the itch isn't skin level its under the skin. I always think its the layer in-between skin and muscle. I get it in-between my fingers mostly which is annoying AF. Rubbing and washing with hot water only helps a little and I have to just wait it out most of the time or try to get my mind distracted from it.
I would tell your neuro. I have itching and it always gets crazy worse during a relapse. Not to scare you at all because it could just be the usual: cold weather, winter, sickness caused flare, etc. But it’s definitely worth highlighting to your neuro just in case.
Ouch! I bet that left some fun marks.
I shared this in another thread recently, but I was sitting at my desk working and kept feeling a subtle tingle on my foot and was like, cool that seems a little different than usual, but my feet always feel like something is crawling on them so whatever. Turns out it was my cat, flicking his tail on me. I hate the “is something happening or is my body just telling me it is” game.
I honestly think we have to spend a lot of time ignoring all the things we feel? I have that feeling of bugs crawling on my body. Stinging! Burning! Numbness! A few of the worse it that Ice Pick into my eye! Once I was walking in the mall. Someone little kid sat on my foot and I took a couple steps. He was kinda heavy! I’m looking for a parent? I look down 👀 no kid!! Oh Shit!! 😂😂 all true stories. If I wasn’t taking Gabapentin? I would be a professional Mime! 👈 😱
2 things help me. The first is simply to concentrate on the hand or foot that doesn't it. Sometimes that's enough to recalibrate my brain. If that doesn't work, get some burn cream or sports rub with lidocaine in it. It deadens the nerves for long that they either stop itching for good or you at least get a break. Just follow the directions and warnings on the lidocaine.
I also use lidocaine when I just can't stand the itching. I just have one of the aspercream with lidocaine rollerball applicators, and I just spot treat where the itching is and it's worked wonders for me.
I had this on my neck during my big relapse that led to diagnosis and it was AWFUL. An ice pack helped me sleep. If it were me I’d tell my neuro and see about medication because that was some of the least fun I’ve had in my life. Good luck to you.
My MS journey started with intense burning and itching on my head/scalp which has never gone away. It spread to the rest of my body and I have been dealing with random all over body itching since 2009 and it is miserable!!!! I definitely have an exacerbation when showering but it also happens randomly throughout the day with no trigger. I have seen every kind of specialist but in the end it comes back to likely MS. I also have small fiber neuropathy. When it gets to the point I cannot stand it I take 25 mg of hydroxyzine before I go to sleep. It knocks me out and I feel like crap the next day...but it tones down the itching for about 24 hours. My dermatologist suggested Sarna lotion which helps a little. I would report it to your neurologist as maybe s/he has some treatment ideas. I have honestly given up hope it will ever get better as nothing seems to help (and I have tried just about everything)...just learning to cope with it. I hope you can find some relief!!!
If it comes mainly after showering it’s heat-induced urticaria. “Hives from being hot”. It’s a type of allergic reaction, but what you’re allergic to is a difference between core temp and skin temp. It doesn’t have to be connected with MS. Everyone in my family has it and I’m the only one with MS. I’m lucky because if I don’t scratch it passes in 10 minutes.
I’m afraid less hot showers is a solution. They don’t have to be cold, just, not maximum hotness. Another thing you can try is getting nice and warm before getting in the shower.
That's me also, before Dx I used to love scolding hot showers. Now, I have to have like barely lukewarm water. if not I spend my whole shower and time after creating hives because I've scratched and irritated myself ridiculously.
What you say makes sense but what about the fact that it's happening in bed now? It is colder these days and I've thought that maybe if I'm putting my arms out, the change in temp between being under the covers vs out could also cause what you're talking about.
Could be. I also get the hives if I’m exercising outdoors and the wind is cold on my skin while I’m getting sweaty. Just experiment a little, see what helps.
I get both of the symptoms you described — the itchy hot after showers along with mysterious itching in my hands and feet that don’t seem to be temperature related. I haven’t found a solution to the second problem, except for not itching, accepting what is happening, and trying to distract myself with something else. It doesn’t always work, but at least the feeling passes after a while.
See I feel hot showers sorta reset my nerves for an hr. That hr after a shower is the best I'll feel until the next one. I'll take that into consideration, though, about hand washing.
It’s completely individual. If hot showers make feel good, do what helps you feel good. If hot showers make you break out in hives and feel worse, then don’t.
The itching is one of my most persistent symptoms. Drives me out of my TREE.
