Hair falling out with burning scalp

Hello every one.

My EM tends to vary in severity and location effecting almost my entire body at some time. When my scalp is faring my hair also falls out somewhat significantly. They have the roots attached so they aren't breaking they are falling out. Has anyone else noticed this in themselves? I first thought the hair loss was due to my autoimmune condition but I now think it may be caused by EM on the scalp. Thank you.

Hi Alina,

Thanks for such a great topic. I too have noticed considerable hair loss and thinning temples/sides. Vasoconstriction , tightening or shrinking of the pathway , is known to lead to hair loss (alopecia) of the scalp and other body parts . Suppose the severity of ones EM also plays a part in severity of hair loss ie: chronic continuous flaring thus far more diminished blood flow. Sort of explains why some of us with widespread EM no longer need to wax LMAO! Sorry- if i dont laugh sometimes , ill have a breakdown! Research also calls it relative 'microvascular insufficiency'. Main reason for baldness in men.

Thermoregulation and hair loss is another issue- in terms of our inability to regulate temperature. Many of us sooner or later oscillate between EM- Rauynauds, If we are not burning on fire , we are frostbitten- numb. These two frequently co-exist.(Research attached ).

If they are saying that vasodilation helps with hair loss and that we need to increase blood flow then lets once again refer to the 'poly pharmacy' approach to managing EM and add aspirin, anti histamines into our treatment package. itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=26

However- if we chill our bodies to minimise flares, for those of us that suffer EM of scalp -maybe the cooling caps used in chemotherapy would be useful. (Research attached)

Dryness and thinning of the skin, LENGTH DEPENDENT HAIR LOSS( interesting!) and ridged or brittle nails are all symptomatic of small fiber neuropathy -

All food for thought

Please keep educating your specialist- lets pave the way to better management, understanding and awareness

God bless

Wishing you all a 'comfortable' night as always


372-Coolingcapsvasoconstrictionhairlosschemotherapy.pdf (66 KB) 373-75emEMandraynauldssclerodemaassociation.pdf (936 KB)

Thank you Madds for that great information! Did you have that information on hand or did you research that for me ? either way it was very kind of you. Not that I wish for you or anyone else to also have this problem but it does help knowing its not just me. I keep finding more and more besides just the burning that seems to be EM related.

As you mentioned above today has been a roller coaster of Reynaud's ( maybe I call it pernio because it was in my feet) and EM. I even had pernio /Reynaud's in my feet quite bad while also having EM in my hands and face! After attempting a little cleaning it is now EM in my feet too! I don't understand how they both happen at the same time tough.

Thanks again for the information. I might not be able to stop it but at least I can understand a little why it's happening!

Take care and stay cool


I’ve noticed a lot of unusual amount of hair loss while washing my hair too,in the last year and my flares are becoming more aggressive and persistent :fire::heart:

I also have the raunaurds thing going down :snowflake::fire::flushed:

was just about the start a thread on this…

my hair now looks like one big dread. i’m losing so much, it hurts too much to brush and he fallout just clings around and creates massive matting.

i can’t bear the thought of detangling this mess. no amount of conditioner has helped

i just asked my doc today if it had to do with any of the meds i’m trying. he just said it’s probably the stress on a sick body.

i’m not sure to shave it off at this point or pretend i’m going for dreadlocks.

it sincerely looks like a nest and the long pieces just at all wrapped up… so it’s shrinking too! if i’m going to be bald i’ll shave it off (had steven johnson’s syndrome 5 years ago and i enjoyed the shaved look) but i somehow feel like the hair i have helps distract from the flushing ?

i wish i new if i’m going bald or just severe thinning. i don’t even recognize myself from 3 years ago. the stress and weight loss … new hair line … minimal brows and lashes makes me looks 20 yrs older than i am! i could accept that, no problem, if i felt good.