First, I guess I should say hello to everyone on here. I decided to join this particular group due to the type of topics, discussions, and hopeful attitudes I found while searching the site. Unfortunately some other EM sites came across too depressing and I just got a negative vibe. I have been suffering from EM since 2014 when I first started noticing my feet getting red/swollen after a hot shower. Then later on after running or intense exercise, and even hikes they would start to bother me. This only progressed for years, with tons of doctors, PT, specialists, continuing to minimize my concerns or misdiagnosis me… we’ve all been there I’m sure. I even moved across the US from NC to WA state because I convinced myself that the symptoms were due to heat/humidity (though I knew something worse was the cause). My symptoms are also triggered by stress, and happen often at night (can’t remember the last time I slept without an EM flare). I now have flares on both feet, knees, hands, and face. Ironically this only caused more stress because I had to stop all my outdoor activities that I love and are my self-care, no sleep, and my job as a psychologist (which I love) might also be a trigger. I was finally diagnosed in December 2018, after a random urgent care doctor took time to really listen to me (I was there for almost biting my tongue off after lack of sleep and loss of motor function) “luckily” this sent me into a massive EM flare so he could see it first hand. He sat with my case and consulted with some others and then decided that it was EM, once I looked it up I almost cried out of happy fear… it was somewhat relieving to have a DX, I wasn’t going crazy. However, the last 5 months have been a massive hardship trying to get into a specialist. I’m still trying!!! I’ve had to take full control on trying to get into UW Pain Clinic. As I wait, I wanted to ask the group some questions:
Have any of you seen triggers happen around food/drink?
What physical activities CAN any of you do that don’t cause EM flares?
What jobs (like talking all day) tend to cause flares?
Best medicine route to take from the start?
Best everyday routines to help with physical and mental well-being (I’ve definitely been depressed).
Activities you can still do even with EM?
Does travel cause EM flares for any of you?
Does massage, body work, or Acupunture actually cause flares or do you find them helpful?
Any life with EM or General life advice for a newly diagnosed human being?
Thanks for taking the time to read my thoughts, any feedback is greatly appreciated.
I have erythro now for about 5 years and is secondary to P.P. M.S. The burning began with an M.S. flare aged 64, with all over body heat, then progressed to regular, increasingly painful flares from the knees down and later on to very bad feet swelling needing at present EEEEE width sandals. When the temperature rises beyond 65%F, the heating up begins gradually. The aching and stabbing pains are helped greatly by 3x a day,Tramadol 3x a day Gabapentin 300 mg and 3 aspirins a day and 3 aspirins before sleep. I now also often smooth lidocaine tattoo cream 10% on my recently very painful toes when the pain is severe and I must go out. Fortunately, in Scotland, all medical prescriptions are free. I sleep well at night, with my legs covered in calamine lotion, thickened with talcum powder, (brushed on with a shaving brush to avoid rubbing,) from my knees to my toes. I keep my feet on a fridge- cooled pet cooling mat at the foot of the bed and I always keep my legs from the knees down completely uncovered. If I wake during the night, with sore toes, I smooth on Lanacane 3% lidocaine cream 60 grams tube, cheap from most stores and sprinkle with talc to keep the cream from rubbing off in bed. I travel with 2 pet-cooling mats, previously cooled in a bag and put them on my feet when sitting down. I turn the cool air fan in cars to full blast on my feet when a passenger in cars and I always remove my sandals when seated anywhere. I hope this helps someone get out a bit more. I struggle myself to get out much, but I recently travelled from Scotland to my family in Dubai, a 7 hour flight, using the cool mat on my feet, re- wetted in the loos and well wrung out, ( no damage to skin if feet and legs are covered in vaseline.) I always cover my feet in vaseline before immersing them,especially if in ice water in an emergency, to prevent very painful sores that take ages to heal and really damage the skin. I carry a small tin of vaseline everywhere I go. Rubbed on legs frequently, it will help protect your skin from drying out, blistering and cracking and hopefully your nails from drying out and even losing part of the nails as I have.
