The Fragility of Skin

[Violet2Dawn]

Well crafty friends, I needed a place to vent and some small dose of sympathy.

Some of you may know of my severe allergy to all adhesives and how it makes miniature crafting challenging for me. Mind this is a new development in my skin, it has been progressing over the years from simple itch to any adhesive and a severe reaction.

Well I have also been dealing with Folliculitis on my scalp for over 20 years. It too started small, one or two only in the winter, then more often then more of them. It continued to ones that didn't heal for weeks then months. My Dr and I have done all the over the counter treatments for hair and scalp. I have tried vitamins and all sorts things people have suggested. It has progressed tot he point of seeming to itch from the inside out, and almost constant pain. Not intolerable pain, just a dull, you know it is there pain. Over these years I have been cutting my hair shorter and shorter, and like most aging people some of it has grayed, and more has fallen out never to return. Ah...you see all of these things are connected.

My Rosacea with the bacteria on my cheeks and chin, the thinning hair, and the folliculitis are all related. Now lets not forget the glue sensitivity, and the latex sensitivity, they also contribute to this. Fragile skin and bacteria. Well any allergen really. I could shower, use the anti bacterial soap and strong zinc shampoo, and within a few hours of housework, work, outside with the dog or anything, even the heat of the oven, and my scalp would be itching, my hair would be limp and my fingers itching to relieve this.

This week I took drastic action. I have gone with a homeopathic product called Emuaid, soap and ointment. Twice the cost of the Zincplex shampoo, sighs. Then I cut all my hair off. Did it in the bathroom with small scissors, because lets face it there wasn't much hair at all anyway.

Sure I could of had it buzzed at the salon, but then I ran the risk of them nicking one of the sores, and the embarrassment of the exposed sores not to mention that my totally round face looks just like a Babba with a Babushka on.

I am tired of the sores, I am tired of my skin rebelling. Overall when I cut off my hair there were 20 sores, some of them have been there a few months. Day 1 it just itched and was sore, I used Cortaid that day. After that I have been washing with the Emuaid soap even on my scalp. Then applying the ointment. It smells like tea tree oil...but they do look calmer and not as angry as when I exposed them. I knit 2 hats this week and have another in progress, and I picked up a few of those chemo caps to wear when out.

So, whew that was good to get it all out. And I didn't have anyone giving me the "God she is complaining" look again. If anyone has any suggestions, or ideas I would listen to them. Prayers and good vibes are appreciated. Mostly I just need a solid group of good people to be supportive. Thanks in advance for all of that Mini Crafters!

[KathieB]

Good grief, Dawn, I hope this new treatment is effective!

[Marysuewashere]

Have you been tested thoroughly for allergies? Milk protein or wheat problems, for instance, can weaken your entire system. Another thought is about Ehler's Danlos Syndrome. Fragile, sensitive skin is part of one of the types of EDS. Do your joints hold together well? Do you bruise easily? If you ever feel like your knees fall out of the sockets when you step off of a curb -- it could be EDS.

My thinking is that the skin deterioration is a part of a larger, systemic situation. You might try this: draw an outline of a body and label every little problem. Everything. Even ear infections and headaches. Take it in and talk to your doctor about your total health, not just each individual problem.

In the mean time, simplify your diet. No processed food. Raw veggies, fresh fruit, clear broths, and lots and lots of clean water. It always helps to improve your food.

Good luck finding the root of it all. I hope you feel better soon.

[rodentraiser]

What about what's in the shampoo and conditioner? I'm sure you know about this already, but I was reading about people who don't shampoo their hair any longer - all they do is wash it with regular water. There are shampoos that are supposed to be all natural, no perfumes or soap or anything in them. I just recently tried something that has no sulfates in it. I don't really notice any difference in my hair, but I have noticed that my scalp doesn't start itching like the dickens anymore just two days after I shampoo (and I used to be able to go a week between shampooings.).

And I just have to ask, did the doctor recommend an antibacterial soap for you? Because somehow I can't believe that would do any good. I could be way wrong, of course.

Here's hoping everything turns out OK, though. That has to be a nightmare to live through.

[Violet2Dawn]

Have you been tested thoroughly for allergies? Milk protein or wheat problems, for instance, can weaken your entire system. Another thought is about Ehler's Danlos Syndrome. Fragile, sensitive skin is part of one of the types of EDS. Do your joints hold together well? Do you bruise easily? If you ever feel like your knees fall out of the sockets when you step off of a curb -- it could be EDS.

