Allodynia: Anyone else sensitive to touch?

Hi John,
Thank you for your response and suggestions. What kind of pain management are you referring to? Medication? My husband has tried various medications for fibromyalgia, but he is so sensitive to medications, he is not able to tolerate the side effects which cause additional problems for him, such as insomnia, digestive upset, nausea and sedation, without significant relief of symptoms. Do you know of any doctor or clinic that specializes in treating symptoms of allodynia? We live in the Washington DC area and sadly have not been able to find someone who has deep knowledge of allodynia. We are also wondering if there is an allodynia association that might be a resource. It is so sad to see people suffering from this with not much information on how to treat it. Thanks again, John.

Hi @mindfulness, Here's a video posted by @rwinney in another discussion that talks about Central Sensitization and the Mayo Clinic Pain Rehabilitation Program.

Thank you so much, John, for sending the video. It was very interesting. We called the Pain Rehab Center in Jacksonville today to see if we could sign my husband up but were told there is a wait list of 2 years! If anyone has suggestions for a physician who works with allodynia patients or any other materials you can share, please let me know. We would really appreciate if you could share that with us. We are desperately trying to find out more about this and how to treat it. Thanks again!

Two years, that’s outrageous. Why can’t they hire at least another physician. It bad enough dealing with this stuff than have to put up with that.

@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?

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.

Does anyone know of a doctor at the Mayo Clinic that may be able to make a telehealth appointment with to talk about allodynia? We really need some guidance...and something to give us some hope. Thank you!

@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?

Thank you so much for sharing your experience with us. My husband is only using OTC medications and some CBD oil, which are not very effective. He has become very anxious and panicky due to these sensations and the frustration of not being able to control the burning pain all over his body. We live in Northern Virginia, and he has had a very hard time this winter. He's tried various medications but experienced side effects, (stomach issues and insomnia) so discontinued. He has not tried Lyrica yet. Do you mind my asking what dose you are taking of the Lyrica that seems to work for you and whether you experience many side effects?

We were told the Mayo's PRC in Jacksonville was not taking new patients but sent the referral and notes anyway, just in case this changes.

Thank you again for your kindness!

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