Skin Pics

[louloutinks]

I wanted to put some pics up here that my doc said is caused by my ehlers danlos syndrome. I have looked everywhere for links between eds and rashes but haven't come up with nothing.

Just wondered if anyone on here could tell me what they are.

I also get hives and heatrash from the sun and also rashes from water. I flush sometimes with vertigo and get sunburn now when I have never burnt in my life! I get red hot ear with bump on but haven't added a pic of that yet.

Link to pics

Any ideas welcome. Thankyou 80)

[Godsgal]

We know mast cell activation has been linked to pots so go get a skin biopsy and make sure they test it for mast cells. Call the dermatologist and make sure they are familiar before you go. I just heard from a friend with mast cell activation and she mentioned she had been hearing about the red hot ear on the mast cell forum. A lot of my stuff looks like yours by the way. But the only way to be sure is to get it tested.

[louloutinks]

Hi Godsgal,

hope you are doing fine.

My pots is said to be caused by my EDS but I have heard that you can have many an issue going on at the same time (if I have made sense there).

All my skin issues started around the same time and so did a lot of my pots symptoms too. If the pots is related to the eds then surely they would have shown earlier - maybe they did as years ago I went to the doc with tachy and was put on propranolol, and black outs in my twenties. But all the skin stuff has started over the past few years, cant sit in the sun when I used to all the time etc.

Get dischidrotic eczema, perioral dermatitis, when I used to have such clear skin with no problems all my life.

I am going to UCLH in London soon, to see a rheumatologist again - should I show them my pics?

My friend is going to come with me as I am terrible at explaining myself and also they have seen just how bad my skin and I have been, as the pics do not show it at its worst. They have also seen me turning purple!

What all these spots, turning purple and having livedo, I must look very attractive lol!

Thankyou

[Godsgal]

I wish I knew more about EDS and skin issues. Skin issues are best to be shown to each doctor you see because they could be a symptom of so many conditions, but especially the dermatologist. I wouldn't even have my diagnosis if I had not insisted on the biopsy. Dermatologists are good to see anyway once a year to rule out skin cancer and precancerous changes so that's incentive to go to.

Yeah, on being attractive. I gave up on my skin during this whole drama! Sunlight bothers me too so I'm pretty pale and shaving seems to bother me also so I'm a real gem. Skinny jeans are a hot commodity around here.

[louloutinks]

yay for the skinnies lol! My skin flares up and itches like mad if I shave too - get lovely swellings if I itch my legs. The attractiveness just gets better!

My docs are useless - my lovely doc moved on and now I am left with the docs that just look at you with a raised brow - great.

[Birdlady]

Obviously I'm not a doctor.

Have you ever looked into porphyria? I'm not sure of your history and symptoms but just something I've come across over the years of my research. Your reaction to sunlight made me think of it. I know a woman on another forum I post on that has this disease and she cannot be in the sun for long periods of time. Hers is very severe and has to eat a high calorie diet with lots of carbohydrates or she suffers from the acute attacks.

Your spots and itchiness after scratching could be dermatographia too. It's hard to tell because the pics are blurry, but the shaving issues could be from keratosis pilaris on the legs.

Just some things to look into!!

[louloutinks]

Hi Dana and thank you for the info.

On the keratosis pilaris, I did see some pics and thought ah thats it...but then I read about it. The brown marks on my skin are not just where I shave - I only shave the lower half of my legs and they tend to be top and bottom - they do however seem to return when I have the livedo bad. It is strange as all this seems to come and go. I will take a look at the porphyria (sp?)

Thank you Dana

[Noreen]

Tinks-

What meds are you on?

[juliegee]

Tinks-

Forgive my stupidity, but is there any way that you can tell us what parts of your body each pic is? The reason I ask, if 064 is your lower back (could be way off!) the vertical lines look like stretch marks which ARE very common in EDS with some contact hives or dermatographia from contact with clothing? The blue above looks like telangectasias which are also common in connective tissue disorders like EDS. I can make out the top of your chest in 292. You are flushing & experiencing dermatographism there.

Lots of your pale brown bumps look pretty benign, BUT so did Jared's and she had cutaneous masto. If in doubt, get it checked out!

Julie

[louloutinks]

Oh Macks Mum you have really made me chuckle...064 is my wrist and hand - very bony considering I am 11 stone! I will add a comment on each one -sorry I suppose because I know what bits they are.....

what do you think the reddish spots are - they are more under the skin. I was covered all over my legs for about a week. The brown spots tend to appear when I get livedo or when my legs go purple.

