Sensory Issues

[Judi4]

Has anyone experienced sensory issues? Feeling like things are crawling on your face and body, can't stand to be touched or hugged, feel overheated when someone does hug you, skin actually hurts, can't stand to wear lotion, makeup, etc. applied to skin. I feel like I'm going crazy.

[Froggiechick]

I have the crawling skin! It's super annoying and then you scratch til it's raw and you hurt! Mine usually hits when I'm getting in bed! Keeps me up a lot!

[lauranell2u]

Try neurontin or Lyrica. They sometimes help. It will pass, like most things. I had the itches for the longest time. You're not crazy! Although that would make it easier. LoL 😜

[ynggal]

Yes, yes and yes!! I'm glad to hear someone else say these things. I have the creepy crawly feeling all the time and I'm constantly looking to see if there's a bug on me! My skin is extremely dry. Always has been. But now I can't stand the feel of lotion on my skin. Because of a history of skin cancer I'm supposed to wear sunscreen every day, but can't stand the feeling of it. Can't stand the feel of makeup on my face. I guess it's just sensory overload.

[Fancy1959 in reply to ynggal]

Ynggal, it's Fancy1959 and I've had the creepy crawling feeling on my legs from my ankles up through my thighs for at least 10 to 15 yea5. Myy family doctor finally diagnosed it as restless leg syndrome. It was much worse in the evenings and when I went to bed then during the day, at least that was the norm most times. I was put on the generic equivalent for mirapex. Of course It's for your doctor to decide if he/she wants to try it with you and what dosage you need to start out at. It has done wonders for me in my legs no longer bother me at night. It can't hurt to bring it up to your doctor the next time you I have an appointment. Remember, together we are stronger. I hope this helped. Fight on Ms Warriors, fight on!

[Judi4 in reply to ynggal]

ynggal I can't stand to wear sun block, lotion or makeup. If I have to go somewhere important then I might put some on, but it feels like I'm suffocating. Hard to describe. The only place I feel a tickling/bug crawling feeling is on my face, neck and arms. If this happens I usually ask my daughter to see if there are bugs or maybe stray hairs on my shirt that might be causing this. I wonder if these symptoms ever stop or does it only get worse?

[Fancy1959 in reply to Judi4]

Ynggal, it's Fancy1959. Think about making some simple changes to make yourself more ,comfortable. When you reach your late 50's, (like I have), who needs make up? I simply don't wear it day in and day out.I always brush my teeth and my hair. (With different brushes of course! Ha, ha!) I simply wear my biggest sunglasses and put a baseball cap or hat on and WALLLA, I 'm ready to go!. Big sunglasses are your best friend on non make-up days. They hide so much! I hate hats but they are the key that covers up hair on bad hair days. Guess what! I'm setting in a DQ right now with big sunglasses on and a Humane Society cap. Yup, I didn't put on a bit of make-up and my hair's a mess. Ha,ha!

Do what makes you the most comfortable! It's okay to change your style. You are still beautiful inside! Keep a mirror in your purse so you can see for yourself their are no bugs on your person. Once you have gained your confidence back and you will realize MS is playing games with you. Be strong! Reach out to everyone you know, including us, and stand up strong against it! Remember, together we are stronger. Together we can chase your bugs away for good!

[ynggal in reply to Fancy1959]

Agreed. Sunglasses, bright lipstick, powder blush, best smile. Out the door!

[ynggal in reply to Judi4]

I have it the worst on my head/face and lower legs. It's annoying for sure.

[agapepilgrim in reply to Judi4]

Hi Judi4 , if you are judi4, what shall I call myself? judi3 or judi69 since I am 69 or judi46 or judi444 since 444 is part of my email address? lol Judi is my nickname, or it was Judy until I changed it to Judi in the 10th grade because there was sooo many Judys everywhere named after Judy Garland I guess. My given name is Julia, but even my mother didn't call me that. Boy, do I digress. My neurologist called that "unable to have a linear conversation." Yep, that's what he wrote in his consult notes! I got a copy from my primary doctor. That's what brain lesions do for me! To answer your questions, YES!!! creeping crawling things - I am always afraid it is fleas from dear little Mandi, but alas I never see any on me or her! And I brush away imaginary hair off my face. When I take my muscle relaxants it is not as bad. But then they zap whatever little energy I might muster up for the day! Such is the life of us MSers as I notice everyone calls themselves on this blog or chat room or community or sounding off space! OUR NERVES misfiring in our brains and necks and spines can cause all sorts of mysterious things going wrong that all the doctors in the world cannot predict or say for sure what it is. There are too many nerves, ganglion, axions, and neurotransmitters to connect to communicate messages it is a miracle we can still do what we do!!! Bless you from our dear Lord and Savior, Jesus Christ!

