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Allodynia: Anyone else sensitive to touch?

Neuropathy | Last Active: Dec 23, 2023 | Replies (136)

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@rwinney

@mindfulness Hello there, I'm Rachel, it's nice to meet you. I'm grateful @johnbishop shared Dr. Sletten's video on Central Sensitization, and I'm happy it resonated with you and your husband.

I'm very sorry your husband is dealing with pain from Allodynia and all of the side effects from meds in trying to control it. As you learned, CSS is an umbrella to many chronic conditions, including Fibro and Allodynia. Once upregulation of the Central Nervous System and/or Peripheral Sensory System of motor and sensors occur, it can become a snowball effect, as you're finding out. How long ago was your husband diagnosed with Fibromyalgia? Do his doctors conclude Allodynia has resulted from Fibromyalgia? My local doctors did not know how to treat my various neurological conditions either. What I learned was that these conditions require more than medications, they need a long term management plan. That plan consists of therapies to help you respond to pain in a different way and learning strategies to live with chronic symptoms.

I understand your frustration of learning there is a 2 year waiting list at Jacksonville Pain Rehabilitation Center. I waited a while, but not 2 years. Minnesota and Arizona also offer the program. Might you consider trying those locations?

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Replies to "@mindfulness Hello there, I'm Rachel, it's nice to meet you. I'm grateful @johnbishop shared Dr. Sletten's..."

Hi Rachel,
Thank you for reaching out. My husband has been having fibromyalgia/myofascial symptoms for over 30 years which he has handled without the use of medications, but the allodynia just started a couple of years ago. He has tried some therapy but has had difficulty accepting the pain, as it is too severe for him to tolerate. Unfortunately we would not consider Minnesota because the trigger for my husband's allodynia is the cold. Arizona may be an option, but he would not be able to get in until September at the earliest.

Do you have thermal allodynia? What types of medications have you found helpful?

Has anyone on this site had success with the neutral temperature pool therapy?

Does anyone know if there is an association dedicated to allodynia or central sensitization? We are looking for more information, but there does not seem to be much on the web and most of the doctors we have seen don't know much about this.

Thank you again, Rachel.