MS Itch: Was wondering if anyone here... - My MSAA Community

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MS Itch

Ikeeptrying profile image
47 Replies

Was wondering if anyone here suffers from MS itch and what can be done for it. It's

making me absolutely miserable. Thank you.

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Ikeeptrying profile image
Ikeeptrying
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47 Replies
jimeka profile image
jimeka

Hi, I use a body lotion with AloeVera and Ttree oil in it. That really soothes mine. Can I ask, does your skin erupt at all? Mine occasionally has itchy blebs. Blessings Jimeka 🦋 🍫

Ikeeptrying profile image
Ikeeptrying in reply to jimeka

Yes, sometimes. Then sometimes it'll get angry red splotches on it. I use a lidocaine cream, steroid creams sometimes, though I try to stay away from steroids. My skin is already thin as paper. Does your body oil stop the itching? That's what I'm really looking for. Thank you for responding Jimeka. This ia the best site!

jimeka profile image
jimeka in reply to Ikeeptrying

Yes, it’s none greasy and easily absorbed. It’s not a moisturiser, it just soothes. I went to the doctor with mine, first thing he gave me was a steroid cream but I have never used it. I have tried the green top aveeno which is not as greasy as the brown top, it’s ok if used every day.

Ikeeptrying profile image
Ikeeptrying in reply to jimeka

What is the name of the body lotion you use? If it stops the itching I'm in!

jimeka profile image
jimeka in reply to Ikeeptrying

Sorry for late reply, I kept forgetting, blame the ms. It’s called Aloe Pura. It’s an organic Aloe Vera Gel, with Tea Tree. 99.9% bio active aloe Vera. It can be applied to stretch marks, scars, dry, chapped skin, sun burn, skin irritations and minor burns. It really helps mine. Blessings Jimeka 🦋 🍫

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

When my daughter was pregnant her Dr told her to use Selson Blue, on her belly to calm the itch. She swears by it.

Me? I'm an Aveeno with oatmeal believer. 😀

Good luck.😊🤗

J🌠

jimeka profile image
jimeka in reply to Jesmcd2

You just want to look as good as Jennifer Anniston! Lol 😂

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to jimeka

Oh yeah you're halarious. 😐🤣🤣 All 3 of my angel monster's had chicken pox at the same time. Aveeno oatmeal baths it was 😐🤣🤣

J🌠

WAshingtongirl profile image
WAshingtongirl

Ikeeptrying , I have an itch that is more neurological than topical in nature. It has brought me to tears and I’ve nearly drawn blood scratching myself. My neuro and rheumatologist disagree as to whether the culprit is the MS or Sjögrens. I don’t care what the cause is, I just want it taken care of! I am very cautious with my skin now—lukewarm showers (short ones) and no soap except shampoo, face and private parts. That’s all according to my doc. I use Cera-V twice daily on my skin (and told to use Vaseline if need be), take Benadryl and gabapentin (which can calm the itch a little, but just a little), then take hydroxyzine (which my dermatologist prescribed) when it gets really unbearable. I am forever indebted to Juleigh21 . If not for her reply to me on a previous post regarding this, I’d have no skin left on my arm and I’d be locked up somewhere I could do no harm to myself or others! Keep telling your doctor(s). If it isn’t due to dry skin, make them search harder. Praying you get some relief!!💕

Ikeeptrying profile image
Ikeeptrying in reply to WAshingtongirl

They say I have some sort of ezcema that's brought on by my immune diseases (MS and RA). Not very helpful. I'm going in for a second opinion in May, maybe I'll get some help. Even a diagnosis would be good. Can't take benedryl (rls) but do take gabapentin. And hydroxyzine which helps a little but I don't think its very strong. Maybe this is just too hard for doctors to deal with. Thank you for your very helpful response.

Qt314grl profile image
Qt314grl in reply to Ikeeptrying

Hey! It’s my RAMS buddy! Maybe lyrica would be a better option if it is neurological in nature? What dosage of hydroxazine are you using? I think you can go up to 100mg. (And then sleep for the next 8 hours, lol)

Ikeeptrying profile image
Ikeeptrying in reply to Qt314grl

I take 30 mg of hydroxazine usually once a day. If it's bad I'll take another 30 mg but not often. I'm used to gaba so don't think I'll go with the lyrica.

hairbrain4 profile image
hairbrain4 in reply to WAshingtongirl

Oh please do not use Vaseline on your skin. You might as well use a can of motor oil. Its the same thing, just refined a little more. Most lotions and shampoos have propylene glycol (anti freeze) & sodium laureth sulfate, or a derivative of them in it which will make your skin even more dry. Some lotions even have alcohol which will dry your skin. Most doctors do not know this because they don't get into scientific formulas. As a cosmetology school owner/instructor we had to know this. Try Extra Extra Virgin Olive Oil on your skin. It has the closest ph you can get to your own skin and no chemicals.

