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Allodynia: Anyone else sensitive to touch?
Neuropathy | Last Active: Dec 23, 2023 | Replies (136)Comment receiving replies
I have thermal allodynia to the cold. It's been very tough this winter. I have had chronic pain/fibro for many years but developed burning pain over my tender points that has become excrutiating. Can anyone share what they have used to help these symptoms, what medication/dosage or any other tips on how to alleviate this burning. It's almost impossible to find a doctor that knows how to treat this. Does anyone know of an association that specializes in allodynia in particular? It's been difficult finding information. Thaks
Replies to "I have thermal allodynia to the cold. It's been very tough this winter. I have had..."
Hello @hrod. I am sorry to hear of your burning from allodynia, and fibromyalgia challenges over the years. Winter is challenging for me as well. I have experienced burning also as part of my central sensitization condition. I tried all of the creams and they did not help enough to warrant continued use. Unfortunately, pain stems from the brain which is why all too often conventional medical treatments don't help for things like fibro and central sensitization syndrome. I do take Pregabalin for some assistance, but I still need to manage symptoms beyond. Do you take nerve medication?
I found help at Mayo Clinic's Pain Rehabilitation Center (PRC). This program treats allodynia, fibro, CSS, neuropathy, migraine, and more. I am unaware however of a specific allodynia association. Here is information about Mayo's Pain Rehab Center which is a incredible comprehensive pain rehab program:
The reason doctors do not know how to treat allodynia and other nerve related dysfunctions, is that sadly, it boils down to no medical treatments provide the help we are looking for. It takes self-care, lifestyle changes and self-help with physical, emotional, and behavioral management, and most importantly acceptance.
I'm sorry, I know these may not be the answers you were looking for. I wish it were easier. Maybe someone will chime in with something that has helped them with allodynia, Until then, do you mind watching this video from Mayo Clinic's Dr. Sletten which educates on chronic pain and symptoms?
- https://youtu.be/vJNhdnSK3WQ
Will you please get back to me with your thoughts on what I've presented?
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Hello @hrod and welcome to Mayo Clinic Connect. I am sorry to hear that this winter has been so tough with your allodynia. It can be comforting to find others like you who understand, so I am glad you are here and reaching out.
You will see that I have moved your post into an existing discussion on Allodynia here: https://connect.mayoclinic.org/discussion/alloydinia/
You can click there and scroll through previous members' posts to see what you can glean from what has already been shared. As well, I would like to bring in members who have more recently contributed to see if they will join you. @mindfulness @rwinney are two members who could be of help to you.
When were you diagnosed and what are you currently using for your symptoms?