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Can't Sleep Again....

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I have often thought about all of those "weird", for lack of a better word, symptoms that Scleroderma presents us that usually leave doctors scratching their heads and sending for the "other" men in white coats...or simply diagnosing hypochondria.


I think we should help them out a bit by compiling a list of our most IN common symptoms.


I'll start and the rest of you can say me too and add your own if you have any, okay? Cool. Sounds fun. :unsure:


Here we go:


Weird skin sensations


1. Invisible spiders in my hair

2. Nonexistent cobwebs on my face

3. Fast bugs on my legs

4. Paper cuts never gotten

5. Bee stings without the bee

6. Patches of tingling and numbness in arms and legs and hands

7. Itchy skin




8. Hair loss

9. Sleep loss

10. Mind loss


Okay, I'm only kidding (a little)


And one other thing....


Once in a great while, though not very often, and very rarely... ;) I can actually FEEL my feet on the ground like I have never FELT my feet on the ground before, or at least I have never remembered ever thinking, "Wow. Feel that carpet." like I have never felt carpet beneath my feet before.


But it's as if I'm feeling the ground beneath my feet for the first time. Or as if I'm being reunited with a long lost friend. Makes me want to run barefoot through cool spring grass or squish my toes into wet cold sand on the beach. Makes me feel GROUNDED. Pun intended.


So, I guess I have slowly, gradually, and unwittingly been losing some feeling in my feet for many, many years now and who knows why I am blessed to get back those short but sweet moments of sensation.


Maybe it's to remind me to apprecitae every little thing.


Oh I wish I could sleep......Tomorrow is going to be rough......

Take care,



Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Aha! You are the one with the eat chocolate if you still can signature. :) I wondered what that was about and now I know. Can't eat it right now. :(


I have the-


Memory Loss

Sleep Loss

Tender areas on my skin usually on my forearms and sides of my calf. They kind of ache which makes me want to rub them, then I touch that area and its like a hot poker touching them, I can't.

Itchy skin

creepy crawlies sometimes.


If I think of more I'll let you know.


Great thread!

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Barefut - Great idea! I would love to take the list of symptoms to a few of my doctors. Maybe you could compile them all together at the end (?). I, too have serious sleep problems (I go to the sleep disorder place on the 25th to get the results of my sleep study), itching, wierd sensations in my face (all the time), telangiatiasia spots everywhere (I truly look like one of the connect the dots games), bruises caused by who knows what, memory loss, balance issues (embarassing), mystery pain in arms, legs and feet, wounds that just won't heal, etc., etc. - Ann

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