Allodynia: Anyone else sensitive to touch?

I feel like I am sunburned, but I'm not. My skin hurts all over, even when nothing is touching. For instance, I am wearing a short sleeved t-shirt and my arms hurt. My face hurts. I will see my regular physician this coming Friday. I am hoping she might have some answers. I used to have an occasional bout that would last 24 hours or so. I have now been in this flare for days. It saps all of my energy, and it is much harder to concentrate, even small tasks like pouring a cup of coffee and remembering to put it in the microwave to heat it. And I have sleep deprivation. What I have read so far since I joined this Mayo Clinic site is people have localized pain like this. My pain is all over my body. I rarely have migraines. Has anyone out there found a doctor and medication that helps?

Hi. I am so glad to find this board. Reading all these post that other people are experiencing the same thing I am, I don't feels so crazy or like a hypochondriac. I have areas of my body that have this pain everyone talks about and as much as I hate self-diagnosing via the internet, doctors have left me no choice. How do you tell a doctor how painful this is and there is nothing there to see?? So my first bout was on my ankle about 15 years ago and it was excruciating to have my jeans rub on it. It lasted about 2-3 days so I just blew it off. It was a while before my next bout but some last up to a week. At first I thought it was the onset of shingles but nothing ever showed up on the skin. Talking to my sister and my Dad, they have both experienced this as well and never knew what it was (btw, my dad hasn't been to the doc since 1984) so my guess is that it may be hereditary. I never brought it up to a doc until Feb 2020 because that time I had it on a large portion of my thigh and it lasted a MONTH!!. I eventually tried a lidocaine patch but it would only help for about 30 minutes. Also, had it on my torso and shooting pains at the crown of my head (that was the worst!!). Of course by the time I went to my dermatologist a couple months later, the symptoms were gone. I went ahead and mentioned something about it to have it on record. I told her the only thing I saw online that described what I was experiencing was Allodynia so she did some research and told me that she could offer the compound Ketamine and lidocaine (I think I saw someone else post this as well) but that it was like $70 a tube and not covered by insurance but that if I need it, she will call it in to a drugstore. The only problem I see there is that I could only have this happen maybe twice a year and the meds would most likely expire...ugh! Anyway, I am dealing with it once again this week. It started with sensitive "sun-burned" type sensation on the right side of my forehead and on the side of my head in front of my ear...stabbing pain. Of course, I don't want ointment in my hair so I have been using Aleve and ice packs to help. The last two mornings I have woken up pain free but as I am doing my hair or cleaning my ears after my shower, I noticed it triggers a flare up (probably b/c this time it is near my ear...then back to the Aleve. I am on day 4 hoping this ends in the next day or so. Thanks for all the info folks 🙂

Wow, your condition doesn’t sound exactly like the ones above but it sound exactly like something that happens to me. Just a hypersensitive area for a few days to a few weeks, then gone. I find it annoying but I also have discovered the lidocaine roll ons, in the over the counter dept. Have you tried the alive roll on yet?

Hi. I am so glad to find this board. Reading all these post that other people are experiencing the same thing I am, I don't feels so crazy or like a hypochondriac. I have areas of my body that have this pain everyone talks about and as much as I hate self-diagnosing via the internet, doctors have left me no choice. How do you tell a doctor how painful this is and there is nothing there to see?? So my first bout was on my ankle about 15 years ago and it was excruciating to have my jeans rub on it. It lasted about 2-3 days so I just blew it off. It was a while before my next bout but some last up to a week. At first I thought it was the onset of shingles but nothing ever showed up on the skin. Talking to my sister and my Dad, they have both experienced this as well and never knew what it was (btw, my dad hasn't been to the doc since 1984) so my guess is that it may be hereditary. I never brought it up to a doc until Feb 2020 because that time I had it on a large portion of my thigh and it lasted a MONTH!!. I eventually tried a lidocaine patch but it would only help for about 30 minutes. Also, had it on my torso and shooting pains at the crown of my head (that was the worst!!). Of course by the time I went to my dermatologist a couple months later, the symptoms were gone. I went ahead and mentioned something about it to have it on record. I told her the only thing I saw online that described what I was experiencing was Allodynia so she did some research and told me that she could offer the compound Ketamine and lidocaine (I think I saw someone else post this as well) but that it was like $70 a tube and not covered by insurance but that if I need it, she will call it in to a drugstore. The only problem I see there is that I could only have this happen maybe twice a year and the meds would most likely expire...ugh! Anyway, I am dealing with it once again this week. It started with sensitive "sun-burned" type sensation on the right side of my forehead and on the side of my head in front of my ear...stabbing pain. Of course, I don't want ointment in my hair so I have been using Aleve and ice packs to help. The last two mornings I have woken up pain free but as I am doing my hair or cleaning my ears after my shower, I noticed it triggers a flare up (probably b/c this time it is near my ear...then back to the Aleve. I am on day 4 hoping this ends in the next day or so. Thanks for all the info folks 🙂

Wow, your condition doesn’t sound exactly like the ones above but it sound exactly like something that happens to me. Just a hypersensitive area for a few days to a few weeks, then gone. I find it annoying but I also have discovered the lidocaine roll ons, in the over the counter dept. Have you tried the alive roll on yet?

Hello @welovergirls, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It's interesting to hear that your father and sister have also experienced the same symptoms. Sorry to hear that the doctors have mostly not listened to you. I'm glad that you got it on record. I think it's good to plan your visits to the doctors and be prepared for what you want to ask before you actually have an appointment. A great site to help with that is PatientRevolution.org - https://patientrevolution.org/visit-tools

I found an article that speaks to genetics may play a part in the condition that I thought you might find interesting if not helpful -- Study identifies gene that makes gentle touch feel painful after injury - NIH-funded research raises possibility of designer treatments for common form of pain:https://www.nih.gov/news-events/news-releases/study-identifies-gene-makes-gentle-touch-feel-painful-after-injury.

This is an older article from 2014 but I thought it may be helpful -- Immersed: How I Found a Way (After Decades of Trying) to Help My Allodynia and Nerve Pain: https://www.healthrising.org/blog/2014/06/15/immersed-found-way-decades-trying-help-allodynia-nerve-pain/

Do your father and sister still have flare ups? Just wondering if they made any changes that helped their symptoms.

Hello. My husband is really suffering. He has fibromyalgia and developed thermal allodynia over the last couple of years. He has symptoms when it is cold (even in the house) and when he sweats. Winters here in Virginia are very cold, so it has made life very difficult. We have been to multiple doctors, primary care, rheumatologists, etc., but surprisingly no one really has a very good understanding of allodynia. My husband tried medications that are supposed to help but they did not help too much and he could not continue with them due to side effects/sensitivity to medication. Couple of questions: Does anyone know of a doctor with knowledge and experience with allodynia? Also has anyone had any success with Aleve or any other medication that can help his thermal allodynia? Does anyone know about a doctor/practitioner who does desensitization techniques for thermal allodynia? Is there a good book about allodynia that has more information? We are willing to go anywhere. We need something that works and would very much appreciate your input. We are desperate. It is so difficult to see my husband suffer 24 hours a day, even though we keep the house at 80 degrees.