# Hello all - Care taker from Philly **URL:** \ **Category:** General\ **Created:** [September 9, 2020, 9:04pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081 "2020-09-09T21:04:46Z")\ **Posts on this page:** 12\ **Page:** 1
**Author:** ![PaMom](https://avatars.discourse-cdn.com/v4/letter/p/59ef9b/32.png) [@PaMom](https://forum.livingwitherythromelalgia.org/u/PaMom)\ **Post date:** [September 9, 2020, 9:04pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/1 "2020-09-09T21:04:46Z")
Hi I’m Danette My 22 yo daughter was recently diagnosed with EM. In a lot of pain all the time. Not getting much sleep. Taking Lyrica and amytriptiline for about 2 weeks not much success yet. She cannot walk her feet are so bad. Any suggestions would be helpful ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [September 10, 2020, 12:08am UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/2 "2020-09-10T00:08:39Z")
The sodium channel blocker mexiletine seems to have a good success rate in younger patients. I am one of them. It stopped my symptoms within 48 hours of the first dose and I haven’t had a full flare in over 5 years. Even better, during that time I’ve been able to successfully reduce my dosage from 3 times daily to just once daily with no adverse effects. I would ask your daughter’s doctor about mexiletine. ---
**Author:** ![PaMom](https://avatars.discourse-cdn.com/v4/letter/p/59ef9b/32.png) [@PaMom](https://forum.livingwitherythromelalgia.org/u/PaMom)\ **Post date:** [September 10, 2020, 12:33am UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/3 "2020-09-10T00:33:49Z")
Thanks so much! We were beginning to think this was our “new normal”. Thanks again for the quick response ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [September 10, 2020, 1:21am UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/4 "2020-09-10T01:21:44Z")
Been there! I too thought “this is as good as it gets now” in the first couple months after it started. Kept fighting though and found my way back to a much better place. ---
**Author:** ![virgo3](https://avatars.discourse-cdn.com/v4/letter/v/51bf81/32.png) [@virgo3](https://forum.livingwitherythromelalgia.org/u/virgo3)\ **Post date:** [September 10, 2020, 7:36am UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/5 "2020-09-10T07:36:34Z")
Carter DK I just started it, What dose were you on and now on? Pa Mom I love Dr Michelletti at HUP. He is in Dermatology. I have seen dozens. He agreed to Mexilitine for me . He hesitated due to no gene mutation. Tell him Traci Manuel referred. If you give me name I will send a message ---
**Author:** ![PaMom](https://avatars.discourse-cdn.com/v4/letter/p/59ef9b/32.png) [@PaMom](https://forum.livingwitherythromelalgia.org/u/PaMom)\ **Post date:** [September 10, 2020, 7:35pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/6 "2020-09-10T19:35:20Z")
Thanks virgo3! With COVID it’s been really hard to get appointments but if I can be scheduled in the next couple of weeks I will be sure to give your name. ---
**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Post date:** [September 11, 2020, 12:30am UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/7 "2020-09-11T00:30:46Z")
I took 150mg capsules three times daily for over 3 years. Then I took 150mg twice daily for a year. Then beginning this March I started taking 150mg once a day (usually around lunch time, 1-2pm). ---
**Author:** ![BURNINGFEET](https://avatars.discourse-cdn.com/v4/letter/b/e274bd/32.png) [@BURNINGFEET](https://forum.livingwitherythromelalgia.org/u/BURNINGFEET)\ **Post date:** [September 11, 2020, 7:13pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/8 "2020-09-11T19:13:30Z")
I’ve been suffering for 4 years. Sleep has been a huge problem. My doc prescribed Trazadone and it has really helped. Before bed, I soak my feet in cool water for about 5 mins. I then turn on my 2 - 4” fans that blow on my feet all night while I sleep. ---
**Author:** ![Gemgal66](https://avatars.discourse-cdn.com/v4/letter/g/e9bcb4/32.png) [@Gemgal66](https://forum.livingwitherythromelalgia.org/u/Gemgal66)\ **Post date:** [September 11, 2020, 9:45pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/9 "2020-09-11T21:45:55Z")
I was having constant flares, severe Edema and terrible nerve pain all day and night and now I take 200mgs of gabapentin 3X a day and 300mg before bed and Tramadol for pain and they have both helped immensely - the Edema has been helped with wearing Edema netting worn all day…it is not heavy and enclosing like compression stockings which I cannot tolerate. I also have Raynauds so raising my feet for the flares and Edema is not an option for me. I hope you can find something that will bring her relief \<3 ---
**Author:** ![Marymcw1](https://avatars.discourse-cdn.com/v4/letter/m/bc8723/32.png) [@Marymcw1](https://forum.livingwitherythromelalgia.org/u/Marymcw1)\ **Post date:** [September 11, 2020, 11:37pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/10 "2020-09-11T23:37:41Z")
I eliminated All drinks but filtered water, - no alcohol, no caffeine, no sugar, no artificial sweeteners, and I think that helps keep my flares down. And drink alot of water. When my feet are flaring, drinking 16 ounces of water helps get the flare down. ---
**Author:** ![jswilcox2](https://avatars.discourse-cdn.com/v4/letter/j/a8b319/32.png) [@jswilcox2](https://forum.livingwitherythromelalgia.org/u/jswilcox2)\ **Post date:** [September 12, 2020, 1:49am UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/11 "2020-09-12T01:49:17Z")
Don’t be too quick to give up on Lyrica. It took months for it to really help me. I still take cymbalta, Salsalate and CBD oil too and I really seem to need them all. ---
**Author:** ![OnFireInSeattle](https://avatars.discourse-cdn.com/v4/letter/o/ac8455/32.png) [@OnFireInSeattle](https://forum.livingwitherythromelalgia.org/u/OnFireInSeattle)\ **Post date:** [September 12, 2020, 5:26pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-all-care-taker-from-philly/5081/12 "2020-09-12T17:26:54Z")
I am on a large dosage of gabapentin. I take it 3 times a day. Makes a huge difference. Compounded creams of Amitriptyline and ketamine for huge emergencies.