Re: Tina......RE: High pain days

[Guest guest]

Eucerin is great stuff. I actually have an extra jar of it, it can be expensive; so if you'd like, I could mail it to you, Jackie. Aquaphor is the name of the product you're thinking of that Steve uses. Yes, it is quite thick, but very effective.

I hope and pray your pain settles down, Jackie. Love to you my friend,

as always, Kate

To: MSersLife Sent: Monday, August 8, 2011 7:15 PMSubject: Tina......RE: High pain days

Hi Tina,…..i don’t think I’ve tried Eucerin, but I think I’ll have Steve pick some up. He got some ointment for his eczema called Aqua something,, and it works pretty good too. It’s rather thick and you have to rub it in quite a bit. We were using Vaseline Intensive Care but it didn’t permeate the driest parts. The name of the condition my Dr. said I have is:

Ichthyosis (plural ichthyoses) is a heterogeneous family of at least 28,[1] generalized, mostly genetic skin disorders. All types of ichthyosis have dry, thickened, scaly or flaky skin.[1] In many types there is cracked skin,[2] which is said to resemble the scales on a fish; the word ichthyosis comes from the Ancient Greek ιχθÏÏ‚ (ichthys), meaning "fish."[3] The severity of symptoms can vary enormously, from the mildest types such as ichthyosis vulgaris which may be mistaken for normal dry skin up to

life-threatening conditions such as harlequin type ichthyosis. The most common type of ichthyosis is ichthyosis vulgaris, accounting for more than 95% of cases.[

I am assuming I have the less threatening type, but I am still going to see a dermatologist because I have other skin stuff going on, and I need a second opinion anyhow, and skin check.

I’m not sure what is going on when I am laying on my back and the front of my legs are in so much pain. I take muscle relaxers, but not very high doses, and I really don’t want to take higher doses, otherwise I’d be sleeping all the time.

Thank you for caring, Hugs, Jackie

p/s I’m feeling a little better today.

From: MSersLife [mailto:MSersLife ] On Behalf Of Tina SchmidtSent: Sunday, August 07, 2011 9:55 AMTo: MSersLife Subject: Re: High pain days

Jacki, I'm sooo sorry you are going through this. One question - for the dry skin, have you tried Eucerin? It's really, well, it penetrates really well. My husband used it for his psoriasis when it's at its worst. They also have a calming wash to use in the shower.I agree that a human wash totally sounds like fun. And it would probably be a great way to cool down in the summer months. I'm guessing that when you lie on your back the reason your front hurts is the muscles tightening?As far as sleeping at you desk, I would take the sleep any way I could get it! When my skin pain acts up real bad, I can't sit on the living room furniture - so I spend my time sitting in my desk chair, as it doesn't have upholstery - it's a vinyl chair.I hope you start to feel better, and soon!Tina

Hi friends,…I have been having so much pain all thru-out my body for some time now. Since I have several illnesses its hard to know which one its coming from. I think it might be mostly from the RSD, because I have quite a bit of swelling and skin pain in my right leg/foot and that is typical for some types of RSD. [reflex sympathetic dystrophy]. My left leg and thigh use to be my good side but the thigh muscle [quadriceps] seems to be weakening and the more I use it the more painful and weak it gets. This is a new symptom for me. I noticed it a few weeks ago how hard it was to walk back from the fridge to my desk and make it into my chair. I hang onto a walker so I have some support. But man it was really painful. I also have a disease that develops painful lumps under my skin and connective tissue and I am wondering if they are growing deeper to affect the

muscles. That happens as well as they can wrap around nerves too. See what I mean about not knowing what’s what? The Dr’s don’t know either which illness is causing which symptoms. If it can be tested then they would know. This is just so frustrating to me. I can be lying in bed and the pain in both legs all the way from my feet to my thighs/pelvic area is aching so bad I can’t sleep. I’ve now been sleeping during the day at my desk, so that makes 2 naps now. You would think laying down would relieve the pain, but it seems to be worse then. And not the parts that I’m lying on. I can only lay on my back now, and it’s the front of my body that hurts the worse. Go figure.

Our weather has been very high humidity and low pressure, and not very warm but the humidity bothers me quite a bit. Tonight I can smell the swamp like smell from the lake and expect “Yoda†to walk thru my door any minute…..lol…inject a little humor here! J [Yoda is the little green creature from the movie Star Wars for those not familiar with him, and he came from a swamp]

One thing that I was wondering, do any of you have any skin involvement that creates extremely dry skin? My dr. said it was Icthymotosis [sp], or something like that. It’s only in areas that are the most painful, and all the moisturizing doesn’t seem to penetrate.

So I guess that’s my update. I just don’t know what I will do if I lose my ability to walk altogether. Steve can take an early retirement, but the SS would be peanuts. L the pains in my legs are so bad I can’t even get into the shower we had modified with grab bars, to take a shower. A bath tub is out of the question. Too bad they don’t make people washes like car washes! Wouldn’t that be FUN! Lol..

Love and hugs to all, Jackie