Columns MS in Moderation – a Column by Tamara Sellman Need to Know: Why Are My Feet Burning? Need to Know: Why Are My Feet Burning? by Tamara Sellman | May 30, 2019 Share this article: Share article via email Copy article link Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “MS Burning Feet and Hands Could Be Erythromelalgia,” from Aug. 14, 2018. Burning sensations in the hands and feet You might be sitting on the couch watching TV. Or you could be sleeping. Maybe you’re working at your desk (like I am right now). Suddenly, it feels as if your feet have caught fire and your toes are alight. Perhaps it’s your fingers that feel like they are shooting flames from their tips. No, this isn’t a sign that you have a hidden superpower — rather it suggests that as a person with multiple sclerosis (MS), you are experiencing something that is known clinically as erythromelalgia. Erythromelalgia: The basics Burning sensations generally belong to the broad spectrum of symptom clusters referred to as “pain syndromes.” Pain takes on a variety of sensations, especially in those with a neurological condition such as MS. It can be felt as throbbing, stabbing, cramping, itching, aching, tingling, or burning. Erythromelalgia falls into the last category affecting the feet or hands, which is clinically described as peripheral pain. In rare cases, it may spread to upper or lower limbs, or even to the face. The skin may look reddish and feel hot to the touch. However, the condition doesn’t occur as a result of direct exposure to heat, but rather is due to the dysfunction of the peripheral nervous system. The peripheral connection The peripheral nervous system comprises the nerves that serve the extremities and include motor nerves (muscle control), sensory nerves (sensations), and autonomic system nerves (involuntary processes like core body temperature and blood pressure). Erythromelalgia is an example of peripheral neuropathy, where mixed signals from the brain — due to demyelination activity and MS lesions — can result in chronic unpleasant sensations akin to someone holding a match to your hands or feet. This intense burning nerve pain can happen in brief episodes or linger continuously; it may be mild and gradual or acute and severe. The vascular connection The condition shares a critical connection with vascular health. According to the National Organization for Rare Disorders (NORD), “Erythromelalgia is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities.” Triggers For people with MS, a common trigger is heat intolerance, either because of the environment or due to exercise. However, about 5 percent of primary erythromelalgia cases are familial, regardless of neurological health status. What you can do if you feel like you’re on fire In her column “Faith of the Mustard Seed,” Debi Wilson outlines ways to address your “burning issues.” Following are Debi’s suggestions and some of my tips for relief of your erythromelalgia: Apply a cooling lotion. I’ve found products containing peppermint essential oil do the trick, as do those with capsaicin. Try topical products such as magnesium spray or cream that includes CBD — if available and legal in your area. Consider oral supplements of magnesium or CBD edibles. Place your feet or hands in a bath of cool water. Drink a tall glass of cold water to prevent overheating and dehydration. Remove socks or avoid tight-fitting shoes. Or conversely, wear compression stockings. Avoid drinking alcohol or eating spicy food. Medications that might help include nonsteroidal anti-inflammatory drugs such as ibuprofen or naproxen. Some patients may find relief with prescription gabapentin or lidocaine patches to cool the affected areas. Others may respond to pregabalin. However, no single solution is consistently effective in treating erythromelalgia. NORD suggests that this indicates the presence of subtypes of the condition. You may need to try various medications and therapies to find the treatment that works best for you. As always, consult your doctor before deciding to take any medications or treatments. Do burning feet or hands wake you at night? Have you conquered erythromelalgia? What has helped you to manage this unusual MS symptom? Post your replies in the comments below or at the original “MS Burning Feet and Hands Could Be Erythromelalgia” forum entry. *** 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. Print This Page Tags gabapentin, need to know Comments Tim Hiley I experience restless foot syndrome nearly every night when I am laying in bed prior to sleep. I've had MS since 1996 and this is probably one of the most annoying symptoms. Of course, this ceases to bother me once I fall asleep. Reply Tamara Sellman RLS is definitely an annoyance and can significantly disrupt your sleep. However, it's not the same thing as erythromelalgia (just to make sure people don't confuse the two). Tamara Reply Debbie