I started taking Bio-frequency treatments about 2 months ago.  I'm not sure I believe in these things, but have to try something.  Traditional medicine is not helping my skin at all.

 So far, the treatments have not helped, but I am giving it a fair chance.  I'll post my results on here - good or bad.

The gluten-free diet has helped my digestive system tremendously!  I am hoping after my stomach problems have all disappeared, my skin will start to heal.  I've read that people with Excema and Psoriasis improve on that diet.  Maybe it will help Erythroderma too.

I thought it might be good to tell exactly what it is like to have Erythroderma.  Like I always say, I am an optimistic person.  I expect to get well.  This is not intended as a diary of "poor pitiful me," but I want to present the facts as they are.  So maybe it doesn't sound so optimistic, but it is realistic.  I don't want to gloss over the truth here, but will tell it as it really is.

You've heard of the 7-year-itch?  I've got it.  For 7 years I have suffered with this painful and itchy skin.  The 7 years before that, I was troubled with it off and on, gradually increasing in intensity with time.

This autoimmune disease can be fatal if unchecked.  There have been days I knew I would die if they didn't do something to help me.  It causes my skin to be red and burned over 90% of my body.  On a good day, my skin is a medium pink and I can function, in spite of fatigue and muscle pains.  On bad days My skin is full-blown red, with chills and fever.  On those days I am in bed, very ill.  I've even had to be hospitalized to receive intraveinous steroids. 

Following is my typical day.

When I wake, I take 2,000 mg of Cellcept, an anti-rejection drug that is supposed to help my body quit fighting itself.  I don't think it is helping too much.  Before that, I was on Methotrexate, a chemotherapy drug.  (I had to quit it because it affected my liver.)   After taking the Cellcept pills, I must wait 45 minutes to 1 hour before eating, to give the drug time to do it's job.

During that waiting hour, I shower.  First, I lather my hair, then wash my body while the medicated shampoo remains on my scalp for 5 minutes.  On a bad day, even the shower sprinkles hitting my skin is painful.  Wherever there are skin folds, such as underarms, groin, etc.  is extremely painful because the skin is broken, leaving raw lesions.  But it must be cleansed, so I shed a few tears and do what must be done.   I have lesions, even on my so called "good" days.  Then I pat my skin with a towel to partially dry it. 

Next, I apply medication to the lesions, and either a lubricating ointment or a steroid to the rest of the skin.  Getting dressed is a chore, because my clothing sticks to the ointments.  It is yukky to feel so gummy.  But it soaks in and becomes more comfortable as the day goes by.

I dress in loose knit pants and t-shirts.  100% cotton doesn't seem to irritate my skin, although seams sometimes rub, causing sore spots.  Bras and underpants are not an option.   I am too tender to tolerate the elastic. 

It takes about an hour to get ready for the day.  Finally, I can have breakfast!  Along with breakfast, I take Magnesium and potassium tablets to offset the dehydration of my red skin.  Without those tablets, I have severe leg, arm, and body muscle cramps.

On my "good" days (and nowadays I have more of them than the really bad ones) I do whatever I please until my strength gives out.  then I rest.

I like to walk on the woods path right by my home in the morning.  It is usually cool and shady.

My skin is sensitive to the sun, so when I go out, I apply make-up to cover my red face.  I must wear sun protective clothing, pants, long sleeve shirt, sun gloves, wide-brim hat, and sunglasses.  My skin won't tolerate sun screen.  On a really bright day, I also carry a sun protective umbrella.  Needless to say, this outfit gets really hot.  Heat also causes my skin to flare, so when temperatures are above 80, I don't go out much.

Two hours shopping under fluorescent lighting is equal to one hour in the sun for me.  Hallogen lights also give off UV rays and cause skin damage.  So to shop, I cover up in my sun-protective clothes.

If I stay home, I work on the computer (researching this disease).  My computer has a UV protective screen attached, because I am also sensitive to computer screen rays. 

If I have the energy, I try to walk again after dinner.  I truly believe nutrition and exercise is my only hope of getting well, so I do both faithfully.

At night, I apply all the medications, ointments, and/or steroids again, put on my t-shirt nightgown, and go to bed.  But that is not the end of my 24 hours.  The rough part is just beginning! 

I sleep a couple of hours, then awake with horrendous itching.  It is way beyond the poison ivy, chigger, or tick bite itch.  The itch goes deep into my body, causing me to feel crawly all over.  I can't describe the intensity.  I guess it would be like having a severe sunburn, then having a hundred tick bites all over your body.  You'd need to scratch, but it would hurt if you did.

I apply cooling lotions and pace the floor until it settles enough for me to sit down.  Then I play Solitaire and Freecell on my PDA to divert my mind from the misery until I feel sleepy.  This might be as soon as 2 hours or it might be daylight before I can settle down to sleep again.  Many nights, I take a pill so I can get a good night's sleep.  Usually it works, but not always.

Then it begins all over again.  In the past, this has been very depressing, however, I've learned to live with it.  I accept that this is my life now, but I don't accept that it will always be.  I'm constantly researching and learning.  I have to help myself, because the doctors aren't helping me.

I've had 6 doctors for this condition.  They say it might be caused by an allergy, but that it is too complicated to find out.  It could also be caused by an undiagnosed cancer somewhere in my body, or I could have T-cell Lymphoma or Lupus.  It takes years for a clear diagnosis on either of these diseases.  Meanwhile, the doctors say they'll just treat the symptoms.   That frustrates me!  They can't do allergy testing because my skin is already so red, it would be impossible to read the results. 

This has been particularly hard to deal with - not knowing.  In the past year, I've settled into living in the moment, enjoying all that is good in my life, and not worrying over the future.  I take it as it comes. 