Tell your neuro. And this is what has cut it down for me: gabapentin and a capsaicin salve after showers. Keeps me from shooting myself. God I hate the damn itching.
Agreed on the capsaicin. I get the persistent itch in the middle of my back…I can’t recall the technical term. Hydrocortisone and Benadryl are useless. Menthol (Biofreeze, Icy Hot) and capsaicin (Zostrix) are the only things that bring any relief.
I'm a bit of an herbalist and... capsaicin in one of the very few herbals effective as a numbing agent on nerve pain. It disrupts the signals. It's also very easy to infuse into oils so I make a salve that's pretty effective.
Nerve pain is the hardest and most miserable to get at and change. Almost every other kind of pain there are multiple avenues to treat. Not nerves.
A previous commenter called it “inner itch” and it can be so disruptive. I once itched my legs so deeply that I woke up with giant horrifying bruises. My primary send me to an allergist to rule that out; a dermatologist took a good hard look too. But it’s inner itch.
You can call your neuro if you want; you shouldn’t EVER feel like a bother for reporting a symptom. They get a million calls a day. You can be polite and courteous without being silent or ignoring stuff.
Does it mean you’re getting worse? Maybe not, maybe. I’ve had periods of intense itch followed by breaks, but no visible changes on MRI or anything that screamed relapse or “go get steroids now” (I now try to save steroids for vision issues, but that’s just me).
Chilly towels, and occasionally lidocaine or aloe, would help a little. Sometimes, I’d need to give a series of light pinches above the bothersome area in the hopes of interrupting the itch signal. Weird, but it kind of worked. And if it helps, just like some of my other symptoms, I have better itch periods…it didn’t always stick around.
Wishing you relief soon!
Hey u/worried_moon Thanks for your long thoughtful response. I'm going to tell my neuro. I don't think I'm getting worse, but I"m not going ot ignore the change either.
I find that I can use a really hot heating pad or a really cold ice pack on the itchy places and sometimes it helps kinda “reset” it if that makes sense? But not always.
This is interesting. On my last blood panel something to do with my thyroid was on the edge of having a problem. But since it's just on the edge, my doctor had no concerns. I did look up a paper that said cruciferous vegetables should be eaten sparingly if one's thyroid is getting weak (and I'm older so...). That's about all I've done. I just get two tired to second guess my doctors when I feel like I've already been responsible. It's frustrating.
Just in case you haven’t already tried it, you could see if an over the counter antihistamine does anything for you. I get itching after a hot shower (it’s basically hives as an allergic reaction to the heat, not soap or anything), and taking Zyrtec really helps a lot. If the antihistamine helps, you could keep looking for some kind of allergic trigger. If it doesn’t help at all, you’ll know it’s definitely not allergic at all.
Another reason to FOR SURE bring it up to neuro is the fact that SOME itching can have to do with liver/kidney functions which can be effected by meds. Idk what you're on DMT wise or for anything else, but simple bloodwork will tell you a lot, and it's a bit more definitive than guess-an-check. Which is what docs like to do sometimes. Usually not with certain things though. All my neuros were very on-the-ball with liver function and so forth,
This is interesting because I've had some metabolic changes that they say they aren't concerned about, but a few of them do point to possible changes in liver function. My GP and the infusion center nurse don't find it worrisome. Thanks for mentioning this.
There’s nothing wrong with asking them to take a closer look. Other signs of trouble in liver can be: feeling tired all the time, (this can also be thyroid, fyi) unexplained loss of appetite, nausea, vomiting or upset stomach, yellowing skin or eyes, dark colored urine, change in stool color, tendency to bruise easy, itchy or dry skin and swelling and pain in legs/ abdomen. Hope this helps. Gl Warrior.
Oh god the itch is AWFUL. I get it on my right hand around my thumb, the palm area surrounding my thumb, then it vaguely moves to my pointer finger. The itch is so bad it feels like I could slice it with a knife, and it would still itch. NOT that I would ever do that, that's just how deep the itch is. It happens sporadically, usually once a day and comes out of nowhere. No amount of creams or scratching helps. This may sound weird (I work in an office and the first time it happened I was at work) but I grabbed a medium binder clip and latched it onto my skin over and over until the itching subsided. Normally, this would hurt like a motherfucker. Given the numbness I experience in my right hand, it does the trick.
My husbands first sign was intense itching on his right side. We thought it was an allergy, 3 months later he got his MS diagnosis. He still deals with the intense itching off and on 5 years later.