Fogel I have burning feeling in my feet and redness. Basically on my right foot which is my drop foot. I sleep and sit with a them raised Reply Tamara Sellman Thanks for writing, Debbie. I, too, find some relief in putting up my feet. I'm sure changes in circulation can help at least a little bit. Tamara Reply C S Laughran I was finally diagnosed with MS (RR) in 1983 & have stabbing feet pains & cramping for years, but thought it was also due to arthritis. This now makes total sense. Thank you. Reply Tamara Sellman Happy to help! I also have RA, so the battle of knowing what is MS and what is RA, or just plain ol' aging, is a constant one! Good luck to you <3 Tamara Reply Laurie Vasquez Diacan I have the same promlbes the pain hurt's me so bad makes me cry I rub my foot I sit on my bed try wake it's up I have a afo that I used on my right foot what and please tell me what to do This was cuz my back surgery and fushion to the spine I never had trouble walking only back problem since was 22 Reply Carol Karlin CBD full spectrum sublingual drops, exercise Reply Sally I'm using Pure Spectrum CBD but doesn't seem to be helping my feet at all. My discomfort is in my heel. Keeps me up at night. What kind of exercises do you do? Reply Tamara Sellman CBD topicals with a cooling element have helped me, at least temporarily. For me, exercises don't fix the burning, it's a neurological thing. Reply Shirley A. Nobbs I apply Goldbond ultimate for diabetics for dry skin. I apply it to my legs before I go to bed and I usually get through the night with out the burning starting up. Reply Sarah I have something similar happening to me with my foot and calf, but instead of hot and burning, my foot is cold, discolored (red and purple) and painful. I am being treated by a cardiologist for my peripheral pain with gabapentin and a low dose blood pressure med amlodipine to open my arteries to improve blood flow. It has been somewhat successful in controlling the pain. Reply Tamara Sellman That sounds very uncomfortable! It may or may not be related to MS nerve pain and discomfort... sounds like you have some artery issues (which I also have). I hope you continue to control your pain issues, I feel like we just don't know how important our hard-working feet are until they become painful to walk on! Tamara Reply Pamela Sounds like you may have Raynauds Reply Tamara Sellman It can also be simple neuropathy. I have a similar problem with a toe that turns blue or white, on occasion. It's not Raynauds, though, it's related to nerve damage from a procedure I had to undergo in the past. As they say, it is what it is. Good circulation helps keep it from being too cold or hot or uncomfortable (at least for me). Tamara Reply Stacy Robison I wake up sometimes at night with my skin burning red from neck to toes I try to take pictures of it to show to doctor well one doc sent me to skin doctor she had no clue I do also have bad arteries It comes an goes finnaly just blamed it on side effect of my meds. It’s scarey hurts you wonder to wake someone then it’s gone away Reply Cheryl Anything cool changes the sensation of burning - sometimes I soak my feet in a cool tub, sometimes I put them on a cool pack, etc. Also, I find rubbing my feet can help - again, it just changes the sensation & the burning sometimes stops. Reply Tamara Sellman All great ideas! I was gifted a foot bath at the holidays and though it feels great to use with hot water, sometimes it's also perfect just filling up with cool water for these very moments. I think you're right, changing the sensation can help alleviate it if only by confusing the pain receptors in some way. Thanks for sharing, Cheryl. Tamara Reply Linda Cavagna There are cooling socks on Amazon Reply Pamela Mosca I suffer with erythromalgia nut I do not have MS but my daughter does. I belong to an EM group and it has been found that soaking the feet in cool or cold water or putting a fan on them only creates a viscous cycle. After the feet have cooled they heat up again only getting worse because they need to keep being cooled off. There is a process that a lot of us have tried and found to be very successful. Instead of cooling the feet constantly we heat them everyday by soaking them in hot water for 20 - 30 minutes a day. This actually desensitizes the feet to getting use to heat. It has worked amazingly well for so many of us. Reply Cheryl Wow, I think I'll try that! I had never heard of this before and have been wondering why my feet feel like they are on fire! Reply Tamara Sellman Interesting, thanks for sharing this, Pamela! Tamara Reply Autumn My feet and legs are on fire worse at night.i use CBD cream and bengay depending on pain. If real bad I eat marijuana butter on toast with jelly to cover the taste Reply Nancy Palumbo This is very enlightening!! Reply Sally I have had MS since 1997 but lately been a lot of heat and discomfort in my heels and