making the skin pain stop but you have to be able to tolerate excruciating pain for the first minute or so. (I didn’t read all of the comments so I hope this isn’t a repeat.)

Briskly rub a rough textured or scratchy cloth over the affected area and once you get past the initial shock of pain, the nerves seem to get over-stimulated and “rebooted” in a sense. Keep rubbing the area until it is no longer painful. It only takes a few minutes! This usually makes my tactile allodynia pain stop for a few hours or go away completely until the next bout, which could be days, weeks, or months.

I hope this helps someone!

I have had this for years and always thought it was a weird virus jumping from place to place, usually on one side of my body. Often if my skin hurts, my eyes hurt too. Right now I have it all over my left upper torso, the armpit being worst. I am sorry to hear others have it but glad for all the suggestions. I work at home and wear sweats most of the time which does help. I have almost no tickle response and have had FM and CFS since age 20 or so when no one knew what it was. I take a lot of coconut oil, ginger, cinnamon and organic cider vinegar as anti-inflammatories and they help a lot but nothing cures it. Does anyone else have the eye problem?

Stacy & Barbara,

I have the same sensation as you two. Maybe 5x a year, my left forearm on the underside feels like I have a sunburn! No redness, rash or anything! I just finished an episode this morning! Had it for 2 days. This time it also went to my elbow. I told my husband it felt like a bad sunburn, couldn’t stand any clothes or people to touch it. So is this for sure a fibro symptom or something all its own? I am soon seeing a rheumatologist bc of my joint pain and muscle pain. Im convinced I have either fibro or lupus.

I’ve had M.E for 20 years. In 2009 I developed this ‘burning/seneitive skin’ thing. It sent me half demented. I couldn’t dress at all. I thought I would never ever get better. Fortunately in Feb of this year (2011) and since then I’ve been fine. Don’t know how it improved (although I am happier in my personal life and therefore happy mentally/emotionally and physically which I put down to alot of it!)…alot of mine seems to be related to anxiety too as the burning gets worse when I’m anxious.

Thought I’d ‘kicked it’ but in the last week, after a particularly stressful time and having been sick with flus etc…my skin has started to burn again. GRRRRRRRRRR!!!

Totally freaking out. Have no idea what to do, what it is or how long it will last. But at least I can say that it DID get better and maybe this 2nd outbreak is just a ‘reoccurence’ and not a major setback like the first time…its just my body is rather run down.

So there is hope folks. Any feedback useful.

I have been suffering with this since May 2010. Woke up feeling like an intense raw sunburn across my upper back and shoulders. Now 19 months later both arms and hands,upper back, shoulders, neck, and thighs burn nonstop every day. I feel like I am going crazy from the pain. Luckily Ambien gets me to sleep and a cool fan and that is the only time I am not burning and in pain. Have tried Lyrica, Neurotin, guarbetin and Cymbalta and none have made it any better only bad side effects. No life- I make it out of the house once a month-to a doctor’s appt. – wearing clothes is like having a severe sunburn and wearing burlap or a robe made of star thistles. Any advice or help from anyone would be a godsend. I miss being able to wear clothes (all I can tolerate is the satiny pajama material and then I have to wear even those inside out because it is softer- the inside is more scratchy) It is ridiculous and I am exhaused looking for help. Please help.

I looked this up because I’m going through a bout of this right now. I first experienced skin pain when I had the flu back in 2000 or 2001. The skin on my upper arms, thighs, ribcage, and upper back felt like it was on fire. No rash, no redness, just PAIN. Clothing of any kind made me want to cry. I lived for a week wearing nothing but a very light, thin nightgown because anything else cause excruciating pain. Thankfully, since that first time, the pain isn’t as intense, but it almost always comes on when I run a fever. The problem is, I am not running a fever right now. I keep checking, but nothing. I’ve been taking Excedrin and ibuprofen to try and dull the pain enough to get through the workday, and it is barely enough.
I read a comment here that suggested shingles.. I’ve always wondered that, but the absence of a rash made me dismiss that possibility. I had chicken pox twice when I was a child, so I know Shingles is a possibility later in life (I’m 38 now). Anyway, I’m glad I found this – I’m not the only one

