Hello to everyone,
I have been diagnosed with EM for the past 2 years. I am a 26 year old female and was wondering if others have been experiencing hair and weight loss. I used to have very thick and long hair, in fact many were envious of it. Since I’ve been diagnosed with EM I have been losing an insane amount of hair. I would say i have about 1/3 of the amount of hair I originally had. I also have a tiny bald spot at the front of my head.
I have also lost a lot of weight. I was always very slim and petite to begin with but EM has drastically changed the way I look. I always get concerned looks from people I know asking me if I am okay. I would say I am about 10 lbs down from my original weight.
Both these factors have caused my self-esteem to go plummeting down. I have high levels of social anxiety and have experienced depression as well.
Any feedback is appreciated, thanks.
Hi AppleB,
I really appreciate you sharing your experience. I have not experienced hair loss (thank goodness because I have really thin hair), but I have also experienced weightloss. I think this is because when I am in pain, I don’t really have an appetite. So the reason from my weight loss is because of a lack of appetite. Additionally, hair loss can be related to your diet if you are not getting enough nutrients. This is all just a theory, but if you feel like you don’t have much of an appetite, and you are not eating a well balanced diet- then this could contribute to your weight loss and hair loss. My recommendation would be to see your doctor and maybe a nutritionist.
I am 25 and I have been diagnosed with EM for 1 year. I know how much it can affect ones social life and the last thing we need is additional stressors. Thanks for sharing your story and I think you for sharing your experience. It is not always easy to share, but I find people to be very brave who are able to share what they feel and experience. 
I haven’t noticed a loss of hair, but definitely the texture of my hair! It seems to be more brittle, and it also has started turning white. I agree, diet makes a lot of sense. I wonder if vitamin D defiency has to do with hair health? I know I’m low in that arena.
Hey Apple,
I think it could be really beneficial for you to talk to a doctor about all this. The weight loss/hair loss may be linked to your depression. I struggle with my weight–the EM for sure triggers weight loss for me, and I know that having low weight triggers EM flares for me. It’s a terrible cycle, but it’s one that doctors, including mental health specialists and nutritionists, can help treat. I wish you the best–but, yes, there is treatment that can help.
Are you on medicine? Prednisone, valtrex, plaqunil, pain meds, aspirin, etc? Any and all meds could be contributing factors???
For the first year in the process of diagnosing my EM, I was on many trial medications but its been almost a year that i haven’t been taking any. I am going back to see my doctor this coming week to possibly see if I can try something again because my flares are getting pretty bad.
I will also ask my doctor if that could have been what started my hair loss because it was within the first year it started to really fall out.
Thanks Robyn
I think part of it is lack of appetite, you’re right. I have very little appetite and that’s mainly what has caused me to lose so much weight and in turn I’m probably not getting enough nutrients. It makes sense. I was just wondering if it was a common thing with others with EM. But I will definitely talk to my doctor about my concerns again and see if their is something I need to add or take away from my diet.
Thanks LittleK
Hi! When I was on prednisone and other medications, my hair got soooooo thin. Now without the prednisone, it has come back nice and full! And curlier than before. Hang in there and make sure you take geletin. Ask your pharmacist if there is a certain vitamin that is good for hair and nail growth.
Robyn
Hair loss accompanied my first 2+ years with EM. My scalp hair drasticlally changed. It’s probably only 1/2 the amount now & the hairs themselves much more fragile. As I improved control of the EM flares the hair also improved. Early in my EM years I also had near total loss of body hair below the neck as well of thinning of my nails. Evaluation by my doctors revealed no other related disorders. I do attribute improvement in hair & nails and EM to improved diet (gluten free, decreased processed foods, mostly vegetarian.) I do also take a hair & nail supplement along with other vitamins. If you haven’t yet definitely have your healthcare provider guide you on this. We EM folks have a host of special requirements. Experience, strength & hope, Elis.
Were you on prednisone at all? I was for three years and my hair and nails were a mess. My hairdresser finally saw a change after about a year off of prednisone.
Hello
One thing comes to mind and this can cause EM but check it out because it’s always good to be informed and know these things for yourself and others in the future. Hair loss yes can definitely be from medications. That would be the first reason to check. Second it could be from stress. Also it could be from autoimmune. Lupus can cause hairloss.
The weight loss has been a mystery for me. I have lost 30 percent of my weigh and have been to every doctor with no known reason and I intake 3500 calories a day regardless of my pain. I eat. A lot. Nothing ever gets put down. Last doctor said maybe it’s from the disease. However with a rare disease there won’t be much information about this. I have not found the root of my cause.
Hi all, This sounds kinda crazy but I stopped reading any posts on this site for quite awhile as I was convinced that every time I read some symptom that someone mentioned it seemed like I would immediately have that same thing. I’m reading posts thinking: No, I don’t have that-thanks for small miracles. And no sooner would I realize that yes, I now have that same issue! This hair loss post was one of those things. As soon as I read it, it seemed my hair started falling out. Lots of hair! When I wash it, when I comb, when I sleep, when I look down I have several strands stuck to the front of my shirt several times a day. It’s alarming! I have developed a small bald spot on the top of my head that I spray with a touch up color so it doesn’t show. I’m not on any meds! No weight loss though. I’m wondering how hair loss could be related. When there is flaring, maybe the vessels are slightly dilated all over (greatly dilated on the feet) which loosens the hair from the follicle?