What do you do for Neuropathy itch?

HI Lori Renee and @artscaping, "Sick people itch"! I've never heard that and worked in health care 20+ years. I I were a provider, I would run a liver panel/profile to see what's going onw/ the liver b/c sometimes when it's toxic, patients will itch. Sorry you're hurting so bad Lori. Bummer. So sorry! Praying for relief for you both and many blessings, Sunnyflower

@artscaping Hi again, Chris, Yes, finding answers is the needle in the haystack. About 35 years or so ago, I wound up at Mayo Clinic for an odd inablity to heal from strep throat. I started developing some odd sensations, which vanished on their own, in about 2 weeks. One lf my symptoms was severe itch. I do remember a doctor at Mayo saying clearly, "Sick people itch. That is all we really know." That comment stayed with me, throughout the years. I think there is somewhat better treatment now, but when it is utterly severe, they don't have answers. As I write, my butt is absolutely on fire. I am pretending to be on a hot water bottle, and sunning my butt. I try my damndest not to let the oddness of neuropathy overwhelm me. I now use a curable app to try to turn down my amplified pain system. We all here have a full time job in just managing our bodies, and getting through one day without being nuts. (And I was nuts before this all happened!) Again, virtual hugs to you. LoriRenee1

Doctors really need to stop saying things like “Sick people itch” my goodness. I had my tonsils out and so did my ex’s son because they were essentially collecting strep throat and every time I’d start getting better I’d get it again. He was asymptomatic lucky him, but was a carrier reinfecting people wherever he went. That and being told “it’s all in your head” or “you must be making yourself sick” when they don’t know what else to test for or how to resolve symptoms are probably on the top 10 playlists of inane things really smart people say but should not.

If you haven’t yet, you might want to look into mast cell disorders. There are several types, and itching is part of all of them as can be other symptoms, and some people with mast cell disorders have other comorbid immune issues/deficiencies or genetic mutations causing them symptoms some have had their whole lives and just accepted as their norm priori to diagnosis. I had daily i hives most of my life. Dermagraphia, muscles becoming highly fatigued immediately after or during exercise, frequent migraines, often nausea or vomiiting after eating, cyclical IBS, exercise induced asthma, passing out during certain sports activities like mid flip in the pool, pain in my joints, skin, and deep in my bones, dislocations, feeling weak or fatigued, knees going out when i got excited, enough injuries just from doing normal kid things like climbing trees or trying to hang upside down, they threatened to report my mom for child abuse and told her she had munchausens by proxy, had been told when I went away to college that i had an eating disorder because my mom had been told i wasn’t allergic to the things she’d been avoiding giving me, because they didn’t show up as “true” IGE allergies, so she didn’t bother telling me I was or what she had been avoiding giving me, so I later ate things in the cafeteria not knowing they were triggers, would have an allergic reaction i did not recognize as one and puke in the trash can on my mad dash for a restroom, was told my GI pain was gastric reflux, and other things which turned out to be all explained by Primary MCAS, EDS and POTS as well as the preexisting diagnosis of Hashimotos thyroid disorder, sleep apnea and diabetes type 2 or 3.

I don’t list these off for people to feel sorry for me or what not, i have a wonderful productive and connected life. I mentioned them in case others are having similar symptoms and being blown off by doctors or told to just suck iit up, or “get used to it” as I was any time I or a loving relative sought answers. I went for 43 years without diagnosis just dealing with the symptoms because of doctors who didn’t know what to treat for so mistreated my mother or me. I had life threatening anaphylaxis multiple times and finally I refused to take the confused doctors as gods anymore and pursued answers until I got them in 2014 because i was having allergic reactions every time I ate, was exposed to the smell of hand sanitizer or certain foods being cooked, had gone into anaphylaxis when someone lovingly put essential lavendar oils on my pillow trying to help me sleep, and was in the ICU after almost needing a blood transfusion because I was passing blood after a “Perfect storm” of triggers one day. Where they kept almost killing me with hand sanitizer and various antibiotics i didn’t need, because they were just trying to help me and did not know how or why. Thankfully someone on facebook recognize my symptoms and told me to look in to Mastocytosis. Nurses at the mastocytosis society helped the doctors stabilize me enough to send me to mayo where ht why did I tests and decided i had some kind of mast cell disorder and helped stabilze me further, allowing me to fly to see a doctor who literally had hundreds of mast cell patients instead of a handful. (Sadly he has partially retired and stopped treating adult patients and is only focusing on pediatric) but thankfully i have doctors now who work together to keep me at my best health and give me advice on the tough questions like since I’m anaphylactic to flu vaccines should i risk the covid I vaccines or wait...etc.

Hope others find their answers no matter how bizarre or rare they are.

https://www.dermatologytimes.com/view/presentation-management-neuropathic-itch

Doctors really need to stop saying things like “Sick people itch” my goodness. I had my tonsils out and so did my ex’s son because they were essentially collecting strep throat and every time I’d start getting better I’d get it again. He was asymptomatic lucky him, but was a carrier reinfecting people wherever he went. That and being told “it’s all in your head” or “you must be making yourself sick” when they don’t know what else to test for or how to resolve symptoms are probably on the top 10 playlists of inane things really smart people say but should not.

