The past couple weeks I've noticed an increased amount of TSW activity. I think I may possibly be heading towards major flare número tres. I'm really hoping I'm wrong and it's just a minor flare. Only time will tell. If it must be a major, I just pray to dear God it's not as bad as flare two. I don't ever want to have to go through such torment again. It took so much out of me.
Current condition:
- Rough, bumpy skin texture
- Dry, flaking
- Increase in redness
- Weeping upon scratching*
- Minor swelling in legs*
- Still intensely itchy always
- Still no energy
- Still sleeping horribly
- Still losing hair
*signs that make me believe I'm heading towards a big flare (⌣_⌣”).
Here are some photos from Monday night. The last one is from today.
Hi Chantal,
ReplyDeleteYour skin looks very similar to mine, I'm at 4 and half months. Do you have those tiny pus filled blisters anywhere like on your fingers or hands? Have you read the recent article and posts on the Skin of Rose blog? I have to wonder if moisturizing hasn't prolonged your condition. Do you do dead sea salt baths, and apply alcohol free witch hazel to the weepy areas? I would love to help you via sharing my own experiences and knowledge, but don't know enough about what you are currently doing to treat yourself for the various symptoms you describe. I've experienced all the same symptoms myself and can relate. The blog and posts I referred to might be of some help. Dead sea salt baths and sun have been the biggest weapons in my arsenal, with MW being the #1 big gun. I have learned some other things that help most of the various symptoms of TSW. Feel free to pick my brain anytime. xox
Dan, thanks so much for commenting and the useful info. I've been trying to reduce my moisturizing habits lately but I haven't yet been able to bring myself to stop them completely. I guess it's another addiction I have to battle. I've stopped moisturizing with Aveeno a couple weeks ago with the exception of my hands. This is the hardest area to quit as I wash my hands a lot. I use palm shortening on the rest of my body but only after showering. I only shower once every few days as showering really amps up the itch intensity for me. The rest of the time I use witch hazel after having itch frenzies (usually about 3 times a day). I don't do anything else. I get the blisters on my palms, fingers, and bottoms of my feet. They come and go every few days and have been doing so for months. I don't really get them anywhere else on a regular basis. Occasionally I get a few tiny ones of my cheeks. I also get tiny bumps on my stomach near my belly button but they're not filled with any liquid.
DeleteMy skin seems to be doing better today so hopefully it was just a minor setback. I really don't want to flare again. I'm going to try to do MW. I'm just worried I won't be able to stand it.
Do you take any vitamins/supplements or have a certain diet? I know most people on the forums say there's no correlation but I really think I need to change my diet to better gear my body for healing.
Hi Chantal, check out these two sites on Aveeno. I would bet my bottom dollar this stuff has prolonged your withdrawal period significantly, even though I have no way to prove it. In my opinion Aveeno is probably one of the worst products to put on the skin. I could list hundreds of sites on this but here are just a couple examples I found with a quick search. Please see...
Deletehttp://www.thesmartmama.com/june-junk-claim-2-aveeno-not-so-natural/
http://cincovidas.com/dimethicone-the-truth-behind-this-common-cosmetics-ingredient/
http://cincovidas.com/aveenos-active-naturals-may-not-be-as-natural-as-you-think/
In the initial stages of my tsw I was using a product my dermatologist had given me called Vaniply, or Vanicream, and I noticed my skin was only getting worse. I could tell it was something in the moisturizer. So, I checked the ingredients and found that Dimethicone was the culprit, not to mention a couple other ingredients that are known skin irritants. So, after trying several natural moisturizers, which all just made me itch more, and seemed to keep my skin condition the same, I found a Calendula salve that worked wonders on healing skin breaks. However, after about 4 weeks I could tell it was no longer effective. I knew it was something in the ingredients so researched the ingredients. They were Calendula in an olive oil base, beeswax, tea tree oil, and grape seed extract.
I found my answer when I found two different studies, one done at a university in the U.S., and one done in the UK. Both studies showed olive oil destroys the skin barrier within just a few weeks. I was quite shocked to learn that but it made sense to me as to what I was experiencing. I concluded the salve worked well in the beginning due to the strong healing effects Calandula has on the skin, but after a few weeks the olive oil had overtaken the positive effects of the Calendula.
However, it wasn't just the ingredients, it was also the fact that I was covering my skin 24/7 and not allowing it to breathe, thereby inhibiting the ability of my skin to heal. Anyway, after some serious thought I decided at that time if my broken skin was to heal over I needed to stop all moisturizing and allow it to dry and scab over. My main concern at the time was getting those skin splits and deep fissures to heal so I didn't get an infection. Not to mention the intense pain they caused me. I literally had reached the point where I was in so much pain for so long, and was so desperate for relief, that I was willing to endure even more pain to see if I could heal with my new theory.
After successfully stopping the moisturizers my symptoms improved markedly and quickly. The overall pain levels and itching subsided substantially. It has been that way since, despite setbacks with a flare or two, which have only happened twice now when I try to apply Dr. Fukaya's skin lotion. Apparently, my skin is still too sensitive to even use that, I believe because it has a small amount of preservatives in it which is what irritates sensitive skin. I believe in the product but need to wait a little longer before I can use it. It doesn't bother less sensitive areas on my skin. I used it early on in tsw daily on all my worst areas, but was in such a bad way I didn't know it was contributing to my pain. In retrospect, It may have helped my skin barrier though. Hard telling.
TSW since MW has been so much easier for me to handle even though I still have occasional intense itching at times. I have noticed my skin is getting stronger every week because when I scratch it upon awakening at night, it holds together better and doesn't turn into a bloody weepy mess like it would in previous weeks.