My thinking is that the skin deterioration is a part of a larger, systemic situation. You might try this: draw an outline of a body and label every little problem. Everything. Even ear infections and headaches. Take it in and talk to your doctor about your total health, not just each individual problem.

In the mean time, simplify your diet. No processed food. Raw veggies, fresh fruit, clear broths, and lots and lots of clean water. It always helps to improve your food.

Good luck finding the root of it all. I hope you feel better soon.

Lets see Mary Sue...

I asked at my last visit if I should be tested for allergies, and my Dr of 30 yrs (he is my age) said he didn't feel it five us any new information. We know my allergies, and I have developed a few this past 2 years....No more Fresh Pineapple, Fresh Strawberries and newest is Tree Nuts....I am lactose intolerant and use Lactaid products and pills for that. Wheat has never been a problem.

EDS...wow that is a new thought. But of the symptoms you mentioned I only have the bruise easily one.

I try to eat simple, as I am also Diabetic, and insulin dependent, Type II.

As for the body outline, my Dr laughs I bring lists to visits, and he puts it all in the computer file. He tells me I make him type more than any of his patients. I also call when new things pop up and go in for anything not normal. Like I said we are the same age (53) and he has been my Dr for 30 years, so he knows and has my complete history.

Thanks for your ideas, I will track my food responses more just to see, and I plan to read more on EDS!

[Violet2Dawn]

What about what's in the shampoo and conditioner? I'm sure you know about this already, but I was reading about people who don't shampoo their hair any longer - all they do is wash it with regular water. There are shampoos that are supposed to be all natural, no perfumes or soap or anything in them. I just recently tried something that has no sulfates in it. I don't really notice any difference in my hair, but I have noticed that my scalp doesn't start itching like the dickens anymore just two days after I shampoo (and I used to be able to go a week between shampooings.).

And I just have to ask, did the doctor recommend an antibacterial soap for you? Because somehow I can't believe that would do any good. I could be way wrong, of course.

Here's hoping everything turns out OK, though. That has to be a nightmare to live through.

Oh Kelly....

I read and investigate all the ingredients in my soaps and shampoos. I have had to do that for years. Allergy free detergents and softener there too. Since I have little hair now, I am just using the soap. My Dr advises me to use antibacterial soap for bathing, hand washing and dish washing and I do, just because I am a germ freak anyhow.

Thanks for your good thoughts and good questions. When my hair grows back I hope I can wash it maybe every other day, but that is future thoughts.

[Violet2Dawn]

Kathie B....you and me both. I think this is my last straw, and if it doesn't clear up I may insist on full allergy testing, skin specialists etc. I know we all change as we age and acquire or grow out of allergies all through out life, but I seem to be just gaining them, rather than giving them up.

Thanks!

[moonberry]

Dawn

My husband has rosacea too, mostly on his face. He washes twice daily with Cetaphil antibacterial gentle cleansing bar (Galderma, in the US manufactured by Bradfords Soap Works in Rhode Island).

Then he applies moisturizer from QV (an Australian brand, but I'm sure you'll find similar hypoallergenic product in the US).

When the sores get too much, he drinks a very low dose antibiotic for 2 days and it helps clear it up for a week or two.

He also has polycythemia vera (opposite of leukemia) where his body makes too many red blood cells. The doctors think the two are linked somehow.

Have you had your blood tested? Is it very thick? Does it clot very quickly? I think the test for it is the JAK42 genetic mutation.

He has to take a chemotherapy tablet daily to kill the overactive bone marrow and to keep his blood thin enough to prevent strokes. So far he is doing very well on the treatment and his prognosis is almost back to a normal lifespan.

I know how he battles nearly daily with the fragile skin and the sores, so I really hope you find something that helps.

[CraftyMtnMom]

Oh, Dawn. I am so sorry to hear you have to live with this stuff. On the other hand, it is so good to know you don't let it bring you down and you keep on keeping on. I probably would have just thrown in the towel by now if I were you. It's the toughie's like you and Kat who help others like me keep moving forward when we feel like giving in and giving up.

May God bless and keep you. And may you find a solution to your health problems...very soon.

[Marysuewashere]

Keep digging until you find a root cause and relief. Never give up pestering your doctor!

