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Acey MorFiend
11-11-2008, 06:17 PM
Hello, im Acey, iv had lupus for six years. Its at its worse right now and really am desprate or any advice, anything that worked for anyone else. Esspecailly for healing skin on hands and feet, the burning is killing me. I would tell you about my hobbies but i have none anymore, i use to be a perfessional athlete but not so much. Please any help. Im at my witts end. :?

Oluwa
11-11-2008, 06:31 PM
Hi Acey....

Welcoming you with a big hug...

I am dealing with eczema, the trunk and it is out of control..

Are your hands, dry, chapped, eczema, atopic dermatitis, allergy?

Have you tried Neutrogena Norwegian Formula for Chapped Hands..works wonder to ease the dryness of my crud...also my Auntie uses it for her hands and she swears by it....

Some say after washing, while skin is still moist, within 3 minutes apply cream. They say lotion is too drying and doesn't retain moisture...

If you are more specific on your other symptoms that you are experiencing let us know so we can help, suggest with our remedies..

Or do a search with the tool above...using a keyword....

I know what you mean by hobbies, not having them...we have to reinvent ourselves. Having the disease can help us to look elsewhere, where we never looked before our disease to find things, hobbies to do..

Oh, I use to live in Seattle, will return home soon, hopefully within two years.

Hugs,
Oluwa

Acey MorFiend
11-11-2008, 06:40 PM
Hi Acey....

Welcoming you with a big hug...

I am dealing with eczema, the trunk and it is out of control..

Are your hands, dry, chapped, eczema, atopic dermatitis, allergy?

Have you tried Neutrogena Norwegian Formula for Chapped Hands..works wonder to ease the dryness of my crud...also my Auntie uses it for her hands and she swears by it....

Some say after washing, while skin is still moist, within 3 minutes apply cream. They say lotion is too drying and doesn't retain moisture...

If you are more specific on your other symptoms that you are experiencing let us know so we can help, suggest with our remedies..

Or do a search with the tool above...using a keyword....

I know what you mean by hobbies, not having them...we have to reinvent ourselves. Having the disease can help us to look elsewhere, where we never looked before our disease to find things, hobbies to do..

Oh, I use to live in Seattle, will return home soon, hopefully within two years.

Hugs,
Oluwa

:]]

yes my hands my hands are very dry/burning/red splotchy/itchy. Iv never heard of that cream, as of now im ready for any suggests thrown my way. Obsolutely anything. I feel like a walking zombie of medications and chemicals all dizzy with my mind gonna explode. I just wanna give up, its been much to long without any hope.

Ill try that stuff, iim excited for anything new, thank you so much.
Where do you get this cream???

buddhabelly
11-11-2008, 06:54 PM
Welcome to our family ACEY! :D

Lupus does change our lives. We are diagnosed with a disease that we're not familiar with. Its never been talked about in school or on tv. Its scary not knowing. :( It also gets lonely; not knowing who to talk to, or who really understands you. Lots of doctors' appts, medications, aches/pains, fatigue, can't sunbathe anymore, need to watch what we eat now, can't do what we used to do. It does get depressing :cry: But, I've learned to find new things to do, new interests, new hobbies. Gotta keep myself busy some how. I don't want to think about lupus all the time and feel bad for myself. I live day to day and moment to moment. Do what you can :)

I've been diagnosed with SLE lupus for almost 3 years. I've been a member of this wonderful forum since the beginning. I needed someone to turn to; someone who'll answer my questions; someone who'll understand what I'm feeling. I've found a new family who accepts me for me.

So welcome and stay a while. Post up! :wink: Tell us more about you.

Oluwa
11-11-2008, 07:42 PM
Acey...

I bought mine at Walmart while traveling..it is in a fat tube inside a box, not a bottle... in the lotion aisle...

Hope, hopeless I know the feeling, but we have the instinct to survive, overcome...when you feel overwhelmed, feeling like giving up would you look me up, us up...here, there are so many wonderful people. Like you, we all have felt like giving up. I did, that is when I stumbled into here...reaching out when we feel at our worse emotionally, an instinct to survive.

