Does anyone experience sporadic but very intense itching? Mine can last for a few hours or a few days. Most of it is on my face but it is all over my body. There is no rash, bites or marks where the itching occurs. It is very disruptive to my quality of life when it occurs.
Yes I have had itching. In the summer I blame it on a bug bite outside, in the winter I thought it was dry skin so I put dry skin
cream on for dry skin but it didn’t work now I know where it’s probably coming from.First time I have heard someone else have it too.Nice not to be alone I never told anyone about it.
I was wondering the same thing I was just diagnosed in January 2013 so am still new and learning how to deal with all the symptoms of this monster. I noticed when it started getting cold that I started having problems with itching it seems to last for minutes at a time but all day everyday it is very annoying. I also am finding that some of my symptoms are intensified with the cold just as with the heat, my numbness and tingling I have in my hands and arms as soon as the cold hits them they are in unbearable pain of pins and needles and hurt. I was beginning to think that maybe I was going to be the oddity since no 2 MS’ers are the same.
Itching is indeed a semi-common MS symptom, I have it myself from time to time. It is a result of damaged nerves that misfire and which can cause a large variety of odd sensations. Exposure to extreme heat or cold can temporarily increase our symptoms.
If you’ve noticed a pattern, that your pain and itching intensify during cold weather, you can discuss this with your neuro. There are medications that treat neuropathic pain such as gabapentin and Lyrica, among others.
I am new to this forum as of today and I see that most all these posts are old, I guess this site isn’t as popular as a few others I am on, but it looks like a nice one 🙂 Anyway, I have intense itching on a pretty regular basis and am in fact going through an episode of it right now. Kim is right, it is from damage to the myelin sheaths surrounding the nerves inside our brain. As many of you may know, this can wreak all kinds of havoc with odd sensations throughout your body-lucky me, I have them all 🙁 Sensations as though tiny bugs are crawling all over me and stinging/biting me at times-this is what generally creates my intense itching from my head to my feet! I also get the burning, severe pain and pins and needles of neuropathy on a regular basis. Numbness/tingling in feet and hands, cheeks and lips (tongue at times) during an exacerbation. I wont go on about all my other symptoms, just mainly wanted to talk about the skin type sensations that are brought about by the nerve damage. Im with Chrissy, it most def affects my quality of life (as does all my MS symptoms that never go away) and I have not found anything to help. I am a big avoider of drugs though, I am only on 3- 1 to save my life and the other 2 so am able to get out of bed and walk. If anyone else has the itching in this way, I’d love to hear from them, especially if you have found something that gives you relief 🙂
Have experienced these sensation just last week. The pins & needles with the feeling ants are crawling on my legs, irritating as all hell. New symptoms seem to keep adding up the last 4 years. The thing that helps me & I know some will frown on it but, marijuana before I go to bed. It helps slow & calm some of the sensations & the pain. Pain killers destroyed my stomach, had a migraine that lasted nearly 3 months so, pot it is.
Oh my yes! I have had itching all over. At times I itch so bad on my trunk that I have scratched in my sleep to the point of causing bleeding and scars. I have tried so many creams and lotions that have not helped. The most relief I have ever gotten is to pat corn starch on as soon as it starts. I have also had itching in my eyes so bad that I rubbed off my lower lashes.
I have not been diagnosed with MS. I have been diagnosed with lupus, but this crazy itch (without rash) is so severe it has gotten me to where I don’t even want to live like this. The doctor did the MRI of brain and tells me I do not have MS. But this has got to be the only explanation I can find! This itch is EXACTLY the way you all describe it and I have seen it previously described on other MS websites. I have other MS symptoms too. NOTHING works for this intense itch. I have tried it all. It feels like ants are crawling on me and even in my eyes. My scalp itches too. The next day it may be gone completely OR it may hang around for awhile. Sometimes I feel like I am going insane. This is not characteristic of the lupus/rash type itch. I have been on over the max dose of gabapentin with no relief. At this point I will try anything but the main thing is WHAT is causing it!? Have any of you been misdiagnosed or had difficulties being correctly diagnosed with MS? Can anybody please give me some advice?? Thank-you in advance, Donna
My research reveals that Lupus is a broad term for an autoimmune disease that can affect a wide range of organs. The relevant feature is that it can involve the Central Nervous System, which means nerve damage to the brain or spinal cord. This damage causes nerves to misfire, which can in turn cause an itching sensation with no rash. In other words, your MS-like itching is also a feature of Lupus.