[chesterfieldzoo]

I know you have been using the same doctor for 30 years and that might be part of the problem. I would try another doctor. Draw the picture, mark all the issues and make a list of what can't be seen (adhesive allergy) and take that to another doctor. Sometimes new eyes can see something that the same old eyes have missed. (Rather like when you see someone every day and you don't notice weight gain/haircut/etc, but someone else sees it right away)

[Sable]

I also have a skin condition which has no known cause or cure. It slowly destroys the collagen in the skin. A Facebook Support group for my condition was set up a few years ago and I read it everyday looking for breakthroughs. It's an extremely supportive group, just like the people in this forum. I checked and there are two Roseacia support groups on Facebook.

Secondly, do you use well water? Or do you live near an old industrial chemical site?

Thirdly, I agree, you may want to go see a doctor that specializes in chemical intolerance. Are you near a large university medical center?

My thoughts are with you. I know what it's like to have to hide parts of my body so I don't frighten people with my non-contagious condition.

[rodentraiser]

Those are good ideas, Selkie. I remember when a friend had a miscarriage and it turned out that the number of miscarriages in this neighborhood was way above the average. Come to find out, there were industrial chip making plants several miles away and the ground and all the well water showed high levels of contaminates. So that could be a posibility. Even the mercury dentists used to use in filling cavities could make people sick over time.

I guess I shouldn't, but what I'm still wondering about is the anti-bacterial soap. From what I've read, most bacteria are resistant to those soaps now anyway and I'm wondering if the soap isn't killing off the good bacteria as well as the bad bacteria. When I had to give antibiotics to my pet rats, I always had to give them a probiotic as well, to replace the good bacteria that got killed by the antibiotics.

Dawn, does your doctor think there is any chance this is a viral disease? Somehow, I can't help thinking that all these things you describe are related.

Well, listen to me here - like I think I know more than your doctor. *inserts foot into mouth* I'm sure he has a handle on what's going on. Please forgive my wild wanderings here.

[woodland_miniatures]

Dear Dawn, don't give up on your search for answers. I'm 58, have had an "unspecified" autoimmune inflammatory disorder since my late teens, and no label and/or solution all this time. I'm currently going through a really rough patch in my own health (yesterday total despair almost overwhelmed me and a nurse I knew drove nearly 50 miles to come sit with me, listen to me "whine" and hug the stuffing out of me), and during one of the three hospitalizations I've had in the last two weeks a doctor offered up a thought for my overall long-term condition. He and his team thought that I might just have a long-undiagnosed case of

Crohn's disease. Gave me some things to read, and OMG, it just might be the culprit. Anyway, there are more urgent issues health-wise for me right now, but to actually have a strong candidate for what's been a real problem all my life, it's like finally knowing what the enemy is and there ARE things that can be done to cope, instead of just striking out at random.

I guess what I'm trying to say, Dawn, please don't despair - there IS an answer out there, somewhere.

And I'm sending you a huge hug, so hold on to your stuffing!

[nsmar4211]

I second the no antibacterial soap. It's just making resistant germs.... I stopped using it myself and have been sick LESS!

Here's a long shot....Have you tried listerine on the sores/your head? It's what I use on the dog for her hot spots and rashes and such. It'll sting like heck but it goes away fast, I use it when I get cut too. Has to be the brown formula, the blue and green have sugar in them. Can use generic, as long as its brown . She has very sensitive skin and rips herself to bleeding shreds after lying in the grass, listerine and a tshirt do wonders. (tshirt so she cant scratch her belly)..... Can' hurt!

Hope you figure it out soon

[Violet2Dawn]

Dawn

My husband has rosacea too, mostly on his face. He washes twice daily with Cetaphil antibacterial gentle cleansing bar (Galderma, in the US manufactured by Bradfords Soap Works in Rhode Island).

Then he applies moisturizer from QV (an Australian brand, but I'm sure you'll find similar hypoallergenic product in the US).

When the sores get too much, he drinks a very low dose antibiotic for 2 days and it helps clear it up for a week or two.

He also has polycythemia vera (opposite of leukemia) where his body makes too many red blood cells. The doctors think the two are linked somehow.

Have you had your blood tested? Is it very thick? Does it clot very quickly? I think the test for it is the JAK42 genetic mutation.

He has to take a chemotherapy tablet daily to kill the overactive bone marrow and to keep his blood thin enough to prevent strokes. So far he is doing very well on the treatment and his prognosis is almost back to a normal lifespan.

I know how he battles nearly daily with the fragile skin and the sores, so I really hope you find something that helps.

Thanks for sharing Lene, I am sorry about your husband and all her goes through.