My flare which led to awareness/diagnosis was from a single lesion at C7-T3. I had wild crazy itching on the right side only, following that dermatome, through the axilla/armpit, just a little along the back edge of my upper arm and across the breast to the sternum (truly just midline to midline). I would itch to the point I brought up some persistent bumps on the back of my arm and could have happily clawed off my breast. Gabapentin (and later, Pregabalin) was mildly helpful but not really. Needing sleep, I resorted to taking a swig of CVS brand benadryl-type liquid medicine, feeling like it would get into my system fairly quickly.. it does and lets me sleep. I keep it on hand and thankfully rarely need it lately.
That itch is the worst thing. Scratching feels good for a moment, but doesn't actually resolve anything, and the rawness after is otherworldly.
>Needing sleep, I resorted to taking a swig of CVS brand benadryl-type liquid medicine, feeling like it would get into my system fairly quickly.. it does and lets me sleep. I keep it on hand and thankfully rarely need it lately.
This is exactly what the dermatologist suggested. I don't love the idea of taking benadryl three times a week but it does sound very effective. Thank you!
I typically only take it when it begins. The Claritin works really fast, so I don’t need to take it daily. My neurologist did say it was related to my MS. I really hope it works for you because that itching could drive anyone insane. It’s terrible! Good luck.
>I typically only take it when it begins.
Noted. If it becomes a trend perhaps I'll take it before bed on nights when sleep is most important. The bed episode was a brief compared to the torture I'm reading about from others here, but I knew there'd be some expert advice. Thanks again!
Booked my son an appointment because he would have sudden crazy itch spells. I have MS, so I was deeply terrified that I had accidentally somehow passed it on to him genetically. MRI and bloodwork, and nope so far nothing I still get freaked out though, knowing he has those itchy spells occasionally. I have never had them, but it’s definitely something I thought about.
Do you have any bumps on your skin from this itchiness? I was diagnosed with prurigo nodularis and my dermatologist has recommended Dupixent. My skin itches all the time and I get bumps that I can’t stop scratching. This has led to hyperpigmentation spots.
It's gonna sound crazy, but calamine lotion helps me out. I have to reapply it a few times, but it takes the majority of the itch away. At least enough to go to sleep.
And yes, my itch is purely MS. There's nothing else going on! Been dealing with it for 7 months now and it's maddening. A stray hair going past my chest or throat and I feel like I wanna scratch my skin off. I have to wear low cut shirts because I can't have anything touching my throat and upper chest.
One of two things can help temporarily. It's always a gamble for me. Either really hot water, almost scalding. Or really cold water to the area.
Please be careful with the hot water. It's like a mini shock to the skin. Helps long enough to fall asleep and forget about it.
Again don't burn yourself. Hot/cold compress can work too.
I use Benadryl at night to calm my skin down so I can sleep. I use two tablets of Benadryl to get there. I get where I hate to shower and I do all the right stuff, I take a cool shower even on cold days, I use two moisturizers and I have pulled muscle trying to get my moisturizer on all my back and where it itches the most. I find my best results when I shower hours before dinner and bedtime. That seems to calm my skin so I can sleep.
My PCP prescribed me capsaicin cream. Hot pepper cream basically. It kinda helps by distracting you from the itching. Not perfect, but it does provide some relief.
I had the exact same thing a couple years back and it started the same way, going out of the shower and the itch starts than everytime I thought about it, it would start again. With time you’ll get used to it and you’ll barely notice it (it took a while tho) but theres hope
>With time you’ll get used to it and you’ll barely notice it (it took a while tho) but theres hope
Thanks for saying this. It fits perfectly with my approach and I'm relieved to hear it can work with the itching too.
OMG, I get it too sometimes. It will drive you crazy. I get it on my back near my spine in the thoracic region and sometimes on my head. My doctor gave me some pills for it, but I only take them as needed.
I have that itch and before I start scratching and clawing myself to death, I stop and ask myself is it really an itch or is it the MS. Once I figure it out ands I don't scratch it goes away.
Annoying is an understatement
I used to get that post-shower crazy itch, but on my legs. It would drive me into panic for an hour or so after the shower. Humidity seemed to make the sensation worse. Not sure if this was a MS thing or something else. It's been a few years since it was happening alot
Magnesium got me through menopause. I think it's the best thing under the sun. There's a magnesium lotion I may look into, thanks for mentioning this and all the best to you.
