I spoke with the Eating Disorder Doctor again - the woman who said she thinks I have EM

So I asked her how she knew about EM when so many others are clueless. She said that she has seen EM before as a complication from an Eating Disorder. She said that this would be secondary EM and that it might resolve but I am now more confused because I am not sure that I really believe her. She said that even though I have gone from 78-80 pounds to 103-105 in 10 months, that I still have to gain more weight to restore myself to a healthy nutritional state. I have never weighed 118 in my life and I sound really crazy here but please remember that I have an eating disorder so this won't sound rational to most of you.

I don't know how I can deal with this - because I am not sure she is right and I am eating so much right now I cannot imagine eating more and gaining more weight.

Then I feel so badly because I read all your posts and I see what you all are living with and I am 1,000,000% sure that if you were told that you could get better by just eating and gaining weight you would all do it a million times over.

I feel guilty that I can't do this. At least not now. I am just getting used to almost 30 new pounds I can't go to 40. It is so awful.

It is more than just not wanting to weigh more - the Ed is what keeps me calm I get all upset and anxious when I cannot control my weight and I have been purposely gaining weight for 10 months but I wish it had fixed my feet already. The pain was the only reason I stopped. But it is too much for me to do more right now. so I am stting here today realizing that I will have to deal with this pain which is ruining everything else because I have no guarantee that she is right. If she isn't then I will be in a state of complete disorder without the control which I feel from the Ed and with the pain.

I am so confused. I need more information before I just trust her. It is hard for me to trust people in general and I am way too scared about this. Should I see the Rheumatologist or is that just going to be another waste of $400??

I am sorry for this silly post but I am homebound on the weekend and I sit and think and cry and worry about all this.

Hi, I am sorry that you are suffering do much. I do wonder if the eating disorder has done damage to the nerves this causing EM type symptoms? I also have small fibre neuropathy and wonder if that’s similar to what your dr is suspecting you have? I’m not a dr tho so just wondering out loud.! I think you have done amazingly over the last 10 months and think that you sound like you’re at a much better weight than before. Celebrate your success. I understand somewhat, although I’ve never had an eating disorder worrying about my weight has ruled my whole adult life. I am only 5ft 2 so any little weight gain shows. I spent a lot of years at 100lbs but going onto medication made my weight fluctuate, anywhere from 105-124lbs. I am now med free and trying hard to get down to 112. I think for me it’s less about what I weigh and more about what I feel about myself. I really hope you can get to a point where you feel happy enough with yourself for who you are as a person and therefore worry less about controlling your food or your size… I wish you lots of luck xx

Hello, I am so sorry your for your struggles and perhaps having EM on top of it. I just want u to know I have had borderline eating disorders, even though I was never diagnosed officially, I obsessed over food, I felt I never looked good enough etc. I know it feels sometimes like everything will fall apart if u gain weight, like there is no control in life. I will be honest and say I still do struggle with this a little, but I have found determination to overcome it for the people I love, for my future health, and I even hope to have children one day, I can’t do that skinny
U don’t have to have those specific goals, but I find channeling your passions into your recovery, striving for something greater than yourself, and leaning on people once in the while who care, letting them in is important. That’s just my advice, and I’m sure other people have better advice, but I just want u to know I have been there and hated people who said I had to gain weight. I felt so hopeless and lost sometimes.
I have been diagnosed with em, but I have never had a doctor tell me it was because I was under weight all though I can’t rule it out. I think it is because I got an injury that never fully healed in my foot from running. I used to be an avid cross country runner (part of my disorder I think) probably one of the most dedicated because it made me feel in control and have the ability to eat a little more and stay thin.
Em has been hard for me, but you are not alone. I wish more people would have told me that sometimes. I have felt so dark about developing EM, wanting to stay thin, so that I wouldn’t lose everything to it and let it run my life. I am 5’8 and got down to 107 pounds at one point, and came to the realization that I hated enjoying destroying myself. Now I weigh 127, and I feel just as confident about my body, it is possible to recover. Slowly.
I hope that a doctor will be able to help u more, and I hope u do not have EM, but if u do I have had those dark and lonely weekends, fanning my feet and wondering if this was all that was left for me. I really still struggle to accept that this is how life turned out for me at only 21. But once I found treatment that helped me, I can walk for up to 45 minutes again, even in the heat! I can go shopping for a few hours, I do mild Pilates, I enjoy a glass our two of wine once in a while, I’m looking into going back to school. This disorder does not have to take over your life, but there are some adjustments if u do have it, and that was the hardest part. I lost some things to it, but they were temporary, and I have learned so much about myself, and others and just how deep their love for me is, and I’ve even filtered out the people who weren’t there for me in life. I feel like the colors of life run deeper now, I have learned to try not to judge others do quickly and notice all the kindness in the world.
Mostly, I’m just trying to say hang in there, I have been in the dark, and life is effing scary sometimes, but u are never ever ever alone, all u have to do is ask for help, and look inside for what makes you want to continue in life. I have been suicidal, but I found that only caused me and those around me so much more pain. I feel that slowly over the past year and a half I have learned to appreciate life, and see my struggles as something that has made me be true to myself and stick to my dreams.
Sorry for the novel, but your story reminded me of a lot of things I have been through before. I wish u the best of luck in the future, and don’t give up. The best of people are those who have suffered the most :slight_smile:

Thank you for your strength and honesty. I am so proud of you and your efforts to gain your health back. I too hope that you do not have EM like we do.
I also sincerely hope that perhaps once things balance out better for you in all areas, that your symptoms will disappear. Sometimes the symptoms that present themselves as being Erythromelalgia can actually go into remission. It does happen! And I do pray that your pain and fire fades into nothingness.
Just try to get through each day for now. Or even just get through each hour as it comes. Be kind to yourself and if it helps, try some of our tips on dealing with the burning symptoms.
I too always have A/C on, a fan nearby, and generally avoid shoes of any kind or sun exposure (since it causes flares for me).
Please keep us posted on how you are doing. Although it’s hard for you to trust your therapist, I appreciate that you continue to see her. It shows that you are working hard in your issues. Again, I am proud of you!

I wanted to thank you all for sharing your stories and being so open. I have not been on the site for some time and for some reason decided to read recent posts today and have been in tears reading. After so many years of isolation and loneliness in dealing with chronic pain and the loss that follows I forget there are so many others out there (unfortunately) but reading your stories does give some comfort.

Coincidentally, my history also includes an eating disorder in my past and now Lyme disease that went undiagnosed for many years leaving me with a variety of issues and likely led to EM. The biggest source of grief in my life is that my Lyme symptoms started within weeks of delivering my first child almost 6 years ago, and I have not been able to be the mom I want to be because of this. I have also not been able to have any more children which completely breaks my heart every day.

So that is a little of my story and I really needed to hear some of your stories, especially dkel, as it sounds like you have come through it a little and are able to see things from a more positive point of view. I pray I can get there soon and the constant ache of wanting more babies goes away!

Thank you all again and I do hope things get better for you all.

Thank you all for such honesty . It takes tremendous courage to 'bare your soul'

Your stories have truly humbled me. They have given me renewed strength to continue my own personal journey and struggle .

Thank you my friends - and you are my friends.... my EM'er family ;)


God bless

mads x