Lots of questions, open to suggestions.

[cereal]

Hi everyone, I think I have finally reached the end of the rope... long story in a nut shell have had P for 7 years, (I'm 46 now) currently I have it everywhere, except for my face, I was able to get that spot cleared up. I actually think some of the larger leisions are trying to go into remission. Change of weather? Or maybe because I've been taking xanax to help with stress. About a month ago I was going through a major stressfull time, over that weekend my palms became fire red and hurt, Monday morning I woke up to find my palms covered in P, within the next few days my fingers all got into the act. every knuckle is covered, splitting, cracking open, bleeding. I've been using first aid cream and keeping my fingers bandaged, I know that's not going to help with the P, I'm trying not to get an infection. (I change a lot of diapers, see below) My palms are a little better, My hands are swollen, during this break out I now also have P on the soles of my feet. I'm wondering what treatments have worked for the feet? Tops of my feet, toes all broken out. The next concern that I have is for many years I have had trouble with one of my ankles, around Christmas time I noticed that both ankles were swelling really bad. At the time I just kinda ignored it, but they are still swelling. The swelling doesn't go down overnight even with being elevated. So I'm thinking PA? Both ankles and feet, swollen to the point where their the size of my calfs, painful, loss of motion. I know I'll need to see a Rhuem. for a correct diagnoisis. Silly question, if you have P on the soles of your feet what type of shoes do you wear. I've taken to an old pair of red house slippers, I wanted to at least be color cordinated, with all the lesions. After all this time I thought I had a pretty good handle on this. I go out in public, I wear shorts, short sleeves, and I've come to terms that if my skin offends other people, too bad. When I look for a Rheum. I want a good one. Any advice on the questions I should ask to make sure the doctor is really qualified to treat PA? If my self diagnoisis is correct. From reading I've learned that they will probably prescribe meth, or cyclor, (sorry for the abbriviations) not sure of the spelling. My family doctor didn't want me taking either of those drugs because of other health problems. I am also extreamly tired. I was contributing that to having only 5% iron satuation. low normal is 20%, plus my choestral is very high even with being on medication to lower it. the doc said that alone could cause me to be tired. Somewhere I read that fatigue could be a symptom of PA, with PA what causes the fatigue? For the first time in a long time I'm feeling overwhelmed by this. Just like my life in general, hubby is disabled, daughter was a victim of domestic violence by her ex boyfried the father of our grandson, she and our 9 month old grandson are living with us, our house is for sale, because we can't afford to pay the house payments and pay for medical insurance. too many bills, not enough money, that is one reason I have put off going to the doctor. I have applied twice for social security disability, got rejected both times, they said I'm missing 2 points. that whole system confuses me. How long does it take for a Rheum. to make a diagnosis? I have been looking for a townhouse, since hubby is no longer able to take care of the upkeep on the house and the yardwork. A townhouse sounded like a perfect solution, but now I'm wondering about the steps. If you have PA in your ankles, does going up and down steps aggrivate your condition? Is Pa like P, where it gets better then flares up? I know I may be putting the cart before the horse and might be totally wrong with my self diagnoisis. I would love to hear from someone who has PA and let me know how they deal with it. I can read all the information that's available but to really find out what the coming attractions are I'd like to hear it from someone who is going through it. If anyone can answer any of the questions about the P on the feet and hands, I'd love to hear from you. I'm too old and way out of shape to do handstands in the yard to let the soles of my feet soak up the sun. OK so I haven't lost my sense of humor yet. Sorry this was such a long post....help I'm typing and can't quit... Hope to hear from someone soon....thanks pat

[MBowden]

Pat,
Lord child you are going through it aren't you?? I do understand where you're coming from though. I also feel that I have all the symptoms of PA but as of yet no official diagnosis. The swelling of the ankles could be many different things so you really need to see a doctor. I also have no insurance and have been out of work since Jan. of 2000 because of back and other problems so I can truly sympathize with you're situation. I also have been turned down twice for ss disability and am now waiting for a hearing.(it's been 18 months so far!).The crazy thing is the ss people agree that I can no longer do any of the work I am qualified to do and recognize that I can no longer sit or stand for long periods of time, so what's the problem?????????:confused: :confused:
I also have outbreaks on my hands and feet. The things that have worked best for me are vaseline and overnight type moisturizers!! No shoes have felt good on my feet when I have it bad on my feet!!!
I wish you the best, I know I didn't have alot of the info you wanted but I did want you to know that you are NOT alone!!! Hang in there dear, Things will get better!

Marlene

[hazy]

Hi Pat,

So sorry to hear what you are going through....
I am currently getting SS Disability for P on my hands, feet and genitals....so I have had experience with SS.
Here is a link that should tell you how the points are awarded: http://www.ssa.gov/dibplan/dqualify2.htm
If you have any questions that you think I might be able to help, please feel free to contact me. (PM me for my email)

I rarely wear shoes, as I don't leave the house that often, but when I do, I wear Skechers tennis shoes (Iam not connected to Skechers in any way). Even before my feet got so bad, they were the most comfortable shoes I had ever worn.
But like Marlene stated, no shoes feel good when your feet are bad.

Wishing you the best........

[lapradef]

Before he retired, my faithful old GP of 30 years routinely checked my ankles for swelling every visit. This had nothing whatsoever to do with P or PA -- he was checking for liver and/or kidney impairment. The young ones don't seem to know to do that.