legs for about the last 6 months or so. This keeps me up at night to the point I just want to cry. Talked to my doctor and she didn't think it has anything to do with my MS. Looking for any kind of relief. Reply Tamara Sellman Did you talk to your primary about it, or your MS specialist? Usually the primary care physician doesn't have all the info on MS... just curious. Tamara Reply Zenda Trim Hi my feet are on fire now and my legs. I find it is more down to heat intolerance when i get over heated my body is on fire, even my back feels like it is on fire. sometimes my feet are red and painful and the nerve pain worse, so i do put them in cold water which helps. It is down to MS. if you put I am on fire MS google you will see all the graphics people have made to show how their body feels as though their nerves are on fire. Reply Donna Weppler My husband has MS and lately he has been complaining about burning from his butt to his feet. His doctor prescribed a med for restless leg syndrome. It really hasn't eased the discomfort he feels at night. I am going to try some of your remedies. Thank you. Reply Tamara Sellman Hi Donna, was it his primary doctor or his neurologist who prescribed the RLS medication? Sometimes primaries don't think about or know these symptoms of MS and go with the most common explanation. That said, I have heard some people with MS who use RLS meds who find it helps them. Good luck with the remedies cited here, and do let us know if you find one or more of them work for you! Tamara Reply David martin Hello Donna. Sorry for your husband.. I had burning feet at night too.my advise is that _ go to nearby pharmacy and buy praziquantel tablets make a lotion out of 4 of them and let your husband use it to treat those cysts eating his buttock nerves Reply Mary Very informative. Helpful to have language to explained my experiences with my doctor and otc and non medical treatments to try. I always like to read the community comments and replies. Reply Tamara Sellman Hi Mary Thank you. I think sometimes just finding a common vocabulary between patient and doctor is half the battle! We also do have a generous community happy to share what has worked for them. Tamara Reply Janna Mcsperitt I have Behcet’s Disease. Basically treated with the same medication as MS. I have these symptoms plus BMS my mouth burns and I have lesions. If I run out of my HRT estrogen the pain gets out of control. I didn’t put it together until I ran out for 3 months and then started the estrogen again. That and Ampitrexyl an all natural Mexican supplement/ antibiotic. Within 3 days my pain reduced 80 % I also take 80mg Propranolol twice daily and 10mg Amalodipine 800mg of Ibuprofen twice daily. Keeping your blood pressure stable is essential for pain relief.. migraines as well! Good luck my friends. Reply Tamara Sellman Thanks for sharing your experience, Janna. It just goes to show you, we're all living with some pretty complicated conditions, and that often means complex solutions. Tamara Reply Reshelle Cable Hi, I was wondering if hormone replacement therapy helped the burning in your feet? Reply Annette I’ve got to the point of can’t walk three feet on both feet feels hot and bones feel broken . I got steroid shots in both heels very painful but I can go six months or better without any pain it’s been eight months since my last shot and now I have the stabbing pains in my toes which come and go the rest of the time it feels like my toes have lost all feeling . I think the steroid shots actually help best of all Reply David martin Make a cream out of praziquantel drugs and use it every after bath Annette. First soak your feet in the drug water 4 in one liter then be using that cream daily. Note that the worm is so resistant and that it's made family into you.please don't give up. I was victim of the same but now free.. There many other symptoms involved if it works please turn back to better this platform Reply J.J What’s the “worm” you refer to? Reply lisa great information Tamara, Thankyou for sharing this. Reply Tamara Sellman You're welcome, Lisa! Tamara Reply Judy , I have had severe burning of my entire torso for the last 4 or 5 years it's getting worse and worse I have not been diagnosed with MS yet I'm going out of my mind with pain Reply Tamara Sellman I hope you have consulted a doctor about this unpleasant symptom. They should be working to uncover its root cause. I'm so sorry for your pain and discomfort, I think not knowing what's behind it only makes the sensations worse! Good luck, I hope you find some answers soon! Tamara Reply Silver My best relief for the Erythromelalgia pain in my hands and feet, is to either use heated slippers and mittens, soak in hot water, or use a paraffin spa. Cold temps may feel good, but they start a vicious cycle. I’ve been taking Gabapentin for 13 years (1800 mg per day), plus Cymbalta (off label for nerve pain), but