Does Anyone Else Have Allodynia?

[Katybug]

I think I found what to call this terrible soreness in my skin...allodynia. Does anyone have this as an official diagnosis/symptom that could tell me more about it?

[Guest mattgreen]

Yes to thermal allodynia. Most noticeable in hands, feet and to a lesser extent my face. Not diagnosed.

It's like an overactive response to temperature - when cold my hands will numb, ache deeply and become translucent. When hot they will burn painfully and be bright red.

[Kellysavedbygrace]

I have severe Allodynia (diagnosed by my neurologist before diagnosis of POTS- however it is a result of the autonomic dysfunction.) When I'm very symptomatic I cannot handle touch much at all. Light touch is especially bothersome, a hard strong touch is ok. It is amazing how often people touch me ( such as a pat on the shoulder, hug at church, rub of my arm because in my pre POTS state I was a very touchy feely person. Not now. - I've learned to grin and bear it but if I know you well I will tell you to stop.) Even the wind/ fan on my skin hurts like a million tiny pin pricks. Part of my POTS presentation is hypersensitivity in all senses- light, touch, sound, smell, motion. (Sensory Integration Dysfunction.) On a good day I can handle some of these but not on a bad day.

[Katybug]

Thanks for everyone's responses.

Kelly - Was there testing to diagnose this (I haven't seen any mention of it in my research) or is it diagnosed simply by your clinical symptoms/evaluation? Any decent treatment that doesn't include extremely addictive drugs?

I have what seems to be the in between version...very light sensation is ok for me (being touch with fabric gently) and very strong sensation is ok for me (having my reflexes tested), but, in between like scratching an itch or being hugged just plain hurts. It feels like someone pressing on a bad bruise and then it actually hurts worse for about 30 seconds afterward. I had an abdominal ultrasound the other day and it was all I could do not to crawl off the table especially everytime the tech got near my rib cage with that thing. All I could think was...I don't know anyone that has ever complained that their ultrasound was painful..people are going to think I'm nuts. That's when I knew I needed to figure out what this was really all about.

I asked my immunologist today if he's familiar (even though I know its not really his "specialty") and he said with all the inflammation in my body he wouldn't be surprised that this process was going on with me.

[Kellysavedbygrace]

No, Allodynia is assessed by clinical exam. When I described symptoms to my Neuologist he told me it was Allodynia- but not a Dx as much as a clinical description for this sensory symptom of touch defensiveness. There is no specific treatment that I know of. To my knowledge no FDA approved drug for this. Is this a new symptom for you? Mine has been present since onset of Dysautonomia.

[looneymom]

I'm glad you asked this question. My son has a very sensitive scalp and hair cuts are unbearable. Before he was diagnosed with pots, he could not stand to be touched and refused to wear socks because it felt like pins and needles. He is finally able to wear socks and have a sheet next to him. But like you, I would really like to find something to help with the scalp pain.

[Katybug]

Looneymom - There is a really good explanation of allodynia on Wikipedia. I do have tenderness in my scalp and my hair stylist is really good about trying to be gentle. I wonder if you could find a pain reliever that your son could take just when he's going to get a hair cut and maybe take it an hour or so ahead of time.

Kelly- no it's not new. It showed up 5 yrs ago with the babesiosis and Lyme disease. It has always been there since but had been less severe for a while. Since my migraines flared at the beginning of the summer so has the allodynia.