Peruzzot profile image
Peruzzot in reply to hairbrain4

Actually most commercial lotions contain alcohol. I am highly allergic to alcohol so I have to read the labels on everything. I've only found a few that don't contain alcohol and they're super expensive for a tiny little bottle. I can't afford them. I did find a recipe to make my own. For me it works great and smells good to. It's mostly coconut oil, aloe Vera gel (taken straight from aloe leaves of a plant I grow myself on the balcony) and some beeswax to give it some structure. Then add in a few drops of essential oil such as lavender or rose. I make a medium size batch and store it in 4oz mason jars. One jar sits on the bathroom counter with the rest in the freezer until I'm ready to use it. So far it's worked great for me. My hands and feet tend to get really dry during the fall/winter and winter/spring weather changes. It gets bad to the point that the skin breaks and bleeds. The doc thinks that it links back to when I got frostbite and it's just something I have to live with for the rest of my life. Using this lotion receipe I didn't suffer at all with the season changes the past year and I still have 3 of 6 jars still in the freezer. It was really easy to make. I just have to hunt the recipe down again if anyone wants it.

Ikeeptrying profile image
Ikeeptrying in reply to Peruzzot

You are so clever. Never would have thought of this.

Peruzzot profile image
Peruzzot in reply to Ikeeptrying

I found the original recipe, with my changes. The original recipe called for anhydrous lanolin. I don't know what that is or where to find it. The original also called for using a blender, but I didn't have one at the time and thought it was a waisted step anyway and just meant more stuff to wash up later.

My version of the recipe:

3/4 cup sweet almond oil

1/2 cup coconut oil

1/2 cup shredded cocoa butter

1/2 ounce shredded beeswax

2/3 cup distilled water

1/3 cup aloe vera gel

4 drops essential oil

4 drops vitamin A

4 drops vitamin E

Heat the oils, beeswax, and cocoa butter together over low heat in a double boiler until the wax and butter have melted. Stir gently to mix it together well.

Turn the heat off then add the remaining ingredients and stir until completely mixed.

Pour into jars and allow to completely cool. Once cooled put the jar tops on and place in the freezer until ready to use.

Allow to thaw before using.

hairbrain4 profile image
hairbrain4 in reply to Peruzzot

This recipe sounds much better than some of the other suggestions. If you are allergic to chocolate, cocoa butter isn't a good choice. It can cause allergic reactions on the skin or even anaphylactic shock. It also contains caffeine. you can use all coconut oil instead.

Peruzzot profile image
Peruzzot in reply to hairbrain4

I'm not allergic to chocolate but I'm not a fan of it either. I know. I'm weird. I've been told that before. 😁

hairbrain4 profile image
hairbrain4 in reply to Peruzzot

Hey, weird is a good thing.....

[W]onderful

[E]xciting

[I]nteresting

[R]eal

[D]ifferent

Peruzzot profile image
Peruzzot in reply to hairbrain4

I LOVE IT!!! I'm writing that one down so I can remember it.😂😆🤣

While I was attending a leadership school one of my classmates found out that I was an MP (Military Police) and he teasingly called me a "pig". Without missing a beat I said "Ya. I'm a Pretty Intelligent Gal." Everyone within earshot started laughing.

greaterexp profile image
greaterexp

You’ve already received some excellent advice, so I just will add my wishes that you get relief quickly.

Ikeeptrying profile image
Ikeeptrying in reply to greaterexp

Thank you very much.

rjoneslaw profile image
rjoneslaw

I take gabapentin 300mg 2x's a day. It's called neuropathic itch

grammyshay profile image
grammyshay in reply to rjoneslaw

Yes!

Ikeeptrying profile image
Ikeeptrying in reply to rjoneslaw

Does the gaba work? I take mine at night to help me sleep.

rjoneslaw profile image
rjoneslaw in reply to Ikeeptrying

Yes it works. I take it twice a day. Before taking it had really painful itching now I don't have it.

Missannie profile image
Missannie

I am so grateful to see this thread! I had it so bad, and the itch would change locations on my body! It started on leg then I'd have a short break and it would come back but in my arm this time. MY PARENTS TOOK ME TO TWO ER'S AND EVERYONE WANTED TO LOCK ME UP!bTo this day my parents still think I'm nuts or making these symptoms up.

HELLO it's not something you c an see it's a neurological Itch!!! The itch from HELL!

grammyshay profile image
grammyshay in reply to Missannie

Yes!

Ikeeptrying profile image
Ikeeptrying in reply to Missannie

Unfortunately!

