Monday, March 17, 2008

An Itch You Just Can't Scratch...

I began my day with the familiar routine...ah, that would be a SHOWER, not plotting world domination! And, as I stood in the shower with the hot water pelting down on me in feeble effort to wash the haze of Neurontin and lack of sleep from my eyes, I felt that old, familiar "itch" beginning in my ankles and feet. I sat down in a low tub of water (because my balance sucks right now and I also wanted to soak my torso in an effort to relieve the aching that has begun in my back)...in water probably much too hot of temperature for ANY MSer to tolerate...but, I did it anyway. And, the "itch" became intolerable. I mindlessly began scratching both of my feet in an effort to relieve the sensation...something I should NEVER begin and something I already KNOW will only make matters worse! I'm talking about the "MS ITCH"...


There's only one other person I have ever read/heard describe this sensation...Zee in Portland...and maybe it's just a West Coast MS thing. :-) LOL But it is a sensory issue that DOES seem to come from MS (believe me...I've been looked at for scabies, fleas, rash, dermatitis, etc...there's not a DAYUMED thing on my flesh!) AND seems to be triggered by a change in temperature or pressure to the area(s). So...I thought I'd discuss it here...on an MS blog...and see if there are MORE than two MS souls out there that have experienced this phenomenon.


I first started noticing this sensation not long after I was diagnosed with MS. Initially I thought (just as I wrote above) there was "something" on me...some kind of rash or dermatological issue I would see. But every time the sensation was apparent, NOTHING was apparent on my flesh. It seemed to be worse when it was hot outside and/or my feet were perspiring OR when I wore shoes that gripped my ankles in some fashion...like boots. I would find myself unconsciously DIGGING at my flesh in an effort to scratch the itch out...many mornings I woke up with deep fingernail gouges in my ankles from scratching them in my sleep. Not a pretty sight (of course, I'm really the only one who catches glimpses of my own ankles these days...when I can find them below my gut!)...


I asked one of my first neurologists about the issue...I was told to use Benadryl cream or some other topical ointment to relieve the "itching"...these things only seemed to apply a thin layer of GREASE that coated my feet and ankles, making them no longer air-permeable, and sealing in my own body heat...I simply SCRATCHED the lotions off, usually drawing blood! And, no matter how deep I scratched, the motion did NOT relieve the sensation...as a matter of fact, scratching my ankles/feet only made it WORSE! And then there were/are the "zinging" sensations that accompanied any scratching...as if my skin had developed its own circuitry and was sending out signals that I can only describe as the sensation of stepping down on a foot that has gone to sleep...except THIS sensation was on the TOP of my feet and ankles.


I finally had to stop wearing boots...or anything in the warm, summer months that might cover over my ankles. I made mental notations (stored in the holes of my brain) to deliberately STOP myself from scratching my "itch" whenever I could consciously remember. I tried to keep my feet as cool as possible and learned that if I ran cold water over my feet (when in dire MS ITCH mode), the itching sensation would lessen...for severe episodes, I have even used ice packs...much to the chagrin of my dainty tootsies.


For the most part, I have learned to live with the MS ITCH...although, when it hits me at times I am least prepared for it (like in the living room of a patient who already believes I might be the devil!), it is a curse to live with. I can't throw off my shoes and socks OR run cold water over my feet...this would be frowned upon in my "binez"...I simply have to grit my teeth and bear it...until I can justifiably slip my shoes (and sometimes socks) off.


Over the past year, I have developed a somewhat similar sensation in my left shoulder. This sensation always comes with the "warning worms", however. I will get a tingling feeling in my shoulder blade, which eventually develops into a sensation I can only describe as worms crawling about under the skin of my shoulder...this sensation will finally give way to an "itch"...a bit different sensation than my ankles/feet, but scratching is definitely on the priority list! This might develop over a matter of minutes or even days...always the same sensory pattern...always the same annoyance.


Sooooo...my question to all of you MSer CHEESE readers is this: Got an MS ITCH story YOU'D like to share??? I'm just 'itchin' to know I'm not the only one out there with this issue...




(**Editor's footnote** MS relapse update #57: Still no significant changes in symptomology of this relapse...and, with the discovery my brain is smoldering inside, "we" are considering trying ANOTHER round of IV Solumedrol in hopes of getting me back to full status duty at work as quickly as possible while awaiting to hear if I am approved once again for Tysabri. I am, needless to say, a bit "crabby/bitchy/pensive/obnoxious/isolative/sad/moody/angry/lethargic" and taking ALL of this out on my sweet cat and friends...sorry, folks...I DO appreciate your concern, emails, e-cards (Joyce), phone calls, etc...and, if any of you are still around after the Wicked Witch of the West melts, I'll apologize again! If it's any consolation, I've also taken to "E-Yelling" at Dr. She Who Will Not Be Named as well via emails...why should SHE miss out on the fun?!?)