I have had EM for over 10 years. The last 6 or so very severe. I have stopped eating foods that are vasodialiaters. You can Google these. Also if I’m sick or stressed defiantly worse. I don’t drink alcohol or smoke.
Swimming is a great activity and water arobics. Keeps me sane in the summer.
I have had tremendous results with accupuncture. It took three trys to find one that would work with me. She has been amazing. I am off all meds except 300mg gabapentin.
Good luck
I have only had EM for a little over a year but it progressed for the first 6 months and since finding some helpful medications in September of 2018 I have gradually improved to about 80% of my previous active lifestyle. I now live a nearly normal life and no one would know I have this disease unless I told them. I wear normal footwear all year round. I no longer have any color changes with hot showers or late at night or while sleeping. The one thing that still provokes a mild burning sensation in the soles of my feet is walking longer distances in warm weather or doing cardio on my feet like running. I’ll now address your questions one by one.
Have any of you seen triggers happen around food/drink?
Alcohol is a no go for me. Other than that salty foods I think can add to the problem but alcohol is an immediate flare.
What physical activities CAN any of you do that don’t cause EM flares?
I lift weights pretty seriously around 2 hours/day and do stationary bike intervals for 30 minutes 3x weekly. Other than that I try to walk everyday for 30-45 minutes even if it provokes a small flare.
What jobs (like talking all day) tend to cause flares?
Haven’t noticed anything specific.
Best medicine route to take from the start?
Throw everything you can at it and get tested for everything possible. Weeding out causes is the best way to get answers.
Best everyday routines to help with physical and mental well-being (I’ve definitely been depressed).
Getting outside helps a lot and really just trying not to think about the EM. It definitely can control you but not letting it do so is the best way to stay sane. Life is hard, many people unfortunately have much worse than EM so it isn’t the end of the world.
Activities you can still do even with EM?
Just about everything with the medication I take. I just try to avoid situations where I’m stuck on my feet for hours on end.
Does travel cause EM flares for any of you?
It used to but no longer does.
Does massage, body work, or Acupunture actually cause flares or do you find them helpful?
I tried acupuncture and it didn’t help.
Any life with EM or General life advice for a newly diagnosed human being?
Just take life one day at a time, it will get easier and if you stay persistent in your search for answers you will most likely eventually get somewhere and see improvement. EM is not a death sentence, it is just a big life obstacle to overcome, you will be stronger from it.
What medications are you taking that worked so well?
I take 4 medications. Cyproheptadine and feverfew which are both serotonin antagonists and then mexiletine. I also take a beta blocker for my high BP but it seems to help prevent stress related flares. Keep in mind I put hours into research before trying these medications under the guidance of my physician. What suits one persons EM, could make another’s worse.
There is a thread in this forum called “helpful cumulative review paper” where I attached a very helpful published paper that compiled all research of EM, it would be a good thing to print out and bring to your doctor to see what he or she thinks.
Thanks! Yes, I’m finally at the point of spending hours on research. Now to start trying the most effective meds and start backwards. I was a professional dancer and cyclist and now I can’t even go outside or for a simple walk without a flare, but I’m on nothing and obviously a main factor is stress which I’m finally working on… says the psychologist.
can you tell me how much feverfew you take? I am also taking Mexilitine which helps, and use midodrine compounded cream for middle of the night flares.
Joe, just got an appointment with my neurologist this Friday. I need to know the dosages of Cyprohepatodine and Feverfew so I can ask her about my using them.