I’m guessing that treating it would employ the same methods used for neuropathic itching caused by MS nerve damage in the CNS: gabapentin or Lyrica, to name just two. Discuss your concerns with your doctor, and if you don’t find that conversation to be enlightening, consider getting another opinion, if anything, to ease your mind.
Thanks Kim, I was about to tell her same thing. I was do with sle in 1999 and 2000 lupus had attacked central nervous system. I had mri and spinal tap. But in 2014 my life even as disruptive as lupus has been, I could not move about, Mir and spinal tap showed MS and transverse myelitis . I have been declining without getting better ever since. My auto mic nervous system is shot as well as poly peri pal neuropathy. I have no control over my body. And itching is constant. I am very isolated from people. I just relax and pray. I am blessed by my caregivers, all of them. With eight auto immune diseases and countless meds to keep me alive I know there must be a reason and purpose. I try to keep positive but honestly sometimes I fail miserably at that, but then I tell myself off and go with flow again.
I have had a hard week trying to figure out where and why I am itching. Last Sunday evening, my hands started with the pins and needles feeling and went into itching and mild swelling. Then my feet started in, my left primarily, then some back of the neck. These symptoms jump around. I had an exacerbation last month and I am thinking this is due to the heat and humidity. I just started gabapentin and hope it helps after it kicks in. I initially thought I was having a reaction to something but I have no rash unless I rub or scratch ( trying not to). Any input would help.
Hi Andrea, it does sound like neuropathic itching, so you’re on the right track with gabapentin. It might take a while to find the dosage that helps, we do have to titrate the dose to see whether it will help. Keeping cool might help ease the itching. I hope gabapentin gives you some relief.
For those who have it really hard to deal with heat… I was able to receive an ice vest for keeping cool from the MS foundation. The heat not only affects my speech, and thinking but also extreme nausea. Also those keep cool towels are good for around the house.
I just had the pleasure of expieriencing this awful symptom. After researching what others have to say about it I really didn’t find any help except of course more drug’s. Well I feel I must share what stopped my severe itching/pain in it’s tracks.
ICE,ICE,ICE…. You need to put an ice pack directly on your itchy areas and keep it there as long as you can while enduring the pain. You can pull away when you have to but get right back at it as soon as you can. After 15 minutes your itch and pain will be gone.
You will have to remove any outer material or sleeve that may be on your reusable freezer pad. You can also just fill a zip lock bag with ice and a little water which works great. Perhaps for hands & and feet you can fill a bowl with ice and water as I did.
Please let me know if this helps because it was a blessing for me. The severety of this symptom is no joke. I hope others can find the relief in a simple ice pack as I did.
Hope you don’t mind me opening up this thread again. I’ve been having itching problems. I’ve tried antihistamine but its not helped, in fact I think it made it worse.
Is MS itching a prickly kind of itch ? I hear the description ‘pins and needles’ … but to me that is like when you sit on your leg the wrong way and it goes numb and then there is that pins and needles feeling associated. I don’t get that (unless I sit on my leg the wrong way !). Is that what MS people feel as an itch ?
I get little prickly feelings. Often on my scalp but sometimes, like tonight, all over, a prickle on my leg, then on my arm, then my hand, then back on my leg and it goes on and on. It’s not itchy in the same spot, it moves around. After a while it subsides. Is that the kind of itching involved with MS ?
Hi steveo, I suppose everybody that experiences itching has their own unique version, and one is just as authentic as the next. My own itching feels like a real itch, like contact dermatitis as an example. But when I scratch it, the sensation evaporates even before the scratching commences. That is what makes me call it a phantom sensation, or a neuropathic sensation. Nothing has actually irritated my skin, it’s that my nerves have delivered an itch message based on a bad connection. But it is interesting what people experience as an itch when they describe it. Thanks for adding your experience, steveo! –Kim, multiplesclerosis.net Team Member