28 comments:

Nervus Rex said...

I call it the B-ad Itch... B-itch for short. It happens whenever I put on my socks and nursing shoes and sit down to take report. Rub rub rub -- my team-mates pointed out that all my scratching will only make things worse. There is no rash, I have no allergies, and I'm gonna wear myself away!!

It also appears behind my knees when I'm charting. Too warm there, I guess. Or maybe you are right and it's the pressure?

And in the hot tub at the swimming pool! I'm sure that everyone watching thinks that a leper is trying to shed un-wanted parts when I get started :-P

You're not the only one... And I'm glad that I'm not, too!
Shawna

LISA EMRICH said...

I don't even want to think about it...but...YES!!! that itch, inside the shins, on the arms, over the shoulderblades, and the back of my left hand. Thankfully, neurontin does help to calm it down a bit. But once you get started scratching, it's almost impossible to stop.

Zee said...

Oh lord, that damned MS Itch. ARGH.

Scratching doesn't help at all, though I've never noticed any connection between heat and the itching appearing. Maybe I'll pay attention next time it shows up.

I will say, though, that it seems to sneak up on me at night,and I wake up in the morning with my shins bloody from having scratched them in my sleep. :( Not cool.

Miss Chris said...

I have this thing I call my "traveling itch" because it tends to move all around with no rhyme or reason. I look and look for a bug bite or dry skin or something to blame it on.

Anne said...

Just chiming in here that I too suffer the ITCH on my legs. Only had it once in my feet, but mostly it is from my ankles upward.

I have scratched myself bloody too many times over the years and always associated it with MS. Docs tell me it's not MS related, but we MSers know different.

The itch on my feet was only once but the only way to get rid of it (after trying ice filled bucket) was using a foot slough cream (Avon puts out one, maybe some CVS/Rite Aid stores too).

For the leg itch, believe it or not, shaving my legs is the only thing that puts it to rest for me. The itch almost always is at night, sometimes on long car trips, and shaving my legs is the only cure that works for me.

I use Requip for the jumps, but it really doesn't do anything for the itch. Benadryl/Lanacane are only temporary (like a half hour) fixes for me.

I hope you don't need another round if IVSM, but if you do, I hope it gets you up and running again.

Take care,
Anne

Anonymous said...

Yup, had the itch, too, though early on only (thankfully). The inside back of my throat was sooooo itchy I could have shoved my fist in there to scratch. Some spots on my leg and arm as well...the best thing for me was to distract the painful itch with something else, like warmth or cold. Different sensations then but at least they didn't drive me crazy. Or should I say crazier.
Shauna

Bubbie said...

I am an Itch! And you of course...ah...put into words so eloquently as usual.."like little worms" traveling under my skin. It's first like a little tickle and I think a long dog hair from the little beast is stuck to me somewhere.Then it's the itch. I look like a junkie, scratching all the time. Most recently it's my scalp and I'm sure I look like I have bugs.

Anonymous said...

I have an itch that won't go away it started in January and my dermatologist told me it was eczema he prescribed oral steroids and a steroid cream... no relief... i started washin with selsun blue helps a little but Benadryl does the trick... but still I can't keep taking benadryl HELP MEEE

Anonymous said...

I have just started to get this "MS itch" thing. I was diagnosed a year ago and have had a variety of symptoms (foot drop, pins and needles, numbness etc. etc.) but this one is a new one new and bloody irritating! It is on my right shouler and up the side of my neck. Scratching does not always relieve the symptoms as it is sort of under the skin so maybe it is not the same thing. I see my MS nurse next week so I will ask her.

SwitchingGranny said...

Yep.. found you with a google search of MS + itching!

Mine is only occasional. And I'm either about to go to sleep or wake up with this terrific itching on my feet mostly. (soles of the feet are difficult to scratch) I normally rub my feet like crazy against my husbands feet, until he makes me stop.

But also I've been awakened with itching on the palms of my hands. In between my fingers. Oh it is bad .. I rub rub and it only gets worse.

My husband always said that my itch was a symptom of my MS.. but now after my internet search I believe him.

Anonymous said...

I know exactly what you mean. I haven't been diagnosed..yet, but my doctor is 99.9% sure I do have MS. I developed this *horrible* itch on the right side of my head. The itch seems to be under my scalp, and nothing seems to help.

My worst episodes are during/after a shower, when I'm trying to sleep, or when I get hot. ( The biggest problem with the latter is that I live in Arkansas where it's almost always hot. ) I just really hope this passes soon, it is driving me absolutely crazy!!
Laurie

Anonymous said...