Hello K2Sunrise. I don’t think my info is worth much but as you would probably have noticed, not everything work for everybody. So perhaps something I say might help. I am also leading a very secluded lifestyle but at least with much less pain than at the start of my EM nearly 2 years ago. Mine started gradually as well, one only recognise the symptoms afterwards as the beginning of EM and then it just went out of control after a Vit B 12 injection. I thought it might be the problem because of my vegetarian diet. Seems that wasn’t the problem and only worsen it. Once it started it just went over board! After lost of test and different doctors and specialist and lots of trial and error meds that mostly aggravated the EM I stayed on my initial meds my gp prescribed from the start. I take Lyrica 75mg twice a day, with a 100 mg Aspirin in the morning and Amitriptyline at night. As well as ALA twice a day. The Lyrica really helped from the start but it took about 6 - 8 months for the meds to get to the stage I am now. Together with my gp we tried a lot of other meds but everyone seems to worsen it. I get a good night (about 5 - 6 hours) sleep most nights and are fairly active (on my feet) the whole day, as long as I go barefoot and stay in a agreeable environment, not to hot. I find that my EM is greatly influenced by changes in the weather, especially barometric pressure. I can take up to an hour walk on the beach as long as it is cool, early morning with sunrise. During the winter months I was so much better. We have a mild winter, I am from South Africa, Jeffreys Bay, and I could wear canvas tennis shoes as well as pumps, with socks and kept my feet covered during the night. Sun is a great no-no for me as for all EM sufferers and during the summer months I found that even flip flops irritate my feet too much after a while. It is a life but severely restricted. I think that is the worse part, the fact that one cannot continue with your normal life as it was. I think there is not a single person with EM that can truthfully say they never suffer from depression in the beginning, and still from time to time. As long as you can adjust to that and manage your activities according to what you are able to do, you can still be fairly comfortable. I hope you get something to help you. My thoughts will be with you
How much Mexilitine do you take?
Yes, once I finally had a DX of EM I’ve been in a depression since Dec. and it’s 100% made it worse and spread.
I know it sounds corny but I know how you feel. I was nearly a invalid with 24/7 flares and was thinking of taking my own life. It just not feel worth living that way. But I hang on and it got better. As the dr describe it to me, the nerves over react and the meds take time to break the path between the brain and nerves but eventually you get there. My kids gave me 2 books that I recommended to another person as well. At first I didn’t find it means anything to me but I think it helped in the end. “the Choice - Edith Eger” and “Man’s search for meaning - Victor Frankl”. As joeshmoe said in reply: it is not a death sentence and many people have much worse than EM. Take one day at a time. Mostly what I realise by reading everybody’s story, it can get better but you have to manage around it and create a new life. Please keep on searching for something to at least give you a bit of relief. I think most of us EM sufferers had spend more hours searching for answers and remedies and relief and with a lot more knowledge than most drs. If you can get to a dr that is willing to try things you suggest that you pick up from other people and willing to do some research on his own, it will be a great help as you know you got support.
And I forgot to add, get something for depression urgently, a lot of the meds prescribed for it also helps with EM.
March 28How much Mexilitine do you take?
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March 28can you tell me how much feverfew you take? I am also taking Mexilitine which helps, and use midodrine compounded cream for middle of the night flares.
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I take 450 mg of mexilitine, which is the upper amount. I started with 50 mg twice a day, then after a week went to three times a day, then another week and 75 mg , then finally up to 150 three times a day. It took time but I think going slow was the best way for me.
Wishing you only the best
K2, Here are my replies to your questions. I was diagnosed in 2017, and had to quit my job which I loved. It set me adrift without my work. I was a professor of nursing.
Food drink: absolutely no alcohol and limited caffeine, no spicy foods, limited sugar
What doesn’t case flares: physically I have found that water pilates is my best friend. Walking short distances is ok as long as I wear sandals
Jobs and talking: not sure if this affects flares. I currently have a vocal cord dysfunction so am on a strict no talking regime, so I will tell you in a couple of weeks if it helps
Medication route: tried compounded amytriptyline and ketamine, no effect, tried oral gabapentin, no effect, tried opiates, no effect, tried magnesium, made it worse, finally tried midodrine compounded 2% cream (but has to be in the right base) which helps with flares, calming them down to a level I can tolerate, tried and use Palmitolethanomide capsules three times a day, which helps my hand flares very very well. Take Mexilitine currently on 450 mg, after ramping it up slowly. This clearly helps me. I use supplements; 600 mg of alpha lipoic acid, 500 mg acetyl L carnitine, not sure if they help but are cheap and recommended by other EM’ers.
