I am 83 years old and have had fibromyalgia and IBS for thirty years. About two months ago I started having allodynia. That is a condition where my skin burns every day of my life. The only thing that gives me relief is to take Zanax. It lasts for about three hours and then my skin starts burning again. It makes me nervous and jittery and makes my blood pressure go up too high even though I am on BP medicine 3 times a day. I am going to a neurologist and he has had an MRI done on my Cervical spine and I have spurs on 3 of my disks. Does anyone else have this problem and if you do what do you take for relief. He has mentioned Lyrica. I have tried 30mg of Amitriptyline for 8 weeks and it did not help one bit so I am weaning off it.
If I am touched waist or lower, I feel vibrations down my legs...extremely uncomfortable. I have Peripheral Neueropathy...mostly numbness no pain in my legs. This disease is so variable from person to person with of course little to no treatment that does anything. I take 400Mg Gaba at night and honestly not sure why. At night, cramping and foot /leg spasms are my biggest issue. I do take Mag glycinate nightly as well for this. I am most uncomfortable when it is cold.
I also have allodynia. It is the most challenging part of neuropathy for me.
Fabrics that should not hurt my skin feel like sandpaper which aggravates the burning neuropathy.
@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?
@rwinney I have hyperalgesia now from tramadol withdrawal despite my 11 months of tapering. I was prescribed Tramadol and lyrica for 12 years --400mg tramadol.
while I expected pain like this nor the the insomnia up 24-40 hours at---hyper allergenic and other responses are surprisingly intense. My doctors helped me cut out pain , but little advice for now. I am doing the supplements and foods that are recommend but worry about my strategy going forward--all my doctors recommend Marijuana, but I have only used micro-dosing for the worst
@rwinney I have hyperalgesia now from tramadol withdrawal despite my 11 months of tapering. I was prescribed Tramadol and lyrica for 12 years --400mg tramadol.
while I expected pain like this nor the the insomnia up 24-40 hours at---hyper allergenic and other responses are surprisingly intense. My doctors helped me cut out pain , but little advice for now. I am doing the supplements and foods that are recommend but worry about my strategy going forward--all my doctors recommend Marijuana, but I have only used micro-dosing for the worst
Hello @dckuke, give yourself credit. It sounds like you're doing a fantastic job at reducing medication intake. Sorry to hear there's been some unwanted side effects but I'm wondering, have you considered a pain rehabilitation program like Mayo Clinic PRC?
Despite checking in, I did know of their program. I have polyneuropathy, plantar fasciitis and arthritis in every joint—almost zero feeling many areas of feet and ankles—which are deteriorating quickly. I know I will have a pain problem. Biggest issues are when Lyrica hit half life—then 2.5+mg micro dose thc. So, I know absolutely that I will need help with pain and maybe insomnia. What program do they have? Thanks for your interest
Despite checking in, I did know of their program. I have polyneuropathy, plantar fasciitis and arthritis in every joint—almost zero feeling many areas of feet and ankles—which are deteriorating quickly. I know I will have a pain problem. Biggest issues are when Lyrica hit half life—then 2.5+mg micro dose thc. So, I know absolutely that I will need help with pain and maybe insomnia. What program do they have? Thanks for your interest
@dckuke Mayo Clinic has 3 pain rehabilitation centers which focus on placing more control on the person versus doctors and the medical universe. It's about learning tools for management which is all encompassing - behavioral, physical, emotional and chemical. For instance, I dealt with allodynia which for me was heightened from central sensitization syndrome and some medications. In rehab, I learned to calm down my central nervous system and start removing fuel lines from the fire. It's about a lifestyle change, and learning and applying tools for future management.
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I've been prescribed Lyrica, which I've been taking for my Allodynia. I can't say that it has helped. So, I would pass. Jim
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1 ReactionI would loves to hear more about this
I also have allodynia. Unclear reason
But it's pretty unbearable, especially if it gets too warm
If I am touched waist or lower, I feel vibrations down my legs...extremely uncomfortable. I have Peripheral Neueropathy...mostly numbness no pain in my legs. This disease is so variable from person to person with of course little to no treatment that does anything. I take 400Mg Gaba at night and honestly not sure why. At night, cramping and foot /leg spasms are my biggest issue. I do take Mag glycinate nightly as well for this. I am most uncomfortable when it is cold.
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1 ReactionI also have allodynia. It is the most challenging part of neuropathy for me.
Fabrics that should not hurt my skin feel like sandpaper which aggravates the burning neuropathy.
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1 Reaction@rwinney I have hyperalgesia now from tramadol withdrawal despite my 11 months of tapering. I was prescribed Tramadol and lyrica for 12 years --400mg tramadol.
while I expected pain like this nor the the insomnia up 24-40 hours at---hyper allergenic and other responses are surprisingly intense. My doctors helped me cut out pain , but little advice for now. I am doing the supplements and foods that are recommend but worry about my strategy going forward--all my doctors recommend Marijuana, but I have only used micro-dosing for the worst
Hello @dckuke, give yourself credit. It sounds like you're doing a fantastic job at reducing medication intake. Sorry to hear there's been some unwanted side effects but I'm wondering, have you considered a pain rehabilitation program like Mayo Clinic PRC?
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1 ReactionDespite checking in, I did know of their program. I have polyneuropathy, plantar fasciitis and arthritis in every joint—almost zero feeling many areas of feet and ankles—which are deteriorating quickly. I know I will have a pain problem. Biggest issues are when Lyrica hit half life—then 2.5+mg micro dose thc. So, I know absolutely that I will need help with pain and maybe insomnia. What program do they have? Thanks for your interest
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1 ReactionDID NOT KNOW ABOUT…
@bealillie I have thermal and tactile allodynia, it’s quite awful especially in bed.
@dckuke Mayo Clinic has 3 pain rehabilitation centers which focus on placing more control on the person versus doctors and the medical universe. It's about learning tools for management which is all encompassing - behavioral, physical, emotional and chemical. For instance, I dealt with allodynia which for me was heightened from central sensitization syndrome and some medications. In rehab, I learned to calm down my central nervous system and start removing fuel lines from the fire. It's about a lifestyle change, and learning and applying tools for future management.
Here's info about the PRC:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
The program is not for everyone, but it doesn't hurt to dive in to learning about its teachings. Some folks who did not go we're still able to take away new thoughts and ideas about pain management. It is a comprehensive, multifaceted approach.
Outside of medication, what tools do you use presently to help manage symptoms?
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