Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....
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And in terms of shower hair, I go for the tug and scrape knots of hair off hands and wrap into a little ball. Gross? Yes, but less risky than the shake!
- Posts: 37
- Joined: Sun Dec 18, 2011 1:32 pm
Oh weird! I just found this thread and I also have super super fine (but abundant) 'baby-like' hair.
Similarly hair-dressers comment, then throw their hands up in despair because it won't do anything the expect it to, forget trying to style it.
However, an alternative explanation to it being to do with HMS (and very likely) is that I'm half Finnish and Finns have notoriously fine hair. I'm even thinking of getting a hair cut in Finland in the summer to see if they can do a better job than I normally get over here, as they are used to styling 'baby hair'...
- Posts: 29
- Joined: Mon Apr 02, 2012 10:01 am
Another bendy with very fine uncooperative hair here!
I have always had trouble trying to get any kind of style in my hair as not only is it stupidly fine, it's poker straight except for the almost non existent fringe that has a lop sided wave to it.
The 'shower dance' made me smile. I hate it when it gets caught around my fingers... Aarggghhh!
Reluctant to mention the next thing as it may just be me and my traumatic entrance into this world almost half a century ago.... But I have an odd shapped head at the back. It's kind of like I've been hit on the head with a shovel and it's left a, for want of a better word... slope. This just adds to the whole 'what the hell is my hair doing today?' issue
Jolajo.... Love the hair vs floral display story
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- Joined: Thu May 17, 2012 5:18 pm
Looby - my god-daughter has exactly the same shaped head. When she was born, i commented on it to her mother, thinking that maybe soemthing had happened during the birth, and it went quiet, until we all collapsed in fits of giggles when I realised her father had the same shaped head.
I think it is not unusual.
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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- Joined: Fri Jun 24, 2005 8:58 pm
- Location: Brighton area
My hair is really protesting about this weather...I had it washed this morning and since then it's been sooo wild and frizzy I have a permanent look of being windswept and dragged through a hedge backwards. Hoping to get it cut tomorrow which should help but not sure how to control the friz
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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- Location: west sussex
LB I can feel your hedge backwards pain - my hair always looks like that!
Exeter, East and Mid Devon Group Leader - please get in touch for more information!
- Posts: 295
- Joined: Tue Jul 14, 2009 7:14 pm
- Location: Exeter
Me too! I had my hair bleached blonde for twenty odd years. I decided about 18 months ago to go back to my natural mousy brown. My hairdresser couldn't believe how quickly it "got its shine back". Not only is it fine but it's incredibly oily! So much so that if I wash my hair in the morning, by early evening it looks like I been combing it with cooking oil. I've tried all the usual stuff, changed shampoos, not washed it, used baby shampoo, used lemon juice, vinegar, mouthwash (listerine original is reportedly the best for this, did nothing for me), even to the point of ...washing up liquid. You name it, I've tried it
I now tend to carry dry shampoo with me and still try to wash it every other day. Anyone else got this problem too?
Diagnosed with EDS & P O T S by Prof Grahame on 10th oct 2012
"Mother" to 2cats, bhobbi and bhilbo, and 2 terriers, Harry and Poggie who make me smile no matter how sore and tired I am
- Posts: 35
- Joined: Wed Jun 20, 2012 12:21 am
- Location: Ponteland
Mine isn't quite that bad - but halfway through day 2 it is greasy and horrible! I have to wash it every other day now, where I used to be able to go for about 5-6 days! I find it's best if I use a tea tree conditioner - cheap own brand one, and use no treatments on my hair. I used to use heat protection stuff as I have to use straighteners, but that makes it greasy by the end of the day, so I just put up with damaging my hair. I love dry shampoo though - couldn't live without it when I just don't have the energy to wash my hair or I am in too much pain!
Finally diagnosed March 2011 after 20 years of hypochondria!!!