Routines and depression: yes to depression, see a therapist, have two pain support groups which really help and did a 6 week class in neuroplasticity which taught me, among other things, how much mental real estate EM takes up and that working with keeping happy is one internal response I can take, especially when I consider the alternative. Every single day I make sure I am up dressed and have something to do. I don’t talk to friends much about my condition and if someone asks I don’t go into it much, just say “up and down”. I don’t want to give the disorder too much air space.
travel: haven’t done any lately, but assume any change will cause flares
massage: is a yes for me as it relaxes me. tried acupuncture but it didn’t do anything
Life advice: You are still who you are, a beautiful, alive woman, who suffers like all humans do, and you will make of your life and the time you have been given with as much grace and curiosity as you can. Find or start a pain group. Put up a notice somewhere asking for others who have chronic pain, and get together once a week for an hour and talk about how you cope, and how it affects relationships, and how you can adjust your life. One of my two groups got a moderator, and we all (4 of us) pass a hat for a donation for her. I have worked as a therapist in the past and found that it was a bad idea for me to try to be the “leader”. I have needs too and need to separate them from leading or taking charge.
Be as patient as you can be, and look for all the beauty around you.
Have any of you seen triggers happen around food/drink?
Not majorly, some alcohols. If I eat a lot at once though esp. in evening, I tend to be worse.
What physical activities CAN any of you do that don’t cause EM flares?
I currently don’t work out. When I did though, I would do so first thing in the morning - found I tolerated exercise / movement better that way.
What jobs (like talking all day) tend to cause flares?
I am not working unfortunately due to the pain. However, I think this is possible in near future. I am grateful that working remotely (in my temp-controlled home with breaks when I need) would likely be an option (computer work). I was helping teach a class when my EM “struck” - and that was hard to finish up. I found talking to people / strangers / superiors to light me up like a fire cracker, or if I’m forced to think on the spot, etc.
Best medicine route to take from the start?
I think highly individual, depending on whether pain is most prominent or vasomotor symptoms are most prominent, though sometimes it is hard to tell.
If pain - I do think Mayo’s first line topicals are a good start, as a way to limit systemic side effects (eg amitriptyline, ketamine, lidocaine … though i would try all individually). If insurance etc is not a barrier, then I would try for a:
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5-7 day continuous lidocaine iv at a pain center. The idea is that it will reset the nervous system - that your brain can reorganize in cases of chronic pain, and this allows it to organize back. If you don’t respond in a few days, chances are you will not respond to oral sodium channel blockers (what my docs told me). This can be a quick way to see if you should spend energy zeroing in on oral daily sodium channel blockers.
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5-7 continuous ketamine iv at a pain center - Idea being same as the lidocaine. Just throwing stuff at you and seeing what sticks. NMDA receptors get proliferated in cases of neuropathic pain and the ketamine iv can unwind this pain. This isn’t first line for EM or SFN - but more for centralized pain like chronic migraines, CRPS, fibro. I think if there is spreading of symptoms and sensitivity to touch - might make someone more likely to respond. For me, ketamine (temporarily) eradicated time of day symptoms, which was missing from lidocaine (which was great for external temp tolerance). There are 2 case studies of ketamine iv helping EM that I am aware of.
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IVIG - to see if autoimmune origins.
I think these are the big guns as far as treatment goes, hopefully one of these will cause something to shift to give a pain doc perhaps some more direction. I’m grateful to have tried them all. Unfortunately nothing “stuck”, but I am told by my derm that infusions tend to be the strongest sometimes in neuropathies.
