Columns Faith of the Mustard Seed - a Column by Debi Wilson MS Burning Feet and Hands Could Be Erythromelalgia MS Burning Feet and Hands Could Be Erythromelalgia by Debi Wilson | May 31, 2017 Share this article: Share article via email Copy article link Erythromelalgia is a rare and painful multiple sclerosis (MS) symptom that I (and others with MS) experience. Almost every night my feet have a tight, swollen feeling accompanied by a terribly hot, burning sensation. It is usually cool to the touch but can feel hot at certain times when a small area of my feet turns bright red. I have found that elevating my feet and having my husband massage a cooling lotion on them can help alleviate some of the pain. Taking a leg cramp pill that has magnesium or a cannabis edible will help ease the discomfort. I have always felt my bouts with erythromelalgia have something to do with a vascular problem. I suspected this because when my feet get that tight feeling, I notice there is a raised vein on the top of my foot. It looks as if my theory was supported in an article titled,”Erythromelalgia as a manifestation of autonomic nervous system involvement in multiple sclerosis,” published in Multiple Sclerosis and Related Disorders. The article states, “Erythromelalgia is a rare condition characterized by burning pain, erythema and increased temperature of the hands or the feet.” Although the cause of erythromelalgia is not fully known, it is thought to be a “peripheral vascular dysfunction that leads to simultaneous tissue hypoxia.” Connect with other patients and share tips on how to manage MS in our forums! The U.K.’s National Health Services (NHS) also believe that the cause for erythromelalgia is unknown. However, they suggest that it could be genetics, having an abnormal amount of blood cells, damage to the peripheral nervous system, multiple sclerosis, or an autoimmune disorder. It could also be the result of taking drugs like verapamil or nifedipine. According to NHS, some of the treatments for erythromelalgia are cooling of the skin, elevating the problem area, and staying in a cool environment. There are certain drugs that can be prescribed as well. Some triggers listed are increased body temperature, exercise, warm socks, gloves or tight shoes, dehydration, drinking alcohol, or eating spicy food. It is good to know there are different treatment options out there for erythromelalgia. If you are experiencing this problem the best course of action is to be checked out by your doctor and to discuss which treatment option works best for you. *** 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 About the Author Debi Wilson Debi is a retired admissions and marketing director residing in Oregon. She is a mother of three grown children and has three grandchildren. She was diagnosed with PPMS in 2010. With her column, "Faith of the Mustard Seed," she hopes to help and inspire others who are also dealing with MS. Tags heat, MS symptoms Comments Shawn Blaesing-Thompson I struggle with this as well, and will usually use a cooling gel with and anti inflammatory in it. Reply Debi Wilson Good advice Shawn, thanks! Debi Reply Vaj Hello, I have had this for ages, the "burning feet sensation" , worse when i had socks on whole day or visited countries with hot climates. Always worse at night< i have been on "Gebapatin tablets" now almost a year and believe me i dont have the problem at all. Good luck. Reply Debi Wilson Thanks for sharing Vaj! I will look into that! Debi Reply roger ddid gabapentin make thE.melagia disappear? or the pain subside? Reply sara gabapentin has been shown to kill brain synapse. it's scientifically proven. just be careful please. Reply Edwidge I have been on Gabapentin for years for treatment of other symptoms. Only in the last year have I really been unable to ignore the ?sensations in my feet as the late afternoon/early eve approaches. I have decided to do a little experimenting. I don’t believe pharmaceuticals are the only viable option. I’m thinking about the efficacy of a foot massage with one or a combination of these Essential Oils(organic) Peppermint, Eucalyptus, Frankincense, Rosemary and Lavender. Remember to mix with your favorite Carrier Oil(organic) before applying. Reply Brenda Wiley Thanks so much for the info.I will give this a try. Reply michelle brenner I wake up during the night with severe burning pain in my heel It is unreal and will try some of the over counter cooling gels or coconut oil Reply Mark I have the same thing going on. Either my feet are bright red or sometime purple. But the last 4 night I wake up about 1:30 am and my feet are on fire. I have try ice packs, elevating them lotions and more . You name it I’ve tried it. I’ve been told I have Plantar Facey -itis but have tried compression socks and bought several pairs of shoes that claim to stop the burning painful feeling I’ve been having. My bother and sisters all have the planter faccitis and Neuropathy and my brother can hardly get around. I don’t want this for me. There has got to be a