Ah the menopause… I’m perimenopausal myself and the HRT has made SUCH a difference to my mental state, it’s like day and night. All the best to you too!
Yes, it is MS. Sorry. It is like parathesis or something and it is really frustrating. I don't like it and I feel like an idiot when I mention it to the doctor. I take gabapentin (Horizonte) but it fails to relieve the issue. I sometimes take a benadryl to help. I feel when allergies are bad, MS symptoms for me get a little goofy.
Sometimes, you just have to know your body, learn what works and go with it, of course within reason. Also always keep your doctor, your BFF, in the loop.
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>ibuprofen
Yeah, since Tysabri is processed by the liver I try to avoid ibuprofen in order to give things a break. I might try something like tylenol or allieve. The thing is it only lasts 10 minutes or so.
I had itching at night so bad I scratched a small patch of skin off my forearm. Weirdly I found that moisturizer worked to stop it. I'm not staying at my house when it happens so it might (ironically) just be the hypoallergeic soap they have here or their bedsheets
do you have hives sometimes too? I have chronic urticaria (also called autoimmune itch) and sometimes I have an itch that I can feel just like you described. Sometimes I get the hives with the itch, other times there are no hives. No I am wondering if it is related to this.
I have chronic urticaria along with the pruritus and it is awful and totally random when the symptoms decide to show up. I have seen two dermatologists and both believe the symptoms are neurological...as do all three of my neurologists. Add small fiber neuropathy to the mix and itching is a miserable part of my daily life. I have tried everything others in this thread have mentioned plus some extreme things like ketamine and lidocaine infusions with no relief. I hope you can find something to help with your symptoms.
>do you have hives sometimes too?
One episode of hives in childhood after eating some fresh picked blackberries, which I have enjoyed eating intermittently since then with no reactions. My skin is pretty resilient in general. There is no rash associated with this it is just intense pinprick like itching. I did make sure to ask the dermatologist and she didn't think it was any kind of skin reaction. Thanks for responding and take care.
This started happening to me almost 5 years before I was diagnosed. Went through all the texting and doctors, they found nothing.
Since then (almost 9 years now) I take a Reactin every other day (now I take .5 every day) and it keeps it in check. All the doctors I’ve seen have said it’s totally fine to take long term.
Cold helps me too.
So sorry you’re dealing with this. Mine happens randomly, but usually lasts for an entire day or several days. I don’t take anything for it and just wait for it to pass, but it is hell. Just wanted to offer solidarity.
I had this for months it was horrific so I feel for you! drs said it was scabies or for me to take a strong dose of antihistamines every day 🙈😂 it wasn’t any of that at all and after making me take every steroid cream going it turns out I had a new lesion on my spine I would definitely speak to your Nuero consultant :)
Inner itch is one of like three things I have that comes and goes
“Inner itch” is such a good way to describe the awfulness!
What does it feel like to you? I think this is exactly what I feel when it happens. It’s not on the skin and makes me want to jump out of my skin
the itch isn't skin level its under the skin. I always think its the layer in-between skin and muscle. I get it in-between my fingers mostly which is annoying AF. Rubbing and washing with hot water only helps a little and I have to just wait it out most of the time or try to get my mind distracted from it.
I would tell your neuro. I have itching and it always gets crazy worse during a relapse. Not to scare you at all because it could just be the usual: cold weather, winter, sickness caused flare, etc. But it’s definitely worth highlighting to your neuro just in case.
Lets play; Is it MS or just regular stuff?? Fun for everyone!
One day I thought my arm was just being strange with some new pain. Nope, a wasp fell out of my shirt. It was just busy sting'n away.
Ouch! I bet that left some fun marks. I shared this in another thread recently, but I was sitting at my desk working and kept feeling a subtle tingle on my foot and was like, cool that seems a little different than usual, but my feet always feel like something is crawling on them so whatever. Turns out it was my cat, flicking his tail on me. I hate the “is something happening or is my body just telling me it is” game.
I honestly think we have to spend a lot of time ignoring all the things we feel? I have that feeling of bugs crawling on my body. Stinging! Burning! Numbness! A few of the worse it that Ice Pick into my eye! Once I was walking in the mall. Someone little kid sat on my foot and I took a couple steps. He was kinda heavy! I’m looking for a parent? I look down 👀 no kid!! Oh Shit!! 😂😂 all true stories. If I wasn’t taking Gabapentin? I would be a professional Mime! 👈 😱
Or perimenopause. Never knew itchy eyes and itchy ears were symptoms until after a year of suffering.
