As recommended by 4 different my doctors I use micro dose THC infrequently during the days gaps and in the pm—almost so low that they are energizing rather than sedating—no high. It is helpful for pain—not for the insomnia
@indiana9 Hello , I’m very sorry to hear about your experience with allodynia. I was diagnosed with RSD or Reflex Sympathetic Disorder 24 years ago after a catastrophic accident. My ankle bone was broken and the Perineal nerve torn with loss of feeling down my lower leg from the knee to ankle . The next day my foot hit the wall as I was getting onto the toilet in a small space with walker and cast
The next day the symptoms of RDD or now called Chronic Regional Pain Syndrome type 2 ( nerve damage) . It was so severe that the pain of different types drove me to near suicidal. It was sheer chance that my Mom heard a lady on the radio talking about how touching a sheet in bed was like touching an iron causing extreme pain. Her foot would be cold as if frozen for an hr and a half then be blue as if no oxygen. After this the blood would start to move down and swell my leg and foot so badly I couldn’t wear any type of shoe or sandal because of severe reaction to touch . Then my leg would get red , so hot and burning. It felt like hot oils were being poured down my leg continuously. This is what I had . it is the sympathetic nerve system that goes out of wack . Like the thermometers in your house the sympathetic system is an automatic nerve system down to your spine that can be triggered by any accident or even a bruising of a limb can start the syndrome. Touching was so painful. I could not ride in a car because the bumps caused so much pain . Any type of touch would start it off
The water in the tub would be cool to touch on my good leg and feel like boiling water on the affected leg . Allodynia is abnormal sensitive to touch . I slept with my legs protected by a sheet holder from a health store that kept the sheeting from touching me . I couldn’t stand any touching as it felt 100 times the normal sensation
After years on narcotics, fentanyl, morphine, my pain specialist start my burning pain that goes down the leg the drug I use through years of trails i don’t know which drug worked in my Allodynia because I was on Venlafaxine for the burning pain, and the Allodynia was reduced over time by use of self desensitizing my leg . This is done over a long time. You can’t rush it . It’s Graduually caressing your skin with something extremely soft and only for a very short time. I had to research online clothes that were extremely soft and sweat resistant and airy . I couldn’t put a sock on for over a year . It’s a very slow recovery for me bu it is pretty much gone . The burning pain is always there but controlled with Suboxone. It’s the only drug that has helped all my symptoms of RSD
I was lucky but just don’t look ahead to where you want to be . You wake up and are a certain way with pain etc but do the exercises and desensitization a very little every day and then one day you will look at your leg and say omg it’s gone or tolerable
I tried everything in medicine. You need to take it one meds at a time for 6 weeks to see if helped If causing discomfort and bad effects then stop and try another or go to a different Pain Clinic These are the only ones to help A psychiatrist who is knowledgeable in drug treatment and effective on pain management. I never found the use of cognitive behaviour therapy to lessen the pain It does help to learn how to focus and block pain but you can’t be productive and use CBT
It’s not a solution for me
You poor thing. You have gone through hell. My issue is not even worth complying about compare to your situation. I just hope you stay well and conquer your pain. God bless you!. Jim
My skin feels like it's on fire. It's similar to the of a severe sunburn but have no rash or redness. It's painful to wear heavy clothing And I don't sleep much. I have talked to two doctors now and they look at me like I'm crazy. The Pain has been going on for over 8 months and comes and goes with the intensity of the pain. I have recently doing red light therapy because I that it could help. I've had three sessions and so far no luck.
My skin feels like it's on fire. It's similar to the of a severe sunburn but have no rash or redness. It's painful to wear heavy clothing And I don't sleep much. I have talked to two doctors now and they look at me like I'm crazy. The Pain has been going on for over 8 months and comes and goes with the intensity of the pain. I have recently doing red light therapy because I that it could help. I've had three sessions and so far no luck.
Welcome @dhum, Sorry to hear that your doctors haven't been much help. I don't have any experience with Allodynia which sounds like what you are describing with your symptoms but there are many other members here on Connect that can relate and might have suggestions to help with managing the symptoms. Here is a search of Connect showing other related discussions and member comments from members with Allodynia - https://connect.mayoclinic.org/search/.
You mentioned you have seen 2 doctors that didn't seem to offer any help. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?
I have allodynia in my left chest/ribs due to a surgical complication. I place Lidoderm patches on my chest wall to help. They at least, keep my clothing from rubbing against my skin. I also have electric, shocking sensations that take my breath away and cause me to rapidly grab my chest and hold it tight. I have found nothing to stop these electric currents from repeatedly zapping my chest.