Sometimes just to type our words, our thoughts, our emotions out help us to put things into perspective. To read what another is going through, helps. Offering ideas, suggestion helps the person who is suggesting also..makes us feel apart of something, giving. And it helps to be around, to know there are people just like you. Understanding, getting it...

It sucks, for the lack of a better word to have an incurable disease...a chronic one at that. I was just saying in another post, I hate it, I will never like it, but I have to accept it. I have no choice. Acknowledging that... I can move forward and do what is necessary to live with it...

We have to accommodate the disease, accommodate the fatigue. Schedule days of rest when we know we are going to be active, over do it. Wear the gloves to protect the hands. Eat junk, we have to expect to feel lousy. Basically we have to be aware of caring for ourselves. Be prepared. We are no longer on autopilot...just living, we have to live consciously.

Have you developed a daily routine. Me? I am still a work in progress...

Have you had your medications re-evaluated? Maybe a new regime, tweaking..or a better combination will help to alleviate the zombie feeling. Some drugs can magnify the hopeless feeling. I am very prone to behavioral side effects, as in feeling depressed, malaise, melancholy from pain relievers, muscle relaxers, even sleep aides. Maybe your too?

Keep looking for your wellness..
Hugs,
Oluwa

KathyW1958
11-11-2008, 07:44 PM
Hi ACEY,
Welcome to the site. My name is Kathy. I have had Lupus SLE for most of my life literally. The doctors believe that I have had it since the age of 5 years old or there abouts. I will be 50 in December. I also have the rashes that appears on the hands and feet and it really itches and burns really bad. I am wondering if the rash you talk about is a blistery rash? If it is, it could be Pompholyx Eczema. It itches and burns terribly. My doctor put me on Imuran for it and it has helped a lot. My hands have basically been clear for several years now, but I still get small outbreaks on my feet in the arches of the feet for the most part and it itches and burns big time. I can understand very much how you feel. What other medications are you on?

Pompholyx Eczema is an Auto-immune disorder that they do not know what causes it, but I believe that it is due to the Lupus messing up the immune system. I hope that I have helped some here.

I am wondering if your doctor tried giving you Dapsone for the rash on your hands and feet. This is a very good medication and I did wonderful on it until my body for whatever reason rejected it. I hope to get to know you.

Hugs,
Kathy

Acey MorFiend
11-11-2008, 08:47 PM
Acey...

I bought mine at Walmart while traveling..it is in a fat tube inside a box, not a bottle... in the lotion aisle...

Hope, hopeless I know the feeling, but we have the instinct to survive, overcome...when you feel overwhelmed, feeling like giving up would you look me up, us up...here, there are so many wonderful people. Like you, we all have felt like giving up. I did, that is when I stumbled into here...reaching out when we feel at our worse emotionally, an instinct to survive.

Sometimes just to type our words, our thoughts, our emotions out help us to put things into perspective. To read what another is going through, helps. Offering ideas, suggestion helps the person who is suggesting also..makes us feel apart of something, giving. And it helps to be around, to know there are people just like you. Understanding, getting it...

It sucks, for the lack of a better word to have an incurable disease...a chronic one at that. I was just saying in another post, I hate it, I will never like it, but I have to accept it. I have no choice. Acknowledging that... I can move forward and do what is necessary to live with it...

We have to accommodate the disease, accommodate the fatigue. Schedule days of rest when we know we are going to be active, over do it. Wear the gloves to protect the hands. Eat junk, we have to expect to feel lousy. Basically we have to be aware of caring for ourselves. Be prepared. We are no longer on autopilot...just living, we have to live consciously.

Have you developed a daily routine. Me? I am still a work in progress...

Have you had your medications re-evaluated? Maybe a new regime, tweaking..or a better combination will help to alleviate the zombie feeling. Some drugs can magnify the hopeless feeling. I am very prone to behavioral side effects, as in feeling depressed, malaise, melancholy from pain relievers, muscle relaxers, even sleep aides. Maybe your too?

