Impaired skin etc. healing/bruising in HMS?

[Shadowlady]

Hey hey,

Yeah, they're pretty visible Sue, when your bp is at a normal level are they so visible? I describe my boobs as looking like a road map too, what with all the stretch mark roads as well as the veiny rivers! Don't think I'll be trying to get a tan there at any point to try and hide them (well, only out a bottle!). Though my upper chest is definitely not as veiny as the pic (but like Nonya says, that's the vascular type of EDS). How visible they are varies a lot, if I've been moving about gently and feel calm, they're barely visible, but if I've been rushing about, if I feel stressed, or after a shower, they're visible all over, especially my hands and feet. The palms of my hands sometimes look ... weird - next time it happens I'll try to get a pic. I also get standy-out man veins on the backs of my hands, up my fore-arms, and weirdly, on my shins where the veins pass over the bone, which I've only noticed in the last year or so. I'm still not convinced it's an abnormal EDS thing in me, even though my feet look more veiny at times than one of those pics! It just ... doesn't seem so important most of the time - if I feel bothered, I can put fake tan on!

Best wishes,
S

[Sue New]

Hi S,

No, that picture was taken a cou[le of weeks ago when Fi first asked the question about see through skin. It was taken late at nigh/early morning when my BP was not playing up so much at the time. I didn'y take a picture of what it looked like when my BP was really high, but it was a lot more veiny than in this picture.

Bye for now ,

Sue.

[Shadowlady]

Ello Kylie,

Blimey! Bet it's fun playing follow the road with hubby on your road map tho (I'm sorry - I'm a terrible person ).

Take it easy Sue,
S

[unhealthyamerican]

I noticed today when exercising that the veins in my forearms were popping out. Thankfully, they don't look as bad now, although a few near the elbow are easily visible. I guess normal people don't experience that.

[Claireb]

This is really wierd cos I never thought that my veins were any different to anyone else! But then again when I was born and my older sister then just 3 years old asked "Mummy why has Claire got blue bones?" Basically she's noticed my veins. Hmm come to think of it my skin is very transluent but Prof Bird says I deffiantly dont have eds!

Claire xx

[laxbear]

I have translucent skin too and not many(maybe none) people I know or have met has skin like that. Face, chest, feet, leg, hands, arms.. you can see them everywhere. It's not something nice to live with, especially those on my face... hmmm.

So I've read about translucent skin being a major diagnostic citeria in vascular EDS, so since those who are only dx as hypermobile EDS and has translucent skin... how does the doctor differentiate which is which?(hope yall understand what I'm asking in the last sentence).

[gila]

There seems to be a huge overlap of 'symptoms' between the various forms of EDS(not surprising? genetic 'mutations'?), so probably quite difficult to 'differentiate', and yep I'm v 'veiny'.
Think for vascular EDS they also take 'facial features' into consideration('triangular' face shape; big, slightly 'bulgy' eyes; thin nose, lips; attached earlobes).
Dont know what else it takes to make them 'suspect' VEDS, but if they do, they will get you to have a skin biopsy. With VEDS they know the 'genetic culprit', so skin biopsy can confirm it. Dont know whether that is 100%.

re HMS or EDS- please take into account that apparently Prof G thinks that HMS and EDShypermobility actually are the same, but it cant be proven yet, as they dont know the exact 'genetic marker' yet.
Think that's one of the reasons why the HMS/BJHMS/JHMS names, one of the others being, I think,that docs have decided it'd be better to call illnesses according to the "what it says on the tin" system, rather than naming them after the peops who first 'discovered' them.
Judging by how Prof Bird put it in his article for the newsletter ( "...that hypermobility syndromeS..."(plural! and not capitalized), not "THE HMS", it looks as if he agrees, or at least thinks that HMS= a 'type' of EDS.

[Queen of Pain]

Hello all,

I have somewhat see-through skin but not as much as you all do...Mostly on my shoulders and legs (oddly enough).

Do any of you know what the 'scale is' for measuring hyperextensible (hyperelastic) skin? I'm wondering if there are specific measurements somewhere - I googled it and cannot find any diagnostic criteria for skin stretchiness.

I'm wondering what qualifies as 'mildly hyperextensible skin'. Would it be in millimeters or centimeters?

[Fiona-Jane]

im curious about that too, tried to use google images to find some pictures of stretchy skin, but they just showed really stretchy skin.....

anyone know the answer!?


fi xx

[nonyanomemory]

eds link

Hypermobility (Formerly EDS Type III)

Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees)and small (fingers and toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella, and temporomandibular joint dislocate frequently.

skin involvement (hyperextensibility and/or smooth velvety skin) as well as bruising tendencies in the Hypermobility Type are present but variable in severity.

Classical (Formerly EDS Types I & II

Marked skin hyperextensibility etc

Click on the link at the top of the page for information............

[Fiona-Jane]

thanks for the info!

but is there a quantitative scale? something like the Contompasis scoring system for hypermobility.... but for skin?

fi xx

[nonyanomemory]

Ask an expert fi - we are not doctors here - just normal people

[Fiona-Jane]

i know that!!

but some people who post on the site seem to be soooo knowledgeable.... and i find out info almost everyday by reading the messages.... i often learn stuff that i expected only a dr to know about!!


and there are almost a 1000 members in the member list.... surely one person knows the answer !!


but i really do appreciate all the info that is posted on this site- its been a god send!

so thanks to all who have helped me!

fi xx

[nonyanomemory]

The genetic basis of the joint hypermobility syndromes
Malfait et al. Rheumatology.2006; 45: 502-507

anyone who can gain access to this may be able to help - it is available on a pay per view basis - probably the reason why is that as lay persons we wouldn't understand

[antimatter]

On the Canadian ehlers danlos site, there is a document on diagnosis which lists how to measure hyperextensibility.

It talks taking the skin on the ventral aspect of the forearm, at the middle (I think they mean from the thinner soft part) and measuring how far it can be stretched to get a score in the range of 0 to 5.

The formatting is messed up, so it makes very little sense. I interpret it to mean (husband suggested it when I was looking at it quizzically):

less than 4 cm gives a score of 0
between 4 and 5 cm gives a score of 1
between 5 and 6 cm gives a score of 2
between 6 and 7 cm gives a score of 3
between 7 and 8 cm gives a score of 4
greater than 8 cm gives a score of 5

Based on that interpretation, I get a score of 0.

I saw the same chart elsewhere on the internet with the same cryptic formatting.

Here is the link from the Canadian site:
http://www.ehlersdanlos.ca/diageds.html

I must stress that my interpretation may not be what they intend. Hopefully someone better educated in the matter will come along and tell us one way or the other.

...antimatter