I feel like I am sunburned, but I'm not. My skin hurts all over, even when nothing is touching. For instance, I am wearing a short sleeved t-shirt and my arms hurt. My face hurts. I will see my regular physician this coming Friday. I am hoping she might have some answers. I used to have an occasional bout that would last 24 hours or so. I have now been in this flare for days. It saps all of my energy, and it is much harder to concentrate, even small tasks like pouring a cup of coffee and remembering to put it in the microwave to heat it. And I have sleep deprivation. What I have read so far since I joined this Mayo Clinic site is people have localized pain like this. My pain is all over my body. I rarely have migraines. Has anyone out there found a doctor and medication that helps?
@gwen4 Hi, I am new to this group and it is good to discover that i am not the only one who feels like this. I too have it over my whole body apart from hands, feet and buttocks. Everywhere else feels like sunburn, some days worse than others. I am currently having accupuncture to see if this will help as I already take amytripyline. I don't really want to go down the route of stronger painkillers unless I really need to. I have had this for just over a year now and it can be exhausting.
@gwen4 Hi, I am new to this group and it is good to discover that i am not the only one who feels like this. I too have it over my whole body apart from hands, feet and buttocks. Everywhere else feels like sunburn, some days worse than others. I am currently having accupuncture to see if this will help as I already take amytripyline. I don't really want to go down the route of stronger painkillers unless I really need to. I have had this for just over a year now and it can be exhausting.
Welcome @normski, It is a good feeling to learn that you are not alone when you are struggling with the symptoms of a condition like Allodynia. I am fortunate not to have pain with my neuropathy so I don't have to take the stronger painkillers. I thought you might find it helpful to learn what other members have found helpful while you wait for other members to respond. Here's a search of Connect for "Allodynia what helps" if you want to scan through the member comments - https://connect.mayoclinic.org/search/comments/.
Did you find any relief from your first acupuncture treatment?
Welcome @normski, It is a good feeling to learn that you are not alone when you are struggling with the symptoms of a condition like Allodynia. I am fortunate not to have pain with my neuropathy so I don't have to take the stronger painkillers. I thought you might find it helpful to learn what other members have found helpful while you wait for other members to respond. Here's a search of Connect for "Allodynia what helps" if you want to scan through the member comments - https://connect.mayoclinic.org/search/comments/.
Did you find any relief from your first acupuncture treatment?
@johnbishop Thanks for your reply so quickly. I will definately have a look at the link you sent me.
After my first accupuncture session, I felt great the following day.. no pain anywhere! I had another session yesterday, and today had been a bit of a nightmare. My whole upper body has been extremely sensitive. Even the backs of my hands and my scalp, which have never had it. So...I have one more session tomorrow and see how things go over the next week. Hopefully it isn't making things worse! I'll keep you informed😊
@johnbishop Thanks for your reply so quickly. I will definately have a look at the link you sent me.
After my first accupuncture session, I felt great the following day.. no pain anywhere! I had another session yesterday, and today had been a bit of a nightmare. My whole upper body has been extremely sensitive. Even the backs of my hands and my scalp, which have never had it. So...I have one more session tomorrow and see how things go over the next week. Hopefully it isn't making things worse! I'll keep you informed😊
@normski
I tried acupuncture once and only once and it was for lower back pain. I had pain after the session for about a week and one half. I called the physiatrist who did the acupuncture and said the pain would eventually subside. On a more recent visit with him, he said I must be in the ultrasensitive group of people. I think he is right. I even get reactions to cold weather, allergens from trees, cologne scents, etc. I guess this is part of my autoimmunity. I am dealing with scar tissue pain now from shin shave biopsy but will not do acupuncture anymore. Instead I am getting deep tissue massage and red light therapy--both seem to be helpful. I hope your acupunture works out well for you. If not, there are other ways to get out of pain.
