Have had this disease since 95...spent first 4 years trying to find a doctor that even recognized it....no such luck...stopped seeing doctors for quite a few years...just had to live with it....last year my mother found a doctor ( she has researched this disease for quite a few years and finally found a doctor who treats it) in Toronto who has been trying to help me. So far the medications I have tried have not helped. I have heard that some people are treated with chemo? Has anyone tried it? I am on disability as walking is difficult..use a wheelchair if I go to the mall or anywhere where there is a lot of walking. I function, some days are really bad, especially in my one foot, where I get knifing pains In two of my toes...this is a fairly new symptom. But I won't let it ruin my life, I still go to bingo sometimes and can drive...for now anyway....I don't have a computer so if I don't answer anyone it is because I don't have access at that time. Let me know about treatments that you may have tried that help.
I have been helped by lumbar sympathetic nerve block injections. ‘Injection’ makes it sound like a simple procedure but it very expensive (in the USA) and has to be done at a pain clinic. Once a week for 4 weeks helped me. It didn’t make the pain go away but made it much more bearable.
Hi bingolover66.
I have yet to find a medication that helps mine but I know some people are helped with aspirin. I can’t take aspirin because I am on blood thinners. I would think if aspirin was going to work blood thinners would too. Unless there is something else about aspirin that makes it helpful other than the blood thinning qualities. I somewhat manage mine by keeping cooler in general and limiting activity. It’s no way to live but it’s far less painful until I can find something that helps enough to be more active. I hope you find a suggestion that works for you.
Alina.
I think you're right, Alina Delp, that any blood thinner will take the place of aspirin, since it's the blood-thinning effect of aspirin that helps (if it's a myeloproliferative blood problem causing your EM).
My doctor recently gave me a lidocaine gel to rub on my feet. It numbs a lot of the discomfort, and may be also helping in calming my foot nerves, since it's a sodium channel blocker. But I only use it at night, so I can sleep. It only lasts maybe 4 hours or so. But by the time it wears off, its the wee hours of morning when my feet bother me a bit less anyway. I do like Alina says, in the day - soaks in cold water (feet in a plastic bag) and then elevate my feet over my head (I lie on a futon and put them against the wall.)
Since 1995!? I'm so sorry for you, bingolover! Almost 19 years! I hope the researchers come up with some relief SOON! You especially deserve it.
Jane
Hi jane. You said you find relief with a lidocaine rub? Why do you only use it at night? Side effects? Or does it just numb it so much you can’t walk? My doctor and I are considering the lidocaine infusion method but if the rub helps considerably that would be much less invasive! Thank you
Alina
Hi Alina, and all, The lidocaine is in a gel form, in a tube. I only use it at night (and really not every night) because I always imagine the worst about every med I've ever had to take (I haven't taken many because of this). I read about lidocaine and it is a sodium channel blocker, that also works on sodium channels in heart muscle to slow heart rate. That reminded me that when I worked in the local tiny hospital as an LPN (that's "low paid nurse"), lidocaine was usually given IV to patients in the ER for heart attacks. So that worries me. But - I've noticed no side effects. I'm just squeamish.
Also, my doctor said I should be sure that in every 24 hour period, I should have 12 hours straight when I did NOT use it, because it could become ineffective for me. So me being me, I try to only use it every other day or so. I do understand that I may get to the point where I can't stand it and say "give me all you've got, Doc!" and forget about my worries.
I'll say that for me, IF I first soak my feet in cold water long enough to calm the flare and get them temporarily comfy, and then rub on the lidocaine, it feels great! It's the best my feet ever feel, flare or no flare! I then go right to bed to take advantage of being able to sleep. If I rub it on during a flare, I don't feel any discomfort but I still feel the heat, which is so uncomfortable all by itself that I can't relax.
I can't say how long the lidocaine works for me, because I do fall asleep, and usually can sleep thru the night, since my feet tend to calm down a bit in the wee hours of the morning anyway. But I'd say at least 4 hours.
Another thing, if you use it, I'd wear a plastic glove to apply it, so it only affects your feet, unless of course your hands are hurting, too. I already had a lot of numbness in my feet, even before the EM, due to compression in my spine (trying "circus tricks" as a child). But even with the lidocaine, I can still walk if I need to, without falling over.
No body can give a long, drawn out answer worse than I can! Sorry. Try the lidocain gel. It may not be your answer, but it is some of mine. And it's not as hard on the body as injections or pills.
Jane
Thank you Jane for the reply. I love a good long reply so no worries! I ask because I have a hard time even walking more than about 10 minutes in the typical room temp (67-70) far less if it’s hotter. I would love to find something that helped me leave my house. Even just to sit in a restaurant long enough to enjoy a meal ( hour - hour and a half). That alone will open up so many doors for me. Do you know the dose you take so I can bring that info to my doctor? He says he has never prescribed lidocaine before and sent me home to do research on lidocaine IV doses others are using for relief. I would love to try the cream first. I can’t imagine leaving my house a couple of times a week and sleeping well a few days a week! The thought is so exciting! I would use it half every other night and evey other day so I can have the best of both worlds! Thank you so much for your help. 
Alina
Thanks Alina - first, I do think your case is worse than mine, though mine is definitely with me! But I can imagine the gel might give you some time at a restaurant. Definitely worth a try. I can tell you're use to being active.
Instruction says: "LIDOCAINE 5% OINTMENT TAR, apply topically 3 - 4 times daily."