the pain is persistent anyway... the meds lessen the pain, but it’s still there. Add this to all the OTHER pain that comes with MS (and I also have fibromyalgia), and it makes the quality of life deteriorate. I don’t even remember what ‘pain free’ felt like. For me, the notion of feeling no pain seems like a fairy tail. Something to imaging Heaven being like. Reply Tamara Sellman Thanks for sharing your relief options, Silver, anything that works for you just might work for someone else. I wish we could all be pain free, but it's not typically the reality. I have MS + RA so I get it! :( Tamara Reply Lynn I to suffer from the burning and tingling. Can't sleep. I rub them, take pain medication and use aspects for nerves. It works sometimes. I also suffer from fibro myalgia. Its never ending pain daily, but I try to exercise to lessen the severity. Sometimes it works. Feel the pain more at night after I get still for the day. Everyday different. Reply Lynn Aspercreme for nerves Reply Tamara Sellman Lynn, it has worked for me in the past, thanks for the suggestion! Tamara Reply Tamara Sellman I think we all feel more pain at night because we have less to distract us and take our minds off of it. I know that's true for me! I hope you're having some pain-free days and nights! Tamara Reply Paula Olson It was great to read this. With my MS, my feet are my main problem. The burning and painful sensation can get unbearable. I take 1 Allegron tablet which is an antidepressant and l find it helps to ease the pain but when it is unbearable l can take 4 tablets and it brings a calmness over my feet. Reply Tamara Sellman I'm glad this post could help, Paula. Thanks for sharing what works for you! Good luck, Tamara Reply Julia Anodyne therapy helped me. Also use Ketamine lotion and take Gabapentin. But if I use the Anodyne system regularly I am able to use less meds. Reply Tamara Sellman Thanks for the suggestions. I know so many people are looking for relief! Tamara Reply M M A Hi Can you plz let me know what's MS main symptom? As I can not differentiate whether the pain and burning I feel in my feet and hand palm is due to MS or something else. Reply Tamara Sellman Hi M M A, MS doesn't really have a main symptom, but many different symptoms of varying severity etc. If you can't differentiate the pain you have in your hands or feet, you should bring this up with your MS specialist. My experience for similar concerns was to have evoked potential tests, blood work, and X-Rays done to identify any other undiagnosed problems: it turned out I had carpal tunnel in both wrists and both rheumatoid and osteoarthritis in multiple joints. I also have Reynaud's disease in one foot. Everyone will be different; the only way you will know is to ask your doctor to look into it. It will mean additional tests, but then, if you can identify separate conditions, you can then treat them and get on with your life, or at least function knowing the "why" behind your pain and discomfort. Tamara Reply Lucrusia I use to run and walk for long distance all my life. Now Im suffering from restless legs burning feet and hands. I changed my exercise to swimming hoping to still stay fit and to find release for my feet. I turn around alot in bed to find the perfect position to sleep but that in itself is exercise. Im awake most time while Im sleeping because my feet needs constant rubbing. In the morning these symptoms dissappear and then Im so tired and tends to feel depress. Can you help Lucrusia Reply Laurie Vasquez Diacan I have the same promlbes the pain hurt's me so bad makes me cry I rub my foot I sit on my bed try wake it's up I have a afo that I used on my right foot what and please tell me what to do This was cuz my back surgery and fushion to the spine I never had trouble walking only back problem since was 22 Reply Neil The burning sensation I felt was all eradicated when I cover my leg or wrap it a cloth, don't expose to cold air..it helped me solve burning feeling Reply Robert Thompson I've not been diagnosed yet. I had some tests about 7 years ago but they were inconclusive except that I was diagnosed with idiopathic peripheral neuropathy. No diabetes and have always been active and normal weight. Recently my feet have been burning and more disturbing is my left hand has been spasming. While trying to type my hand feels weak and erratic. I have done some long walks, hiking and backpacking in some steep hills recently. I had wondered if it was heat induced. Any suggestions? Thank you! Reply Dee Grant Thanks for this post. I have been treating it like it was pressure sores. It started up a month ago and now is on both heels. They are red and the burning is insane lately. Walking on them so painful. Sleep almost impossible. Secondary Progressive so LOL why not a new symptom. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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