fix for this at 58 I’m to young to have to sit out of the soft ball game and camping with the grand kids. Help Reply Belinda Walberg Try cutting wheat out of your diet. Which is very hard and I did a bone broth diet for about 4 months. It cleared up my hands, and elbows, got rid of my painful crunching knees and got rid of my irritable bowel syndrome. Everything is fast food and it's not good for you. I hope this helps and good luck. Reply marydevereux You could have been writting about me i had a wet towel on my toes Last night for hours also my fingers and i always have a bad red rash where ever the itch is Reply Debi Wilson Sorry to hear that Mary! Best wishes to you! Debi Reply Ember I have had this since 2015, I'm not diagnosed with MS but it's high on the suspect list with all my other symptoms, in the midst of testing now. I have red palms and bottoms of my feet, sting and burn, tight feeling and my toes are stiff like a board most of the time. I'm unable to walk most days because of it. Thanks for your post Reply Debi Wilson Thank-you for your comments ember! Good luck to you! Debi Reply Merryl I have suffered from the red palms, etc. and not one doctor has a clue as to why. In fact, they do not even comment. When the hands and/or feel get extra hot, they itch and burn. Current doc says it is an allergy. Whoa.... Reply Amy Alpha lipioac acid 200 MG am & pm one week then 200 MG a day will STOP ALL NOUROPATHY SYMPTOMS COMPLETELY! BLESSINGS! Reply Evelynne McCormick Not true for me, unfortunately, though I keep hoping. You see, I have been taking ALA for years along with 2 magnesium malate, 3x 300 mg gabapentin, 3 Tramadol a day, 3 aspirins and I still have very sore, bright red, burning erythromelalgia with the M.S. I have to keep my feet and legs,(red to the knees,) on a fridge - cooled pad at night. I also mix calamine lotion with talc to thicken it enough to brush on my feet and legs with a shaving brush before bedtime every night so I can sleep well, which I do. My feet are on cool pads or near a fan all day. When I get out, which is really seldom, due to the heat and swelling causing no shoes to fit me. When my feet are not burning hot in the morning, they are purple and as cold as stone. 2% menthol cream is very cooling for me as is zinc and calamine cream. Only Lidocaine containing creams actually kill the pain. Eucarin has 3%, benzocaine which helps a lot and is cheap. Lidocaine patches are 5% and very expensive, but pre-tattoo cream at 10% lidocaine is inexpensive, but is sold in very small tubes and is best used on small areas as it numbs. It's the only one that helps me when the toes and heels are so painful I can hardly walk and the inflammation has taken the skin off my feet. For best help,I go to the Living with erythromelalgia page on Facebook or TEA. Reply Edwidge I am so saddened by how MS is affecting you. Have you considered ?? I mean no offense. Reply Evelynne McCormick I pray all the time thanks,Edwidge, and so do others for me. God helps and guides me all the time ,though and I know without Jesus" help,I would not be as peaceful in my mind as I am. CS ? Have prayed for thirteen years. Not a thing has changed for me. The burning and pins and needles has just gotten worse. Rachael Curtiss I experience the flushed warm swollen feet when it's late spring, summer time. My toes are usually always cold though. Although I agree bad circulation is involved I don't think my issues are erythromelalgia. Winters have been more of a problem. Painful feet and hands. So painful. Problem with the feet feels like neuropathy. Anyway. I suffer from Reynauds Syndrome. Another possible symptom of MS. Reply Debi Wilson That's interesting Rachael, thanks for sharing what your symptoms are. I have a different experience and have the symptoms year round. It seems to be another mystery like a lot of things to do with MS! Best wishes to you! Debi Reply Amy M Contreras-Boozer Is this true? I have hands nn feet pain but i didnt know it could be MS Reply Virginia Smalley Tonight my left leg is terribly engorged red angry and the ball of my feet feel as if they are scorching yet when i touch the feet do not feel particularly hot. I had my leg checked for thrombosis two days ago there was none. I am taking an antibiotic but day four and leg is huge very sore and I feel over whelmed by this new occurrence. Interestingly yes I have intermittent cramp in calf muscles and hot pain to ankles. I was relieved to read I am not alone and following every ones advice I shall speak to Doc again tomorrow. Reply Kathi Peterson I had back surgery 4 years ago and have had problems with on going pain and spasms. The doctor prescribed gabapentin, which caused my leg to swell. It was extremely painful. I quit taking the gabapentin, the leg pain then resolved. The doctor then put me on baclofen which made my feet swell and burn terribly. I have discontinued baclofen and the burning has stopped. Always keep track of new meds and the onset of any new conditions that arise. Reply Sally I have not been