can we say, "PAIN"!!!!!!!!!!

Comment

Comment by Jeanette Gladstone on May 3, 2010 at 4:54pm

Hello, I totally understand you. I am so there!! I thought I was the only one with this form of psoriasis on my palms of hands and soles of feet. I was diag in sept last year with psoriatic arth and they put me on humira. That drug made my soles and palms so bad that as of today, I have been out of work for almost 3 mths. I was in so much pain I thought like you. Oh I just wanted it all to go away. But, I was switched to Remicade. But it did nothing for me and I was concerned of side effects so I was switched to simponi. As of now, its been working for my arthritis but nothing for my hands and feet. So, still not being able to put shoes on, or walk properly. Schuffling is more like it. So after all the powerful, sticky ointments, my dermatologist is now trying me on Soriatane. This is a pill and so far it seems to be doing the job. I know there are side effects, but not that far from methatrexate. But, like everything else Ive tried, hopefully it doesn't come back. So, I really understand your pain. I hate how I leave a little piece of me everywhere I go. I hate the way my skin cracks and the stinging pain that persists no matter what I do. I hate having to try to take baths or showers and feeling the stinging of the water or soap when it touches my feet and hands. Girl, I totally understand your pain!! I think the best advice I can give you is, find a place in the house where you can put your feet up and have either the tv or computer, book or magazine around so you can find a way to relax. Yeah I know its hard to do but try a little everyday. I have learned that psoriasis is stress related and I know that when we are upset from the pain and appearance of our skin we are stressing ourselves out. Its like a vicious circle. So, keep your head up, do your best and stay positive!! (-:

Comment by Afifa Fatema on March 1, 2010 at 7:49pm

Thank you everyone.Meants a lot when people actually try to be there for you. at this point in time thats something lacking.
@ cindy: Thank you for your words! :-) I have tried remicade, had a hugeeee reaction, almost died. I actually have tried every available med for psoriasis other than sterlara and psoriatane(sp). and I would love some more info on hospital because my mom wanted me to do that. but gosh i m pain everyday all the time, so i dont want to be stuck at some hospital for 6 months. :-( I actually am waiting for stelara. What drug are you on right now??

@Joanne: thank you so much again. hope you are doing well and getting the help you need also. Did you find a job or any medical help? I went by your blog actually...hopefully you are getting some sort of help and i also left some info on meds on your blog. i am not on any insurence either. so see if it works for you.

@ Michael: thank you also. :-) and yes we need to get some help for this type. Do let me know about what the derm say. gosh at first my doctors thought that i had infection, like 3 of the top doctors in dallas, made me very sad that they couldnt even differenciate between pustular psoriasis and infection!!! and i trusted them with my life for last few years. yah not going to see them anymore and they are the ones that gave me simponi to begin with. and didnt give me any info it. blah! well thank you for your words! :-) take care.

Comment by Michael Paranzino on February 28, 2010 at 10:01pm

Let me just echo Cindy and Joanne and say we're praying for you and rooting for you and you should keep seeking out medical attention until someone understands you HURT and takes action. Pustular psoriasis does not receive enough attention and I am going to put it on our list to get an interview with a top derm about pustular psoriasis and post it on our website. You are not alone! Don't give up!

Comment by Joanne Moncato on February 28, 2010 at 2:02pm

My heart goes out to you and I wish for you that out of the blue you can all of a sudden go into remission. But I hope your drs. can help you and take your pain away. I hate this disease and I am not in the pain you are in right now but I don't have meds or docs so it is just a matter of time before mine gets much worse to. There are some days I feel like I was hit with a baseball bat and the pain from it has set in which is a lot less than the pain you are in right now. I wish you the best and hope you can get meds with no side effects. If talking on the computer on this site helps you emotionly but it is hard for you to type think about getting a speech recognition program on your computer so you just have to talk instead of type. Thats what I use sometimes when my arms go numb and throb and my hands throb. Prayers go out to you. Take good care.

Comment by Cindy Foe on February 27, 2010 at 11:29pm

As I read this my heart aches and weeps for you....YOu are right about family wanting to help but they dont really understand how much it hurts physically mentally and emotionally....im glad you come here when you need support and i totally agree with you whne you can help someone else get out of the darkness it helps your crawl out a little at a time.... cant you go to a hospital where they can safely manage your pain until you can get on something else....my old derm never even talked about anything to me other than the dr he wanted me on...evene when it stopped working....when my husband fred found this site and posted my pics and talked to mike....mike told him to get me to a hospital and now.....fred took me to the hospital that i work at...they admitted me...dealt with the pain and a new derm came in to see me the next day....started me on remicade....i credit him with saving my life....i was so depressed....i was in pain all the time...i couldnt be a mom....i couldnt be a wife....i couldnt be a person....he came in offered me help and wham im where i am today....8 months clear...(in a small flare up right now about 15% coverage)....think about it.....maybe you should go to the hospital and get some help with this...make someone get you some kind of meds....my heart hurts for you....I will be saying lots of prayers for you tonight Afifa....