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Julie  Stachowiak, Ph.D.

MS Numbness and Tingling Tips

By October 11, 2011

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I think just about all of us with multiple sclerosis (MS) have experienced the numbness, tingling and/or burning that is otherwise known as paresthesia.

If you are really unlucky, you get to experience buzzy feet (or other body parts) all of the time. To me one of the worst parts of this MS symptom is not the physical discomfort, although that can be considerable. I just hate the fact that when I have these weird sensations in my extremities, I cannot forget for one second that I have MS. I simply cannot ignore this symptom, no matter how hard I try.

Adding insult to injury, bringing it up to a doc usually gets a shrug and we get told that it is a "benign" symptom, meaning that it is what it is, but it probably won't get bad enough to negatively impact our physical functioning. It's not that our doctors wouldn't love to help us - unfortunately, there is very little that modern science or medicine can do to address paresthesia.

So, I have assembled a list of the things that I have heard about from others or tried myself to get some relief. Some of these ideas require a bit of effort or even a little bit of "magical thinking," but knowing that they have helped some people at one time or another should provide the necessary incentive to give a couple of them a chance.

Read the full article here: Tips for Dealing with Numbness and Tingling as a Symptom of Multiple Sclerosis

Now I'm asking for your input. What have you done to help with this symptom? Did it help? How much relief did you get? Any and all stories, advice and even whining about your paresthesia are welcome here. I have no doubt that we all want to feel better and we all understand (from first hand experience) how frustrating it is to have this symptom. Most of us are probably willing to try things that others think are "silly" or "weird" in our quest for relief. Share your experiences in the comments section below.

October 12, 2011 at 3:52 am
(1) Bianca says:

I have this over the most part of my left half body. At first I hot some sort of anti-depressent, but it made me sleep al day. Then they gave me gabapentin and it has worked wonders for me after we found ot the right dose for me. Now I have no more pins and needles. My skin just feels a bit weird when touched, but nothing like the way it telt before.

October 12, 2011 at 12:19 pm
(2) jan says:

Wow, Bianca. I could have written this myself except that mine is on my right side. Gabapentin has made an incredible difference for me and has (touch wood) so far, eliminated the horrible “hug” stuff too. I am on 400 mg 4 x a day.

October 12, 2011 at 3:43 pm
(3) Laura says:

Most of my numbness is in my fingertips, toes and pretty much my right side. I too take Gabapentin. 3000 mg. a day. It’s crazy When it’s bad it’s like I can feel the numbness creeping up my neck to my face, to my head. Always on one side or the other, but the right side is the worst. My legs don’t get that hot feeling but they cramp up all the time. Very painful at times. Since the dosage of the Gabapetin was increased I’ve been experiencing hot flashes all the time. So many different sensations from MS. Every day it seems there’s another.There is no quick fix but it sure does help knowing there are people out there going through the same thing.

October 12, 2011 at 3:43 pm
(4) Kathy gavidia says:

I also take gabapentin and it works for me. Have you had weight gain with it?

October 13, 2011 at 1:12 am
(5) Daniel K says:

I’m no fan of Gabapentin/Neurontin. I’ve taken it in the past when I’ve experienced relapses, with the expectation it would help against the symptoms, but it never really seemed to do much of anything. Worse was how I felt after I ended my dosage and would find it difficult to sleep for several nights, giving me a better insight about how it was messing with my body while I was on it.

I’m not a fan of taking medication period, and Gabapentin simply confirms to me why that is.

October 13, 2011 at 9:31 pm
(6) Linda says:

I am on Gabapentin for achiness, but I also take Lamotrigine for numbness/tingling on my right side, mostly face, but also elbow, wrist, etc. Between the two, most of my tingling and aches are under control – except for the arthritis :)

October 12, 2011 at 5:05 am
(7) Jennifer says:

Wow! No one ever talks about this which is the worse of my MS symptoms. I have the numbness in my hands and fingers. When its really bad I have it from my neck down to my toes. I tried gabapentin, cymbalta, lyrica, and muscle relaxers but nothing helped. Further testing showed I had permanent nerve damage from MS. Thanks for writing about this, I needed some tips on dealing with it. Diagnosised May 2008, 29 yrs w/ 2 kids :)

October 12, 2011 at 8:26 am
(8) Val Smith says:

For hot feet, I get those little body wash spritzers at Target and keep them in the refrigerator. Then I take one out at night and spray my feet with cool perfume water. (You could just use regular water, of course.) My 3 year old likes to do it now too, and he doesn’t have any problem with hot feet.

October 12, 2011 at 12:04 pm
(9) Virginia says:

I hate this about ms..well sort of a subset of hating the whole heinous disease. My worse one is the burning of the feet, which I use a plastic bag filled with ice cubes to cool. It does not take away the pain of feeling like someone has a pair of pliers and is squeezing my left big toe. It hurts so much that it brings tears to my eyes. No medication has helped and I just have to tough it out. Luckily, (?), it lasts at most for 30 minutes. I hope you never feel this pain.
I wish you all a good day, free of the rotten symptoms and pain this disease inflicts.

October 12, 2011 at 12:57 pm
(10) Peter says:

Hello Virginia, your description of your painful experiences of tingling has got me to wondering.
I look after my partner who sadly is not able to communicate her state of pain or make known her painful aching part(s).
It is a continual battle to try to make her as comfortable as possible by hopeful guessing correctly and anticipating possible area’s that might be hurting, yet! she never shows signs she is in discomfort or pain!.
And try to explain to carers what pain she might be experiencing, there is just no way to explain, just because she fails to scream or complain, when hoisting, means to them no pain? Very frustrating and lonely.
So these bits of info are of imense help.