diagnosed with ME yet but I have all the symptoms. An anti-itch lotion, Sarna, really helps the terrible foot pain. Reply Debbie I have been having tingling, numbness, & itching, burning feet for over 20 years. I always felt some crippling, & pain with my limbs. Now I have very weak ankles, which the ankle will go out while walking/standing. I am now experiencing burning knees. My hands get stiff, red, itchy & have pain now going up my arms. Been to many doctors. Rheumatologist says he believes its erythromelagia. I am wondering if it is something else. I get some relief with Aleve. Can’t take it all the time because of intestinal issues. So I take probiotics to help with that. Any suggestions Reply Debbie P Ditto! Omg, I am identical to everything you described. My rheumatologist also said I have erythromelagalia. I don't know how I am going to find a job. I owned an Ice cream store for 22 years, which was difficult, especially the last 7 or so years. I am hoping I can get on disability, not sure if thats possible. I just called for an SS disability appointment, which isn't til May 9, 2018. I tried to take gabpentin, it caused my headaches, numbness in my head, and dizziness. Tomorrow night I am going to start amitriptyline and see how this is. I would love to find a support group. I am getting more depressed, as I am having a poorer quality of life. I live in central NJ. Reply Starry Debbie. I feel as you do. I was a nurse for 20+ years and got hit with MS about eight years ago I work through the first couple years but then it became too difficult I have yet to put in for disability because it such a nightmare from what I’m told I just don’t have it in me to fight disability casework people who don’t understand how awful MS is You’re not alone Starry ⭐️ Reply Anne Any law school will have a student clinic that will help area citizens. On my 3rd application they won my SSDI & back pmt to my first filing. Get all documentation together, be a good client. Reply Anita Hello I’m new to hear but I am really interested in how you found out that you had MS I’ve been having a lot of strange happenings with my arms legs cramps cold feet cold hands burning feet burning hands and my doctors keep telling me I don’t have MS but I have muscle weakness in my arms so I’m in my hands I have been diagnosed with arthritis and I do have a severe nerve pinched in my left hip and disc displacement is in my lower back and my neck could you Maybe fill me in on exactly what the symptoms are for MS Reply Debi Wilson Hi Anita, MS symptoms are varied and can be different for everyone. One person may only experience a few MS symptoms and someone else may have many. Symptoms that are more common are fatigue, spasticity, cramping, Hot or cold intolerance, numbness and difficulty walking. But like I said there are many other symptoms as well. When my trouble first started I had difficulty walking and my left eye went out of focus. They weren’t sure what I had until lesions showed up on my MRI. I would like to invite you to join the MS news today forums http://multiplesclerosisnewstoday.com/forums/. I am one of the moderators there and it is a great place to share ideas and learn more about MS. I hope to see you there! Debi Jeeny Bunin shooting stabbing prickly painhot and sweaty at night foot and leg so tight what is it Natalie Please apply as salon as possible because if you are found disabled you will get back pay from the day you applied. If it take 1 yr to be granted disability you would get 1 year back pay so apply ASAP Reply Mary Rose I applied for disability, online after ending work 7/13/18. Next...SSDI phoned or wrote to schedule a phone interview. Had to end work which was so difficult financially. Health Insurance- Cobra from work is federal law, medicaid if eligible, medicare is a two year wait depending on your age, I believe there is health insurance available please check with your state. Had phone interview received my first SSDI check by 9/18. No wait No court No Judge No Attorney * Included all Physicians that had treated me for symptoms, emergency room visits, primary care Dr., eye dr, listed all symptoms I ever had plus the on going daily never ending ones like, fatigue, balance, swallowing, numbness, all symptoms. M.S. such a disabling condition, some of us deny and ignore symptoms to continue working (need) yet ignore the possible benefits to our health from not working, ie: gym daily, naps and sleep, less stress. Was the best thing I did and should have done it much sooner. Reply Kathy Hi Debbie, I have a cancer called CTCL-MF. I also have problems with burning. I'm on gabapentin and amitriptyline. I believe it helps but still suffer with it. I believe what helps the most is Eucerin healing ointment. Don't get the store brand it doesn't work the same. All the best Reply Debi Wilson Hi Kathy, Thank for the recommendations! They are very helpful! Best wishes, Debi Reply Starry I could never find a way to explain this to my doc. Printing this and taking to next appt Thank you so much I’m one