Being a Burden / More of the Same, Really

On Being a Complain-y Sick Person

I complain often. Well, I complain on this blog often. If you met me in real life, you’d be struck by how little I complain. When I do complain, it’s with a dash of silly sarcasm. I blog about my problems because I don’t want to burden my friends in real life. It is hard to tell who is really interested in hearing how you’re doing physically and who is just listening to be polite.

The only people I “burden” with complaints here are subscribers – people who willingly sign up for my posts- and thus sign up to read my writings. Many of my subscribers suffer in the same ways I suffer and its comforting to know we’re not alone. Especially because, when you have so many health problems, your friends and relatives tune you out so it is a frustratingly lonely situation.


 

Subdermal Eczema – More of the Same, Really

I’ve been following the dermatologist’s advice for five days now. You’d think I might be seeing an improvement, but not really. The skin on my stomach itches less intensely and is less red. The skin on my lower legs itches more intensely and is more red. Trading one area for another.

The film on my skin left by the myriad of products is not improving. I thought I’d try to give my skin a few days to adjust. Instead, the film is attracting lint from my clothing. I just don’t see how that is going to help reduce itching. Tomorrow, I’m using a wash cloth against doctor’s orders.

Desonide, the RX steroid ointment, is fairly useless. I should now be applying the ointment every other day and I honestly can’t tell a difference when I apply it and when I do not. The Elidel samples seemed to make some difference. I covered my stomach in Elidel ointment and it’s itching less. Covering myself in Vaseline nightly is no more effective than using the coconut oil blend I created. If anything the Vaseline is not helping because it adds to the slimy film on my skin.

I’ll either spontaneously heal, or suffer through the next 21 days until my dermatology follow up. There are not words to describe how tired I am of doctors, medications, and constant, unrelenting itching.

At least I’m not having much pain to speak of. That’s one good thing. I’m not sure I’d trade the constant itching for the pain, though. Both are equally frustrating in different ways. Although, I suppose pain is more mentally exhausting than itching.


 

Advertisements

10 thoughts on “Being a Burden / More of the Same, Really

    1. Have you considered other elements of your diet than what has been previously suggested in comments? There are many avenues by which eczema can be triggered, and for approximately 20% or more of eczema sufferers, diet is at least partly responsible.

      As a vegan, you may have a difficult time eliminating soy, but this was one of the first foods I was able to identify as a serious trigger. Corn, as well, shortly afterward. And, wheat followed almost two years later (with many, many others, in between).

      With respect to the topical steroid, failure to use it correctly can be as much of a problem as using it too much. A few months ago I wrote a “dissertation” on steroid use for my own blog, that you might find useful. Improper/under use of steroids can cause a worsening of eczema, just as over-use can have serious side effects.

      I know it’s frustrating, and extremely painful. But, you need to stay strong, attentive, and should try to at least stick with a prescribed treatment plan (and, correctly so) long enough to know, unequivocally, that it isn’t helping before you take yourself off the treatment.

      Since you mentioned Elidel being noticeably helpful, you might try to stick with that for a while. But, keep to the treatment on a timely schedule. Eczema doesn’t respond well to waiting for gaps in our daily schedule. It will rule us one way or the other, and I prefer to succumb to its influence by interrupting my daily schedule to pacify it, rather than suffer, physically, because I don’t have time for it.

      1. You might be surprised by how little soy I consume. I’ve tried a soy free diet for 30days but it made no difference. I haven’t tried eliminating corn and/or wheat yet. Typically, my skin problems are caused by environmental factors like detergents, fabric softeners, bug bites, or even washing my clothes in a different municipality’s water. I just can’t seem to be allergic to the normal stuff.

        The only deviation I’ve made from the treatment plan has been taking one warm-ish shower and using a wash cloth. The ointments and Vaseline left a sludge over my skin which was making the itching worse AND it started to stink. Disgusting, right? It smelt a bit like dirty hair, body odor, and medicine all combined.

        I’ve kept using the Desonide even though it hasn’t been helpful. I’m using it precisely as directed and at the directed intervals. It’s just not helping and seems to be making the problem worse.

        Elidel, on the other hand, is unaffordable under my current insurance plan. I’d need to choose between a weeks worth of groceries for my family and a tube of Elidel and that’s a choice I cannot make. I only have samples and I’ve been putting off using the samples until needed because of the expense. Per the dermatologist, I don’t need to use the Elidel samples at all if I choose not to. He gave them to me as an option to try. Elidel on one leg and desonide on the other for a night to compare.

  1. It seems like you have several factors complicating everything.

    On the food front, you might also try eliminating the nightshades (tomato, potato, eggplant, green & hot peppers, etc.) for a bit to see if that has any benefit. Just to cover the bases,–and, since I don’t know if you area already aware–soy is hidden in many strange places, these days. Anything with lecithin or vegetable oil is soy, unless otherwise specified, Many flavourings, things like xanthan gum, and other additives are also soy-based.

