I have been living with this for about a year now and the medication I am on was taking care of it. I am currently on 100mg of Lyrica and 1000mg of Asprin for flareups. The problem is right now that is all I am in, one big flare up so I am on the asprin constantly which doesn't do any good for my stomach and my doctor wants me to be careful when I am on it. So I am stuck between a rock and hard place. I can't take opiods for the pain so those are out, I am finally not gaining weight on the Lyrica and so I don't want to bump that up and gain weight if I don't have to. So just looking for other ideas to add to the pill regiem I am on to help or other ideas.
hi, i'm on lyrics too. i don't take aspirin any more for the same reason. now i take white willow bark. it helps me and it's all natural you can get it at a health food store or go on line to iherb.com, it's much cheaper.
A little over a month ago, I was diagnosed with postural orthostatic tachycardia (which is a disautonomia) and was placed on Mestinon to help regulate my sympathetic nervous system and lower my heart rate. The dr. hoped that treating the POTS would also help the EM, since both involve circulation.
The Mestinon is helping a ton, mostly because I am now able to sweat. Now I realize that I probably stopped sweating when I developed the EM, and so my body couldn’t cool itself, especially my feet. You have no idea how great it feels to sweat until you’ve gone without! I still have occasional EM flares, but I am so much more heat tolerant than I used to be. I wonder if other EMers have stopped sweating?
Sweating with EM, If I am in the heat or do get hot I still sweat. But I try to prevent that situation because it brings on a flare up. But yes even when I help hubby straighten house I sweat if I move fast enough.
I am still taking Gabapentin daily and have lowered dose because last visit he gave me new meds.
First I say I am so leery of taking new meds because of any reaction.
Last Year that IVIG worked for me but it cause a severe case of meningitis and I almost dies.
Tramadol, I have taken once no difference at that time.
I have Lidoderm patch which is hard to put on feet so I tape it on at times this works great.
But the Lidocaine and Prilocaine Cream works good for me at night.So there it is for me. Sometimes it works and sometimes they do not work as well.This is a hit and miss for me.
I have never tried the Lyrica. Is the weight gain one side effect?
I take Amitriptyline and a small dose controls the flare ups. (10mg). I also tak low dose aspirin every day (81 mg). I get the odd flare up if I'm in a hot place or outside too much, but otherwise OK.
Lizzi, what do you mean by "cold water bath with plastic bags"??
TULLILOU: There has been some research on sweating in people with EM or Small Fiber Peripheral Neuropathy which EMers have. You can find info if you google it, or if these links works. http://www.ncbi.nlm.nih.gov/pubmed/17178984 and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046462/ (figure 3B looks like an EMer). I never sweated until age 31 when my EM started and was always very heat intolerant. The when the EM started I started having episodes of hyperhydrosis but most often still didn't sweat enough.
IN PAIN BUT SMILING: Meds that help me significantly are Zyrtec and Zantac 150 twice per day, oral Gastrocrom, and Magnesium supplements 200-300 mg twice per day. Taking Metanx for 4 months also helped, but it may have helped the EM directly or indirectly. A topical compounded prescription pain lotion helps a little too, but not as much as the others. My high arch sandals with a cork footbed help too by preventing my peripheral neuropathy and plantar fasciitis flare-ups which can trigger my EM. And I have to diligently avoid my food and chemical triggers.
lidocaine 2.5 & prilocaine 2.5% 30 Grams I know what it is used for but it does help me during flare ups. I have to try anything once to see if it will help.
My prescription calls for 2 times a day and about half inch squeeze.
lizzi said:
Cathyc, are you referring to the EMLA cream (lidocaine & prilocaine)? We have some that was prescribed for my little boy's one-time urology procedure next wk, and I've been wondering if I could use it on my feet. What % strength is yours? I've been afraid to try it not knowing if it is safe to use on a large surface area or for the long-term. Perhaps I'll ask my dr about it if it is working for you.
Dear Asher's mom~ If I may ask, What level of intensity did your son have EM. And do you know what mixtures/intervals ect that he was given these medications~ ? Thanks for the help, Heidi
Asher'sMom said:
My son's EM lasted about two months (it may or may not come back), but he had great results with trileptal, mexiletine, amitriptyline, and methadone.
Sorry to be repeating this, but I soak in water no colder than a lake water cold that I would swim in. Why do you have to protect your skin? Is it because you do it often or for a long duration?
lizzi said:
Lynee, I soak my feet in cold water but put them in plastic bags to protect my skin.
I'm not judging, I'm just wondering if that isn't a lot of strong medications for a child? I'm glad he's better and didn't need it for more than 2 months.