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- Joined: Fri Mar 04, 2011 11:03 pm
- Location: Cumbria
My hair is really fine and goes curly (well, frizzy really) if it's longer than an inch. I'm currently trying to grow it to my shoulders as my hairdresser thinks it might be better long and with a blunt cut, I'm giving it a go but right now I look more like a demented poodle. I find it's better if I wash it every day with plain water (no shampoo), and use a spray leave-in conditioner. I only shampoo twice a week.
I have a weird-shaped head too, there's a sort of flat bit at the back and a 'point' at the top, we always joke that my mum must have dropped me on my head as a baby! I wonder if the skull bones 'set' in the wrong way in us bendies - you know how a babies' skull isn't fused together, the bony plates are held together with connective tissue until around 2 years old.
married with a bendy daughter, three cats, HEDS, asthma, mild OCD, eczema and multiple allergies.
- Posts: 78
- Joined: Thu Jun 30, 2011 10:07 am
- Location: Norfolk, UK
I have very fine 'baby' hair - I don't have a lot of it either, and it refuses to grow any longer than my shoulders.
I'm a new member, and one of things I wanted to find out was if fine hair could be a by-product of HMS. Thanks for letting me know
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- Joined: Sun Jul 08, 2012 9:34 pm
I have just realised that me Dad, who I inherited the whole eds thing from, also has really fine hair. It didn't really occur to me before, but he has always had fine hair that blows about alot, waving madly in the wind! He doesn't use anything to hold it in place, because he said that it never worked properly for him, blaming it on unusually fine hair. Why couldn't I have inherited Mum's hair?? It was thick and wavy and behaved itself in the wind!!
Just call me Bagpuss. Saggy, baggy, and a bit loose at the seams.
HEDS, FMS, jaffa cake addict. Velcro rules!
- Posts: 170
- Joined: Sat Aug 16, 2008 7:49 pm
- Location: Curled up somewhere comfy
Stacey's is fine too, but lots of it. Usually bleached blonde, so when she gets up in the morning she resembles Don King the boxing promoter
- Posts: 456
- Joined: Tue Mar 06, 2012 12:01 pm
gonna throw a spanner in the worse here I have thick hair...lots of it too...I had fuzzy baby hair around the front of my hairline until my first flair up, it seems bendieness has 'fixed' my hair, mum has thick hair and lots of it too but loads fell out when she was pregnant with me and its never been the same since.
for those of you with falling out hair I use skin hair and nails vitamins/supliment from hollant and barrett, seem to have stopped my hair falling out a lot
Part time wheelie, part time work, part time OT student - full time Bendie!
Group Leader for Northamptonshire find us on Facebook
Arts and crafts junkie ~ PurlBeads
- Posts: 220
- Joined: Fri Apr 17, 2009 5:25 pm
- Location: Ipswich, UK
Really losing loads of hair at the moment, luckily I have a lot so no bald spots, but seems much less mass when I'm putting in a scrunchy, very skinny ponytail. The family are all commenting that my hair is getting everywhere. I'll look out for the stuff in Holland & Barrett & give it a try.
diagnosed jan 11 HMS, also carpal & cubital tunnel, IBS, raynauds, low blood pressure, migraines with aura.
"Happiness is homemade" love to bake, keeps me sane!
- Posts: 44
- Joined: Mon Feb 07, 2011 10:43 pm
- Location: Wiltshire
Just a quick thought, haven't got energy to search but the amount my hair loss gets affected increases when I ingest gluten (am coeliac). Its normal to lose hair daily as the hairs are released in the same way as one sheds dead skin but it gets totally ridiculous when I know ice been glutened. I also do the hair ball thing otherwise it gets blocked & water won't go down
Am another with lots of v v fine hair too.
Powered by fairy dust - could explain a few things now i think about it tho!
- Posts: 700
- Joined: Thu Apr 12, 2007 2:23 pm
- Location: West Sussex
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