Hi. I found out I had fibro 2 yrs ago. I have a bunch of weird symptoms and my docs just say I don’t know a lot to me when I ask them about it. So I am wondering if anyone out there has the same issues too. I have the really bad pain sensitivty too but its on my face torso and armsif I scratch an itch it feels like the skin is ripping off and it comes and goes it always seems to happen when the real bad cold sweats hits I wake up soaked but bone chillingly cold. But I also have problems with my feet swelling up and popping noises in my ear and jaw. I also get real itchy at night sometimes it hurts to move my eyes. At night my feet feel like they r on fire but other nights they r ice cold. My hands swell up too my scalp hurts also. I also get dizzy a lot around the same time every evening but that comes and goes too. Another weird 1 is and my doc thinks I am nuts but for exmple 1 day I had to tell my husband something about the door but for the life of me I couldn’t figure out the word for door when I finally figured out it was a door I spelled it out. It didn’t sound like I spelled it right so I asked my husband to spell it figuring I spelled something so easy as door wrong but I. Spelled it right but it sounded weird then bout 5 mins later it sounded fine and this happens every so often with simple easy words. But I feel like I am going nuts not knowing what’s wrong with me all my tests come back fine also. I have had fibro since I was 25 and now am 31 just diagnoised 2 yrs ago but as I get older everything seems to get worse all the pain and weird things that r going on so I figured I would give it a shot to see if any1 else has some of these problems too. Any insight would be wonderful. Thank you for reading this.

Nicki,
You are not crazy. Welcome to the world on Non-sense medicine. What works for you may not work for me. That is why we post what does help and hope for the best. I have Migraines, Fibro, Spondylitis and this allodynia. My MD has put me on 25000 mg of vit D(prescription only) 3 times per week. I am finally seeing some help with both the allodynia and fibro. This is definately where Doctors are “practicing” medicine. I also have sleep apnea so not getting enough sleep elevates my pain. I sleep whenever I can. even if it is naps because I don’t sleep through the night. Read all info you can, then try things suggested. Try them for 2 to 3 weeks before you give up on them. For me the cold things drive my skin crazy but the warm things really help. Everyone thinks I am crazy because I hate any kind of massage. It feels like I am bruised and beaten when I am finished. It is not relaxing but very stressful. I love a good hot whirlpool or spa. Also a good steam room. Good Luck and find ways to be positive. You will get through it although there are days you want to give up. Make it about conquering the symptoms, not letting them conquer you.

I think I have this all I can describe it as is painful skin feels like sun burn and hurts like hell especially when you touch it what is it? How is it caused and what are the treatments please someone help me thank you xx

Hi, ive had this weird pain for about 1yr now, it started under my right arm, then down my right side including my foot, everything was half numb and felt like i was not really here! I could hardly brush me teeth, or apply my deodrant due to the coldness of the toothpaste and the deodrant, the feeling made me cringe. I also had this awfull sensitive feeling which was mainly in the inside of my right arm to the wrist, but included my elbow as well. The sharp stabbing pains make me shout out, they are in my shoulder too. I started to walk like a disabled person, i couldnt control my LEFT leg???? i ended up having neck/back surgery to replace 4 worn out discs, and untrap nerves, we hoped the op would solve this problem (allodynia?) the op was mid november and by mid december i was in agony again, I am still in recovery and hoped to be free of all this pain after such a big scary op but no im back on the list to see my neurologist again. I am taking amitriptylene which block out the pain, itch and some of the sensitivity
and allow me to sleep far too many hours, i am now praying for some
other relief when i get an appointment through, i cannot even stand my
own breath on my arm and wear a worn out (loose) tubagrip so that nothing touches it. I think this is one of the worst pains and irritation
ive ever experienced, i am 55. Hope you all find some relief, good luck

I have this but I have it ALL OVER my body. Like my entire skin is covered in bruises and sunburnt… I CANT wear a bra it’s gotten so bad and of course I can only wear very light soft clothing. Is there such thing as a lidocaine cream? That seems like that would be very effctive because I would need to covered in lidocaine patches for any relief and don’t wanna have to go to the hospital every time my skin hurts….

Can this type of tactile pain be isolated to one spot on the body?