October 12, 2011 at 12:12 pm
(11) Anne says:

Hello Julie, at a local Kaiser I have connected with a physical therapist who understands massage therapy, muscle structure and relaxation. Her work has helped me with numbness, tingling and spasticity. The additional lessons of a yoga instructor about stretching and muscle strength exercises, have given me more options to respond to symptoms, and opportunities to get beyond them.

MS presents a lot of individual challenges for each of us, and your outreach is a very positive contact. Many thanks

October 12, 2011 at 12:38 pm
(12) Linda says:

This was presenting symptom of my MS 2 1/2 years ago at age 60…and it never subsides. Began on right side, foot to hip. Then both sides. Eventually retreated to both feet, and sometimes creeping up my calves. It is so hard to determine if it’s better or worse since it’s just always there. Doc says I’m doing good since I haven’t lost any strength, but it sure doesn’t feel good. I’ve had a couple bad tripping incidents since nothing about my feet feel “normal”. I’ve taken Cymbalta for the last couple years and I think it helps me maintain a more positive attitude, although is feels good to whine once in awhile. And I might take Xanax on a really stressful day, but not often. My first Dr. prescribed Lyrica and then Neurtontin…ICK! Couldn’t stand it. Mornings are the worst, but as I get busy during the day I don’t pay as much attention. Yoga was great too, but I recently lost my husband and have a whole new set of concerns and not enough time for me right now. Thanks for listening since about all I ever hear is “but you look so good!”

October 12, 2011 at 1:41 pm
(13) Linda says:

Linda, when I I started reading your post, it was so familiar that I wondered if you were me. That continued until near the end when you said you lost your husband. Then I knew it wasn’t me. I have tried the same drugs you have. Exact experiences. Except my nerve pain is everywhere in my body, and going more and more into my trunk. I am thinking…. that I do so much sitting that it is contributing to the nerve problem. I’m going to see at least one chiropractor (one who specializes in peripheral neuropathy, altho not SURE that this is considred PN, that diabetics get). When I told a long-time friend that I just got a diagnosis of MS (4 yrs ago at age 60), she said, “Oh, you don’t have MS. I know people with MS, and you do NOT have it!”

October 17, 2011 at 7:59 am
(14) Linda says:

Linda, so sorry that you pain is so pervasive. I am so grateful that at this time I don’t use the word pain to desribe my symptoms. Are you doing one of the CRAB drugs? I’ve been on Rebif from the beginning, and although I don’t know if it’s helping stop progression, at least it gives me the feeling of SOME control. I’ll be interested to learn if chiropractice care offers some relief. It is so hard to keeping searching for the right combo of meds or treatments that provide some positive results. I have a friend who tried CCSVI, relief only temporary. My gut feeling is stem cells may be the answer. Who knows. Be well.

October 16, 2011 at 12:39 pm
(15) Olga says:

Oh Linda I can so relate. Mine is all over now but feel and legs are the worst. Tried Neurontin several years ago don’t remember why I got off of it but I know I didn’t like it. My Neruo now has me on Lyrica & Trazadone, some study going on with these 2 meds to help with neuropathy. It’s better but just increased Lyrica to higher dose. Also had me try Capsicin lotion, it’s made with chile peppers. DON’T LIKE IT! Made my already hot/burning feet worse. I gave it a good trial but I just couldn’t take it plus you have to wear cotton stockings with it and sleep with them on. I just couldn’t do it.
I also don’t like it when I get the comment “but you look so good” and no, I don’t want to look bad, but when I hear that it …oh I don’t know…kind of unvalidates how I feel.
Sorry for the loss of your husband. Many (((hugs))) to you. Take care of yourself…remember stress can increase your MS symptoms. Take Care

October 17, 2011 at 8:19 am
(16) Linda says:

Olga, thanks for your reply. Thinking back to Neurontin and Lyrica, what I remember most was exceptionally fast weight gain. Like within a week. Didn’t stay on it long enough to see if that would subside. I kept asking Dr./NP why I needed these meds when I had no pain, only paresthesia. Answer was pretty much “it will help with discomfort”. But that dr. was the one who got the Rebif started immediately. Then I changed Dr’s, went to a University MS Clinic and have a great staff doctor who is involved in research and one who was on MS fellowship. They prescribed Cymbalta, and I haven’t looked back too much. I so get the “unvalidation” feeling. I’m sure not looking for sympathy, just trying to make sense to friends and family that I don’t feel like they think I look….until I fall flat on my face or doze off in an instant. I’m still dealing with a few who also think I’m misdiagnosed. Guess it only matters what I know myself and I’m learning to say “yes” to everything I feel like doing and “no” without guilt. Thanks for you kind words. Hugs to you, too.

October 12, 2011 at 12:41 pm
(17) Heather says:

My numbness usually comes with pain, so I use bio-freeze. It is a cream that you rub on your skin.

October 12, 2011 at 12:44 pm
(18) Katie says:

I seem to get relief when I stretch more. It certainly is annoying, and really scares me. When I feel numbness, I feel I’m going down hill. I’m also on Gabapentin, so I appreciate the idea of increasing it. Thanks everyone!

October 12, 2011 at 12:45 pm
(19) Kate says:

I had really bad tingling in my legs for a couple of months. In bed the sheets were was like sandpaper rubbing against my legs. I found that wearing a pair of leggings in bed really helped as it was like an extra layer of skin that was less sensitive to the movement of the bedclothes.

October 12, 2011 at 12:57 pm
(20) Lisa says:

Since being diagnosed in 2003, I think that this has been the one constant symptom that I’ve had. It’s everpresent in my calves and feet, never ceasing and seems to be more intense in the mornings, but will ease somewhat as the day goes on. I find that warm compresses help (when I am able to sit still for any period of time)and sometimes the compression stockings help to ease the pain. And of course, the docs tell me its just something I have to ‘live with.’ C’est la vie!

