Allodynia: Anyone else sensitive to touch?

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?

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:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

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?

Hello Rachel,

Thank you for sending the links for information and the video. Very interesting. I will look into this further.
I am having a hard time dealing with my pains. There are so many people with these kinds of symptoms and very few places to turn to. I recently started taking Tramadol very occasionally, which I do not like to take regularly. I'm very anxious about the pain. You say Pregabalin helps you some. This is something I haven't tried before. How much Pregabalin do you take to be able to get some relief?

I also read a few articles about desensitization and am wondering if anyone has had success with this.

I would appreciate also if you could get back to me with your thoughts and also about the Pregabalin.

Thank you again.

I take 450 mg of lyrica and 600 of tramadol daily. Does not completely cover the pain. But it does help. Tramadol is really like Tylenol on steroids, even though it is addictive. The lyrical is an anti seizure med. it apparently interrupts the pain signals.

@hrod You're welcome! Regarding my Pregabalin dosing, each of us respond differently to medication. The doseage that works well for one, does not necessarily work well for the next. Some folks may not be able to tolerate the medication at all. Doseage is best discussed with your primary care physician based on your symptoms, health history and tolerance. Pregabalin (Lyrica) and Gabapentin (Neurontin) are well known classes of nerve medication that take time to tweak and find appropriate dosing.

I caution about Tramadol as it is an opiod and can actually enhance allodynia. This is called opiod induced hyperalgesia. Please find more info on opiod induced hyperalgesia here:
https://www.verywellhealth.com/opioid-induced-hyperalgesia-and-allodynia-4149530
One of the best things you can do for yourself is to be aware and have knowledge so you can be your best advocate while managing your health. Do you have family or friend support?

May I ask what you do for positive distraction when things get heavy and you are feeling anxious? Have you explored any self-help tools for calming yourself?

Thank you very much. I understand everyone responds differently to medication and you have to discuss this with your doctor. I was interested in your dosage of Pregabalin to see if it could possibly work at a lower dose because of my sensitivity to side effects from medication. It seems you have symptoms that are similar to mine. Are you taking a low dose of Pregabalin? I read that for Gabapentin to work on allodynia you have to take in the thousands, which to me would cause too many side effects to make it worthwhile. I am trying to decide on which medication I can try at a lower dose in order to not have to rely on the Tramadol.

Honestly I'm having a hard time distracting myself this winter. It was much easier to do so in the warmer weather.

wwenerowicz: Thank you also for sharing your regimen. It's helpful to hear what others are using to help symptoms. Do these meds help with anxiety also?

There are some folks who take these drugs and claim a high. That’s why the fDa/Ada is currently make these a scheduled drugs. Lyrics will produce seizures if taken above the recommended dosage. I have never felt the slightest feeling of euphoria, or calmness. So the long answer is I don’t believe these drugs produce an anti-anxiety effect.

@hrod I take 400 mg. Slowly increasing the dose helps with side effects.

You may find this Mayo Clinic blog about mediation helpful regarding your anxiety:

- https://connect.mayoclinic.org/newsfeed-post/meditation-as-a-practice-for-chronic-illness/

Hang on tight...spring is on it's way and winter will be a past memory.
🌼🌷🌻

Thank you very much. I have not tried the Pregabilin yet. In a week I will have to decide whether to take the Pregabalin or Gabapentin and I'm on the fence. Have you ever tried Gabapentin?

I do try to do some meditation and find it somewhat helpful, but there are times when I am not able to concentrate very well due to the burning. I keep trying though.

@hrod I've tried both but can't honestly remember the difference, it was a while ago. What does your doctor recommend?

I love that you say you'll keep trying meditation. Breathing, stress management, proper nutrition are all things you can do to aid in coping with and trying to quell your discomforts. We're all in this together. No, there is no magic pill and yes, we have conditions that aren't going away, and that really sucks, but physical activity, moderation and modification approaches, plus behavioral changes can help. Even if you just focus on one change at a time it can bring benefit. Would you ever consider attending Mayo's Pain Rehab?

Keep trying, my friend, I believe in you.