What is dermographism (?). The thing on wrist was very similar to what was on my chest and I also get it on my left ear. My left ear gets real hot and red with a bump.

One thing I did remember this evening - just before Christmas gone I had what I thought was a liver or sun spot on my forehead(I am only 41) and then it started to swell up - from about 4mm to 10mm. It was raised too. I went to the docs as it was getting bigger, and he wasnt sure so he gave me cream and said if it didnt go to come back. I saw another doc as it did not go and he wasnt sure either. He said it might be a solar karatosis and if it had not one in a month to come back. But it went finally after 3 weeks and I have faint patch where it was.

I have a few more of these 'liver spots' over my body. Thanks MM

[louloutinks]

Hi Reen, I have stopped taking naproxen for a while now as I have had abnormal renal function results. I wasnt taking these at the time of the last renal test which was still abnormal but it got me worried. I am only going to take them if I cannot bare the pain anymore!

[issie]

I have a theory - that's all it is - no proof or reading about it any where. But with us with EDS - that's a connective tissue disorder. What can help collagen and connective tissue? What helps our skin to be strong and produce collagen - Vitamin C. The little red dots all over your legs - I have them all over my arms and legs too. It looks like every pore is dotted with a little reddish brown dot - I wonder if we're vitamin C deficient. If you look at scurvy - one of the symptoms is red and purple spots. I also do the flush thing too and if you rub my arm it welts up in red - so it could be mast cell too. But I think possibly the Vitamin C issue could be part of the problem. Makes sense because it is connected with collagen.

[Sarah4444]

issie - I haven't had a chance to read about this yet, but apparently some people with mast cell disorders feel that Vitamin C has helped them improve their health a lot. I think there may be some posts/articles on the Mastocytosis Society Canada site about this.

[icesktr189]

When I shave my legs, I get rashy and blotchy all over. It looks like zits sometimes and looks really gross and weird. Also if I rub my skin, especially my chest, it turns bright red. What is this?

[issie]

When I shave my legs, I get rashy and blotchy all over. It looks like zits sometimes and looks really gross and weird. Also if I rub my skin, especially my chest, it turns bright red. What is this?

Dani,

Allot of people do this with shaving - it cuts the top of the pores off and it looks that way. Some people actually have an allergy to shaving - it is a huge long name. I know about it because my husband has it. He can only use a foil electric shaver because it doesn't cut very close. If he shaves with a razor his face looks like a pizza pie, it's horrible. He can't shave with a razor.

Not sure about rubbing your chest - how hard do you rub? Is it just like a sweeping motion or is it a harder rub? Are you fair skinned and thin skinned?

[issie]

issie - I haven't had a chance to read about this yet, but apparently some people with mast cell disorders feel that Vitamin C has helped them improve their health a lot. I think there may be some posts/articles on the Mastocytosis Society Canada site about this.

Sarah,

I searched on the site Vitamin C and it didn't come up for me. Where do I need to look to find it? Not real familiar with that site, yet.

[Birdlady]

Keratosis pilaris can occur anywhere on the body. I have it all over me and it isn't just in areas where I shave. It is really hard to tell in the pics though. But if you go over a KP bump with a razor it will be excruciating and even bleed at times. Do you get ingrown hairs where the red bumps occur?

Looking at it again I think at least some of the marks are dermatographia.

http://www.mayoclinic.com/health/Dermatographia/DS00755/DSECTION=symptoms

[louloutinks]

That was an interesting link Dana. When I have a bath sometimes that happens, its like the water really tickles my skin, I scratch it and I end up looking like I have fallen in nettles and they come up where I have scratched.

Hi Issie, I have been eating lots of strawberries, melons,etc drinking c-juice so wouldn't think I am c deficient. Have you got EDS?

Why do skin issues just start? It seems all the skin problems started with hives and heatrash a few years back, sun sensitivity, then the perioral dermatitis, dischidrotic eczema, livedo, turning purple on chest and knees, brown dots, itching, swelling, red spots - in that order - would it be an immune thing or something like that. That's why I have wondered if it is to do with Pots as it all started around the same time.

Oh and that link also reminded me that if I wash my hands in cold water,my hands and arms go really blotchy. When I have been swimmning I come out in the brown dots all over my trunk and legs and have had many a strange look from others!