October 12, 2011 at 1:22 pm
(21) Shiela says:

Oui, C’est la guerre

October 12, 2011 at 2:27 pm
(22) Jensequitur says:

I’ve become more interested in neurology as a result of my disease, so I’ve learned quite a bit about paresthesias.

For example, I get the feeling that I’m pressing on the tip of my big toe. It feels as if I’m pushing against a flat surface. Remarkably, when I look at the toe and see there’s nothing there, the feeling goes away. There was a really great segment from the folks at RadioLab about this doctor who was able to solve a particular paresthesia with mirrors. The patient had only one arm, but continued to have painful paresthesia in the missing limb. They took their patient and positioned him so it appeared as if he had two normal, healthy limbs – and the problem went away.

October 12, 2011 at 6:43 pm
(23) Rachel says:

I’m a big fan of mirror technology.

You can imitate mirror technology relatively simply. Obviously it’s best if you happen to have a video of yourself doing ‘normal’ things, such as walking, that you can copy.

But, even if you don’t, there are plenty of DIY techniques. E.g. if you’ve lost the use of one foot, try to wiggle both feet in the same way, at the same time, and BELIEVE that both feet are doing the right thing.

October 12, 2011 at 2:29 pm
(24) Hera says:

Thanks for all your tips!! I recently experienced this 5weeks ago as I entered a mini relapse. I ended up taking Pregablin (Lyrica). It was the first time I experienced buzzing in my left foot, itching,burning. I ended up wearing a sock on my left foot/ leggings (like Kate) as when I took the sock of I had all the sensations come back. The numbness in my left leg lasted about 3-4weeks. I so wish I had seen these tips 5weeks ago! Like other have said stretching ,yoga and physio has helped a. I am now at the end of my mini relapse

October 12, 2011 at 2:30 pm
(25) JJ says:

My wife was also prescibed Gabapentin for tingling in her extremities. But she stopped taking the drug a year ago when her MS symptoms disappeared after she had the CCSVI procedure.

October 12, 2011 at 2:48 pm
(26) Olivia says:

I have as yet not found anyone with exactly my symptom, but it’s very close to everyone’s description here. I have had tingling hands for 5 years. It’s miserable. It never stops. I experience stiffness in my fingers as a result. Sometimes the pain goes up to my arms and shoulders. Some days are worse than others. I have always wondered if the CCSVI would help, as it does feel like a nerve or something is pinched. My fingers feel like I have rubber bands twined around them. I do not take any drugs to alleviate the problem as I prefer to use diet and exercise, which I feel has some benefit.

October 12, 2011 at 4:53 pm
(27) Loralee says:

I had the CCSVI last Nov. and my tingling is not as extreme & is just in my right hand & a few fingertips on the left. My legs are no longer tingly. I still have numbness in feet but again it improved. I still experience the hot feeling on occasion but not all the time as I used to. The CCSVI improved my symtoms greatly but did not remove them completly. I do believe once the damage is done you will always have some residual effects but it can be improved. Good luck!

October 12, 2011 at 3:14 pm
(28) David says:

I was diagnosed in January of 2011. When I realize how short a time period I have had the disease (probably began when I was 40 in 2010 – but took a year to be diagnosed), I sometimes worry that if I am having all of these problems now, what will 7 to 10 years from now be like? My sensations with this symptom are quite persistent. I am a teacher and spend a lot of time on my feet. At night they burn like crazy. Two things have helped, elevating them or having them stick off the side of the bed so that NOTHING is touching them. Or using ice water in a big bucket. That seems extreme, I know, but I only use the ice water when it is at the very highest level of pain. It usually provides enough relief that I can get to sleep. I also wanted to thank Julie for these newsletters, they definitely help someone like me who is new to this disease. I realize that there are many people out there who share my pain, even though not many people in my immediate community do.

October 13, 2011 at 6:24 pm
(29) DWesty says:

Interesting comment on hanging feet over the bed. I do that as well. Also…don’t get too hung up on the what-if’s. Easier said than done I know. I have had MS for 23 years and I still worry about worsening symptoms but read a quote by Michael Fox where he said “if you worry about something that never happens, then worrying about it was a waste of time. If you worry about something and it does happen then you will have lived it twice and why do that?”

October 17, 2011 at 11:24 am
(30) Jose Cruz says:

I was diagnosed in 2006. 5 years ago. Things are going fine but as said, the synthoms remind me every day I have MS. The numbless and the fadigue are some of them. I agree with DWesty about your worrys of tomorrow. Nice words. I learned in my experience in this last 5 years that we should push hard to not allow the feelings of the disease rules our lives. There is so much to live, although with a disease like MS and everything that come with it. Exercise is one of my sollutions for numbless and fadigue. Is hard to begin in that moment you think you can do nothing…but after you fell much better..

October 12, 2011 at 3:53 pm
(31) faye says:

hi julie!! oh-yes- that numbness comes on like a switch- in my feet and up my legs some- you can not get to sleep, for it! i havent discovered anything that helps. i rub them-i move wow-i wouldnt wish this on my worse enemy!
lol- i have no enemies!!

October 12, 2011 at 4:24 pm
(32) Dollface says:

Karma is amazing… I’m newly dx (Aug 2011) and so grateful for your newsletter! I’ve been in a funk the past 24 hours because buzzing in both hands that I dealt with all summer had gone away last month but now seems to have returned. When I saw this topic in the newsletter, I dropped what I had been doing and have been reading all the posts and following links through your topic site seeing so much that applies to me! The feeling that my hands are rebelling is still there, but I feel so much less frustrated knowing that it really is the MS and not that I’m just losing my mind. Thank you, Julie for this site and to all the folks that share their experience with this stupid disease!