Keep looking for your wellness..
Hugs,
Oluwa

Im excited to go find that cream tomorrow! :] anything new just thrills me.

I just lay around in bed, if you call that a routine, i usualy have a routine when im well enough then it blows up and im back to square one with a new issue. My damned Ciatic nerve is all locked up thanks to 5 years of bed rest. All this lupus crap wouldn't be so bad if this horrible pain wasn't constantly thobbing in my ass and leg.

What i really miss is my girlfriend [she lives far away through a now snowy pass] But when she was here, i was down to 5mg of steriods and i was acually able to be in the sun, and acually tan, no rash at all. I know my mental well being has a lot to do with my phsyical well being.

its funny, all the precautions, good things i eat, good skin treatments i do, i should be the healthiest person i know, going over to my friends house with an organic apple and my alkaline water. Everything else will jsut blow up my stomach, is what i call it.

Oluwa
11-12-2008, 07:33 AM
Hey Acey...

Your stomach bloats? Have you ever had an upper or lower endoscopy to find out why? Food intolerances... to wheat, perhaps? H. Pylori infection?

Sciatica..I have that after two failed lumbar surgeries. Have you ever been to physical therapy? Is the disk pinching the nerve or is it the result of a failed surgery?

Have you had any epidural steroid injections for the sciatic pain?

Has anyone mentioned tricyclic antidepressants and anticonvulsant drugs which can help ease chronic pain. They may help by blocking pain messages to the brain or by enhancing the production of endorphins, your body's natural pain relievers...? For me, they twisted my mind too much.

Me, I've done them all..and the pain has lessen dramatically, especially when I had acupuncture performed..have you tried that?

You are right, the mental affects the physical, so what can we do about that? What are the things you like, like to do, daydream about and we can go from there....make a plan...

Enjoy this day....I miss the PNW..
HUgs,
Oluwa

Acey MorFiend
11-12-2008, 10:38 AM
Ironic, i was gonnnna have a UpperEndoScopy and a Colonoscopy on the 18th. But The doctors wanted 600.00 :shock: upfront and my mother didn't have that kinda money at the moment. It doesn't bloat or maybe it does.. it just hurts badly and i pass all foods realllly fast in a sick/flu kinda way. Im not starving so its not a HUGE upset, just everything makes me ill it seems. [just gotta eat very small healthy things]

I have some antidepressants somewhere, just more drugs i dont want to mess with my mind. Me being all zombie/wacky/moody close to mental insanity really blows when it comes to my relationships with people so i try to NOT take a lot of them. I have some pain relieving drugs, but they dont work too good anymore, and im sketchy about going to the doctor and be like "aye doc, they suck i need better ones" might think im a adict or something.

The PNW misses you :] it sends its rain, theres a storm last night t'll tomorrow. The rain pitter patter is calming these days.

Oluwa
11-13-2008, 04:04 PM
Hi Acey..

Maybe you have Dumping Syndrome, is it undigested or loose...or maybe you have Irritable Bowel Syndrome, IBS?

Do you eat a lot of cards, Acey?

What type of drugs do you take? Drugs can play a big factor on how we feel..also not taking them can too...

I would welcome the PNW drizzling rain...Though the weather here is lovely, nothing is a as wonderful, as the mountains, the green, the PS of Seattle..closing my eyes, click of my heels..dang I am still here.

Enjoy your evening...
Hugs,
Oluwa

Acey MorFiend
11-14-2008, 04:21 PM
Loose, within mins of me eating. I dont even see the point in eating anymore, it just makes me sick. I eat carbs yes, toast doesn't make me sick usualy.

I take cellcept 1,000mg Quinapril 20mg Prednisone 60-80mg. Vit.D. Prenatal [sometimes] Percocets [when im lucky] and some stomach pill.

i take all this crap and i feel like crap, eating makes it worse, its like my diet IS medication and water.

Oluwa
11-14-2008, 07:38 PM
Did you get the cream, Acey?