of the rare ones I guess as I have this exact thing. It’s misery!! As if MS wasn’t hard enough And my walking is so bad I constantly sprain my ankle’s not sure if anyone else goes through this. Thank you for the info Had planned to have for my magnesium level checked and then add some magnesium to see if that helps Reply Ginny I am having so much pain in my feet and they are bright red and hot, also red blotches on them the bottoms I mean. today I have been hobbling so terribly; I cannot even walk my dogs without crying out in pain. I keep a pan of cold water by my chair and plunge my feet into it when they hurt; today the water turned warm from my feet temperature, also swollen and tight with stiff toes. I don't know if a doctor can really do anything for me and I am a bit afraid these days with all the bad medical advice out there.Please I am not ready for the wheel chair. Reply Debi Wilson I'm so sorry you have to go through that Ginny. It sounds terrible! I hope that you do see a Doctor there may be something they can do. Best to you, Debi Reply Starry So grateful I found this site DX with MS 2010 Everyday is a battle But I keep pushing forward all of you are in my prayers Reply Monica As I sit here reading this article I have ice packs under my feet and trading one back and forth with my hands, do not have MS but was diagnosed with fibro years ago. I can honestly say this crap is driving me nuts! Reply Bettina I don't MS, but I have the burning itching problem with my hands and feet usually only at night, I found out taking antihistamine keeps the symptoms away - I sometimes check if it's still there and don't take the antihistimine but the problem is back straight away. I would love to hear if this could help some of you. Reply Jane I have had this for a month it's driving me nuts and waking me up at night the doctor has prescribed NORTRIPTYLINE 30 mg at the moment it is helping. Reply Chandan These are my mom's feet pics currently taken. She is dying in pain from past 1 week. She cries daily day and night I cant do anything rather then keep watching. She says her feet are burning a lot like fire and this is happening since past 1 week. So what I do is apply Neem leaves by grinding it in a mixer to give her coolness. I am helpless and cant do anything rather then giving her medicines which almost 15-20 doctors have given she eats so many tablets. Cant give her antibiotics due to she has liver cirrhosis with nash. So she has to bear the pain in her feet. she cries and I cry inside my heart. I really don't know what our science is really doing. I juz pray to god to make my mom fit and fine asap anyhow http://tinypic.com/r/2ltof1c/9 http://tinypic.com/r/24g0t54/9 http://tinypic.com/r/sbq1yx/9 http://tinypic.com/r/11szfk0/9 http://tinypic.com/r/2ut68ox/9 http://tinypic.com/r/v6ktbl/9 http://tinypic.com/r/29kufmf/9 Just taken today 2 mins back http://tinypic.com/r/6f8321/9 after applying neem leaves picture below: http://tinypic.com/r/25f68tt/9 Need suggestions prayers with whatever you ppl can help. I am from Mumbai India, name is Chandan Nasta Reply Zenda Trim that looks like osteo arthritis which is very painful. Reply Cheryl G I have this as well. It is THE WORST symptom of my MS. I’ve been on all the meds. I’m currently trying IV Lidocaine infusions every7-10 days. I need to drive4 hours round trip plus about 2 hour infusion time. This all makes my spasticity worse. Of course searing burning feet makes spasticity worse. There has to be better treatment. A spinal cord stimulator was discussed by pain MD. I haven’t read good research results with central autonomic neuropathic pain. My life is ruined by this unrelenting pain. It seems to have gotten worse with time. Hanging my feet, ie. sitting, standing, heat , humidity, even cold will bring on pain. I’d love to try medical marijuana for this, but not legal in my state. Anyone with advice for shoes, socks? A good Physician? I take Neurontin, Mexilitine, and now infusions. Reply Candi coulter I have same burning feet issues on neurontin too. I did spinal cord stim 2015 it helps but I don't think anything will totally take pain away. At least do a trial. It is required before permanent placement. Candi Reply Melizarey Hi Guys, mine starts as mild burning sensation on some parts of my foot, it starts on the right one, now as everyday pass, it become more sever and experiencing it on both of my whole feet. any suggestion for alternative medication to lessen the this burning sensation. Reply Ruth I am a functional medicine practitioner who also has symptoms of MS and this symptom and I would suggest Terry Wahls diet to reverse autoimmune disease and MS, and also an elimination diet to find and remove food allergens. The erythromelalgia they say is symptom of peripheral neuropathy and autonomous nerve dysfunction. I would suggest some supplements, multivitamin, methylated B vitamins including folate and B12, probiotic, magnesium, chromium, fish oil, and a trace mineral supplement, on top of the Terry Wahls Diet level 1 at least (no sugar, gluten and dairy free, egg free, and 9 fruits and veg a day, only oils olive oil and coconut oil and nuts/seeds). See her website and books for more details. I would also be concerned this might be a drug allergy. I hope this helps. Reply Kathy Thank You! This I can do, for a month I suffer, feel poisoned maybe is was cinnamon I took lots of it in a smoothie a month ago and it wasent Ceylon type which is non toxic I was at my Moms house sitting, the other thing it could be is I had 2 drinks when out with them karaoke and I don't drink hardly, or I got super upset a month ago Super upset and that may have triggered all this not sure but my hands ache and my feet and my left knee and the top of my back I'm going to cleanse then do the diet you posted about try to get back to my good self and start walking 20minutes a day 5days a week I could exercise for a year so I gained 18 pounds 1 want to be 127 again and I'm getting my Heath back at 56 it's super important to me! I want to visit with my family and it keeps me from doing things with them Reply Debi Wilson Hi Kathy, Thanks for your comments! Sounds like you are making healthy choices and doing what you can! Good luck to you! Debi Reply Brincline Achu I have been suffering of is probkem for over 11 years now. My palms, feet are so hot, burning inside and even all my body is red especially when I'm under the sun. A times, they have a cold sensation but deep inside, it burns. There are also severe increases in temperature. It traumatises me so bad. So what I do most times is I fan my palms or I put dem in cold water for some time. Reply Suzie Has anyone done a blood flow test on their legs to see if that is the problem? Reply Debi Wilson I haven’t, I’ve never heard of that test. Did you have that done, Suzie? It sounds like a good thing to have checked out. Reply Zenda Trim oh my god this is me. I have had it before but not like this i was nearly in tears in pain. my foot is red, feels swollen and veins are tight and swollen over the foot the heel is red. the pain is unreal, but yes helped with cold. i have had it before but never ever like this. i had a different meal yesterday i treated myself to a braised cooked pepper steak. i dont usually eat red meat and now i am wondering if that triggered it. its mildly better this morning but i think i will ring my gp as i am a bit worried. my legs are burning too and my spasticity is worse. going to get my care worker to see if she can get magi cool spray this morning from chemist it worked last time. UGH i hate this. i could barely walk. Reply Isabelle Davis I have had MS for over 50 years and my last exacerbation was hot, burning, red and swollen feet. A dermatologist diagnosed it as erythromelalgia, but several neurologists have said these symptoms are MS. I have been a very active member of the Erythromelalgia Association and highly recommend everyone go to burningfeet.org or erythromelalgia.org for information about the disorder, including treatment. Taking Lyrica cut the burning sensation immediately for me. It doesn't work for everyone; check the website for other meds that have helped other people. Reply Debi Wilson Great information, thank-you for sharing Isabelle! ? Reply Amy M Contreras-Boozer Is this true? I have hands nn feet pain but i didnt know it could be MS Reply Health Healer I am suffering from Burning feet since 2012. I have applied many lotions but didn't get a fruitful result. Please help me out. Reply karen kwasniewski i have Diabetes,Fibromyalgia,Neuropathy,Rhuematory Arthritis,burning and throbbing in both my hands and feet,i'm on lyrica, gabapentin,in the last couple weeks i've been dealing with the burning in both my hand real bad,my Rhuematory arthritis doctor put me on some predison for for days, to help with the inflamation,what kind of specialist would i see for this Reply Karen Good Does any of you get increase in burning of the feet or hands after being in the hot tub will being in a warm water pool for too long Reply Cynthia King Could it possibly be Raynauds Phenomenon? Reply Tatriana Lowery I have had this sense I was 14 but no one knew what this was and I’m almost 30 and it got worse. My hands hurt, burn, itchy, and swell up to balloon size. I have it sometimes on my feet. So far nothing helps me. I have a hard time at work (McDonald’s). Reply Web Page Wonderful web site. A lot of helpful info here. I'm sending it to some pals ans additionally sharing in delicious. And obviously, thanks to your effort! Reply Mary I have erythromelalgia secondary to my MS. I tried various antidepressants, Gapapentin, and Lyrica but nothing helped. The best pain relief i have found is from a compounding cream; 2%Baclofen, 1%Bupivacaine, 10% Ketamine, and 2% Nifedpine. It is expensive because it is not covered by private insurance in the US but worth it if you can pay for it out of pocket. Reply Samantha E Have you heard of mast cell activation syndrome? 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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