October 12, 2011 at 4:49 pm
(33) Susan says:

Does anyone else have numbness in their mouth? I have been having it off and on for the last couple of months. It sometimes feels like I ate something a little too hot even though I haven’t. I also have a definite preference of which side of my mouth I hold food and beverages on for the full taste effect. I’m wondering if eventually I won’t be able to taste. It wouldn’t be the worst thing since I’m always having to resist food so I don’t overdo it.

October 12, 2011 at 6:38 pm
(34) Rachel says:

Mouth numbness is horrid; you have my sympathy. About ten years ago I couldn’t feel anything at all on the right side of my mouth and my tongue “felt” swollen.

I lived on baked potatoes, cabbage, tinned tuna and orange juice for a couple of months because eating was such an awful experience. That’s not a diet I’d recommend long term!

Similarly, I lost my sense of smell (and hence a lot of taste) for several months a year or so back.

I’ve found that eating dark green leafy vegetables every single day, without fail, helps to reduce my symptoms.

Missing a day will set my symptoms back by a week, so I make sure I eat the equivalent of two large leaves of lightly cooked spring greens daily – even if it means I’m eating them at midnight.

(I cut the stalks out because supposedly they contain a chemical that can make you sleepy, which might not go too well with fatigure.)

October 12, 2011 at 7:22 pm
(35) Pat says:

Susan, I’ve been diagnosed with M.S. for 22 years. Fifteen years ago I had a 24 hour period when everything tasted bitter. My boss had invited us out for a stead dinner that night and I couldn’t eat it(not typical,) In addition, I do have tremors of my tongue and lower lip at times.
M.S is a humbling disease and full of surprises. Hang in there.

October 13, 2011 at 10:26 pm
(36) barb says:

I was diagnosed with m.s. 23 yrs. ago, I also lost my sense of taste for few days in 1991, everything tasted horrible at that time I was real sick, my right lower leg & the left side of my ribcage around to my back felt like my skin was ripped off & I had a raw burning feeling even my clothes touching my skin was so painful. I was getting icepick pain in the back of my head till I passed out in bathroom, then oddly enough the icepick head pain went away. Now I have a numb right hand & right foot for over 15 yrs. I am lucky Im lefthanded., at that time I was on solumedrol tegratol decadron and one of them i had a steven-johnsons reaction to, that was sooo horrible, cant believe I lived through that. I feel like I was dropped here from another planet with all the weird stuff that m.s. has done to me. But I thank GOD I am still able to walk even if its with a leg brace & cane. I just keep prayin everyday for a miracle of a cure for all of us who suffer from this horrible unpredictable disease. GOD BLESS ALL !!!

October 12, 2011 at 5:09 pm
(37) Loralee says:

I have tingling & numbness in my hands & feet. With my hands I get some releif by simply elevating them. At night I find if I keep them slightly elevated so that my hands are higher than my elbows it does help. I also have the hot feet, which is a nasty feeling sometimes I am sure they are ice cold but no they are actually hot it’s a strange sensation & at times uncomfortable. Have contemplated gabapentin, am on baclofen for the tightenings & spasems in my left leg not sure if I really need to add another drug. The tingling/buzzyness in my right hand impairs my ability to truly feel something like when digging to the bottom of my purse I can’t quite disquingish what it is I am touching. I had CCSVI last Nov. & it greatly improved these symptoms.

October 12, 2011 at 7:07 pm
(38) pat says:

In addition to the Gabapentin, I have also found that when I have the tingling and numbness when I first lie down, I apply lotion to my extremities and rub it in thoroughly. I don’t know if it is psychological or not but it seems to help. In addition when trying to sleep to further counteract the tingling, I visualize our vacations which were mostly to national parks!. This sometimes helps as well.
Yes, I did gain weight from the Gabapentin also.

October 12, 2011 at 8:21 pm
(39) triara says:

Sometimes I lay on the bed and just tap/bang my feet together while keeping them relaxed. Its a bit like tappotage massage. The small jolts distract the nerves and eventually it gets a bit better so I can sleep. I also use Tiger Balm for the counter irritant effect to distract the nerves. I put the TENS unit on such areas sometimes too. I take gabapentin and it makes me get edema past a certain dosage. That would account for weight gain.

October 12, 2011 at 8:31 pm
(40) Shey says:

Im 18 years old and was recently diagnosed with MS around 6 months ago. I don’t know anyone else with MS so you can say that I don’t know how others feel or what they feel about the disease. Its amazing to see how im not the only one who suffers from the tingling and numbness pain. It first started in my right arm and eventually made its way through nearly part of my body. It unbearable, and im very relieved that there are actual ways to cope with the sensation. Thank you for the tips :)

October 12, 2011 at 8:50 pm
(41) jackie says:

I have been reading this newsleter a lot and get so much from it–I was diagnosed 2 years ago at age 56. My older sister had PPMS and I thought I knew a lot about this disease because she had MS for so many years. I had several random symptoms over the course of the past 30 years but none ever rose to the level of really interfering w/my life–altho I always wondered if I also had MS–the few times I raised the possibilty with a doctor I was dismissed. But a few years ago I began experiencing terrible pain in my feet and then I woke up one morning with numbness in one foot-eventually it traveled to both feet (creeping upwards to my thigh) and then the “pins and needles”/ hot shards of broken glass arrived and unfortunately, never really left. When I am not stressed, or on my feet much or too hot, I only have the numb, feels like wrapped in rubber band feeling; but as soon as I am on my feet, hot or stressed, the pins and needles/walking on hot shards of glass returns–always. I am still trying to make accomodations to this–sometimes more gracefully than at other times. I also get the “you look so good” and feel like the subtext is you can’t really be in pain etc…so it feels very lonely and a bit crazy-making sometimes——until I read this newsletter……and finally, it really helped to read that someone else has experienced some of these symptoms in the mouth—docs just look at me like I am daft when I tell them about the fact that my mouth and tongue “burns”–especially late in the day, and or when I am exhausted or hot…..for the past 2 years I usually carry a cup of ice and eat lots of ice cream– but again, it is really hard to “whine” about this very real and annoying symptom because it can’t be seen and just seems well, wierd……Thanks to you all….I am always reminded how much courage it takes to live with MS when I read this newsletter.

