Re: Sorry to whine - blood vessel swellings

[Guest guest]

Jo, I can't imagine having to deal with this! I would be a basket case! I

wish I could do something to help you besides send good wishes and pray, but I

cannot. You do have both of those, however, when ever you need them, for

however long!

Love Lana

[Guest guest]

Jo,

I don't know what to suggest, I feel so terrible for you, this must be so

frightening for you! When something bursts can you try putting some gauze

and a pressure dressing on it; ie, an ace bandage wrap. The pressure may

decrease the bleeding and size of the hematoma, as well adding an ice pack.

I don't know what else to suggest. Hugs and Love, S.

Sorry to whine - blood vessel swellings

> I'm going to apologise straight off as this is a bit of a whine, but

> I'm feeling a little sorry for myself tonight. As you know, I've been

> having these weird bleeding issues (Prof Bird feels are due to my

> variant of EDS/Marfan) where the vessels burst and spurt through my

> skin, then cause large, painful haematomas. About a fortnight ago I

> had a really bad bleed in my left wrist, it bled a lot and then it

> ballooned up alarmingly creating a large pulsating sac within the

> vein. It eventually settled down but it hasn't quiet felt right since

> and has been very sore - especially as I need that wrist splinting

> due to subluxations of the Triquetrum and Lunate bones.

>

> Now though I have started getting painful swellings in the vessels

> leading into my hand, some of which disperse but most of which keep

> growing in size and pain level until they actually rupture. I've had

> three in the past 24 hours and now sport a lot of bruising in the

> wrist and hand and already have two new pulsating bulges in the same

> area. I'm still getting spontaneous bleeds and bruises in my legs

> too, but I have to confess that this wrist is concerning me the most.

>

> I'm planning to start monitoring my BP levels to see if I get any

> spiking coinciding with the bleeds...thanks Caro for that advice. But

> beyond that I'm pretty puzzled and more than a little concerned about

> repeated ruptures and of course the risk of clots too.

>

> I'm sorry for the whinge but I'm just a bit bemused and scared by my

> freaky, mutant body's latest trick at present. Thanks for listening.

> I hope everyone is having a good and I send lots of good wishes and

> thoughts to you all.

>

> Love and hugs....Jo

> xxx

>

>

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

>

[Guest guest]

Jo,

I don't know what to suggest, I feel so terrible for you, this must be so

frightening for you! When something bursts can you try putting some gauze

and a pressure dressing on it; ie, an ace bandage wrap. The pressure may

decrease the bleeding and size of the hematoma, as well adding an ice pack.

I don't know what else to suggest. Hugs and Love, S.

Sorry to whine - blood vessel swellings

> I'm going to apologise straight off as this is a bit of a whine, but

> I'm feeling a little sorry for myself tonight. As you know, I've been

> having these weird bleeding issues (Prof Bird feels are due to my

> variant of EDS/Marfan) where the vessels burst and spurt through my

> skin, then cause large, painful haematomas. About a fortnight ago I

> had a really bad bleed in my left wrist, it bled a lot and then it

> ballooned up alarmingly creating a large pulsating sac within the

> vein. It eventually settled down but it hasn't quiet felt right since

> and has been very sore - especially as I need that wrist splinting

> due to subluxations of the Triquetrum and Lunate bones.

>

> Now though I have started getting painful swellings in the vessels

> leading into my hand, some of which disperse but most of which keep

> growing in size and pain level until they actually rupture. I've had

> three in the past 24 hours and now sport a lot of bruising in the

> wrist and hand and already have two new pulsating bulges in the same

> area. I'm still getting spontaneous bleeds and bruises in my legs

> too, but I have to confess that this wrist is concerning me the most.

>

> I'm planning to start monitoring my BP levels to see if I get any

> spiking coinciding with the bleeds...thanks Caro for that advice. But

> beyond that I'm pretty puzzled and more than a little concerned about

> repeated ruptures and of course the risk of clots too.

>

> I'm sorry for the whinge but I'm just a bit bemused and scared by my

> freaky, mutant body's latest trick at present. Thanks for listening.