For some of your mentions: I cant use Cetaphil it makes my skin itch. I find that most lotions, creams and moisturizers do. They are heavy and clog my pores so I avoid them, using only Eucerin or Gold Bond Diabetic if I have to. Many of them contain petroleum or by products of petroleum, which gives me the same reaction as latex, an almost instant and constant itching and red rash. My blood is not overly thick, and clots well in the normal range of time. My blood is tested every three months for the usual scans of basic levels, A1C and other things like Thyroid levels, Liver function, Iron and the like.

Thank you for your support and Good Luck to you and your husband with your daily challenges too!

[Violet2Dawn]

Oh, Dawn. I am so sorry to hear you have to live with this stuff. On the other hand, it is so good to know you don't let it bring you down and you keep on keeping on. I probably would have just thrown in the towel by now if I were you. It's the toughie's like you and Kat who help others like me keep moving forward when we feel like giving in and giving up.

May God bless and keep you. And may you find a solution to your health problems...very soon.

Oh Vicki Thank You for your good thoughts. I find I deal with upset more and more with laughter. Trying to find the positive in a negative makes me think of things in new ways. I get frustrated and impatient often but I also have that deep embedded, New England Yankee "I WILL make this work, or die trying" mentality. I can not contain my creativity for long when sick with anything, I have to be able to let the right brains have control of the brain as often as possible. I am glad that you find inspiration among other in this group. Thank You again

[Violet2Dawn]

I know you have been using the same doctor for 30 years and that might be part of the problem. I would try another doctor. Draw the picture, mark all the issues and make a list of what can't be seen (adhesive allergy) and take that to another doctor. Sometimes new eyes can see something that the same old eyes have missed. (Rather like when you see someone every day and you don't notice weight gain/haircut/etc, but someone else sees it right away)

You know Deana I have tried other Drs. and have found it very frustrating because they don't know me, and don't have my history. I guess I find it bothersome to go over I all again, because they always ask the same questions. I am not often a patient person, I have had to learn that. My Dr is part of a 5 Dr group, and I know they all discuss their patients and come up with new ideas. He will tell me Dr X thinks that ..... or Dr Y wants to know if you will..... He also does about 3 Yale Med school senior for months of rotation and I deal with them asking questions and cross consulting. Not to mention that I do research on my own, I do make lists of questions that I take in and do ask and discuss with him. Some of them off the wall, and other pretty realistic. Thanks for the thoughts and suggestion, I may do a second opinion if this does not clear up (the new homeopathic stuff). I was great to have you chime in.

[Violet2Dawn]

Those are good ideas, Selkie. I remember when a friend had a miscarriage and it turned out that the number of miscarriages in this neighborhood was way above the average. Come to find out, there were industrial chip making plants several miles away and the ground and all the well water showed high levels of contaminates. So that could be a posibility. Even the mercury dentists used to use in filling cavities could make people sick over time.

I guess I shouldn't, but what I'm still wondering about is the anti-bacterial soap. From what I've read, most bacteria are resistant to those soaps now anyway and I'm wondering if the soap isn't killing off the good bacteria as well as the bad bacteria. When I had to give antibiotics to my pet rats, I always had to give them a probiotic as well, to replace the good bacteria that got killed by the antibiotics.

Dawn, does your doctor think there is any chance this is a viral disease? Somehow, I can't help thinking that all these things you describe are related.

Well, listen to me here - like I think I know more than your doctor. *inserts foot into mouth* I'm sure he has a handle on what's going on. Please forgive my wild wanderings here. kelly

Kelly there are no bad ideas, just ideas that don't work for situations.

I do live within a 5 mile radius of a nuclear power plant, I have for almost 30 years. I don't know if that plays into this. There are no large groups of anything in children or any age group here. I live on top of old farmlands, this current house part of a development in the late 1940s.

I do a Greek yogurt almost daily in the am, and push the fiber too.

Thanks for your good thoughts and interesting questions.

[Violet2Dawn]

Dear Dawn, don't give up on your search for answers. I'm 58, have had an "unspecified" autoimmune inflammatory disorder since my late teens, and no label and/or solution all this time. I'm currently going through a really rough patch in my own health (yesterday total despair almost overwhelmed me and a nurse I knew drove nearly 50 miles to come sit with me, listen to me "whine" and hug the stuffing out of me), and during one of the three hospitalizations I've had in the last two weeks a doctor offered up a thought for my overall long-term condition. He and his team thought that I might just have a long-undiagnosed case of

Crohn's disease. Gave me some things to read, and OMG, it just might be the culprit. Anyway, there are more urgent issues health-wise for me right now, but to actually have a strong candidate for what's been a real problem all my life, it's like finally knowing what the enemy is and there ARE things that can be done to cope, instead of just striking out at random.

