The multiple sclerosis phantom itch is real

I have this incessant itch on my upper left arm that will not go away. I try to scratch it, but oddly enough I can’t seem to find its exact location. Just when I think I’ve found it, nope…I’m wrong. I have to be careful not to scratch that area too much because my arm is completely numb, has been for a few years now, so I could easily rub it raw without even realizing the damage I’m causing.

That very thing happened to me last year. I way lying in bed scratching away when I happened to look ay my hand and saw blood. My nails had been clipped earlier in the day and I didn’t realize that a tiny sharp corner was missed. I cleaned myself up but then realized how important it was to be more aware of what I was doing.

One thing I can say for a fact is that multiple sclerosis phantom itches are a real thing. It’s one thing to have a mosquito bite you causing a defined visible welt that can be treated with some anti-itch cream and a few strategically planned scratches just to take the edge off, but to have an invisible itch caused by an invisible monster who chooses to make a feast out of the myelin hidden from view in my central nervous system thus short circuiting my nerves, well that’s just downright dirty. Trying to explain that kind of itch isn’t an easy thing to do.

Besides my arm, I have an itch that shows up from time to time on the left side of my face. That one seems to show up mainly at night and isn’t as annoying as the one on my arm which even just now is begging for attention. It almost become a mind game because it seems that the more I focus on it the worse it becomes. I have to purposely shift my focus to other things just to calm it down. It doesn’t take it away complexly but it does help. Admittedly that’s not an easy thing to do.

I have other weird sensations that defy reality as well. At times I have this feeling that there is water on my chin but when I attempt to wipe it away, there’s nothing actually there. Then there is this cold sensation on my right foot that feels almost as if an ice cube has fallen on it. It doesn’t hang around too long, but even for the short time that is does show up, well that’s enough to drive me nuts.

MS definitely keeps life interesting. Each day is a new adventure into the unknown. Just know that no matter what you are experiencing, you are not going crazy and most certainly not alone. There is someone else out there who is experiencing the same thing too.

What phantom sensations have you experienced?

16 replies
  1. Sheri Ferber
    Sheri Ferber says:

    Ughhh Me 16! I scratch, then notice it creates a rash then I am in for it. I apply anti itch cream and tell myself not to touch. I too will have this to the point of bleeding at night. Skin is so very sensitive now. Lucky us.

  2. Cathleen
    Cathleen says:

    Oh my! Scalp itching!!! When you walk around scratching your head all the time, i’ve been told it’s not a good look, lol! I’ve used Taclonex on my scalp and taken Hydroxyzine for the itching as well as benedryl…what a plan when added to the Gabapentin I’m already on! And when it’s a bad spell, sometimes even all those together won’t be enough! Yikes!
    I had never thought about the ice cold feet in the same way, I just thought about that as poor nerve endings, interesting.
    The wet feelings is also a new thought for me….in the last month, i’m Always thinking i’ve Wet myself and can feel water even running down my leg but when I check, there’ no output in my pad, strange 🥴

  3. Lucy shortt
    Lucy shortt says:

    I experienced the itching , mine starts off on my scalp then my arms and chest bypasses my midrif but gets my lower legs. It drives me insane as I’m terrible at tolerating mild irritating constant discomfort an I know it sounds mad but I’d rather have pain than irritating annoying discomfort! The itching is worse and in fact is brought on by heat . Great when I’m a kitchen assistant/cook in a school kitchen lol . I was told by my ms nurse that Gabapentin and the injection im taking Copaxone can cause itching of the skin . I was advised to take paracetamol when I get hot to the point my temperature rises and antihistamines to help calm the itch and to touch wood it seems to work. Oh the wet/damp feeling catches me out , it’s always from my waist to an inch or two above the knee and generally whenever I sit down anywhere or suddenly while I’m driving. Even though I know I haven’t wet myself or spilt anything I always check thoroughly and repeatedly lol xx

  4. Peggy
    Peggy says:

    Oh the itches… for me its on the right side of my neck. Off and on…seems be gone then all of a sudden its baackk😱
    And having ice cold feet and legs just from knees down. No explanation- just cold ALL the time. The tremors feet dancing…

  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope I get some itchy feelings over many parts of my body. I also have to be careful not to scratch too much. I am using a urea cream and that does work. I also get funny feeling in my legs that feels like water (moisture) flowing up my legs. This is not so much phantom but reality. I am getting rid of my retention problem and it is working, but it will take a while so I don’t get anything else.

  6. Prudence
    Prudence says:

    Itching! Three nights ago it was crazy on my right thigh – only lasted a few minutes but by the time I’d finished scratching I had broken blood vessels and bruising all where I had scratch. Then it moved to my face! Luckily by then I realised what I was doing and sat on my hands. Haven’t had the itch for ages. Googled how to control/treat it and all of the advice said take a drug called Tegratol – which is the very drug my GP told me to stop taking 3 weeks ago because she thought it was the reason for my dry mouth!

  7. Jeanne
    Jeanne says:

    YES! I’ve experienced that. I would literally scratch my arms raw. I talked to my neurologist about it and she prescribed 100 mg Gabapentin with instructions to take one when the itches occurred and every 6 hours if they didn’t stop or subside (no more than 4 in 24 hours). Within a half hour of taking the first one, they were gone. Since I only took them when needed, eventually I no longer needed them because the itching gave up!

  8. Andrea
    Andrea says:

    I am always getting phantom itches…it is maddening! I also often feel like my foot is in cold water – most odd feeling as the other foot often feels boiling hot!

  9. Rhona Kingett
    Rhona Kingett says:

    I assume the various drips of water that I feel landing on me (even through clothing!) are a milder form of this itching. No dampness ever exists from these, just irritation as I try to see where they’ve come from but they’re not actually there.

  10. Marie Harned
    Marie Harned says:

    Yup the newest of my issues…itching. My legs look like I have leprosy…I cannot stop itching and have scabs all over. Dr. told me to take Benadryl…really? So I can fall asleep while driving! lol

  11. Louise
    Louise says:

    Alll the time I have this itch on my shoulder blade. Just when I think I have got it, I really haven’t and it’s somewhere else and almost always moves to the middle of my back where I couldn’t reach it if I wanted to. I actually thought it was me being silly. I’m so glad it’s a real thing for other MS’ers!

  12. Meeya
    Meeya says:

    I have stepped so many times into a non-existant puddle of ice water in my flat… I can’t believe my floor is perfectly warm & dry..!😱 My MS is a really good illusionist, with just one big goal: keep life interesting, never allow a single dull moment! 😁
    So I just keep laughing it oft – enjoy the ride 😎
    Btw- missed you last Thursday and am thrilled you’re back!! HUGS. 😘


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