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As recommended by 4 different my doctors I use micro dose THC infrequently during the days gaps and in the pm—almost so low that they are energizing rather than sedating—no high. It is helpful for pain—not for the insomnia
@indiana9 Hello , I’m very sorry to hear about your experience with allodynia. I was diagnosed with RSD or Reflex Sympathetic Disorder 24 years ago after a catastrophic accident. My ankle bone was broken and the Perineal nerve torn with loss of feeling down my lower leg from the knee to ankle . The next day my foot hit the wall as I was getting onto the toilet in a small space with walker and cast
The next day the symptoms of RDD or now called Chronic Regional Pain Syndrome type 2 ( nerve damage) . It was so severe that the pain of different types drove me to near suicidal. It was sheer chance that my Mom heard a lady on the radio talking about how touching a sheet in bed was like touching an iron causing extreme pain. Her foot would be cold as if frozen for an hr and a half then be blue as if no oxygen. After this the blood would start to move down and swell my leg and foot so badly I couldn’t wear any type of shoe or sandal because of severe reaction to touch . Then my leg would get red , so hot and burning. It felt like hot oils were being poured down my leg continuously. This is what I had . it is the sympathetic nerve system that goes out of wack . Like the thermometers in your house the sympathetic system is an automatic nerve system down to your spine that can be triggered by any accident or even a bruising of a limb can start the syndrome. Touching was so painful. I could not ride in a car because the bumps caused so much pain . Any type of touch would start it off
The water in the tub would be cool to touch on my good leg and feel like boiling water on the affected leg . Allodynia is abnormal sensitive to touch . I slept with my legs protected by a sheet holder from a health store that kept the sheeting from touching me . I couldn’t stand any touching as it felt 100 times the normal sensation
After years on narcotics, fentanyl, morphine, my pain specialist start my burning pain that goes down the leg the drug I use through years of trails i don’t know which drug worked in my Allodynia because I was on Venlafaxine for the burning pain, and the Allodynia was reduced over time by use of self desensitizing my leg . This is done over a long time. You can’t rush it . It’s Graduually caressing your skin with something extremely soft and only for a very short time. I had to research online clothes that were extremely soft and sweat resistant and airy . I couldn’t put a sock on for over a year . It’s a very slow recovery for me bu it is pretty much gone . The burning pain is always there but controlled with Suboxone. It’s the only drug that has helped all my symptoms of RSD
I was lucky but just don’t look ahead to where you want to be . You wake up and are a certain way with pain etc but do the exercises and desensitization a very little every day and then one day you will look at your leg and say omg it’s gone or tolerable
I tried everything in medicine. You need to take it one meds at a time for 6 weeks to see if helped If causing discomfort and bad effects then stop and try another or go to a different Pain Clinic These are the only ones to help A psychiatrist who is knowledgeable in drug treatment and effective on pain management. I never found the use of cognitive behaviour therapy to lessen the pain It does help to learn how to focus and block pain but you can’t be productive and use CBT
It’s not a solution for me
You poor thing. You have gone through hell. My issue is not even worth complying about compare to your situation. I just hope you stay well and conquer your pain. God bless you!. Jim
My skin feels like it's on fire. It's similar to the of a severe sunburn but have no rash or redness. It's painful to wear heavy clothing And I don't sleep much. I have talked to two doctors now and they look at me like I'm crazy. The Pain has been going on for over 8 months and comes and goes with the intensity of the pain. I have recently doing red light therapy because I that it could help. I've had three sessions and so far no luck.
Welcome @dhum, Sorry to hear that your doctors haven't been much help. I don't have any experience with Allodynia which sounds like what you are describing with your symptoms but there are many other members here on Connect that can relate and might have suggestions to help with managing the symptoms. Here is a search of Connect showing other related discussions and member comments from members with Allodynia - https://connect.mayoclinic.org/search/.
You mentioned you have seen 2 doctors that didn't seem to offer any help. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?
I have allodynia in my left chest/ribs due to a surgical complication. I place Lidoderm patches on my chest wall to help. They at least, keep my clothing from rubbing against my skin. I also have electric, shocking sensations that take my breath away and cause me to rapidly grab my chest and hold it tight. I have found nothing to stop these electric currents from repeatedly zapping my chest.
@gwen4 Hi, I am new to this group and it is good to discover that i am not the only one who feels like this. I too have it over my whole body apart from hands, feet and buttocks. Everywhere else feels like sunburn, some days worse than others. I am currently having accupuncture to see if this will help as I already take amytripyline. I don't really want to go down the route of stronger painkillers unless I really need to. I have had this for just over a year now and it can be exhausting.
Welcome @normski, It is a good feeling to learn that you are not alone when you are struggling with the symptoms of a condition like Allodynia. I am fortunate not to have pain with my neuropathy so I don't have to take the stronger painkillers. I thought you might find it helpful to learn what other members have found helpful while you wait for other members to respond. Here's a search of Connect for "Allodynia what helps" if you want to scan through the member comments - https://connect.mayoclinic.org/search/comments/.
Did you find any relief from your first acupuncture treatment?
@johnbishop Thanks for your reply so quickly. I will definately have a look at the link you sent me.
After my first accupuncture session, I felt great the following day.. no pain anywhere! I had another session yesterday, and today had been a bit of a nightmare. My whole upper body has been extremely sensitive. Even the backs of my hands and my scalp, which have never had it. So...I have one more session tomorrow and see how things go over the next week. Hopefully it isn't making things worse! I'll keep you informed😊
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1 Reaction@normski
I tried acupuncture once and only once and it was for lower back pain. I had pain after the session for about a week and one half. I called the physiatrist who did the acupuncture and said the pain would eventually subside. On a more recent visit with him, he said I must be in the ultrasensitive group of people. I think he is right. I even get reactions to cold weather, allergens from trees, cologne scents, etc. I guess this is part of my autoimmunity. I am dealing with scar tissue pain now from shin shave biopsy but will not do acupuncture anymore. Instead I am getting deep tissue massage and red light therapy--both seem to be helpful. I hope your acupunture works out well for you. If not, there are other ways to get out of pain.