I started to itch a couple of weeks ago. It started at night as I was trying to sleep. My first thought was some sort of bug but couldn’t locate anything. I washed the bed clothes the next day but that afternoon the itching returned. I thought that some bug must have gotten into my clothes as well so I washed them straight away. That night the itching came back. Seems to be random and migratory. No pattern to it. Arms, shoulders, neck, back, chest, head, even my eyes. I did a google search for MS skin itch and it led me straight here. I have an appointment with my neurologist next Monday so I will be mentioning it to him then.

Anonymous said...

I have just started experiencing itching on my body, mainly the soles of my feet and lower legs but do get itches all over my body. I don't have any rashes, red marks or dry skin. I was only googling to see what it may be and came across this page. I will make sure I book in to see my doctor now to see if it is MS. I would never had thought to do that before reading this page.

Jayncee said...

Misery loves company ... thank god I found all of you! I've always had 'skin issues', but since my diagnosis in Sept 2008, I've been on a true roller coaster of emotion. Inheriting dry skin doesn't help either. I itch everywhere! So badly that I will never be able to where shorts again. It started with my shins, then the inside & back of my knees, then to my upper arms, elbows and fore arms. Now my abdomen and lower back are itching. All of this at the same time! Currently I'm taking Benedryl and a cotizone cream. I find that cool or luke warm showers are better than a hot shower. I also get this creepy, kinda weak sensation in my left leg at night ... these are all ms symptoms? Geeze! What will the next torture test be?

Anonymous said...

I get the itching in the evening when I am working around the house. I start to get hot & the itching starts all over every where. I take a cool shower & then drink ice water while sitting in front of a fan on low. Keeping cool & hydrated is the key for me. But yes it is a real B-itch. I could roll around on my back like my dogs do. I can't tolerate the heat & always have something ice cold to drink where ever I go. A hot shower or bath would make me crazy with itching. I know that every one is different but I know heat intolerance is quite common for MS symptom.

Anonymous said...

Hi
I was diagnosed with Ms 2yrs ago. I have many relapeses all i recovered from over time. The itch began almost a year ago, it started on my shoulder blade and then moved across my whole right shoulder and chest then my arm. It go so bad that i was in hospital from ripping my skin off.
I have not been able to wear a bra for the whole time of it my arm also goes into spasms when i scratch.
I wake up every morning and pray that today will be the day it would have stopped but sadly it is still here and still driving me insane.
I hope all out there are doing ok with it. Please let it be tomorrow that it will be gone

Anonymous said...

Poor anonymous commenting above, up at 0258 with THE ITCH. Had no idea this was a symptom until i relapsed earlier this year. After a long drawn out build up I lost the use of my left arm/hand, but it started on the right side arm, with an itch I could not scratch.

Thsi then 'shifted' to the opposite side. The itch in my shoulder was agony, I scratched until I bled in my sleep. As mentioned above, it felt like evil wiggly worms covered in itching powder. I also experienced extreme pain and as I said, lost complete use of arm/hand for about 8 weeks. It truly sucked.

Now, a couple of months later, the itch has stated again, in my torso, left side mostly and my tummy. So uncomfortable, and I'm trying not to worry that it's not a pre relapse itch again...

Ibuprofen get can offer minor relief, just dab little spots on, don't cover whole area, otherwise, as a great many doctors seem to say to me, just have to wait and see! Ta.

bruce h said...

i got the itching hands also .i take over the counter sudiferin and a xanax.for my ms itching.take the pills and then lay down.

Anonymous said...

Thank you, thank you, thank you. I am so glad I am not the only one! I started itching YEARS ago. The initial itching was on my chest. I went to the ER and the doctor didn't even want to come near me. He asked my husband if he slept with me and if he was itching--he thought I had some type of bug that would jump on him. When the itching started on my stomach I went to a dermatologist and she took a biopsy of my stomach and OF COURSE they found NOTHING! It wasn't until last month when I was diagnosed with MS that the itch finally made sense. After my Solumedrol influx the itch went away about a week later for about a week. It is back in full force and on my left breast, my abdomen, and my pelvic area. Of all the places to have itching these are pretty bad. I know itching feet are bad but when your female parts itch--it's B-A-D! These are definitely places that can't be scratched in pubic--I mean public!

Anonymous said...

I forgot to add: I see my neurologist tomorrow and I plan to print this blog to let him SEE that I am not CRAZY or alone. This is a symptom that they are going to need to address. I'll let you know what he says. I'm sure it will be some new drug he wants me to "TRY".

Anonymous said...

I have it too. Just saw a new nuero doc today. She said my MS is worse than expected. But this stupid itch is driving me insane. I can't sleep. All I want to so is scratch, but it is painful. Hopefully I can get some steroid cream. I have to stop itching somehow.

kim said...