If you haven’t yet, you might want to look into mast cell disorders. There are several types, and itching is part of all of them as can be other symptoms, and some people with mast cell disorders have other comorbid immune issues/deficiencies or genetic mutations causing them symptoms some have had their whole lives and just accepted as their norm priori to diagnosis. I had daily i hives most of my life. Dermagraphia, muscles becoming highly fatigued immediately after or during exercise, frequent migraines, often nausea or vomiiting after eating, cyclical IBS, exercise induced asthma, passing out during certain sports activities like mid flip in the pool, pain in my joints, skin, and deep in my bones, dislocations, feeling weak or fatigued, knees going out when i got excited, enough injuries just from doing normal kid things like climbing trees or trying to hang upside down, they threatened to report my mom for child abuse and told her she had munchausens by proxy, had been told when I went away to college that i had an eating disorder because my mom had been told i wasn’t allergic to the things she’d been avoiding giving me, because they didn’t show up as “true” IGE allergies, so she didn’t bother telling me I was or what she had been avoiding giving me, so I later ate things in the cafeteria not knowing they were triggers, would have an allergic reaction i did not recognize as one and puke in the trash can on my mad dash for a restroom, was told my GI pain was gastric reflux, and other things which turned out to be all explained by Primary MCAS, EDS and POTS as well as the preexisting diagnosis of Hashimotos thyroid disorder, sleep apnea and diabetes type 2 or 3.

I don’t list these off for people to feel sorry for me or what not, i have a wonderful productive and connected life. I mentioned them in case others are having similar symptoms and being blown off by doctors or told to just suck iit up, or “get used to it” as I was any time I or a loving relative sought answers. I went for 43 years without diagnosis just dealing with the symptoms because of doctors who didn’t know what to treat for so mistreated my mother or me. I had life threatening anaphylaxis multiple times and finally I refused to take the confused doctors as gods anymore and pursued answers until I got them in 2014 because i was having allergic reactions every time I ate, was exposed to the smell of hand sanitizer or certain foods being cooked, had gone into anaphylaxis when someone lovingly put essential lavendar oils on my pillow trying to help me sleep, and was in the ICU after almost needing a blood transfusion because I was passing blood after a “Perfect storm” of triggers one day. Where they kept almost killing me with hand sanitizer and various antibiotics i didn’t need, because they were just trying to help me and did not know how or why. Thankfully someone on facebook recognize my symptoms and told me to look in to Mastocytosis. Nurses at the mastocytosis society helped the doctors stabilize me enough to send me to mayo where ht why did I tests and decided i had some kind of mast cell disorder and helped stabilze me further, allowing me to fly to see a doctor who literally had hundreds of mast cell patients instead of a handful. (Sadly he has partially retired and stopped treating adult patients and is only focusing on pediatric) but thankfully i have doctors now who work together to keep me at my best health and give me advice on the tough questions like since I’m anaphylactic to flu vaccines should i risk the covid I vaccines or wait...etc.

Hope others find their answers no matter how bizarre or rare they are.

Hello steeldove, please forgive if this is a repeat. I had written it to another member: ""Sick people itch"! I've never heard that and worked in health care 20+ years. I I were a provider, I would run a liver panel/profile to see what's going onw/ the liver b/c sometimes when it's toxic, patients will itch." I'm so sorry you're going through this! Praying for relief for you and many blessings, Sunnyflower

@artscaping Hi again, Chris, Yes, finding answers is the needle in the haystack. About 35 years or so ago, I wound up at Mayo Clinic for an odd inablity to heal from strep throat. I started developing some odd sensations, which vanished on their own, in about 2 weeks. One lf my symptoms was severe itch. I do remember a doctor at Mayo saying clearly, "Sick people itch. That is all we really know." That comment stayed with me, throughout the years. I think there is somewhat better treatment now, but when it is utterly severe, they don't have answers. As I write, my butt is absolutely on fire. I am pretending to be on a hot water bottle, and sunning my butt. I try my damndest not to let the oddness of neuropathy overwhelm me. I now use a curable app to try to turn down my amplified pain system. We all here have a full time job in just managing our bodies, and getting through one day without being nuts. (And I was nuts before this all happened!) Again, virtual hugs to you. LoriRenee1

Hi Chris @artscaping
Both Aprepitant and Seriopitant are in the same class of drugs called NK-1 receptor antagonists. Currently, the main indication is for nausea and vomiting of chemotherapy.
I asked my neurologist if he knew of any use of these for the pain of peripheral neuropathy, particularly the burning pain associated with minor pressure, like wearing shoes or the touch of bed sheets (called allodynia). No answer yet.
Jeff

Good evening @jeffrapp, @johnbishop, Jeff...I am wondering if you have heard back from your neurologist about the Aprepitant and Seriopitant "off label" uses.
I am also interested in finding out how to choose the correct compression grade to look for in compression sleeves. I think I need a medical-grade for my arms and what is a medical-grade? I note that the sizing also correlates with different grades. These sleeves work well for me because the compression relieves a lot of the itch and they keep me from scratching. I then put gloves on so I don't cheat. John, how do you choose the grade for your leg stockings? Jeff....do you use compression?

May you be content and at ease.
Chris

Thank you, gentlemen.
Chris

Good evening @jeffrapp, @johnbishop, Jeff...I am wondering if you have heard back from your neurologist about the Aprepitant and Seriopitant "off label" uses.
I am also interested in finding out how to choose the correct compression grade to look for in compression sleeves. I think I need a medical-grade for my arms and what is a medical-grade? I note that the sizing also correlates with different grades. These sleeves work well for me because the compression relieves a lot of the itch and they keep me from scratching. I then put gloves on so I don't cheat. John, how do you choose the grade for your leg stockings? Jeff....do you use compression?

May you be content and at ease.
Chris

Thank you, gentlemen.
Chris