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Allodynia: Anyone else sensitive to touch?
Neuropathy | Last Active: Dec 23, 2023 | Replies (136)Comment receiving replies
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.
Replies to "Hi Rachel, Thank you for reaching out. My husband has been having fibromyalgia/myofascial symptoms for over..."
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@mindfulness My experiences with sensory hypersensitivity from CSS and nerve hypersensitivity of neuropathy include sunburn skin sensations, clothing irritability, frozen hands and feet that feel wet or like frostbite, irregularity of temperature control. I take Pregabalin (Lyrica), and learned many coping strategies at Mayo's Pain Rehab Center. I also weaned off hydrocodone. Opiates make CSS worse causing hyperalgesia.
Does your husband currently take nerve medication? How does he handle intense sensory and pain flares? How do you help him through it?
Here is a discussion on allodynia you may find helpful:
https://connect.mayoclinic.org/discussion/alloydinia/
Here is more information on treatments such as nerve medication, topicals, lifestyle change:
https://www.healthline.com/health/allodynia
Mayo PRC is the best place in the world dedicated to central nervous system conditions like allodynia, fibro, neuropathy, migraine, etc. ..
CSS is an umbrella over these chronic conditions. Have you spoke to someone at Jacksonville Mayo PRC? All you need is to have your husband's doctor fax his medical records, reports, tests. After review, they will schedule 2 virtual meetings with Mayo doctors to determine if he would be accepted. I have no doubt that he would be.
*Mayo PRC Jacksonville*
Request an appointment:
Physician referral is required for admission to any Pain Rehabilitation Center (PRC) program. The person's primary care provider or referring provider will be responsible for arranging other health care services if need arises.
Referring health care professionals can contact the PRC at:
Arizona campus: 480-342-6240
Florida campus: 904-956-1780
Minnesota campus: 507-266-5100
Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. All appointments are prioritized on the basis of medical need.
@mindfulness, pain stems from the brain which is why management of your husband's condition takes much more than just medication. You mention he has difficulty accepting the pain. So did I. I was a hot mess, in denial, in pain, anxious and depressed. It brought me and my family down for 3 years. Please believe me when I say there is help. You just have to trust the process. Will you please keep me posted on your progress, and let me know if I can be of further help?