RSS/TSW Symptoms

THIS IS NOT A MEDICAL ADVICE SECTION. PLEASE DO YOUR OWN RESEARCH. I AM NOT A DOCTOR.

My commentary on Red Skin Syndrome (RSS)/Topical Steroid Withdrawal (TSW) symptoms, things I’ve been doing to cope and general definitions based on my experience. I will keep adding to it as time goes on.

What items I require to get through my days?

  • Cotton, thin, soft textured, baggy clothes – I mainly wear pajamas all day long.
  • Gauze. I have tried several kinds of gauze. My favorite is the Invacare Soff Conforming Roll. It’s actually made of Rayon/Polyester which, usually makes my skin crawl. But even cotton/polyester blends of clothes sometimes feel better then plain cotton. So I recommend this stuff. This is important to prevent you from scratching open your skin. It’s also important as it protects you from coming into contact with things that cause infection.We order the 4″ x 75″ size in bulk online, its way too expensive if you buy it in the store. It doesn’t require tape if you wrap properly. (For example, when I wrap my hands and arm. I work from the hand towards the shoulder.) You can tuck the end under the edge of the dressing.
  • Cotton sheets with a silk texture to them.
  • Cotton pillow cases, not just for the pillow. I wrap them around my neck and sometimes straight jacket myself into them by placing my hands in the pillowcase and then putting a long sleeved shirt over them to hold them in place. I usually go to sleep this way so I don’t pull them off at night and scratch myself silly.
  • Cotton gloves, preferable ones that will go up to the middle of your forearm. Have someone make some for you. They should be of a soft cotton chemical-free fabric.
  • A Hepa filter, if you have crazy allergies, since you will be inside all the time.
  • Chlorine filter for your shower. I use the shower head to fill up my bathtub.
  • Room Darkening curtains and shades. This way you can sleep to your hearts content.
  • Epsom Salt for Baths.
  • Apple Cider Vinegar for Baths.
  • Sometimes I mix Epsom Salt and Apple Cider Vinegar for my bath.
  • Tea Tree oil for random weird looking spots to prevent infection.
  • Bandaids and Non-Steroidal Antiseptic ointment for when you over zealously scratch.
  • Ear Plugs to reduce noises while sleeping or if you head hurts and you can’t handle too much sound.
  • “Free and Clear” shampoo and conditioner. I actually use the shampoo as my  hair care, body wash and hand washing soap.
  • Latex free gloves to keep with you when traveling out doors. Or for using to clean the house or do dishes, etc.
  • Rubbing Alcohol to clean off sinks, garbage bins and counter tops.
  • Peroxide to clean wounds that you accidentally cause by scratching.
  • Loofah or Dry Skin Brush. When “the flake” hits I usually dry brush first thing in the morning before bathing. I end up with a pile of skin that looks like sawdust. (It’s quite amazing.)
  • Planet Laundry Detergent. It’s dye and fragrance free.
  • We mix white vinegar and water for general household cleaning of fixtures, countertops, floors and mirrors. I even poor a little white vinegar into water when cleaning my fruits and veg before eating.
  • We also use Borax for the toilet. Or I just use good old baking soda.
  • Dr. Bronners or a Castille Soap dilution in a spray bottle for bathroom and tub cleaning.
  • Invest in a bathtub scrub brush with a long handle so you don’t have to reach. You’ll be taking a lot of baths, you’ll need this to clean the tub regularly.
  • A vacuum that has the hose attachments. You will need to vacuum your bed and furniture as you will find enough flakes of yourself everywhere to build an army for the next clone war. Vacuuming will reduce dust mites and keep bacteria from laying around.
  • It would be best if you stayed in areas without carpeting.
  • You may consider draping sheets over areas you will be sitting on the most so that you can just wash the sheets and reduce skin flakes and prevent stains from all the oil and petroleum jelly you slather yourself with. (I plan on burning all the things I wear during my RSS after this is all over, including sheets, towels, pillow cases, etc. Why have things around to remember this by.)

Ointments

I keep graduating to new types of skin care.

  • First I was using straight up Petroleum Jelly. This was disturbing to me because I’m a holistic esthetician and this is anything but. However, my skin was so raw the first 30 days off that I needed something to protect my skin from oxygen even whispering on it.
  • After a while I felt like a blob, so I graduated to Aquaphor. It’s got a few extra ingredients in it and seemed to be thinner.
  • Then I moved on to Albolene. It’s way thinner and getting closer to the texture of a natural oil.
  • Finally, I left the dark side of synthetic goo and switched over to the “force”, of nature. I began with Lily of the Desert brand of Aloe Vera and mixed it with Organic Cold Pressed Almond oil.
  • That became too thick so I switched to Organic Jojoba oil, as it is much thinner and closer to our natural sebum (oil) production from our skin.
  • Something was missing so eventually I added “Bee Magic” by Medicine Mamma.
  • After a few weeks I had to eliminate the Jojoba oil and just stick with Bee Magic mixed with the Aloe.
  • Which brings me up to the present. I’m back to mixing Aloe Vera and Organic Cold Pressed Almond oil (no Jojoba). Sometimes I put Bee Magic on by itself during the day when feeling dry. I will use Sequoia Beauty’s Ant-Inflammatory Serum on my hands before gauzing, as well. But this just became possible over the last 7 days (today is Oct 9th).

