What do you do for Neuropathy itch?

Hi Chris, My cardiologist prescribed 20 to 30 mmHg compression socks for my lymphedema and that seems to be doing the job except I don't buy the spendy ones like I did the first go around through the Mayo Store. Amazon was cheaper for the brand names Jobst and a couple of others but I went with knockoffs and they feel the same and are hard to put on and take off. I found ones with side zippers which are much easier to get on/off. Since I've lost a good amount of weight and have been exercising more the leg swelling is not as bad and I decided to try less compression. I bought a few pairs of 15 to 20 mmHG knee highs with side zipper which are even easier to put on and take off and they seem to do just as well controlling the swelling during the day. For the socks you have to have measure your ankle, calf and the length and then look at their sizing chart to determine which of their size fits you.

Hope you have a Merry Christmas!

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.

Hey there @lorirenee1, I knew you would have a total understanding of the itch wall I just ran into. My dermatologist and PCP are collaborating. I took Benedryl last weekend. You say that works best. I will replenish.

Lori, how often do you get this SFN itch or whatever it is called? Do you have any warnings? What makes you think it is from Medical Cannabis? I actually found that a 3:1 THC/CBD balm on my entire body after a warm shower helped. So I calculated that at a jar a day times 5 days would be $165. Whew.......Maybe I should start with the anti-itch creme. Thanks for responding and keep an eye out for Chris's miracle itch drug. That's my next project.

Be content and at ease today.
Chris

@artscaping
Hi Chris, did you ever happen to try a massage/vibration unit on your itchy hand/arm? In case not, I do think there is a chance (perhaps small) that it might help, especially if you put on the compression sleeve right afterward (or do it with it on). I'm not referring to the sonicare idea (expensive if you do not have one to experiment with), but rather a different smallish unit which my wife Linda also uses.

Here is the Amazon link to it:
https://www.amazon.com/Uniclife-Massager-Portable-Shoulders-Operated/dp/B018U6Q1V2/ref=sr_1_1?dchild=1&keywords=Uniclife+Mini+Penguin+Massager%2CPortable+Massage%2C+Neck%2C+Shoulders+and+Back%2C+Battery+Operated%2C+White&qid=1607787462&sr=8-1
Maybe you already have something similar, but the vibrations this thing puts out are pretty strong & deep for its size and cost. I probably seem like I am beating a dead horse here, but I just think this might help your hand/arm itch areas if you have not tried it. I just feel so much compassion for you with this. I know how difficult it has been watching my wife suffer with it..

Best, Hank

PS: I promise this will be the last time I will bring this idea up unsolicited on Connect. I don't want to seem tedious. 😊

Greetings Hank @jesfactsmon and welcome to 2021.
I wanted to get back to you about the friendly Penquin. I actually took "Pen" to my MFR treatment so that we could both observe the process. As you said...the vibrations are strong enough to reach down several skin layers and relieve the "itch." As you might have expected, the itching doesn't stay away very long.

Now here is what I do not know ..... perhaps you can help. What is the frequency used? Is it possible that a too high frequency would become less than helpful? Here is what happened to me. That night I had what we call a "flare" when you just can't chase the itch away no matter how hard you try. Back scratcher.....bath sheet rub......and if available some coconut oil. I don't know if the Itch outran the Penquin or vice versa. I just noticed. In my world of mindfulness, awareness is a skill we work very hard to improve. Any thoughts? With five settings on Penquin and lots of itchy skin....it could get confusing.

Be safe and protected.
Chris

Greetings Hank @jesfactsmon and welcome to 2021.
I wanted to get back to you about the friendly Penquin. I actually took "Pen" to my MFR treatment so that we could both observe the process. As you said...the vibrations are strong enough to reach down several skin layers and relieve the "itch." As you might have expected, the itching doesn't stay away very long.

Now here is what I do not know ..... perhaps you can help. What is the frequency used? Is it possible that a too high frequency would become less than helpful? Here is what happened to me. That night I had what we call a "flare" when you just can't chase the itch away no matter how hard you try. Back scratcher.....bath sheet rub......and if available some coconut oil. I don't know if the Itch outran the Penquin or vice versa. I just noticed. In my world of mindfulness, awareness is a skill we work very hard to improve. Any thoughts? With five settings on Penquin and lots of itchy skin....it could get confusing.

Be safe and protected.
Chris

There is a new medical article on the use of Beta Alanine for Aquagenic Pruritus.(itch from water contact)...which also works for my for other itch issues that feels like deep multi layer itch...it might help you. I have been using for three years with no problems. By Stanford Ped Dermatologists : Link: https://onlinelibrary.wiley.com/doi/abs/10.1111/pde.14440?fbclid=IwAR2_d4qYfl_x_CWgS5RgXK8wOXMQYq0Uayoe3ReohNGrR916gmmHb08kTUA