I noticed a few days ago that my left hip is so sensitive to the lightest touch. The sensation is almost like touching a sunburn. I can’t imagine that something like this could literally develop overnight, but it hasn’t subsided one bit since i first started feeling it. There are no visible differences in the area – everything looks exactly as it did before. No one understands what I’m going through, it hurts to wear anything around my waist – especially elastic bands that sit right on top of the spot that hurts most.

I have tried taking pain medications (advil and aleve) but neither of those helped. How long should I allow this symptom to continue before finally seeing a doctor?

I burn all over, head to toe with concentration in my palms and from the knee down. This is so distressing to me cause it does not make sense…I can have nothing touching my skin, and it still feels like I am on fire (but always cool to the touch)!!! The more hip and back pain I have, the more intense the burning and headache become. I have tried the above remedies, but anything I put on my skin seems to make it worse.

My first flare up from fibromyalgia was seven years before I was diagnosed. It “featured” the burning skin as the over-riding symptom with all the other aches and pains moving at random around my body for about a week. I thought I was losing my mind (or already had)!

That was more than 25 years ago. I have managed to learn a lot about fibromyalgia…mostly through trial and error.

If anyone has found clothes with soft fabric, comfortable seams, no labels, and loose lines, I would dearly love to find your source. Finding comfortable clothes has been the hardest part of the journey for me.

If I can find a reliable source for truly comfortable clothes (underclothes as well as regular clothes), I will begin carrying them on my website to help people with fibromyalgia find what they need more easily.

I read a lot of the posts here. I have the same condition and what is the worst is that it is painful for me to sit! I just put up with the pain and try to go on. My skin hurts all over, too.

I just want let all of you know that I am sending you hugs, no, that might hurt! I am blowing wishes of wellness to all who suffer from painful skin!

My pain started 9 months ago when one day i lightly brushed the side of my head just above my right temple and felt an electric shock pain shoot into my head, only lasted a second but every time i lightly touched the area it would do the same thing, area is only the size of a small coin! Triggers for it are putting clothing on over my head, showering and having the water run over it, when sleeping i can feel pain when my head rubs on the pillow, even having wind blowing on the area triggers it! I’ve had it every day for 9 months now. I went to the docs they gave me Amtripylin which did nothing ,also taken prednislone, gabapentin these did nothing also. One suggested it could be temporal arteritis i had a biopsy done which came back negative, I have had blood tests done for various things all of which came back fine. I had an MRI scan on my head and am awaiting the results. I was wondering if other people that have had this condition for a long time have had it start out as a little patch of sensitive skin that over the years has spread and got worse? Any suggestions as what can ease the pain or even get rid of it would be a great help. I sometimes feel a throbbing in the area on odd occasions also but other than that the pain only arises when the area is lightly touched. One more thing is over the last 4 months i have a throbbing aching pain in my right leg which can hurt in my thigh, knee, shin and foot. It is not there during the day when i am walking around and doing general things, but when i stand and straighten my leg and twist it i get a pain that radiates in my thigh and down my leg. It usually occurs when i am resting on the sofa with my feet up or in bed at night, sometimes the pain wakes me up. I have it now while i am sat here typing this it is throbbing in my shin. Note that this does not occur when touching the area but i was wondering if anyone else has also had this problem with their pain symptoms? I would be grateful for any replies.

Does anyone ever have really bad throbbing leg cramps at night, not when touched just leg aches when resting in bed or with feet up on sofa. Pain is in thigh and around knee and in shins and foot. Mine is only in my right leg.

Try Calmare therapy !!! It worked for my 12 yr old and it seems to work (giving zero pain or at least lessening the pain) for about 80% of neuropathic pain.

I am sorry for you all, I have been living with this for two years at times I can not even pull myself out of bed. I will get flare ups in the sun, when it is cold I wave to control the temp around me at all times. In the last few months I developed very sensitive skin only in the upper and lower waist that does feel like a sun burn. I am relieved to know I am not the only one suffering from this weird pain ontop of the FB. It is really hard due to the fact know one around you understands what you are going through and do think you are crazy. My sudden onset was from a simple injury a bump to my leg than I swelled up and it has been an up hill battle ever since.

You can certainly see your skills in the paintings you write. The sector hopes for more passionate writers like you who are not afraid to mention how they believe. Always go after your heart.