I guess what I'm trying to say, Dawn, please don't despair - there IS an answer out there, somewhere.

And I'm sending you a huge hug, so hold on to your stuffing!

Oh Mary..a big hug back to you, thanks for mine. I do suffer from anxiety and depression but have that currently under control. I am just frustrated with this skin thing. I want answers and want them yesterday....I am too impatient, esp with myself and things that affect me. It has calmed down some, so that there is no pain and a lot less itching. It is a small step, but a step.

Good thoughts for you and your health, hugs too. Thank you for your good wishes.

[Violet2Dawn]

I second the no antibacterial soap. It's just making resistant germs.... I stopped using it myself and have been sick LESS!

Here's a long shot....Have you tried listerine on the sores/your head? It's what I use on the dog for her hot spots and rashes and such. It'll sting like heck but it goes away fast, I use it when I get cut too. Has to be the brown formula, the blue and green have sugar in them. Can use generic, as long as its brown . She has very sensitive skin and rips herself to bleeding shreds after lying in the grass, listerine and a tshirt do wonders. (tshirt so she cant scratch her belly)..... Can' hurt!

Hope you figure it out soon

Sue... that is the most interesting suggestion I have had since someone suggested Vicks for cracked heals. I have not tried it, but am considering getting a small bottle to give it a try. In some strange way I can see how it will clean and help heal. If it gives your dog allergy relief, then it may well be worth a try. Thanks for your good thoughts and suggestion.

[Violet2Dawn]

What about what's in the shampoo and conditioner? I'm sure you know about this already, but I was reading about people who don't shampoo their hair any longer - all they do is wash it with regular water. There are shampoos that are supposed to be all natural, no perfumes or soap or anything in them. I just recently tried something that has no sulfates in it. I don't really notice any difference in my hair, but I have noticed that my scalp doesn't start itching like the dickens anymore just two days after I shampoo (and I used to be able to go a week between shampooings.).

And I just have to ask, did the doctor recommend an antibacterial soap for you? Because somehow I can't believe that would do any good. I could be way wrong, of course.

Here's hoping everything turns out OK, though. That has to be a nightmare to live through.

Oh Sable, I do know what is in my shampoo, I don't use conditioner, and I know what is in my soap. I have to read labels because petroleum causes me to itch, caffeine gives me heart palpitations, as does aspirin. I cant have any nuts or strawberries or pineapple any more. Nothing with any possibility of Latex, and no Adhesives of any sort. So yeah I read and research. I go allergy free, scent free, dye free etc as much as possible.

I am still on the fence about anti bacterial soap. Since so many lotion types of things make me itch, I hesitate to change right now.

This new homeopathic stuff is free of all chemicals, alcohol, dye and scent, and is vegan safe, how about that. Here is the list: Allantoin, Bacillus Ferment, Ceramide 3, Emu Oil, Euphorbia Cerifera (Candelilla) Wax, Glyceryl Behenate, Hydrogenated Castor Oil, Lysine HCI, Melaleuca Alternifolia (Tea Tree) Leaf Oil, Olea Europaea Fruit Oil, Phytosphingosine, Silver Citrate, Squalane, Tocopheryl Acetate, Tribehenin, Vegetable Oil.

Thanks for your concern and positive thoughts. I appreciate all of you so much.

[rackey]

I am so sorry you have to experience this Dawn, but I am confident things will get better for you, as you seem determined to find a solution. You may have already done an Internet search on your specific medical problems, but if so, keep searching for sites where other patients post their experiences. Connecting with other people who also lived with your condition may be more helpful than any medical information out there. If you find something interesting, print it out and show it to your doctor.

In the meantime, I am sending you prayers and positive thoughts. Don't give up, and don't settle for less, as you deserve to live a high quality life.

[Sable]

Warning: There is Tea Tree Oil in the homeopathic concoction. MANY people get an allergic reaction to it. It's like poison ivy to some/me. It's from the Melaleuca tree which grows wild in Florida. Just touching the bark can be a problem. If you get a reaction to this stuff, it's the Tea Tree Oil.

[Sable]

Did you get a chance to check out the Facebook Support Group?

I believe rodentraiser brought up the soap issue, not me, Sable.