October 12, 2011 at 8:50 pm
(42) Cindy says:

I have numbness in both feet, but I started taking Lyrica about 4 months ago. It took about 3 months and a dosage change, but now my numbness has drastically decreased. Is it because of the Lyrica? Who knows. I have recently changed jobs and have much less stress now, so that might be a contributing factor. I also take Mega D3 everyday along with other supplements which also might be helping. I try to stay gluten free, but sometimes I do give in to temptation. I am not on any meds for MS and I haven’t had an attack since Thanksgiving 2008. Strange thing is that I do not feel any numbness until I touch my feet to another surface. Some days the numbness feels like I’m stepping on Astro-turf barefooted. Other days, I don’t feel any numbness at all. I do have a script for some handy-dandy Xanax when my stress levels do get too high. I’m just trying to deal with it day to day, just like everyone else.

October 12, 2011 at 9:01 pm
(43) Cindy says:

I just saw a show on TV talking about Appitherapy (Prob. not spelled right) (bee venom) and how it help people with MS symptoms, especially tingling and numbness in their feet. Any information on this, Julie?

I have been tempted to seek out a bee keeper to see if it would help me. I am certainly game for suffering thru a few stings.

October 12, 2011 at 11:59 pm
(44) Bev. says:

Loralee -where did you get CCSVI my neurologist said he had some patients that have had the treatment and he could see no difference in their MS problems. I have foot drop and I use a walk aid which seems to help but not as good as it once did. I now have had some other things that I did not have before-I have at times a tingly feeling on my extremeties -left side. (Neuropathy) If I open and close my hand it seems to go away-and my foot and calf are cold to touch. (like no circulation) All of the time. Before I only sensed a draggy left foot now many new disorders have cropped up. I was diagnosed in 2002 after meny years of trying to find out what I had-vision was my first symptom
this has markedly increased-seeing double looking to the left and sometimes looking straight ahead. I would still like to try CCSVI to see if I would walk better. improve my balance? or anything. I keep hoping it would just go away The only med I have is baclofen– who knows if helps?

October 13, 2011 at 1:55 am
(45) Daniel K says:

Paresthesia has been the symptom I’ve suffered with since my first days with the disease.

It started with numbness in my feet, mostly my toes. During relapses the sensation would travel to my heels, up my legs and as high as my ribs. My whole body would feel numb and if I lay face down on my bed it would feel as if I was hovering an inch above the mattress – a very odd sensation indeed. I’ve been taking Copaxone since 2006 at age 40, but not before I’d experienced 3 relapses, with each leaving something behind for me to remember them by (wasn’t that nice of them). The worst residual is a constant MS Hug whose intensity comes and goes, from an incessant pressure akin to leaning hard against a table’s edge, to the merely obnoxious “don’t forget I’m here” feeling.

The paresthesia in my feet sometimes makes it feel like I’m walking on crumpled canvas. The sensation also makes it feel like my legs are suffering from poor circulation (which is what I though my problem was before I was diagnosed), and massaging my legs tends to help. Lately my feet feel sore when I wake up, as if I’ve been hiking for miles. I used to have paresthesia in my arms, but that hasn’t been a problem for me for a few years now. Small victories.

The discomfort in my legs worsens when I read in bed (which I like to do but cannot do for long). My doctor believes it might be due to the way my head is bent forward on my pillow, causing a pressure at the base of my spine that affects my nerves. I’ve found that if I place a pillow under my lower back, to arch it upward, I can lay that way longer without an onset of discomfort… (continued with next post)

October 13, 2011 at 1:56 am
(46) Daniel K says:

(Continued from previous post) Otherwise, like others here that have posted, I suffer in silence. Perhaps the best solution I’ve found is to take my mind off what I’m feeling by engrossing myself in some task or other at work. I’ll often become aware of my paresthesia or hug symptoms and realize that I had been able to not notice them for quite a while up until the point I noticed them again. So maybe there is something to the psychological side of it as well.

At the end of the day, if these are the only symptoms I ever experience I will be happy. I often worry they will not be.

October 13, 2011 at 3:38 am
(47) Vana says:

I have this felling on my left leg from knee to the foot. However I do not feel those when my mind is somewhere else for example at work. I also do not feel it whem I wear athletic shoes.

October 13, 2011 at 4:22 am
(48) Steven says:

I woke up one morning a few days ago and my left hand was numb and tingling. I could not move any part of my hand and fingers. I had no control of my wrist ether. The tingling went up my lower arm a little. I lost all sense of touch also. It didn’t last for long. I can’t figure out how it happened. My arms were lying by my side wile asleep. I have experienced intense burning in my lower legs. Stabbing, stinging, crawling, buzzing, itching,etc. The worse most recently has kept me awake,sometimes all night. It’s a itching/burning pain in my shoulder,running down my right arm. I’ve. had it hit my left arm and shoulder also. I’ve tried rubbing it hard to the point where it turned red. I’ve tried using an old vibrator,which seems to help a little. Especially on the back of my neck and upper spine. I get buzzing sensations elsewhere when I do that. I’ve had itching and tingling on parts of my face to. Taking some aspirin seems to relieve some of the itching some what. An increase in body temperature can bring these things on intensely.An MRI of my head with no contrast showed a few small bright spots supposedly in the wrong places and were dismissed. I think the inflation is in my upper spine or neck. There is some nerve damage in my right arm. My Nero says he can’t rule out MS but every thing else has been ruled out. He says I have cronic fatigue. I had balance problems but got a bicycle with a low center of gravity and started riding a lot. My balance has gotten a lot better. Running is out because I stumble and fall. I also have an exercise bike in the house. I am fighting back against the fatigue. I guess I am going to just have to live with this for the rest of my life with no diagnosis and no way of knowing what is causing all this and the other MS like Symptoms I’ve had. I can’t get the Nero to order an MRI with contrast of my neck and spine. He doesn’t think it will tell him anything. He does want me to get a spinal tap. yuk! Thanks for letting me wine!