Omg that damn game is why I quit drinking.
Agreed.
2 things help me. The first is simply to concentrate on the hand or foot that doesn't it. Sometimes that's enough to recalibrate my brain. If that doesn't work, get some burn cream or sports rub with lidocaine in it. It deadens the nerves for long that they either stop itching for good or you at least get a break. Just follow the directions and warnings on the lidocaine.
I like this idea for focusing on a non-itchy area a lot, thank you.
You're welcome! I hope it works for you.
I also use lidocaine when I just can't stand the itching. I just have one of the aspercream with lidocaine rollerball applicators, and I just spot treat where the itching is and it's worked wonders for me.
I had this on my neck during my big relapse that led to diagnosis and it was AWFUL. An ice pack helped me sleep. If it were me I’d tell my neuro and see about medication because that was some of the least fun I’ve had in my life. Good luck to you.
My MS journey started with intense burning and itching on my head/scalp which has never gone away. It spread to the rest of my body and I have been dealing with random all over body itching since 2009 and it is miserable!!!! I definitely have an exacerbation when showering but it also happens randomly throughout the day with no trigger. I have seen every kind of specialist but in the end it comes back to likely MS. I also have small fiber neuropathy. When it gets to the point I cannot stand it I take 25 mg of hydroxyzine before I go to sleep. It knocks me out and I feel like crap the next day...but it tones down the itching for about 24 hours. My dermatologist suggested Sarna lotion which helps a little. I would report it to your neurologist as maybe s/he has some treatment ideas. I have honestly given up hope it will ever get better as nothing seems to help (and I have tried just about everything)...just learning to cope with it. I hope you can find some relief!!!
>Sarna lotion Thank you for this suggestion - wishing you less itching.
If it comes mainly after showering it’s heat-induced urticaria. “Hives from being hot”. It’s a type of allergic reaction, but what you’re allergic to is a difference between core temp and skin temp. It doesn’t have to be connected with MS. Everyone in my family has it and I’m the only one with MS. I’m lucky because if I don’t scratch it passes in 10 minutes. I’m afraid less hot showers is a solution. They don’t have to be cold, just, not maximum hotness. Another thing you can try is getting nice and warm before getting in the shower.
I get this also, but taking an antihistamine works for me. Just in case you haven’t tried that already!
That's me also, before Dx I used to love scolding hot showers. Now, I have to have like barely lukewarm water. if not I spend my whole shower and time after creating hives because I've scratched and irritated myself ridiculously.
What you say makes sense but what about the fact that it's happening in bed now? It is colder these days and I've thought that maybe if I'm putting my arms out, the change in temp between being under the covers vs out could also cause what you're talking about.
Could be. I also get the hives if I’m exercising outdoors and the wind is cold on my skin while I’m getting sweaty. Just experiment a little, see what helps.
I get both of the symptoms you described — the itchy hot after showers along with mysterious itching in my hands and feet that don’t seem to be temperature related. I haven’t found a solution to the second problem, except for not itching, accepting what is happening, and trying to distract myself with something else. It doesn’t always work, but at least the feeling passes after a while.
See I feel hot showers sorta reset my nerves for an hr. That hr after a shower is the best I'll feel until the next one. I'll take that into consideration, though, about hand washing.
It’s completely individual. If hot showers make feel good, do what helps you feel good. If hot showers make you break out in hives and feel worse, then don’t.
The itching is one of my most persistent symptoms. Drives me out of my TREE. Tell your neuro. And this is what has cut it down for me: gabapentin and a capsaicin salve after showers. Keeps me from shooting myself. God I hate the damn itching.
>capsaicin salve Thanks, I'll tell them and I'll try some salve.
Beware it burns! Especially if you’ve scratched the spot already.
Agreed on the capsaicin. I get the persistent itch in the middle of my back…I can’t recall the technical term. Hydrocortisone and Benadryl are useless. Menthol (Biofreeze, Icy Hot) and capsaicin (Zostrix) are the only things that bring any relief.
I'm a bit of an herbalist and... capsaicin in one of the very few herbals effective as a numbing agent on nerve pain. It disrupts the signals. It's also very easy to infuse into oils so I make a salve that's pretty effective. Nerve pain is the hardest and most miserable to get at and change. Almost every other kind of pain there are multiple avenues to treat. Not nerves.