I haven't been diagnosed yet, but have been going crazy every night for a couple of years - mostly on my arms. I have been bumping into doors and think i had that "hug" they talk about, and so many other weird things. Yesterday I took a walk out in the cold (so great!!!) except that my feet felt like they had weights tied to them, but the moment I got in the warm shower both legs began to drive me crazy with itching. I turned the water to as cold as I could stand and got instant relief. I told someone and she said, "dry skin." Nobody gets it. It s hard, so thanks for sharing. The doctor I went to sent me home with anit-depressants and an order for a brain scan. She said insurance wouldn't pay for MRI until I had the scan (which makes no sense to me) so I got my head irradiated and now she says i can have the MRI. This sucks, but nice to know I'm not alone. I have found that if I take an aspirin in the night and drink an Ovaltine I can fall back to sleep! :)
Thanks again, everyone, and feel better!
Kim

maggie said...

Hey guys, I'm glad I found this site. I have had M.S. since I was 19 (I am now 47) and it was a long battle to get diagnose with something that made sense. I was googling to find something in relation to itching and M.s. and low and behold I found this site. I don't know how to stop the itching but I have noticed that some of you itch till you do damage to your skin. I have had this itch forever. It all started in my legs and now it's all over. I discovered that although I don't know how to stop it I can satisfy the itch without damaging myself. Although this may sound not so nice to some of you it does provide satisfaction without mutilation. I use my small, round, bristle hair brush that has the steel head with the black nylon spiky bristles. It gives such a
relief to the itch and I only do bursts to satisfy the majority of the irritation and then stop and relax to allow time for the body to stop reacting to the change of temperature or heat or whatever the hell it's reacting to. I hope this helps some of you.

Kandi said...

I've had the itch with a few episodes this past year,i'm not diagnosed yet, but it's looking like it's MS. I didn't know what was going on, it was a light itch, then it got deeper and deeper, and it would spread all over my body, even my head.....it was like a torment itch, sometimes even a burning, tickling itch. Feels like itching of the veins. Actually, I think that's exactly what it is! I found that if I used witch hazel with aloe, the good stuff from the health food store, just pour it into your hands and rub it all over, it will take a few mins, take deep breathes, like u would after putting alcohol on a wound....then fairly soon it was gone. Much better than poisoning yourself more with the meds. Also ya all, look up CCSVI. Many of my friends have had the treatment and are doing much better! If I do have MS, this is what I'm going to do too.

thereaper66613 said...

Wow, I truly and for real thought I was the only one lol. My itch is not quite as severe, but bad enough to keep me awake at night and draw blood, and cause large bruises on my legs from scratching!! It is a HATED symptom. It starts in one spot and then jumps from area to area. No rash, no cantact with anything no lesions, no nothing, It has to be some sort of neuropathy from my ms. HAS to be. My primary prescribed doxipen. didnt help but at least he tried.

Greenleaf said...

I have had the "MS ITCH" for many years now, over a decade and it only worsens. Meds help a bit but night time is really bad, because I cannot lay down for pain is on my back and sometime all over body. Yes, I feel like I have bugs crawling on me and the scalp itch is unbearable leading to depression at times. It is helpful to learn of others suffering this way for I had no idea others did! Thank you for posting and I welcome all suggestions for relief.

seriously? said...

aw! hi folks!
much gratitude for this blog!
yes, yes, the itch, the itch, the terrible itch! hands, scalp, under chin, inner arms, between fingers, back, you name it. it is maddening.
i under stand that it is supposedly radiating from damaged nerves. has anyone else heard that? i wonder if any further damage is occuring while the insanity of the itch is going on...
i feel better just knowing you all are here! i have been diagnosed for for 27 yrs now and am doing pretty well.

Eliz said...

I am so happy to have found this. I feel like every time I ask my neurologist about itching she always says its not related to MS. I get the same creepy crawly feeling- like worms are crawling on my skin. I get super itchy at the base of my scalp too. I've noticed that this is worsened by heat and sweating. I feel the crawling sensation all over my whole body- not terrible but enough to keep me up at night. I too have drawn blood many times because I itch so hard. Here are some things that I do to help...I always cut my fingernails very, very short...that way i can't damage my skin as badly. When the itch is so bad that I can't stand it I put on exfoliating hand mitts (they are cheap and you can get them at places like cvs or Walgreens) and I itch my skin with the gloves on. I do this on dry skin even though they are meant to be used in the shower. I feel like my fingernails digging into my skin are what's so damaging. Also, when I get out of a not so hot shower I immediately apply some kind of itch relief lotion. Eucerin and aveeno make good ones. This won't make the crawling sensation go away but it helps with other itching. Hang in there everybody!!