    If the desonide is not helping–or, even making things worse–you could be allergic to the carrier base ingreedients (unless it pure petrolatum), or even the steroid, itself. You might talk to your doctor about changing to something like triamcinolon ointment.

    It’s strange that your skin is not absoring the ointments. My skin is so dry that it sucks up everything within 1 or 2 hours–apart from what my clothing absorbs. If you apply the ointments ovefr wet skin, and keep wetting your skin as you apply them, they may spread a bit thinner and soak it better.

    I feel that a warm shower with a mild liquid soap like Cetaphil every few days is a must. Due to the prevalence of bacterial infection in eczematous skin, proper skin hygene is imperative. I don’t use soap every day, unless I’m exposed to the things that I must remove to avoid inflammation.

    On the Elidel front… due to the way you write, I’m going to assume you’re in the U.S. Valeant has patient assistance programs that may help you afford the Elidel. They may not be quite enough, but it’s worth certainly worth looking them up the web, or calling their customer service.

    Elidel should only be used short-term, but it’s not beneficial as a spot treatment. So, the expense will not be continuous.

    Are you on other meds for the concurrent conditions you have? Have you asked your doctor whether they could be contributing to the eczema?

    1. I don’t eat much processed food so I’m not consuming much in the way of soy-based additives. I cook my food for the week on Sunday and eat the occasional granola bar or snack from the natural food store. I do consume quite a bit of nightshades, however.

      Yes, the slimy film is puzzling. If my skin where that dry – eczema dry – shouldn’t it be soaking up all this nourishment?

      Then there is the rash which is very atypical of eczema and more typical of SLE or myositis. I have no rash on my hands or in areas where the skin bends. The rash is neither rough nor scaly, but itches so intensely it’s extremely disruptive. I break out in hive-like bumps in the itchy areas followed by splotchy redness and itching increases in severity. Then, after all this, the areas appear bruised like I’ve been punched regardless of scratching.

      I haven’t had a skin biopsy yet and the steroid treatment is just the first step. Honestly, I’m quite tired of feeling so miserable. I’ve followed the dermatologists recommendations to the letter and it hasn’t been of much help.

      I also patch tested desonide on a non-itchy area to determine if caused me to itch. No itching or redness occurred so, while I don’t seem to be allergic to desonide, it’s not helping. However, if I have an autoimmune skin disease, desonide probably isn’t going to help.

      1. Is your skin really that dry? Or, are you just applying the petroleum jelly as “standard protocol”?

        Part of the problem with eczema is that the inflammation can take more than one form, especially if there are complications due to allergy and/or bacterial colonisation or even infection. Eczema relies on a differential diagnosis that has to satisfy one of two mandatory criteria, and at least two (I believe) out of five major criteria, while at the same time satisfying several exclusionary criteria. Also, atopic and non-atopic eczema tend to behave differently.

        I would actually be surprised if a dermatologist has misdiagnosed eczema, but anything is really possible. Have you asked whether it could be something else?

        Do antihistamines like Benedryl help at all?

        I am currently investigating bacterial colonisation as a trigger factor for my eczema, and my discussion with an infectious diseases specialist, this morning, just has me seeing a new dermatologist associated with the hospital for evaluation and possible coordination on the colonisation front. Just more waiting, if you ask me. but, part of what you describe seems similar to how my skin feels and appears with infected eczema. So, that might be something to ask about, as well.

        Eczema is actually an autoimmune disease, but finding the right steroid to treat it can involve some experimentation. desonide simply may not be the right one for you, if you do actually have eczema. you might need to endure some more trials.

        On the scratching and bruising, I know what you mean. I have used triamcinolone for over 30 years, and I have needed heavy steroid use over the past four years. It has ruined my skin. If I scratch, I risk ripping holes in my now paper-thin skin, and even slight mechanical damage brings on black bruising. I used to be a martial artist, and I’d leave a training session with imprints of sticks on my arms. My eczema has gotten so intrusive that I have not been able to train in a few years.

      1. Ahh. Tramadol is well known for causing itching, especially at night.
        I wondered when i saw just where your eczema is. You see when i was taking tramadol i scratched the itches so much i would wake up covered in what looked like eczema on my belly and thighs so i bunged betnovate on. But it was just a result of me scratching the itchiness caused by the tramadol.
        Maybe? Could this be whats happening to you?

  2. It could be. Since I’ve been taking it for so long, I would think if I were going to itch, it should have started by now.

    I can try to wean myself off tramadol and see if that halts this misery. The only problem is that I have so much day-to-day pain that I need pain medication to function. And by function, I mean to do important things like make it to work each day, walk, and sleep. Pain is soooo stupid.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s