Allodynia

Posted by maria7521 @maria7521, Jul 22, 2018

Has anyone hear of the term allodynia?

Interested in more discussions like this? Go to the Neuropathy group.

Yes, sadly. My problem is it hurts my feet just to have the sheet touch them

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Hi @indiana9,

Welcome to Connect. Allodynia can be a symptom of several different nerve conditions, or it can occur on its own. Someone who has allodynia feels pain from non-painful stimuli. For example, a person may feel pain from a light touch or when brushing their hair. https://www.healthline.com/health/allodynia

I'm tagging @mloren @3michele3 @keyoeste1 as they've shared their experiences about very similar symptoms; you can view the discussion here:
"Electric Shock" type pain in my scalp! https://connect.mayoclinic.org/discussion/electric-shock-type-pain-in-my-scalp/

How long have you had symptoms of Allodynia, @indiana9? Have you had to make lifestyle changes to cope with this condition?

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@indiana9

Yes, sadly. My problem is it hurts my feet just to have the sheet touch them

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If you go on Amazon, they sell piping structures to lift the sheets off your feet and they create a nice sheet free area for your feet.

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@kanaazpereira

Hi @indiana9,

Welcome to Connect. Allodynia can be a symptom of several different nerve conditions, or it can occur on its own. Someone who has allodynia feels pain from non-painful stimuli. For example, a person may feel pain from a light touch or when brushing their hair. https://www.healthline.com/health/allodynia

I'm tagging @mloren @3michele3 @keyoeste1 as they've shared their experiences about very similar symptoms; you can view the discussion here:
"Electric Shock" type pain in my scalp! https://connect.mayoclinic.org/discussion/electric-shock-type-pain-in-my-scalp/

How long have you had symptoms of Allodynia, @indiana9? Have you had to make lifestyle changes to cope with this condition?

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I've had it about 5 years. They haven't decided exactly what I have yet. Been seeing different drs for about 4 yrs, Had emg and they confirmed I also have small fibre peripheral neuropathy in hands and feet. They're still trying to figure out why. My brother has similar issues, only his are worse. He's been diagnosed with sjogren's and has ivig treatments every 3 weeks.. I see another rheumatologist at the end of August.

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Have you ever tried a different type of gamma globulin? Most infusion centers only stock one brand unless it is on back order. Ask your doctor about trying a different brand.

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@susanjc

Have you ever tried a different type of gamma globulin? Most infusion centers only stock one brand unless it is on back order. Ask your doctor about trying a different brand.

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they haven't tried the ivig on me yet, just my brother. right now i'm on nucynta (tapentadol), pregabalin and a compound cream that contains ketamine and lidocaine, among other things

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@susanjc

Have you ever tried a different type of gamma globulin? Most infusion centers only stock one brand unless it is on back order. Ask your doctor about trying a different brand.

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Hello @susanjc, Welcome to Mayo Clinic Connect. Do you or a loved one suffer from symptoms of Allodyna?

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@susanjc

Have you ever tried a different type of gamma globulin? Most infusion centers only stock one brand unless it is on back order. Ask your doctor about trying a different brand.

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I have chronic demylnatating neuropathy

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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?

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@gwen4

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?

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Hello @gwen4, Welcome to Mayo Clinic Connect. I'm glad to hear you have an appointment to see your regular doctor this coming Friday. Hopefully she will be able to figure what is causing your pain and suggest a treatment. I have no medical experience but your symptoms sound similar to Fibromyalgia. Here is an article with questions and answers on the condition.

Mayo Clinic Q and A: How is fibromyalgia diagnosed?: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-how-is-fibromyalgia-diagnosed/

Do you normally write down your questions for the doctor and take them to your appointment with you? I have found it helps so that I don't forget to ask them at the appointment.

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@gwen4

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?

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Hi- I’m so sorry. This was my very first symptoms. Most doctors can’t or won’t help.
I’ve tried savella, kepra n Lyrica. Just recently I’m trying Nucynta witch actually works pretty good. Until now only opiates seem to really knock th burning n nerve pain.
Salon pas numbing or any non capsaicin works too.
Prayers for you as I know even the bed sheets hurt🙁

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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 🙂

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