I’m curious, has anyone on here actually found relief or improvement from EM? Has anyone been able to return to normal life?
When I first started getting symptoms, all I wanted was to be officially diagnosed. That has yet to happen, but I somehow hoped the symptoms would just end. I’m 22 and I feel like my life is on hold from the pain and how limiting it is. My biggest fear now is that I’ll never find relief, and that this is just the state of my life now.
So i suppose I’m curious if there are any positive stories? Because I’m definitely someone in need of some hope right now.
I have EM in my feet very severe. I found relief in Bob’s protocol (hot water soaking). I’m on it for 4 weeks now. My constant flaring is gone now, but I’m still not able to be active for more than 15 minutes. So I do not have my life back, and I really do know and feel what you are going trough. I’m 35 years old, and I have EM in this severe form for 1,5 years now. I have a childwish, but this disease makes it impossible to make that wish come true.
I would really recommand you to try Bob’s protocol. You can find it if you scroll a bit down in the topics on this forum, it’s in the title.
P**** C**** (nickname Rayofhope) has posted about it in january this year.
For me it takes a lot of the pain away as long as I sit down. And at night I have less flaring; my feet must stay out of the covers, but they no longer flare if they touch the pillow/covers. I sleep a lot better now.
I hope you will benefit from it too. The treatment is rough for the first few days; but it will soon get better!
I blanked out Rayofhope’s real name in case she didn’t want it shown. Quite possibly she wouldn’t mind, but just being mindful of privacy / security issues. Hope that’s okay with you.
Vlinder, you’re right, but as a routine, we just take real life names out when we see them, especially when the person (like @rayofhope) isn’t on the thread in question.
Thank you, !
Seenie from ModSupport
PS Keying in the person’s screen name preceded by @ (@vlinder) generates a notification to the at person. Handy in these situations!
Thank you to @Vlinder and @CarterDK! I appreciate both of your responses. Both your experiences to recovery or improvement seem quite different, but I like the idea that there are options and that not everyone is “doomed”. I used to start each day with a run/power yoga and I can’t wait until I can return to my old activities! SO thank you for giving me some glimmer of hope. I’m still waiting to meet with the vascular specialist, and then from there I’ll look into any therapies that may be relevent. I’m happy for you both and I hope you continue to experience normalicy!
That is wonderful to hear ! I love to hear that Bob’s protocol is helping others too ! I don’t mind you used my name as my name is public and so everything I say is public too. My facebook awareness page also has Bob’s protocol on it as it has helped me tremendously.
It’s crazy but like the others doing Bobs since the end of January has changed things for me. I was doomed for so long and it really looked like things could only get worse for me. I’ve been off all meds, except birth control pills, which I take for low estrogen, since January. Started bobs at the end of Jan (pix of my feet then are brutal—covered in ulcerated chilblains, so flared, etc.), and for about the last 1.5 months my flares and constant overwhelming burning has mellowed. My brain is so different, like I’m myself for the first time in at least 5 years. I know now that if things get that bad again, that I’ll come back out of it. I’m a cyclist and I’ve found that I can bike without too much flaring as long as I’m not in any heat. I started riding bc I couldn’t do on my feet exercise anymore. But actually I went to the gym for the first time in years and did some weight lifting and even I. The sweaty gym and in shoes (full on mesh Nikes) I didn’t flare. Some warmth and tingling but manageable. Being off the meds—tried them all—has given me my brain back, so that’s helped too. None of them improved anything for me so I really think it’s bobs doing most of the work here. I’ll see once summer comes but I’m hopeful. There’s hope for you
I’m going to look more into the Bobs method… I’ll probably try it when I’m finished with my program and I have the freedom to experience the pain initially without it bleeding too much into my work life! Happy for you and your ability to enjoy life more and feel like yourself again
!