I couldn't fit what I had written in just one post so here is part 2. Sorry, I really didn't mean to write a book!
DeleteAs most evidence is now showing, any all all moisturizing will delay healing. But, if one must moisturize for whatever reason, they probably ought to use a natural product that doesn't destroy the skin barrier, since we are trying to heal an already destroyed skin barrier. It' been my experience that Calendula is one of the best things out there if you can find it without other ingredients that are harmful, which by the way is nearly impossible. However, one can make their own salve. Someone on a forum had mentioned they were going to do just that. Next to Calendula, I have found the organic Spectrum White Palm oil bothered my skin the least. But, I only used it for one day and went back to MW later that same day because my skin feels better and less itchy when dry.
I also had a couple those tiny blisters pop up within hours of using it.
I have noticed a direct correlation between what I eat and how bad my itching is. If I avoid high histamine content foods I have less intense itching, and vice-versa. My diet consists of organic foods only but I eat lots of sugar, drink coffee, and eat foods high in histamine like fermented foods such as cheeses for example. I pay for it with more itching but it's a personal decision on what one is willing to sacrifice in the trade off. A happy mind has much more healing power then any diet does.
I used to be a hand washing freak, but after stopping TS and learning that frequent hand washing alone strips the natural oils out of the skin, I avoid washing my hands as much as possible. I have a small skin break still on my right hand that heals and then breaks again, the place where I fist started applying TS on my hands, and as a result, the area with the thinnest skin due to it getting the most TS. So, it is taking the longest to heal. I wear white cotton gloves on this hand most times so it stays clean and I don't have to constantly subject it to water by washing my hands constantly. I haven't had to wear a glove on my left hand in weeks now, which has been a huge relief.
Part 3.
DeleteI had a lot of those tiny blisters early on and they finally went away when I stopped moisturizing, but have just recently popped up again. Why, I don't know because I am certain moisturizing during tsw makes them pop up on me. I was able to get them to heal a couple days ago and it only took about 2-3 days to do it. I sat in the sun and popped them with my fingers (clean hands), then did a dead sea salt bath with 1-1/2 to 2 pounds of natural dead sea salt from Israel. I did this daily and after 2-3 days they completely healed and disappeared. I do remember getting just an occasional one or two at a time after initially healing them the first time in my MW, and I would dip a Q-tip in a small bottle of pure tea tree oil and just touch the tip on each blister a few times per day. That seemed to help, but not sure if it was the tea tree oil or my baths, as I have been doing the salt baths most the way. Tea tree oil does have it's uses though. I have used it a lot in the past few months on skin breaks, to keep infection at bay, but always dilute it with clean bottled water by pouring some on the Q-tip after dipping it in the bottle, for use on larger areas than the size of say just a tiny blister.
I have more info on MW on my blog and will continue to add more info time permitting. See
http://topicalsteroidsurvivor.blogspot.com/
I am new to social networking and blogging so have a learning curve to get through before my blog gets set up correctly, but I do have it started, but still have much editing and adjusting to do.
If you are worried about doing MW right now out of fear of it causing a flare, you can always wait until you do flare and do it then. That is, if you do ever have another flare. I doubt I would have ever done it unless I was in so much pain to begin with. So, if I was in between flares, I probably would be afraid to do it. I hope I'm making sense here.
I eat what I want but do supplement my diet with low potency multi-vitamins, probiotics (due to my sugar addiction), 5000 IU Vitamin D3, flaxseed oil, and omega 3 fish oil daily, all of which are essential for the skin. A good diet, especially an alkaline based diet or a sugar and starch free diet, is very healthy regardless and can only help. But, as Dr. Fukaya pointed out, it really doesn't have much of an effect in speeding up the tsw process, as does MW. But, it must help to some degree. Common sense and logic about how the body functions dictates that it must. My conclusions are always dynamic in nature so am constantly adjusting as I learn. If I were you, I would moderate your diet, but eat what you want to be happy and enjoy life, support the body as much as possible without sacrificing happiness, and NOT moisturize at all until you are in your mid to late 60's. That is only my opinion and certainly not meant to be construed as medical advice since I am not an accredited doctor. I guess I feel a need to include a disclaimer every time I say anything out of fear of being sued by some gov. agency :(
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DeleteDan Dan,
DeleteThanks for taking the time to write all that out! I've finally worked my way to cutting out Aveeno completely and haven't used it on my hands since Saturday. So 4 days! I'm still using the palm shortening as before, after showers only... so even though I'm still moisturizing, it's at least all natural and only about every 3 days. I plan to cut out the palm shortening once its gone (I have about 1/6 of the tub left).
What you said about the olive oil is pretty interesting. I used to use it back in December-January and then again in July. July was when my skin was the worse and thus I decided to give the palm shortening a go because I really wasn't liking the olive oil then. Good thing I guess!
I've been thinking a lot about what SkinofRose posted on her blog about MW, and I'm a little confused what to think about MW being essential and only 10% of patients healing without it. It goes against what Dr. Rapaport has experienced and he's healed over 2000 patients and seems to really advocate moisturizing the skin. Very interesting.
I think the MW sense though in the long run. It just feels like the right step to take next. I am sad to think that it would cause rebounds in the future though! :( I would like to be able to use natural things such as shea butter and coconut oil to help prevent aging and keep my skin soft.
Thanks again for all the info! Very helpful! Sorry it took me a few days to reply... been a busy past few days. I subscribed to your blog and look forward to seeing what other information you may discover! :)