Could be Dumping Syndrome right after you eat..maybe H. Pylori, bacteria or Crohns....

Not getting enough nutrients is a big factor in how you feel...having chronic diarrhea too. No wonder you feel even crappier...

You really do need to go to the doctor again, Acey. For now...

Limit dairy products.
Try low-fat foods.
Experiment with fiber
Avoid problem foods.
Drink plenty of liquids.

See if that helps....call on Monday, please.

Night.
Hugs,
Oluwa

Acey MorFiend
11-14-2008, 07:45 PM
I did get the cream yesterday :] been using it and steriod cream.

I also went to the bank and adjusted my loan so i got a nice chunk of money i can do my UpperEndoScopy, and Colonoscopy. check out my insides.
[also able to buy a plane ticket to see my girlie for thanksgiving so my emotional happyness will get better ] :)

I think iv been having this digestive issue for over a year, now its just mixed with barfing. Either way when i eat its comming out fast, 1 way or the other. I really hope they can fix it when they scope me out, its weird being scared of food O_o

Oluwa
11-20-2008, 11:57 PM
Hi Acey...

That is wonderful..what a Thanksgiving you will have. Emotionally happiness, the spirit has such an impact on our health. Maybe this excurision will help a bit in the digestion. Start light and bland...

Hope you are able to schedule your scopies...soon.

The cream doing wonders, Acey?

Weekend is here, enjoy or you already, on the plane...wheeeeeeewooooooo.

Night...hugs,
Oluwa

Rubyslippers
12-20-2008, 12:37 PM
Hi,
I can relate...I'm new to this site as well. I was diagnosised at 12..and now I'm 34...I went to college also, I know the struggles of being sick with the pressure of school, friends, partying and trying to survive...and I really know what your going through. I have Discoid and Systemic. And my skin was a disaster! Talk to your Dermatologist and Rheumatolist and have them prescribe you something and come up with a solution. I finally got everything under control...13 years later and I had all of the scars from the disease...but there is hope because I had laser surgery done on my face and neck and arms...and today nobody could tell. If you want to know more...or talk more...just write and I can tell you what worked for me...and I've done it all. If you want a quick solution that will ease some pain...Aquaphor. You can buy it in the store..it's a petrolium based sav and it will help some. Ask the pharmacist were it is. You and I probably have a lot in common. When Lupus takes over your childhood...it changes things...I know. Write..and we'll talk sometime. I see your from Olympia...I lived in Puyallup for many years...Washington can mess with your arthritis big! There is actually a great Lupus doctor in Renton. She wrote a great book. She's hard to get into...if you want to know who she is...I'll try to find her card. Take care- :D

Angel Oliver
12-20-2008, 12:47 PM
Just to say hi and welcome. Hope you get help with your skin. Sending you gentle hugs.xxx

Love
Angel.xxx

NoodleMom
12-21-2008, 05:54 AM
Hi Acey, How is your belly now? Did you get you scopes done? Results?
My name is Kasey. I was diagnosed with lupus Nov. 2007. It has been a long year. Extreme pain joints muscles skin rashes, numbness. etc.. etc... I was bed bound until May. Had a short reprieve til the last week in June and once again somewhat bed bound and definitely housebound.

I see that you are on steroids. I was too (off now about a week) and I have severe belly issues. I have the same as far as seeing my dinner not 5 minutes after eating it. Much undigested and watery, I have gut pain, vomiting, nausea some bloating and lots of pain. Gas too. Eating was nearly impossible as my food never stayed put. It was either coming up or out. My appetite severly diminished. I have lost at 25lbs.

My doctor feels its from the steroid. She says steroids are hard on the lining of the stomach and if we looked at it that it would be raw. So we decided to go off them. I had been on them 3 months.
While I am still experiencing all of the above it is to a lesser degree. I am hoping that as my stomach heals the issues will continue to go away.

Just a thought, something to think about. Im sorry that you are dealing with this.


Gentle hugs to ya,
Kasey