October 16, 2011 at 11:11 pm
(49) richard says:

change doctors right away without question – don’t even rationalize it, just open up the phone book or ask around. get the spinal tap, not that bad unless you get the ‘headache’ next day so have someone available to drive you right back to the place so that can be taken care of if occurs (due to residual pressure imbalance in the spine caused by the puncture) – discuss this possibility with them before the tap so you know what to do and to be sure they will see you immediately if you call. i had to drive myself back and it was not good so do have someone on hand the next day. have all spinal tests for nerve transmission problems and get spinal mri’s for total length to look for lesions. it could be transverse myelitis, which is not as common as the cranial lesion version of ms and you may have no cranial lesions at all or ever, and it is best to get a grip on that one way or the other asap. if anything is found that requires treatment and doctor wants to watch it for awhile then again get another doctor asap. in other words, stay on top of it until you are satisfied that all has been looked at. it is kinda important to move over and out of the diagnosis portion and into treatment portion right away.

October 13, 2011 at 11:47 am
(50) janice says:

i have had this off and on for years, diag 17 years ago, my leg at one time felt like it was on fire (flames and all) while being down in a bucket of ice. it helped to do self talk, “this is not a broken leg, it would injure it more to walk on a broken leg, so just continue to do your things, ignore it, stay busy.” in my mind i would wrap it as a gift and put it on a high shelf of the closet, AND CLOSE THE DOOR! pain coping techniques. i still worked as a nurse and took care of my family. it seems to help to stay VERY cool (terrible air conditioner bills) especially in bed.

October 14, 2011 at 2:04 am
(51) laurie says:

i am not too bothered by the numbness all over my body except for the numbness in my fingers…it’s like the fingerprints have rubbed off the tips and i cannot turn pages or count money or find anything in my pockets. i am sure i can handle whatever comes my way if i only had the energy! (except the narcolepsy, or the spinning vision, or forgetting how to read, write and do math!)
i never knew why every four or five years my life would change drastically in some way…now i know i’m not crazy, it’s always been the MS.
and “Momentum” needs to stop playing up how “successful” people with MS can be…it just makes me wonder if i’m truly lazy instead of sick.

October 14, 2011 at 10:12 am
(52) NADINE B. says:

I have to tell a short story of how this affected me on one occasion. I was showering and did not feel that my big toe had somehow bumped into the metal part of the drain cover. Well, it wasn’t until I was drying my feet that I noticed all the blood. I had lifted and torn my toe nail. Now I am simply very careful with all my extremities. :)

October 14, 2011 at 10:25 am
(53) NADINE B. says:

I have a symptom that I have a question about. Has anyone experienced pain on their legs that prevent you from walking on occasion? It feels like electric shocks running up and down the leg. It can begin on the ankle and it comes up the leg strikes the knee and it follows to strike the hip joint. I have been thinking of visiting an Orthopedist who is familiar with MS. Any suggestions? The pain strikes when I least expect it, usually early morning before I get out of bed. I take Lyrica for the pain and usually within 45 minutes I can walk again,

October 14, 2011 at 1:23 pm
(54) Alexandra says:

Julie, have you given up on LDN? Have been looking for your column for a few weeks now and have not seen it. I was diagnosed with PPMS in 2006 after a lot of symptoms, the most obvious of which was falls. The worst fall was the one in which I broke BOTH of my wrists. I began LDN about a month and a half after my MS diagnosis, and at the time it felt like I would soon lose all the feeling in my right foot. . .a terrifying thought. After LDN, albeit gradually over months, the burning in my feet nearly disappeared and a lot of the feeling came back in my right foot. I thank God for Dr. Bihari and LDN and what it has done for me.

October 15, 2011 at 6:59 pm
(55) Joanna says:

I take gabapetin my skin so sensitive that no one can hug me anymore …. I miss getting hugs from my children and tizandine for MS HUG that came on me last yr and has not gone away. It’s little relief. When I get slam with the itchy burning sensations to my hands I use a cool pack.

October 16, 2011 at 10:55 pm
(56) richard says:

i had ankle surgery several years ago and woke up with numbness in right calf. soles of feet, stiffness in ankles and that led to diagnosis of transverse myelitis. ever since, the neuropathy has been present. it is most evident at end of day & in the AM lieing in bed. i go to y daily and notice if i stay active it seems to manifest only in soles of feet/toes. when i slow down, it goes back to its ‘regular’ condition. i had cramping at nights & added more vit. d, more water, less caffeine & mostly eliminated that. sometimes left forearm, left chest along lower ribs has abnormal feeling, and rarely base of neck and center of chest, all mostly in the evening. it seems my knees area sometimes feels tight, i hope not. i had tingling at places on my back in isolated places for years and years and never connected it to anything of note, i told my first dr. i thought it was hair growing and he just looked at me like i was an idiot and said something about the same. whether i am an idiot or not, got another dr. anyway; since starting medicine, that has completely disappeared. i try no lactose, gluten, sugar, eat fresh/frozen vegetables, seafood, fruit, supplements and i guess it helps. for numbness, i am trying to match the arm tingling to what i am doing and eating, keeping a journal but have no conclusion. i rest anytime i am tired but do not know if that helps anything. yoga, meditation, exercise and feeling good and trying to deal with things in a timely fashion definitely helps-whether it just takes my mind off it or otherwise i do not know. i will note, there is something to say for not noticing it so much when i am occupied with something i really enjoy doing. it also is very much more apparent when i go barefoot, with shoes i do not notice it – i do not know if it is the act of having my feet bound in a shoe or if it is because of the cushioning of the shoe soles. those are my stats and facts . . . thanks for the newsletter. i read every one.