Asher'sMom said:
My son's EM lasted about two months (it may or may not come back), but he had great results with trileptal, mexiletine, amitriptyline, and methadone.
He had rapid onset during the last week of February. He then spent one week in Mass General, then two weeks in Children's Hospital in Boston. The entire first week at the hospital, he screamed in agony at all hours. They never did anything to address his short term pain relief, and we had to resort to bowls of ice water for his hands and feet. They started him in Neurontin and Mexiletine, and our last day there they gave him prednisone. He was admitted to Children's from their pain clinic that Mass General had referred us to. He was discharged on Thursday, then admitted Friday. They gave him lidocaine through his IV, and that knocked down his pain. He was then transferred to the Medicine ICU for a week where they put in a PIC line and he was given lidocaine, ketamine, klonopin, mexiletine, amitriptyline, and trileptal. It wasn't until they weaned him off the lidocaine that they started methadone. When we left the hospital, he was taking the following:
Amitriptyline suspension 5MG/5ML - 3 MLS at bedtime
Clonazepam suspension 0.5MG/ML - 0.5 MLS (.25MG) at bedtime
Mexiletine suspension 10MG/ML - 4 MLS (40MG) every 8 hours
Methadone solution 5MG/5ML - 2.5 ML every 12 hours
Trileptal suspension 300MG/5ML - 2.5 ML every 8 hours
He was fully weaned at some point in May (can't find the wean schedule). We dropped one med at a time, with Methadone being the first followed by Clonazepam, Amitriptyline, Mexiletine, and finally Trileptal.
OK, I get that. Thanks. I was getting worried cuz I soak and never use bags. But I'm fortunate to soak a couple of times for a few minutes/day and not every day.
I swim a lot, maybe every other day, to exercise and wondered if I was causing myself a problem.
How does one know if their exposure is too much? Are there warning signs BEFORE ulcers or is that the warning sign??
My heart goes out to you and him. Terrible for us to suffer, but to see our children suffer is impossible. Please know I wasn't being critical, I was just surprised. Sounds like he was in the right place with dr's who knew what to do. How terrible for children who don't have access to that care with these symptoms. I didn't even know children could get EM.
I'm so glad he's better and hope this NEVER returns.
Asher'sMom said:
He had rapid onset during the last week of February. He then spent one week in Mass General, then two weeks in Children's Hospital in Boston. The entire first week at the hospital, he screamed in agony at all hours. They never did anything to address his short term pain relief, and we had to resort to bowls of ice water for his hands and feet. They started him in Neurontin and Mexiletine, and our last day there they gave him prednisone. He was admitted to Children's from their pain clinic that Mass General had referred us to. He was discharged on Thursday, then admitted Friday. They gave him lidocaine through his IV, and that knocked down his pain. He was then transferred to the Medicine ICU for a week where they put in a PIC line and he was given lidocaine, ketamine, klonopin, mexiletine, amitriptyline, and trileptal. It wasn't until they weaned him off the lidocaine that they started methadone. When we left the hospital, he was taking the following:
Amitriptyline suspension 5MG/5ML - 3 MLS at bedtime
Clonazepam suspension 0.5MG/ML - 0.5 MLS (.25MG) at bedtime
Mexiletine suspension 10MG/ML - 4 MLS (40MG) every 8 hours
Methadone solution 5MG/5ML - 2.5 ML every 12 hours
Trileptal suspension 300MG/5ML - 2.5 ML every 8 hours
He was fully weaned at some point in May (can't find the wean schedule). We dropped one med at a time, with Methadone being the first followed by Clonazepam, Amitriptyline, Mexiletine, and finally Trileptal.
Thanks, I looked it up. You need to do a LOT of soaking to get that. Glad you knew to use bags. I was using ice water at one point and learned here about the dangers of that. Great to have the support and experience of other as we deal with this awful condition!
I am on Gabapentin 800 mg 3x a day and Effexor Extended release. I started taking Magnesium again to see if it makes a difference. I'm using Natural Calm; its highly absorbable pH-balanced magnesium citrate. You mix it with water.
My son has tried Neurontin (gabapentin) and aspirin which gave some but not much relief. Then he was given tegretol. It helped the pain and flares
a lot but he had a severe allergic reaction and had to stop. Next we tried mexilitene and clonidine. He has been on these drugs for about 2 years. He has flares occassionally but not nearly as many as before. We live in the southern US where it has been very hot this summer. We know his triggers are warm/hot enviroment, stress, and spicy foods. He used to soak his feet in ice water often. He was able to break that habit and now just has an ice pack he can rest his feet on if necessary. A friend who can sew made flannel covers for the ice packs and he takes them pretty much everywhere we go. I hope you get pain relief soon!