OK.  No more complaining.  Back to Google and my search.  Currently, my search is about nutrition and I'm going gluten-free.  So far, it has helped my digestive problems.   

I will find my own answer.  I refuse to live like this the rest of my life.  I WILL GET WELL.  Stay tuned.  I'll be reporting it on this forum - what I find, what works, and what doesn't.   I sincerely hope my story will help someone else who is suffering with this disease. 

I've been on the anti-inflammatory, gluten-free, and common allergens-free diet over 2 weeks now and believe it is helping.  I learned that Step one in getting well from my autoimmunedisease is to get my digestive problems taken care of.   That is where the diet comes in.  Already the symptoms are improved.  I'm not 100% yet, but well on my way!  The stomach and intestinal pain and other problems are simply going away! 

I have had energy in these past 4 days!  It's great.  I went hiking Saturday and Sunday.  Today I worked in my yard for 2 hours.  I've not had the energy to do those things for many years.

This diet is making a difference.  Even my skin is a more pink than red today.  Itching is still awful, but I'm expecting it to all clear up with time.

FACTS:  Below are the symptoms of having a wheat intolerance.  I had all but 3 of them.  Now, after being on the diet, most of them have cleared up.  The remaining ones are much improved.  I expect within another 2 weeks to be better still.

• Weight loss or weight gain
• Nutritional deficiencies due to malabsorbtion e.g. low iron levels
• Gastro-intestinal problems (bloating, pain, gas, constipation, diarrhea)
• Fat in the stools (due to poor digestion)
• Aching joints
• Depression
• Eczema
• Head aches
• Exhaustion
• Irritability and behavioural changes
• Infertility, irregular menstrual cycle and miscarriage
• Cramps, tingling and numbness
• Slow infant and child growth
• Decline in dental health

Anyone with these symptoms and an autoimmune disease should check out this diet.

From my research, many people with an autoimmune disease also have digestive problems.  The medical sites make it sound like stomach trouble is a result of the autoimmune disease.  I wonder- if it isn't the other way around?  Maybe autoimmune diseases are the result of digestive problems.  I've had stomach problems all my life, even as a small child.  This was long before I had an autoimmune disease.

 I truly believe if I fix the digestive disorders, the Arythroderma will begin to clear on it's own.  I'm testing it out with the diet.  I've been on it 2 weeks and made some mistakes and had some setbacks, however, overall, my digestive problems are improved.  Not gone yet, but much better!

That's my theory and I will post my results on here - good or bad. 

I have Erythroderma.  I expect to get well, and I continue to research.  The answer is out there - and I plan to find it! 

In this diary, I'm attempting to give an honest view of what this disease does to a person.  No matter how positive an attitude I have, facts are facts.  This is how it is - no glossing over the truth.

Erythroderma has proven to be a long, hard road - 14 years!  I've learned a lot in that time and I continue to search for answers.  This picture shows one of my painful flares. 

For this entry, I want to document a complete history of my disease.  then future entries will be current progress and information found through my research.

From 1993 through 1996, I had occasional sun sensitivity (rash) only on exposed areas.   I blamed this on a medication I was taking that warned to avoid excessive sun exposure.  Each time, it cleared within a few days, so I didn't worry about it.  With time, parts of my body would become red more frequently even though I  carefully avoided the sun. 

In 1997 through 1999, it worsened significantly, in that my skin would flare more often, and it covered a larger part of my body.  First the arms and neck would be red (burned) where I was exposed, but within a few hours, it would spread to my chest and upper legs.  Each episode would last from a week to 10 days.  As time passed, this happened more often, even without sun exposure.  My skin was painful, then as it healed, was terribly itchy.

I researched "sun allergy."   The description fit and I learned that not only the sun, but also fluorescent lights and my computer screen caused a flare.  I purchased sun protective clothing (hats, gloves, pants, & shirts).  Even with those, I still could only take around 20 minutes of sun while wearing this clothing.  I could do 40 minutes at the computer or at Wal-Mart, under the lights (both while wearing the sun protective clothing).  Sunscreen made my skin even sorer.  I also bought a UV-ray blocking screen for my computer.

Each Dermatologist gave a different diagnosis.  I saw 6 doctors in all.  I had all kinds of treatments, pills, lotions, ointments, steroids, shots, but none of them worked.  I steadily grew worse.

By 2000, my skin was red over 70% of my body most of the time.  It cleared for 2-3 weeks now and then, but always returned.  My bright red skin was hot to the touch, painful, and itchy.  My muscles and joints ached.  The red skin became raw and swollen.  Low fever and chills had me unable to function.  My palms and soles thickened and became slick, causing me to fall down the stairs while barefoot.  It took 3 spills down 15 steps before I figured out this new development in my disease.  Now I always wear slippers or shoes.

Red skin covers at least 90% of my body.  Since the year 2004, I have not  seen my normal white skin, although it does improve enough that the other symptoms go away.    Between severe flares, I am left with excessively dry itchy skin that is a softer color of red.  Those are my "good days," and I can function.  It is a joy to clean house or go somewhere.  Nights are not so good because of intense itching.  It is so severe, it is almost like pain.

I recently found there is a link between the digestive system and autoimmune diseases.  I have had that problem all my life - maybe wheat intolerance?  I am starting on a gluten-free diet to see if it helps my stomach.  Wouldn't it be wonderful if it also helped the Arythroderma!

I won't go into what it is like to feel hope, then have it dashed by the next flare.  Those of you who have this disease know what I am talking about.  I've worked hard to keep a good attitude during the "bad days," and I've learned to cherish the "good days."  I do what I have to do and thank God for all that is good in my life.

As time permits, I will post things that I have found helpful in making my skin more comfortable.  If my dietary changes help, I'll share the info with all.  I'd be delighted to help anyone who is fighting this disease.