[Judi4 in reply to agapepilgrim]

agapepilgrim Hi there, I go by Judi, ha ha. I didn't grow up with a lot of Judy's. I can recall only 5 in my entire high school around '79 - '82. I was born a Judith and changed the spelling of Judy just to be different. I don't think there is anything wrong with conversing with you. Sometimes I think these doctors need to lighten up. As far as the sensory issues go, I'm constantly rubbing my face, neck or arms because I have the sensation there are hairs tickling it. I drive my teenage daughter crazy when I ask her to see if there are any stray hair on the back of my shirt sleeves and a majority of her responses are 'Noooo mom.' I also experience the sensation like there are bugs crawling on my scalp and look like a mad dog scratching. This makes me feel like I'm going crazy because you can have these feelings but nothing there to prove what's causing them. I think some of the doctors make you feel like what you're experiencing isn't real. My sister has MS and she says that when she tells the doctor some of her symptoms he replies 'That's not a MS symtom.' Yet I have seen her same symptoms posted in these blogs. Maybe it's me being paranoid, but I think sometimes the medical institutions deliberately hide some of the information that helps in diagnosing a lot of diseases. I better stop my rant here or I'll keep going on about the whole medical field and it's craziness.😊

[agapepilgrim in reply to Judi4]

I graduated in 64 so that may be why there were were more judys in my days. I researched and fount a anti itch lotion ny curel. ?) .I think$ that stops itching and great for my dry skin.. I also use coconut oil. It helps thos phantom sensory feelings I think the specialists out there too unconcerned to step beyond their little limited viewS!!!!

[Bsfl72 in reply to ynggal]

I had the same problem with skin dryness but not being able to stand the lotion. I started taking Vit E supplements and it made a HUGE difference in my skin without having to use lotion. Maybe it would help you if it doesn't interfere with any of your medications 🙂

[ynggal in reply to Bsfl72]

Thanks for the suggestion! I'll ask my dr at my next visit.

[Jesmcd2 CommunityAmbassador]

Hi Judi4 l had that and they put me on Lyrica after awhile it did go away for me tho so l stooped taking it. Talk to your dr. And see what he says about it.... Good Luck

[katepoet]

Nerves take damage from MS but there is something that can help. I only have itb reak through about one day a month now at the most. Use l-theanine about 30 minutes before bed at night as it aslo helps deepen sleep. Don't get the tablets - the addedinactive ingredients interfere. Get Pure Bulk brand. I take as much as a tsp each night. Work out what's a good amount for you. It's wonderful!

L-theanine Bulk Supplements

amazon.com/BulkSupplements-...

[whitchurch54]

I do get that feeling of my skin hurting and makes it hard to get dressed sometimes.

[Hidden]

Hi Judi4,

One of the issues I have is the crawly feeling! Especially if I'm sitting watching tv or reading in the evening. I keep feeling 'things' walking up and down my body. I've turned on the lights, did a thorough search so many times. Nothing. Unfortunately I scratch these areas and then have an awful rash that looks blood like and splotchy.

If you're going crazy, we're on this journey together!

[Judi4 in reply to Hidden]

Hidden I know it's a horrible feeling. Thanks for the laugh.

[3jaysmom]

Judi:I have had MS for over 20 yrs. and this has just gotten worse for me over time.

I sometimes feel like a "burn" victim. There are spots that hurt enough that I'll cry if touched there. Certain areas on the back, right where people want ot "pat you" to encourage or soothe you. I jump; and then I look like a grumpy old lady!

I'm sorry you have it too. I now TELL people ahead of time where it's not ok to touch. It helps.. You are NOT going crazy!!

3jays

[Judi4 in reply to 3jaysmom]

3jaysmom isn't this a horrible feeling. I do the same thing as far as crying out if my skin is touched or sometimes for no apparent reason. I feel bad for my 2 kids because I can't stand to be hugged at all and my 16 daughter constantly craves hugs. I try to explain it's not them, but I don't think they really understand. If I let anyone hug me I break out in a sweat because of the heat from their bodies. My mother sometime asks if I'd like my shoulders rubbed and I tell her I can't stand to be touched, it doesn't feel good, it actually hurts. I never used to be this way.

[SherylAnne]

I have had sensory issues in the past ... if anything touched my left leg or arm it felt like a red hot poker and INTENSE itching sensations on my feet and lower legs.... nothing like that now , I was prescribed Nortriptyline , which worked for me. sometimes now if I apply lotion on my legs after a shower if feels kind strange.

[agapepilgrim]

People at church have learned not to hug me - it is sad. It makes us feel isolated, doesn't it?

[Judi4 in reply to agapepilgrim]

agapepilgrim I have a hard time with my kids hugging me. Can not stand it. Sometimes I let them give me a quick hug, but it has to be quick pat on the back and release. My daughter loves hugs. I just hope some day they realize that it wasn't them, it was this stupid disease.

[agapepilgrim]

I would suggest, as soon as they are old enough, give them simple pamphlets to read about MS so they can understand. I have read of other families that children have had to accept weaknesses of a parent, and the other parent hit it head on with explaining the realities of the treacherous monster MS!