My right arm started bothering me a few years ago and has gotten worse and worse. I have tried everything Including vitiamins, supplements and topicals like Emu Oil which helps a little at best. I finally had to purchase a “Copper Sleeve” from Tommie Copper which helps me when I have to wear long sleeve shirts. I light touch bothers me and is painful but a firm pressure does not. I have just accepted I have to live with this painful condition.

This site is informative. I read a lot of the comments. My experience started when I thought I pulled a muscle in my right hamstring in December 2011. The sensitivity lasts a day to 3 days and goes to another area of the body. Mostly, in my buttocks, hamstrings, and even in the private area and rarely in my feet and ankle. However, I seem to be able to tolerate the pain and just wait it out to go away and hope it won’t come back. I have no problem with wearing bra and clothes. But when it’s very close to the private area, sitting down can be uncomfortable. What helps for me is to have a shoulder, neck and upper back massage and I sleep very well. I am a Christian and I pray about it, that God help me to restore my body and take away the pain and illnesses that I have. I am 61 years old, goes to the gym, pretty active, positive, and married to my one and only husband who is also a practicing Christian. To all of you who are suffering, try praying and ask for God to help.

SAD BUT TRUE! MOST DOCTORS TODAY REALLY DO NOT HAVE CLUE WHAT IS F/M. i`VE HAVE ETXREME PAIN & SKIN SENSITIVITY & MY SMELL ISSUES R OFF THE CHART! I SMELL ANYTHING THAT TOXIC (CIG SMOKE OR ANY TOXIC) I BECOME VERY ILL…SAD !!! CLOTHING: NO BELTS OR ANYTHING TIGHT …OH I FORGET 2 MENTION I HAVE CANCER (NON-HOPKINS LYMPHOMA) PLEASE IS THEIR ANYTHING THAT I CAN TAKE OR DO TO HEL MY F/M ISSUES.

Thank’s for the article. For some time now I’ve been getting wierd pains that only hurt from light contact instead of intense pressure, which is the opposite of what I’ld expect from a bruise or fracture. They happen mostly around my ribs and on the opposite sides on my back. I also have absolutely terrible sleep patterns; I’m so very tired all the time. After reading a little about this I wonder if I have fibromylagia, but I honestly don’t know. So many of the symptoms mentioned here have happened to me at one time or another, while others have not. The scalp pain is very familiar, the sleep problems, the pain symptoms (but chest area only, nothing in my feet or limbs), the depression, lack of concentration and memory problems, etc. However, how can I be sure that this is what’s happening to me? The ratio of male to female incidence is something like 1:9 [wikipedia] so that would put me in the more unlikely catagory. Also, what can my doctor do to help me? I really, really want to stay away from some prescription I’d have to take for the rest of my life if I can’t help it. Not to knock the miracles of modern medicine, but the last thing I need is a ketamine addiction or another monthly bill.

Thanks for this article, like so many others I feel a sense of relief in discovering this site. My issues have been around for years and seem to be getting worse as I get older, I just turned 60.
The pain I predominately experience is in a band around my belt line, I have been jokingly calling my condition “cancer of the pants line” for years. I have irregularly attacks but once a month would be a fair average. An attack will last two or three days and I have not been able to isolate a trigger for them. I have had the same stupid looks from doctors so gave up there after an xray of my spine didn’t show a nerve issue.
I too can’t stand tags on clothes or loose nylon threads. I can’t say it is debilitating yet but it goes close when apart from the sunburn sensation I get the shooting electric shock pains that make my scream. I will try the emu cream as there seems to be some consensus that it does give relief. I live in Australia so I might just go out and hug an emu and see if that helps.
Regards

This question might be stupid but when I touch something cold or freezing like a can drink or a frozen food I have severe pain in my finger tips. Like a horrible burning feeling and my fingertips turn bright red but I’m usually not holding it for long at all so it’s really weird to me! Could this be related? It just kinda freaks me out sometimes because i can’t hold anything cold for a long time.

I have the “sunburn” pain too from fibromyalgia. I have sisters that have had shingles and they describe the same feeling when they have a breakout. I seem to have the pain after stress in my life like someone could have when a shingle outbreak is triggered. My pain is on my butt, around my thighs and on the pads of my feet. Tramadol helps and Lyrica has controlled it quite a bit. I know others that have the same skin pain and have fibromyalgia.