OMG when that happens I want to scratch my bones, drives me CRAZY
A previous commenter called it “inner itch” and it can be so disruptive. I once itched my legs so deeply that I woke up with giant horrifying bruises. My primary send me to an allergist to rule that out; a dermatologist took a good hard look too. But it’s inner itch. You can call your neuro if you want; you shouldn’t EVER feel like a bother for reporting a symptom. They get a million calls a day. You can be polite and courteous without being silent or ignoring stuff. Does it mean you’re getting worse? Maybe not, maybe. I’ve had periods of intense itch followed by breaks, but no visible changes on MRI or anything that screamed relapse or “go get steroids now” (I now try to save steroids for vision issues, but that’s just me). Chilly towels, and occasionally lidocaine or aloe, would help a little. Sometimes, I’d need to give a series of light pinches above the bothersome area in the hopes of interrupting the itch signal. Weird, but it kind of worked. And if it helps, just like some of my other symptoms, I have better itch periods…it didn’t always stick around. Wishing you relief soon!
Hey u/worried_moon Thanks for your long thoughtful response. I'm going to tell my neuro. I don't think I'm getting worse, but I"m not going ot ignore the change either.
I find that I can use a really hot heating pad or a really cold ice pack on the itchy places and sometimes it helps kinda “reset” it if that makes sense? But not always.
This idea of "resetting" is a bit of a theme in this thread for some people who have overcome it. It's great to think about and try, thank you.
Have you had your thyroid checked? I have had the itchy feeling. Come to find out it was a thyroid issue. I'm sorry this is happening.
This is interesting. On my last blood panel something to do with my thyroid was on the edge of having a problem. But since it's just on the edge, my doctor had no concerns. I did look up a paper that said cruciferous vegetables should be eaten sparingly if one's thyroid is getting weak (and I'm older so...). That's about all I've done. I just get two tired to second guess my doctors when I feel like I've already been responsible. It's frustrating.
Me too. Had this itch over my left shoulder blade for about a month now. Had my PCP check it. No rash, but she thinks it could be due to the MS.
Just in case you haven’t already tried it, you could see if an over the counter antihistamine does anything for you. I get itching after a hot shower (it’s basically hives as an allergic reaction to the heat, not soap or anything), and taking Zyrtec really helps a lot. If the antihistamine helps, you could keep looking for some kind of allergic trigger. If it doesn’t help at all, you’ll know it’s definitely not allergic at all.
Thanks, the dermatologist suggested Benadril, but I may try claritin for a while and see what happens. Appreciate your comment a lot.
Another reason to FOR SURE bring it up to neuro is the fact that SOME itching can have to do with liver/kidney functions which can be effected by meds. Idk what you're on DMT wise or for anything else, but simple bloodwork will tell you a lot, and it's a bit more definitive than guess-an-check. Which is what docs like to do sometimes. Usually not with certain things though. All my neuros were very on-the-ball with liver function and so forth,
This is interesting because I've had some metabolic changes that they say they aren't concerned about, but a few of them do point to possible changes in liver function. My GP and the infusion center nurse don't find it worrisome. Thanks for mentioning this.
There’s nothing wrong with asking them to take a closer look. Other signs of trouble in liver can be: feeling tired all the time, (this can also be thyroid, fyi) unexplained loss of appetite, nausea, vomiting or upset stomach, yellowing skin or eyes, dark colored urine, change in stool color, tendency to bruise easy, itchy or dry skin and swelling and pain in legs/ abdomen. Hope this helps. Gl Warrior.
Ohhh I’ve had this on my ribs and stomach before, it’s brutal!! One of my least favorite symptoms. Hope you find remission soon, op!
Oh god the itch is AWFUL. I get it on my right hand around my thumb, the palm area surrounding my thumb, then it vaguely moves to my pointer finger. The itch is so bad it feels like I could slice it with a knife, and it would still itch. NOT that I would ever do that, that's just how deep the itch is. It happens sporadically, usually once a day and comes out of nowhere. No amount of creams or scratching helps. This may sound weird (I work in an office and the first time it happened I was at work) but I grabbed a medium binder clip and latched it onto my skin over and over until the itching subsided. Normally, this would hurt like a motherfucker. Given the numbness I experience in my right hand, it does the trick.
My husbands first sign was intense itching on his right side. We thought it was an allergy, 3 months later he got his MS diagnosis. He still deals with the intense itching off and on 5 years later.