Of course, if you can find the underlying cause of your EM, then definitely try treating that! : )
Best everyday routines to help with physical and mental well-being (I’ve definitely been depressed).
Deep breathing exercises. Journaling. Connecting with others. Trying to be outside when you can, or just looking out the window. I cry every so often, because it can be dangerous when you keep it in. I recommend John Mulaney’s standup on netflix. And Ryan Hamilton’s standup. Laughing hurts my face/ears but we have to still laugh, sometimes.
Activities you can still do even with EM?
I try to be purposeful with my time. I was thinking about what I’m happiest doing, if pain (+ anxiety…) weren’t issues, and what things of those could I still do? One thing I like doing is learning + math. So I try to read my math texts sometimes. It’s hard to read though the pain, though. And judging myself at going at whatever pace I need to go at.
Does travel cause EM flares for any of you?
yes
Does massage, body work, or Acupunture actually cause flares or do you find them helpful?
not helpful for me. acupuncture caused flares for me. But, glad I tried.
Any life with EM or General life advice for a newly diagnosed human being?
What motherlove wrote above was quite beautiful.
If it is an option I highly recommend seeing a chronic pain therapist.
Also, I wish I had meditated daily at the beginning. Over time with chronic pain, it’s natural for our bodies to get in "high alert mode’ and “fight/flight” - and this will perpetuate the pain cycle.
I think keeping/making a “pamphlet” of meds tried (when/dose/reactions), specific symptoms/triggers, pics and have this ready to show docs can be helpful (helping the dialogue betw. patient + doc for possibly better result for you). One of my derms suggested this to me in the beginning, of course i stubbornly didn’t do it at the time, but wish i did 
Best of luck to you!
Hello! Thanks for your introduction. Welcome to the group, tho I think it’s a group you wish you didn’t have the need for!! Welcome, anyway!!
My research has shown, as the others have posted, we are all different and respond differently to the medications. Here is a video someone posted, https://www.youtube.com/watch?v=s66LvWQ5Qso of a research doctor at Massachusetts General Hospital. I felt like she was speaking my language, and describing me! See what you think. I have had autoimmune issues, including Henoch-Schoenlein Purpura, which she mentions. Also, neuropathy runs rampant in my family, so I believe this is my underlying cause. I’m currently working with my doctor to address things in this direction.
Answers:
I haven’t noticed food or drink, but I don’t drink alcohol anyway. Some days just simple walking, standing (like standing in line - can’t do it anymore), stress, exercise that brings up my heart rate too much, warmer weather (I live in Michigan, and it was 70 degrees yesterday and was so wonderful, but man did I have a flare!)
Physical activités - anything in the water. It’s lovely!!
I’m a photographer, so it’s hard now because you have to stand to take pictures. My new normal is to have a small portable chair to take along.
Haven’t found a great medicine. I take Amitryptaline (sp?) and it has helped to minimize the frequency. I tried the compounded cream with it, along with ketamine, and it didn’t work. I belong to a FB group also, and someone there told me about a special CBD cream that works for her, so I ordered some from the same person, and am waiting for it to arrive. Will update when I try it.
You need to find those hobbies you enjoy, or maybe find some new hobbies that will get you out with other people. I have a knitting group I just love. I also have fibromyalgia, and so I understand the depression. 5-HTP is a good natural supplement for depression.
The last time I flew - about a 4 hour flight - it was very hard. Caused a lot of pain. I’m sure it’s the sitting and the change in pressure.
Light massage is fabulous for me. I haven’t tried acupuncture yet. I use essential oils for helping my mood.
I would say you should do everything in your power to avoid colds and flu. You have enough on your plate - you don’t need that! So whatever works for you in that area, do it!!
Get as much sunshine as you can, surround yourself with healthy living things, find enjoyable hobbies that you may never have thought of, meditate, listen to peaceful uplifting music, and stay connected!
I will keep you in my thoughts!