JMTS profile image
JMTS

Hi there I keep trying. - I was diagnosed with Glaucoma quite a few years ago and I was allergic to the drops but then It may have been that my my body was rejecting them as they finally decided that I didn't have glaucoma. I found that the rash was caused by the drops which were beta blockers. I can imagine what you are going through because I know what I went through the rash nearly drove me made I was scratching in my sleep and I would wake up and my arms were bleeding. no creams the doctor prescribed for me worked. I was desperate I read where Apple Cider Vinegar ( the cloudy one) was very good and I tried it andit gave me instant relief I have since found out Coconut Oil and Swedish Bitters works as well. No more creams for me it is just lovely to have relief - no more itches.

grammyshay profile image
grammyshay

Oh, I have for almost 20 years. But now it seems to be far and few between. I keep a bottle of lotion in the fridge. The cold lotion seems to help me. The rubbing action for sure. Plus I do not leave long red streaks from digging and scratching this way. I only experience it on my arms. And never both at the same time. Sometimes it lasts for up to a couple of hours. During this time I will take 400 mg of Gabapentin and this seems to help calm it also. I do hope that this helps you.

Ikeeptrying profile image
Ikeeptrying in reply to grammyshay

Cold lotion sounds so good. Thank you.

pamgarner profile image
pamgarner

we have a column in our local paper called the "peoples pharmacy" they had an article on Selsun blue shampoo, how it helps ezema and psoriasis, I tried it as a body wash, can use daily, fabulous!i told my dr. he said it has been known to help those things a certain fungus, and dry patches, hope it works for you as it has me. easy answer pam

hairbrain4 profile image
hairbrain4 in reply to pamgarner

Please be careful using Selsun Blue shampoo as a body wash unless you actually have tinea versicolor or other fungus infections as it contains selenium sulfide which is what they use to treat fungus on the skin, such as tinea. If you just have dry skin the shampoo will only make the dry skin dryer as soon as you stop using it. Extra Extra Virgin Olive Oil, Pure Coconut Oil or Tea Tree Oil are really better choices.

Ikeeptrying profile image
Ikeeptrying in reply to hairbrain4

Thank you hairbrain (love your name). I don't use body washes at all, just baby oil. Selsun Blue has never been one of my favorites. I think it's great if it works for other people.

hairbrain4 profile image
hairbrain4 in reply to Ikeeptrying

Baby oil is just as good as a can of car oil for your skin. Try Extra Extra Virgin Olive oil or pure coconut oil. It just kills me when I hear people using stuff on their skin that is really bad for it. Example - most people think that baby shampoo is very mild. It is actually one of the harshest shampoos on the market. It is meant to clean cradle cap (caked on dandruff) and to keep baby's eyes from burning they added novacaine.

Ikeeptrying profile image
Ikeeptrying in reply to hairbrain4

The main ingredient is mineral oil. Is that as bad as car oil?

hairbrain4 profile image
hairbrain4 in reply to Ikeeptrying

Mineral oil is made from petroleum. It is car oil that has been refined a lot more.

Ikeeptrying profile image
Ikeeptrying in reply to hairbrain4

Pardon my dumb question. Is mineral oil OK to use on your skin?

hairbrain4 profile image
hairbrain4 in reply to Ikeeptrying

No, that's why I had stated that baby oil is very bad for your skin. It is mineral oil with fragrance. It will make your skin very dry & can cause rashes if you are allergic to petroleum products. If you like oil, Extra Extra Virgin Olive Oil, Extra Virgin Olive Oil or Coconut Oil are best for your skin. The ph in the olive oil is the same as your skin. In other words it won't dry it out or make it too oily.

pamgarner profile image
pamgarner in reply to hairbrain4

thx for the heads up, I am trying anything not to take another pill, cereve works for me too,we will have to keep selsun for emergency

Ikeeptrying profile image
Ikeeptrying in reply to pamgarner

Thank you so much for taking the time to respond.

Juleigh21 profile image
Juleigh21

WAshingtongirl I am glad the med works. I don’t know where I’d be w/o it when that miserable itch starts. (My very first MS symptom ☹️.) I’d rather be tired than losing my mind over a hellish itch😆. Ikeeptrying I hope you get some relief soon!! My heart goes out to you❤️

Ikeeptrying profile image
Ikeeptrying in reply to Juleigh21

Thank you for your kind thoughts. What do you do for your itch?

Juleigh21 profile image
Juleigh21 in reply to Ikeeptrying

Hydroxyzine (atarax)

esther57 profile image
esther57

I put a cool towel on the worst parts. Cooling things off seems to help. Even when my feet are burning ( if anyone else gets that too) . The drugs make me too tired which is already a big problem for me.

Good luck.

mrsmike9 profile image
mrsmike9

I get horrific itches on fingers and toes, sometimes on the tops of my feet. I've scratched myself bloody without recognizing that I'm doing it. I'm trying to be more aware of when I itch and the only think I have found effective is ice. If I ice it for awhile, it stops for me.

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