> I hope everyone is having a good and I send lots of good wishes and

> thoughts to you all.

>

> Love and hugs....Jo

> xxx

>

>

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

>

[Guest guest]

Jo and everyone else-

Dont feel too bad, you are not alone. Today I busted a vein in my

palm today with my stapler. Now it looks like I rubbed metal on my

hand.

It is scary seeing it happen in the wrist. I saw that once too. The

arm rest in my car caused it.

I couldnt see it happen in my hand as much as you can in the wrist.

Whats scary afterwards is where else is this happening?

Have you been taking vit c off and on? Sometimes I wonder if my

skipping of days of doses might cause it.

kim

[Guest guest]

Jo and everyone else-

Dont feel too bad, you are not alone. Today I busted a vein in my

palm today with my stapler. Now it looks like I rubbed metal on my

hand.

It is scary seeing it happen in the wrist. I saw that once too. The

arm rest in my car caused it.

I couldnt see it happen in my hand as much as you can in the wrist.

Whats scary afterwards is where else is this happening?

Have you been taking vit c off and on? Sometimes I wonder if my

skipping of days of doses might cause it.

kim

[Guest guest]

As a suggestion, those squeeze to activate ice packs are great but

you need 2 because they dont last very long. So you might as well

buy a big box of them. I have not seen that though yet.

[Guest guest]

As a suggestion, those squeeze to activate ice packs are great but

you need 2 because they dont last very long. So you might as well

buy a big box of them. I have not seen that though yet.

[Guest guest]

Dear Jo,

I am so sorry you are having these problems! I have had problems like this

in the past too. If the pain becomes severe from the bruising or bleeding go

get it evaluated at the doctors or emergency room.

I agree with , a pressure dressing may be helpful to stop the

bleeding/bruising and prevent them from becoming severe. This can be

accomplished with

an Ace Bandage to the area. If you can't do this yourself and no one can help

you it would be helpful to go to the doctor or emergency room to have one

applied. Be sure to remove the bandage periodically and check the area to be

sure the bleeding has stopped. Also, do not keep a pressure bandage on if it

feels like your circulation is being cut off.

Other than that, I too would recommend taking Vit C. There are doses which

were recommended to me by the lab in Seattle (Collagen Diagnostics lab). But,

your situation might be different. Next appointment with Dr. Bird, I would

ask about what amount you should take. He will know more about your overall

health issues and conditions. In my case I have to be careful not to take too

much, but that is only due to the fact that I have one kidney....and that one

does not function well. But I still take about 500-1000mgs/day. I have found

this does help tremendously with bruising and bleeding. Now when I bruise,

they are much smaller and go away quicker. It did take almost a year for me to

see visible changes, so it will not be a miraculous quick fix, but in the long

run, very helpful.

I am keeping you in my prayers Jo hang in there.

Hugs,

Sue

[Guest guest]

Jo --

I am so sorry you are still having these terrible vessel problems. As Lana

said, I wish there was something I could do, but I don't know what. I will be

sending you my thoughts and prayers. I hope you can get some answers soon.

Love, Patti

Sorry to whine - blood vessel swellings

To learn more about EDS, visit our website: http://www.ceda.ca

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[Guest guest]

Jo --

I am so sorry you are still having these terrible vessel problems. As Lana

said, I wish there was something I could do, but I don't know what. I will be

sending you my thoughts and prayers. I hope you can get some answers soon.

Love, Patti

Sorry to whine - blood vessel swellings

To learn more about EDS, visit our website: http://www.ceda.ca

------------------------------------------------------------------------------

[Guest guest]

Hi Jo,

Since I haven't been on here much lately, this has probably been

mentioned before, but in case it hasn't.... Are you on Vitamin C

supplements? Some find these so helpful for these spontaneous

bruising problems... I can't remember how much it is common to take

though... Also, have you tried any of these creams that helps in

getting the bruise to go away sooner? A friend of me who had type IV,

was so happy with these creams, she thought it helped her a lot...

Aase Marit