The ingredients say: "Lidocaine USP, 5% in a water-soluble base containing polyethylene glycol 400, polyethylene glycol 3350, and propylene glycol". Made by Taro Pharmaceuticals, inc., Brampton, Ontario, Canada L6T 1C1, and distributed in USA by Taro Pharmaceuticals U.S.A., Hawthorne, NY 10532
Its's a 30g tube. I use less or equal to a pea-size on each foot, but that's for you to discover for yourself. I sure hope it gives you some relief and more out-of-the-house time. It does cost about $67 at Walmart (need a prescription, of course). But I think it will last for a bit.
Let me know if your doctor says yes, and if it helps you!
Jane
Alina, I just read on the Sodium Channel Blockers blog started by Mads (definitely check it out if you haven't), that Mads (or was it Elizabeth, my head is swimming) has serious rebound effects with the topical lidocaine - where she gets a few hours relief and then its worse than before. I haven't noticed that, but then I sleep after using the gel, and maybe I haven't been associating "worse days" with lidocaine - or - I don't have the same rebound problem. Just wanted you to know.
Do check out that blog - it's interesting.
Jane
Thank you so much Jane. I am bringing this to my pain clinic appointment next week. I will let you know if I get it and if it helps. Thank you again. I really appreciate the time you took. Take care
Alina
You're welcome! Time is what we really do have. Do please let me know what happens.
Jane
Hi Jane. Well I went to the doctor and she prescribed that ointment. I tried it last night for the first time on my hands. Strangely my feet have been freezing lately unless I walk , the they burn. My hands and my face/ eyes are the worst right now. At night I have to sleep in a cold room with a blanket on the rest of my body but my hands poking out the top. If my hands get under the cover in my sleep it burns and swells. Then I wake up to get them out just to fall asleep and put them back in! It’s just not comfortable to sleep with your hands up by your face all night. Anyway, I tried the lidocaine on my hands last night and it did help. I was able to keep them under the covers and go to sleep.I will give it a real test today with my feet and walking. Last nights pain is not near as bad as it can get so I want to test it on a little more intense pain. Thank you for your help. It has already helped! Take care Alina
Do you know if there is a brand name....is it prescription?
Hi Bingolover66. Mine says it’s made by Hi-Tech pharmacal it says lidocaine ointment USP 5% it contains lidocaine 5% in a water soluble base consisting of polyethylene glycol 300,polyethylene glycol 1450 and peppermint oil. It’s nice because the peppermint oil feels cool too. I have yet to try on severe pain but it definitely helped with mild- moderate. My only problem is you can’t use very much at a time so it won’t cover multiple areas. If it’s just your hands or just your feet it’s great! I was able to get mine at Walgreens and it cost me 25$ with my insurance. Hope this helps you. I know some people said they actually have a bad reaction to it but I did not:)take care,Alina
to Bingolover, I put all the info, name, company etc. in a previous comment (my name, 6 comments above this one.) I hope it's useful. Yes Lidocaine is always a prescription. Good luck.
Hi guys,
just to clarify to my knowledge and in my experience no rebound effects with lidocaine infusions or mexiletine. Myself and 3 other ladies i communicate with are all on this treatment and having positive response.... one has remission for 3 months now. Side effects are manageable and negligible when it comes down to it... Choice- whatever relief one can get - however nominal or 24/7 living hell. I find i am seeing more and more rather anecdotal comments from people who are not on the drug nor have they tried it- i find that very disconcerting.We are all here to help, support each other not frighten and dissuade. Research papers can inform and educate but please dont just take things as a given fact. Everyone is different. Different coping mechanisms, different psychological /physiological profiles and emotional states. What works for one doesnt work for another. The best we can do is talk , share truthfully the ins/outs about the drugs we are on , their effects on us personally, our coping strategies, individual flare minimisation tactics etc...
Can i just reiterate that you need to undergo hospitalised testing to check you react safely and positively to sodium channel blocker therapy. ... it is not the treatment or solution for all EM'ers. Testing involves a 30 min- 1 hr infusion on average.When you first have lidocaine and mexiletine yes you do tend to flare, cramp etc..more for first few days- week, but hey- worth it.
Thanks to Jane and Alina for raising the often forgotten topical SCBs ie:lidocaine gel/cream/patches and baxter pump method. My experience is that they offered brief short term relief and can be impractical ie: administering, gloves or infection with pump etc.... If one has chronic widespread EM then directly into blood stream via IV infusion and then taken orally offers varying degrees of relief and easing of certain symptoms and sustainability without breakthrough. Personally i found that breakthrough then causes rebound . Topical methods like gels can really help , especially more localised EM ie toe, knee etc.. big benefit is they are also easily more readily prescribed. .Lidocaine has a half life so tends to last on average anything from 7 days to 3 weeks . Mexiletine also has half life of approx imately 8 hrs so we normally take it 3 times daily to maintain levels .Mex also has to be tritated up slowly . Everyone on the SCB therapy takes different doses- its not a one size fits all.
PS: For bingolover66 you need a prescription in UK, but you might be able to buy an EMLA cream for topical anaesthesia which contains lidocaine and prilocaine in other countries.
God bless
mads
Good stuff, Mads! I agree. And Bingolover, as I said, the lidocaine gel does also require a prescription in the US.
((((Jane))))))))))))))))) Thanks x