October 17, 2011 at 3:06 am
(57) Rebecca says:

my feet always “hum”, like the vibrations you get from being on a motorcycle. I can relate to the shards of glass/hot coals comments too. I would have thought someone was crazy to describe it as a painful numbness, but it is sometimes so distractingly painful I want to scream. The stabbing in my heels or calves with a hot poker is always a big jolt of fun too. I take Lyrica and flexeril. Used to take Neurontin, used to take baclofen. I asked for, and got Lidocaine patches that I cut up and put on my feet, ankles, or calves. I think it helps… I sure notice it if I forget to use it. Yoga, stretching, and elevation helps too. I definitely use the “tapping” techniques to distract myself from the pain. It’s usually worse at night. No one else gets how rotten it is to feel this stuff but other MSers… I appreciate Julie’s newsletter and the opportunity to share.

October 18, 2011 at 1:25 am
(58) Wilma says:

I like everyone that has MS would do anything to feel normal….I have been “treated” by a hypnotist for my drop foot and it worked! (besthypno.com–Dr. Leo Gagnon) He has also helped with my weight. My Nucca (chiropractor) doctor, (Irene Adamczuk)’s attitude is “If your back is in alinement, there is no MS.” Sounds silly? try it and tell me if you can’t tell me that there is an amazing difference in your numbness, your bladder pockets, your gait, and your sinuses.
Her number is 585-342-7707. or check the yellow pages…she is in Rochester, NY. She is NUCCA Board Certified Specialist. I haven’t used a pillow in years…I use a rolled hand towel instead. I am still ambulatory. My drink of choice is water, hot & cold, liquid jello and hot chocolate. No coffee or soda at all.

October 18, 2011 at 9:24 am
(59) monica says:

yes gaberpentin does wonder, great 2 her u can get higher dosege because i now i need it. ty 4 the info monica.

October 19, 2011 at 6:40 pm
(60) susan says:

Reading all these blogs is like reading about my m.s. symptoms. I have numbness and tingling in right and left extremities plus the dreaded “Hug” all the time. After I was dx’d at age 55, I had 2 bad relapses, couldn’t walk, extreme weakness on right-side. I have been on Rebeif for 2 yrs, after a short trail of copoxain, with many side effects. I now walk short distances un-aided,can walk around store with a cart, do my own shopping, clean my house, and a lot more than I have done in 3 years. Why? Could be my change in thinking, I decided to get up!! Do exercises, stretching, and walk and just go!!!! I hadn’t done my own shopping in 3 years! I miss my job, and wish I could go back to work, maybe some day. I do love reading about all you other m.s.ers and your symptoms and knowing mine are not worse than any others, we are all in this togather!!!!

October 22, 2011 at 6:38 pm
(61) Vittoria Di Santo says:

I have been receiving your newsletters for some time now and enjoy reading every one of them.
I am from Sydney Australia and was diagnosed with MS in April 2010. I have relapsing remitting MS which started of with optical neuritis. I am injecting Rebif three times a week and I have been much better since I changed over from Copaxone to Rebif.
My doctor, Professor Suzanne Hodgkinson from Liverpool Hosptial in Sydney is my Neurologist and is attending the conference in Amsterdam. I wondered if you may have caught up with her!
Thank you once again for your emails..I love receiving them.
Vittoria Di Santo

March 14, 2012 at 1:05 pm
(62) Gina says:

I have been on gabapentin 400mg three times a day, did gain some weight not sure how much. I also have been having the hot flashes but never thought the meds could be causing it. BTW have not been told i have MS yet. I think the worse part for me is the burning, and creepy crawling feeling. I do think the gabapentin has helped.

March 14, 2012 at 1:13 pm
(63) Diane says:

I have had the numbness, tingling & buzzing constantly since 2005! I have found a few things that do help. The most successful remedy was by a holistic doctor who gave to Alpha Lipoic Acid (ALA) IV’s. Those would almost eliminate the tingling & buzzing and provide minor relief from the numbness. I found that a weekly or bi-monthly IV along with my husband doing stretching exercises for me on the areas most effected by the numbness was best. The areas that he worked the most would alleviate some of the numbness and gain back some movement. My neurologist had a fit when I told her of this and convinced me to stop this therapy.

My current doctor has me taking a high dose of Vitamin D. He says the buzzing & tingling are caused by the deficiency in my body. I just started on it, but it definitely doesn’t compare to the ALA! I need to ask his opinion on that!

March 14, 2012 at 6:11 pm
(64) Eileen. says:

It has been very interesting reading how we all deal with our symptoms, to the two Lindas, I know just what you mean when people say ‘ but you look so good are you sure you’ve got MS?’ I never complain about all the bits that come with this disease, perhaps I should!!
This is how I would describe my right leg. Take a metal rod and bind it up with many layers of cotton wool. On the outside of the leg I feel nothing but that metal rod inside either heats up to a very high temperature or freezes.I don’t take any medication apart from Avonex, I supplement that with Evening Primrose Oil and Vitamin D.
Good to hear from you all.

March 17, 2012 at 3:14 am
(65) murphy says:

Just wanted to thank Julie and the website for her MS newsletters, blogs, and MS forums. I have always felt and truly believe that only a patient with MS truly can understand a patient with MS.