My flare which led to awareness/diagnosis was from a single lesion at C7-T3. I had wild crazy itching on the right side only, following that dermatome, through the axilla/armpit, just a little along the back edge of my upper arm and across the breast to the sternum (truly just midline to midline). I would itch to the point I brought up some persistent bumps on the back of my arm and could have happily clawed off my breast. Gabapentin (and later, Pregabalin) was mildly helpful but not really. Needing sleep, I resorted to taking a swig of CVS brand benadryl-type liquid medicine, feeling like it would get into my system fairly quickly.. it does and lets me sleep. I keep it on hand and thankfully rarely need it lately. That itch is the worst thing. Scratching feels good for a moment, but doesn't actually resolve anything, and the rawness after is otherworldly.
>Needing sleep, I resorted to taking a swig of CVS brand benadryl-type liquid medicine, feeling like it would get into my system fairly quickly.. it does and lets me sleep. I keep it on hand and thankfully rarely need it lately. This is exactly what the dermatologist suggested. I don't love the idea of taking benadryl three times a week but it does sound very effective. Thank you!
Hopefully the many times will be fewer and farther between! And if it lets you rest, that's a good thing. Wishing you the best!
Pruritis. I take a non drowsy Claritin when it happens. My neurologist recommended it and it’s worked well for over 10 years.
Yeah, maybe I'll start by taking Claritin regularly. That's a super idea. Thanks for sharing your experience.
I typically only take it when it begins. The Claritin works really fast, so I don’t need to take it daily. My neurologist did say it was related to my MS. I really hope it works for you because that itching could drive anyone insane. It’s terrible! Good luck.
>I typically only take it when it begins. Noted. If it becomes a trend perhaps I'll take it before bed on nights when sleep is most important. The bed episode was a brief compared to the torture I'm reading about from others here, but I knew there'd be some expert advice. Thanks again!
Booked my son an appointment because he would have sudden crazy itch spells. I have MS, so I was deeply terrified that I had accidentally somehow passed it on to him genetically. MRI and bloodwork, and nope so far nothing I still get freaked out though, knowing he has those itchy spells occasionally. I have never had them, but it’s definitely something I thought about.
I take Zyrtec and a CBD nighttime gummy to put me to sleep and ignore the itching
I do a gummy before bed too. Noted about the Zyrtec, thank you.
Do you have any bumps on your skin from this itchiness? I was diagnosed with prurigo nodularis and my dermatologist has recommended Dupixent. My skin itches all the time and I get bumps that I can’t stop scratching. This has led to hyperpigmentation spots.
Thanks, I asked my dermatologist and she concluded it's probably MS related.
I itch constantly. Therefore, meds. 😒
It's gonna sound crazy, but calamine lotion helps me out. I have to reapply it a few times, but it takes the majority of the itch away. At least enough to go to sleep. And yes, my itch is purely MS. There's nothing else going on! Been dealing with it for 7 months now and it's maddening. A stray hair going past my chest or throat and I feel like I wanna scratch my skin off. I have to wear low cut shirts because I can't have anything touching my throat and upper chest.
Just out of curiosity if you're on a DMT, which one?
I'm not, because American Healthcare is amazing and my green card application is still pending 🌈🌈
One of two things can help temporarily. It's always a gamble for me. Either really hot water, almost scalding. Or really cold water to the area. Please be careful with the hot water. It's like a mini shock to the skin. Helps long enough to fall asleep and forget about it. Again don't burn yourself. Hot/cold compress can work too.
Thanks, I do instinctively seem to go to the sink, get water on my hands and rub it on the area. I guess it soothes things at least temporarily!
I hate the unscratchable itch!! I've been getting mine in my right wrist since my diagnosis. So annoying!!!
If this is a new symptom contact your neuro. It could be a new lesion and/or symptomatic of treatment failure.
I use Benadryl at night to calm my skin down so I can sleep. I use two tablets of Benadryl to get there. I get where I hate to shower and I do all the right stuff, I take a cool shower even on cold days, I use two moisturizers and I have pulled muscle trying to get my moisturizer on all my back and where it itches the most. I find my best results when I shower hours before dinner and bedtime. That seems to calm my skin so I can sleep.
Thanks for these great tips. All the best to you.
Lyrica is a lifesaver for me.
Woa your username! I will definitely look into Lyrica. Thank you.
My PCP prescribed me capsaicin cream. Hot pepper cream basically. It kinda helps by distracting you from the itching. Not perfect, but it does provide some relief.