Why are these things intermittent too i.e cold water not all the time, sun most of the time - if I am sensitive to these things then why not ALL the time - I really just do not understand.

Ah just to add - could it be to do with my kidneys as they are not functioining correctly?? Just a thought

[louloutinks]

Added ear and another chest pic!

[Christy_D]

My son has bumps all over both of his arms. Some are raised and some are brown and flush. He was diagnosed with keratosis pilaris(sp) by one dermatologist and another dermatologist wasn't so sure. When the doctor pushed down on his skin with a glass slide, the brown dots disappeared. They came back immediately when she removed the slide. She said all the brown dots on my son were where blood was just pooling.

She gave us several different ointments/lotions to help with the keratosis pilaris, but nothing helped. They also seemed to look worse after a hot shower, which makes sense since the shower would bring the blood to the surface.

Christy

[Sarah4444]

issie - I haven't had a chance to read about this yet, but apparently some people with mast cell disorders feel that Vitamin C has helped them improve their health a lot. I think there may be some posts/articles on the Mastocytosis Society Canada site about this.

Sarah,

I searched on the site Vitamin C and it didn't come up for me. Where do I need to look to find it? Not real familiar with that site, yet.

Maybe write a post and ask Carrie - I know she mentioned something to me about Vit C (and I think I stumbled across something there too). She is nice.

[issie]

Hi Issie, I have been eating lots of strawberries, melons,etc drinking c-juice so wouldn't think I am c deficient. Have you got EDS?

Yes, I do have EDS. But, you may be creating some of your problems by eating histamine causing foods - strawberries are a biggie.

[louloutinks]

Hi Issie, I have been eating lots of strawberries, melons,etc drinking c-juice so wouldn't think I am c deficient. Have you got EDS?

Yes, I do have EDS. But, you may be creating some of your problems by eating histamine causing foods - strawberries are a biggie.

Ah Issie you have just helped a penny drop....I came up in single large hives each time and I thought it was down to the cream I was having with the strawberries...would that cause single hives?

I have just found this:

The foods most commonly reported to induce urticaria are shellfish, fish, egg, nuts, chocolate, berries, tomatoes, cheese, milk, and wheat.

Foods reported to release histamine directly from mast cells are uncooked egg whites, shellfish, strawberries, tomatoes, fish, chocolate, pineapple and alcohol.

Foods containing histamine—Aged protein containing foods and fermented foods commonly have increased histamine levels.

Foods reported to be high in histamine are fermented cheeses (e.g. Camembert, Brie, Gruyere, Cheddar, Roquefort, Parmesan), brewer's yeast, shellfish, many fin fish, canned fish, tomato, spinach, red wine (especially Chianti), beer, unpasteurized milk (e.g., cow, goat or human milk), chicken, dry pork sausage, beef sausage, ham, chocolate, fermented soy products, and all fermented vegetables, such as sauerkraut.

I eat lots of the embolden ones....ooh er I am really surprised. Does this mean I am allergic to these then?

[issie]

[

I eat lots of the embolden ones....ooh er I am really surprised. Does this mean I am allergic to these then?

Possibly, but maybe not. If you have mast cell activation disorder - it doesn't necessarily mean that you're allergic just that it activates your overactive mast cells and then you're miserable. A true allery can be life threatening. I have a true allergy to shrimp - 1/2 and I could die. But, my guess is you could be reacting to these things. There's one way to find out. Leave them all off for about a month and then slowly add one back at a time and see if you react. The only problem with this is - you may be fine one day and react another day. There is one sure solution - eliminate them completely. That's what I'm TRYING to do.

[Godsgal]

I did the histamine free diet. I do it perfectly to a T. And let me tell you if I sneak something in I shouldn't, I get punished big time!!

[

I eat lots of the embolden ones....ooh er I am really surprised. Does this mean I am allergic to these then?

Possibly, but maybe not. If you have mast cell activation disorder - it doesn't necessarily mean that you're allergic just that it activates your overactive mast cells and then you're miserable. A true allery can be life threatening. I have a true allergy to shrimp - 1/2 and I could die. But, my guess is you could be reacting to these things. There's one way to find out. Leave them all off for about a month and then slowly add one back at a time and see if you react. The only problem with this is - you may be fine one day and react another day. There is one sure solution - eliminate them completely. That's what I'm TRYING to do.