I do take supplements. My family physician prescribed that I try “Barney’s Formula”. It’s not actually a pill, this guy named Barney had Psoraisis and cured himself by taking all of the following in any order with any meal:

  • 1000iu of vitamin D3 also called cholecalciferol can go up to 2000iu in winter (softgels preferred with no vitamin A in them)
  • one small multivitamin (one a day type)
  • one ibuprofen 200mg(advil or motrin)
  • one vitamin B12 25-100 mcg especially if over 60
  • one 400mcg folic acid (on the days you get sun)
  • one 100mcg selenium
  • 3-6 fish oil 1000mg ..you might want to increase it depending on size and severity and reduce dosage to 3 or less if you get anxious, hyper or manic feelings
  • 2 flax oil 1000mg

I do take a variation of this. I tried to take Curcumin (Tumeric) instead of the Advil but I seem to be allergic to Tumeric in pill form. So I try to put it in all my soups and stews. I am vegetarian so I don’t take the fish oil, I’ve been using Borage Oil. I also put raw organic cold pressed Olive Oil directly onto my food.

  • In addition I take Probiotics daily.

I work with a homeopathic practitioner to alternate different herbs, homeopathics, flower essences and the like. I don’t recommend you do this on your own. You should seek personal care from professional assistance.

I will also get Manual Lymphatic Drainage from a licensed Dr. Vodder Therapist when I feel like Violet Beauregarde after eating the Wonka Gum. It helps reduce swelling and relieves pressure and pain.

 

What is a flare to me?

My first 2 months of  flares followed this exact pattern to a T. However the last 2 months have kinda been variations of the following at much less intense degrees. (Today is Oct. 9,2012.)
Day 1 –
Absolutely incapacitated from swollen skin and lymph nodes, burning, stabbing pains, itching and heat generating from my body. It becomes almost impossible for me to bend certain joints or turn my head in certain directions due to the swelling. This is the day I usually cry.
All “flared” areas are almost exploding with edema that pour with sweat and/or ooze a clear yellowish fluid. If I have skin fissures due to the previous “flake” the fissures feel raw and itchy. It isn’t unusual for them to open more and bleed due to the edema.
I usually coat myself in some  type of skin therapy, wrap myself in gauze, put pillow cases over my arms then pull them through a soft long sleeve shirt. If no pillow cases then I put gloves on.  All the areas of the body that have not turned purple/red are a normal color but a little dull and gray looking.
My skin may be exuding heat but my internal body is literally freezing. I usually lay in bed under a lot of covers with ice packs around the most effected areas and take Attarax (Hydroxyzine) to knock myself out. My appetite is pretty much nonexistent, all I really crave is either a baked sweet potato or some steamed peas, corn and carrots. I usually drink a bunch of water too.
Day 2-3
Same as above, but at some point I’m able to roll out of bed, take an epsom salt bath then rinse off in a shower, coat myself in some skin therapy, regauze, slide into my cotton layers and then lay on the couch and vegetate in front of the TV while icing myself.
Day 4-7
The oozing eases up and I begin to be able to think more clearly. I’m still gauzing, watching tv and my freezing appendages are a lighter color red.
Day 8-14
I start to regain my appetite. I can kinda joke around and converse while laying motionless on the couch. The redness begins to lighten and get blotchy, the burning pain feeling gets replaced with an intense itching and pretty much every movement I make or any slight change in my emotional/physical/mental state can create itching.
Day 15-21
And so begins “THE FLAKE”. All the dead skin starts to flake off and the red has gone down to a nearly normal color with a pinkish orange undertone. Usually the itching of the previous week merges into this one. I try to stay all gauzed up so as to protect myself from scratching. The edema starts to go down. My aunt has a huge Jacuzzi bathtub with jets. If I use it for a few days it reduces the edema more quickly. The first week I used it, I literally weighed 1 pound less after each bath.
It’s after day 21 where we aren’t sure how much better I will get or how much time will go by before the next flare.
  1. In the month of May I was off of steroids, never flared but filled up slowly with fluid.
  2. My first flare started around June 11/12 and ended around July 3rd.
  3. Second flare started July 15/16 and I hit day 1 of “the flake” around August 2nd.
  4. August and September I micro-flared everyday, all month long
  5. Current flare started October 4th.
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