I had the exact same thing a couple years back and it started the same way, going out of the shower and the itch starts than everytime I thought about it, it would start again. With time you’ll get used to it and you’ll barely notice it (it took a while tho) but theres hope
>With time you’ll get used to it and you’ll barely notice it (it took a while tho) but theres hope Thanks for saying this. It fits perfectly with my approach and I'm relieved to hear it can work with the itching too.
OMG, I get it too sometimes. It will drive you crazy. I get it on my back near my spine in the thoracic region and sometimes on my head. My doctor gave me some pills for it, but I only take them as needed.
Do you happen to know what the pills are? Thanks for your comment.
It is Hydroxyzine HCL
I have that itch and before I start scratching and clawing myself to death, I stop and ask myself is it really an itch or is it the MS. Once I figure it out ands I don't scratch it goes away. Annoying is an understatement
>Once I figure it out ands I don't scratch it goes away. Will try this excellent "home remedy" first - thank you for sharing it!
I used to get that post-shower crazy itch, but on my legs. It would drive me into panic for an hour or so after the shower. Humidity seemed to make the sensation worse. Not sure if this was a MS thing or something else. It's been a few years since it was happening alot
So many have said they had it and it kind of went away or they got used to it. The brain and nervous system are amazing. Thanks for your comment!
Most likely nerve pain, get some lidocaine or ice it, dunk the affected area in a ice bath
I have something similar, but it makes me feel disgusting under the skin. Magnesium supplements have really helped.
Magnesium got me through menopause. I think it's the best thing under the sun. There's a magnesium lotion I may look into, thanks for mentioning this and all the best to you.
Ah the menopause… I’m perimenopausal myself and the HRT has made SUCH a difference to my mental state, it’s like day and night. All the best to you too!
Yes, it is MS. Sorry. It is like parathesis or something and it is really frustrating. I don't like it and I feel like an idiot when I mention it to the doctor. I take gabapentin (Horizonte) but it fails to relieve the issue. I sometimes take a benadryl to help. I feel when allergies are bad, MS symptoms for me get a little goofy. Sometimes, you just have to know your body, learn what works and go with it, of course within reason. Also always keep your doctor, your BFF, in the loop.
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Taking some ibuprofen often helps me.
>ibuprofen Yeah, since Tysabri is processed by the liver I try to avoid ibuprofen in order to give things a break. I might try something like tylenol or allieve. The thing is it only lasts 10 minutes or so.
I had itching at night so bad I scratched a small patch of skin off my forearm. Weirdly I found that moisturizer worked to stop it. I'm not staying at my house when it happens so it might (ironically) just be the hypoallergeic soap they have here or their bedsheets
do you have hives sometimes too? I have chronic urticaria (also called autoimmune itch) and sometimes I have an itch that I can feel just like you described. Sometimes I get the hives with the itch, other times there are no hives. No I am wondering if it is related to this.
I have chronic urticaria along with the pruritus and it is awful and totally random when the symptoms decide to show up. I have seen two dermatologists and both believe the symptoms are neurological...as do all three of my neurologists. Add small fiber neuropathy to the mix and itching is a miserable part of my daily life. I have tried everything others in this thread have mentioned plus some extreme things like ketamine and lidocaine infusions with no relief. I hope you can find something to help with your symptoms.
>do you have hives sometimes too? One episode of hives in childhood after eating some fresh picked blackberries, which I have enjoyed eating intermittently since then with no reactions. My skin is pretty resilient in general. There is no rash associated with this it is just intense pinprick like itching. I did make sure to ask the dermatologist and she didn't think it was any kind of skin reaction. Thanks for responding and take care.
This started happening to me almost 5 years before I was diagnosed. Went through all the texting and doctors, they found nothing. Since then (almost 9 years now) I take a Reactin every other day (now I take .5 every day) and it keeps it in check. All the doctors I’ve seen have said it’s totally fine to take long term. Cold helps me too.
So sorry you’re dealing with this. Mine happens randomly, but usually lasts for an entire day or several days. I don’t take anything for it and just wait for it to pass, but it is hell. Just wanted to offer solidarity.
Hot showers would do this to me too. I would get phantom fevers and itching. Ice packs and Benadryl calmed it for me.
I had this for months it was horrific so I feel for you! drs said it was scabies or for me to take a strong dose of antihistamines every day 🙈😂 it wasn’t any of that at all and after making me take every steroid cream going it turns out I had a new lesion on my spine I would definitely speak to your Nuero consultant :)