March 18, 2012 at 6:13 pm
(66) CathyN says:

God bless all of you. I just read all of the comments and unfortunately I have all of the symtoms with the exception of the mouth and face tingling/burning. I was diagnosed in 2007 at the age of 51 with PPMS. I have numbness and tingling in both feet/legs (up to the middle of my thigh now) and both hands. The “hug” is always with me too. I have a very difficult time walking but with a walker I still try to get around. I take gabepentin, baclofen and on occasion hyrocodone for sever pain. I started taking turmeric seasoning in pill form a couple of weeks ago after reading an article out of Vanderbilt that this seemed to be helping MS patients. There is no recommended dosage, so I am taking 300mg 3 times a day. I feel some difference and I’m hoping that it may work even better the longer I take it. I also try to eat 4 cups of green leafy veggies a day.

July 2, 2012 at 3:19 pm
(67) Samantha says:

I just discovered this website today after searching “tingling in both hands”. I’ve read through a lot of these comments relating to most things said. I have been living with it for 20 years now and still cannot believe it when I’m told I’m benign-level. With chronic neuropathic pain, for 8 years now, lhermetes, tingling, numbness, THE HUG, spasms and even a lovely bout of good ole optic neuritis. BUT…somehow my legs still work and take me places. Oh ya, forgot about the feet pain and feeling like hot coals especially in extreme heat and humidity. Know what gets me through all this crap? A good attitude. When I feel something awful I tend to get angry at my Ms, tell it to go to hell, then go walking or anything to distract my brain. I won’t do my injection if I’m upset…I wait until I’m calm otherwise I know that needle will hurt more. Also, I have become quite spiritual and I have found that having some answers to life’s questions has helped me to not fall victim, which does no one any good. My support system sucks so I’ve learned to be my own. I’m not ashamed to tell anyone I have ms; I would much rather educate people. Just thought I would share my thoughts with you all. By the way, I have tried most meds and what works for me is Hydromorphone and marijuana.

August 3, 2012 at 11:18 pm
(68) Alison says:

I was dx over 20 years ago at 37 yo with paresthesias in my feet and like I was wearing shin guards to play soccer in. Weird skin sensations like someone else was touching me and not myself. Rejected any meds and did bee stings. Gave up coffee, alcohol, red meat, tried acupuncture which helped a tight knee. For years now it has manifested itself as Erythromelalgia which is red hot extremities which can be controlled by wearing open toed shoes (easy to do in So Cal) and giving up the wedding ring to the safety deposit box :( But just 2 weeks ago felt numbness on rt. side of neck and shoulder. Now bummed. Thought it may have been Shingles but alas a course of Acyclovir for 9 days did nothing. Now have fatigue to go along with it and a feeling like I have weights on my feet as I walk. Funny it should get worse now at age 57.

October 3, 2012 at 10:36 pm
(69) Tina says:

I am having the sensation that someone is either touching or lightly massaging my upper back. I have been told by a neurologist that I have several MS symptoms but a CT scan did not show leisions.

I feel crazy going to my doctor when it isn’t a pain but instead a sensation. It continues to happen and is driving me batty.

Any advice?

October 14, 2012 at 6:45 pm
(70) Laura Knaus says:

Dear Dr. Julie,
I appreciate this newsletter. Thank you.

April 14, 2013 at 6:14 am
(71) pain in left Side below heart says:

There are several precautions that can be taken
to prevent back pain on the lower right side: -Maintain an upright posture while walking and sitting -Bend from the knees, never from the waist, while lifting heavy objects -Exercise
regularly. Most frequently this is a sharp, piercing suffering and will
often times arise off and on. The symptoms of allergic reactions to hair dye often include
burning sensations on the scalp, and skin damage which may destroy hair follicles and result in permanent baldness.

May 24, 2013 at 1:28 am
(72) Lorraine says:

I have just noticed that when I am relapsing, it is directly after a hot shower or bath that the tingling sensation seems to appear. Has anyone else has similar experiences with hot showers/baths? maybe it’s just me, but that’s what I have noticed in my 12 years of having MS.
Thank you :)

June 18, 2013 at 5:12 pm
(73) Emily says:

I’ve been reading everyone’s comments about the rubber band feeling. I can hardly type due to it being so pronounced in my right arm and hand. I haven’t had a diagnosis yet. The neurologist doesn’t think its MS because my reflexes are good and a brain MRI without contrast showed nothing. I also had a nerve conduction study which came out fine. Wondering how you all may have been diagnosed. If its not MS, wondering what may be causing the rubber band feeling, numbness, tingling and general fatigue? It’s worse at times, but always present. Thank you for any insight.

July 3, 2013 at 7:03 pm
(74) China Travel Guide says:

Nice post. Thanks for sharing your such a nice person!.

July 23, 2013 at 9:57 pm
(75) Amy says:

Emily, I was diagnosed with a brain MRI and then spinal tap almost 2 years ago. Got left sided numbness about 2 months ago. having trouble typing as well. : ( completely understand your frustration.

August 14, 2013 at 6:58 pm
(76) Penelope says:

Samantha, thanks for mentioning marijuana–I’ve found cannabis to be very helpful with pain and spasticity as well as tingling. Depending on the strain, it’s also been helpful to me in supporting both wakefulness and better quality sleep. If you live in a state with medical marijuana laws, it’s worth trying different varieties to see whether your symptoms are alleviated.

August 14, 2013 at 9:23 pm
(77) Brandi says:

Off the topic but can anyone please let me know if u heard any info about a new ms patch? I have ms for 6 yrs now and have tried copaxsone rebif tecfidera all w bad side effects! I feel I am getting worse…. Dizzy heavy legs and every day is a struggle! The heat beats me up so much recently and the depression starts to get the best of me at times! I also have anxiety at times and it mimics a ms attack! Does anyone feel the same? Thx for sharing all ur posts

August 15, 2013 at 11:26 am
(78) Lorie medina says:

I have MS. I have not had a relapse since 2007. The last week half of my face is numb. I have a MRI next week. I hate this feeling..

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