My Experience with MS Nerve Pain and Its Associated Sensations
I often swat at my arms and legs because I feel a sensation akin to an insect crawling on my body. Sometimes I have a feeling of wetness on my skin as if I’ve been splashed with water, but when I touch the area, there is nothing there. My experiences are examples of the unusual sensations associated with neuropathic pain that can accompany multiple sclerosis (MS).
Other sensations or “sensory symptoms” may include itching, tingling, or prickling of your skin. Though it may feel like your skin is the villain, the problem is more deeply rooted; damage to the body’s nerve pathways can present itself in various ways.
I notice these sensitivities mainly on my arms, legs, and face. But they are not limited to those areas. I feel pins and needles sensations on my back; it is a numb, tingling pain just below my neck. Nerve pain, like other MS symptoms, can occur randomly.
Of all of my sensory symptoms, the burning and numbness in my feet, and more recently my lower legs, is the most painful. I experience this pain every day. Previously it happened only in the evenings, but now it can be present for most of the day. I have found that a cannabis edible or extra strength Tylenol can ease the pain. Massaging in cooling lotion also seems to help.
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My sensations seemed to increase following a recent MS flare-up; from what I’ve read this is not surprising. During a flare-up, the immune system activates inflammation which causes demyelination and damage to the nerve pathways.
Visiting your neurologist after an MS flare-up or following any unusual sensations can help to track possible nerve damage.
The U.K.’s MS Trust’s website lists the medical terms used to describe the type of sensations you may experience:
- Allodynia: “where something like a light touch feels painful, even though it shouldn’t cause pain.”
- Paraesthesia: “an annoying unusual sensation, like tingling or numbness, which may be triggered or just happen spontaneously.”
- Dysaesthesia: “a more intense, sometimes painful, feeling which happens spontaneously.”
- Sensory symptoms: “a more general term for altered sensations.”
It can be helpful to keep a record of your sensation triggers for your next doctor’s visit; these can include a change of temperature or engaging in specific activities. Track the frequency and duration of the sensations. When your doctor has all of the information about your symptoms he or she can prescribe the most effective treatment for you.
Please join us in the MS forums to discuss this topic. You are also invited to follow me on Instagram.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Lorrie Norris
With PPMS, this is with me 24/7. I don't have flare-ups, this is me all the time.
Debi Wilson
Hi Lorrie,
Yes, I understand, I have PPMS also, a flare-up for me is if I have extreme stress , anxiety, heat and humidity or infection. Then the symptoms that I normally live with can worsen.
Thanks for your comments! Debi
Mary Ann Cincinnati
Same w me Debi. MS SUCKS!!??
Debi Wilson
Yes it does, Mary. ❤️
Evelynne McCormick
..... and me now for 3 years. Devastating symptom!
I have PPMS too.
Debi Wilson
Sorry to hear that,Evelynne! Thank-you for sharing, Debi
Dan Pottman
Secondary Progressive the same. The perpetual flare-up-- II'm so sick of it
Lisa
I have SPMS and it’s also with me 24/7
Jeannine
Ok, I have had those feeling like water splashed on me, but feeling around.there is nothing there. I thought is was just being crazy, never even gave a thought to it being an MS symptom!!!! Thanks for telling me.
Debi Wilson
YW,Jeannine,
Thank-you for your comments! Debi
Tracy Williams
I have these symptoms 24/7. I've dealt with pain pretty much my entire adult life and learned to live with it so when I was diagnosed with ms, pain was nothing new to me. People think because you put on a normal appearance that you are fine.I don't like to take the over the counter laboratory medicines. Hopefully medical Marijuana will become legal in Tennessee. I would gladly have my limbs amputated if that would stop my pain. I know what you are feeling.
Debi Wilson
I’m sorry for all your pain, Tracy. I hope marijuana gets legalized in your state soon. The edibles do help my pain. I’m like you I don’t like to take over the counter meds unless I have too! Thanks for your comments! Debi
Lydia
Yep, also can relate to everyone. For awhile the pain was severe enough to interfere with sleep. That’s when my neurologist had me try Gabapentin , and it seems to have helped. Enough so, that if I accidentally forget to take my medication it’s the pain that serves as a reminder.
The joys of having MS!
Debi Wilson
I understand, Lydia! Thank-you for sharing your story! Debi
Cheryl Likins
Me,too. Gabapentin seems to help in ways that other medications don't.
GARY SHAMBLEN
I had a knee replacement 4 months ago. The first month there was no pain. Gradually, things began happening. The swelling of my lower leg, due to venous insufficiency, began easing and I could feel my knee getting stronger. But then that reversed into weakness. I started pool therapy, which is always great and some strength returning Being able to walk unassisted feels wonderful. But upon returning to gravity things reverse back to pain, stiffness, and all the aforementioned symptoms of the above contributors. I'm getting my hip replaced in 3 weeks. Wish me luck in your prayers.
Debi Wilson
Thank-you for sharing your story,Gary. Praying for a successful surgery and recovery! Debi
Dr. Mario M. Mercado, 1SG, USA, (Ret.)
I tried the Cannabis drops, available here in Germany, and they did nothing but cost $$$$. I started having symptoms when I was 27 and in the Army at Ft. Sam Houston, Texas. I've tried acupuncture three different times with different results. The first was a Nurse and she did a great job; helped a lot. Now, at 65, I can't express how much pain I experience when I have a relapse. On a 1-10 scale, I'm far off the scale. Neurotin helped a little, but really nothing works. Many people over the years have asked if I didn't wish someone else had MS instead of me. My response has always been "No". I wouldn't wish this on anyone. There is a British Physician who has a "cure" for MS. Her trials start next year.
Debi Wilson
Hi Dr. Mario,
Thank-you for sharing your story, and I’m sorry for all of your pain. I look forward to reading about the British physicians research that you talk about. Good luck to you, Debi
Deborah T.
I also suffer from pain and numbness/tingling related to my MS and after doing a lot of research I have started taking R Aloh Lipoic Acid 600mg twice a day and i am finding that it really helps! It also has some neuroprotective and antiinflamatory effects to hopefully slow down brain lesion progression.
You have to be careful in reading labels though because most of what is sold as Alpha Lipoic Acid is the cheaper quality S Alpha Lipoic Acid and the one you want is R Alpha Lipoic Acid which costs more and is more biologically available. Many brands are a mixture if both so check carefully for the amount of the R Alpha Lipoic Acid on the label as the cheaper kind is way less effective.
And do your own research- there is a lot of material out there on R Alpha Lipoic Acid.
I am also researching and getting ready to start the high dose Biotin protocol.
Good luck fellow MS'ers ?
Debi Wilson
Great information, Deborah! Thanks for sharing, Debi
Dale
Alpha-Lipoic Acid takes the edge off the neuropathy pain, and I've found two high quality Hemp CBD products--a balm and a massage serum--that do wonders.
Jenny S
I use an ice gel pack on the soles of my feet to stop the MS nerve pain. I also carry it in a insulated pack wherever I go.
Sally Anne Judd
Thank you, I'll try that for my soles of feet, which is like a cramp, also I need something to ease my legs that nearly most of the time feel like !'m walking with lead weights attached! I try to keep moving, Walk and Play Tennis although the People I play with know my problem as I can't move for the Ball like I used too!...Gym bike, Rower and sitting arm exercise, all in moderation but I need to keep on the move as saying goes, with everything, Use it or Lose it! True
Sally England
Jenny S
I would have posted this earlier but I wanted to make sure it worked all the time. I have been doing this for 1 year now