Since I developed plantar fasciitis, I do in fact have some swelling in my feet and ankles. The PA, developed concurrently, may also be a factor. It's certainly the cause of the swelling in my hands and fingers.

In any event, it could mean a lot of things -- none of them good. I'd have it checked out.

Good luck -- GL

//////

[Twizted1]

Pat & other members,

I can surely sympathize w/ the ankle swelling!!I get swelling so bad I can't walk straight. I also have inflammation of the achilles tendons which is directly related to the PA. My knees swell up pretty bad as well, my right knee swells like a basketball on rainy days. My psoriasis isn't as bad as most ppl w/ this condition, but everywhere I have a patch I have a pain. My hands are getting so bad I can't type for more than 10 minutes w/o taking a break , plus if I sit too long my legs & back start to ache badly. The frustrating thing is its a guessing game of what is going to hurt most & when(LOL). As of 2 weeks ago I started getting rough patches on all my knucles & on the side of my hand along the pinky. I also noticed that on my right hand my fingers won't stay straight, especially the pinky & ring finger. The ring finger is bent at a right angle & no matter how hard I try, I can't get the finger to touch the middle finger unless do it manually by holding it in place. With all this going on I think the most frustrating things are the constant fatigue & nausea. Its great to find a group to commiserate with. Although I honestly wish we were a millionaires support group instead of a PA support group:p Here's wishing you all a pain free today & always

craig

[MikeK]

Pat,

I'm so very sorry for what you're going through. :( I wish that there was something I could do besides being a shoulder to cry on. Sigh!

I have p on the top of my hands. This winter was one of the most severe we've ever had here in New Jersey and my hands went from bad to worse. They were cracked, bleeding and very, very painful. I was concerned that the cracks were going to become infected. At first I treated the cracks with peroxide and neosporin. I wore rubber gloves whenever I cleaned or washed the dishes. It finally got to the point to where I broke down and called my derm in tears. She prescribed Ultravate (which she described as a very powerful steroid) twice a day on the weekends only and Dovonex twice a day during the rest of the weeks. She warned me that Ultravate could lead to skin thinning. She also asked me to avoid anti-bacterial soap. (She suggested Cetaphil liquid. I find that the cheaper store brands work just as well.) (I understand that Dovonex is expensive. I know that you have insurance issues.) She also reminded me to "moisturize, moisturize, moisturize". Now that spring is finally here, I've been trying to get some sun on my hands. It's all helped, my hands are in much better shape. The cracks have healed. I even felt comfortable enought to work the refreshment stand at a high school play a couple of weeks ago.

With regard to social security. Please file an another applcation. Have the NPF and your Senators and Congressperson intervene on your behalf. My local newspaper has a columnist who is contantly writing articles that highlight people with rare diseases or who are having problems with insurance companies or social security. He seems to be very effective in getting help for people. Maybe one the papers that serve Southwestern Ohio has someone who does something similar?

Just my $0.02.

You're in my thoughts and prayers.

Good luck,

Mike

[MBowden]

Mike,
What would a Congressman do for you in this situation? The NPF?? I'm really curious to see if it might be helpful in my case as well. I checked around today and it will cost me any where from $250 to $500 to see a Rheumatologist and that's only with a pcp referring me!!! And you know that he is going to want to see me first!! What's a gal to do??? I appreciate your help!

Marlene

[hazy]

Originally posted by MikeK

With regard to social security. Please file an another applcation. Have the NPF and your Senators and Congressperson intervene on your behalf.

Mike you are so right, I don't know why I didn't remember to mention that in my post.
The NPF has a packet that they will send you that covers how to fill out forms and what to ask the doctors. Just call them and they will send it to you.
I did write my local congresswomen, and they worked with me as well, and it wasn't just lip service, they sent letters to the different levels of the process, including the the appeals judge.
I got copies of the correspondences from both sides as they sent them to each other and SS paid attention to them.
I think this helps very much when congresspersons are involved, it is kind of like the boss watching over the employees shoulder.

Thanks Mike....

Pat, Marlene....you guys hang in there!!

[MikeK]

Thanks Fred, you took the words right out of my keyboard!

Marlene: The squeaky wheel gets the grease! A former colleague successfully appealed a rejection for Social Security Disability after she developed breast cancer and severe asthma. The low-life that she was married to walked out on her and she was forced to go live with her parents in Puerto Rico when the money ran out. :mad: She wrote to Senators Bradley and Lautenberg and like Fred said they (or more likely their staffs) were actively involved in every level of her appeal. This was a couple of years ago, but I still remember her writing in her Christmas card that she honestly felt that Social Security didn't start to pay attention to her until the Senators got involved. I know that the NPF has an insurance advocacy service, which tries to help people obtain coverage for uvb treatments, etc. I suspect that they may provide similar help for people in your situation. You may need to word things in a certain way or have your doctor ask certain questions. It can't hurt. You haven't got anything to loose. Give the NPF a call and get in touch with your elected officials.

Good luck and please keep us posted.

Thanks.

Mike

[MBowden]

You know, I thank God every day for this board! Seriously! Mike and Fred, I appreciate your input. You know you get to the point that I'm at in the process and the ss adm. says "you need a lawyer" so I get a lawyer. There has to be a conspiracy there because the lawyer only gets paid if you win, they get only a certain amount by law but why do I need them? They don't seem to move anything along any quicker than I could!!!
I will contact the NPF and Congressman Coble in my area. I really appreciate all of your help!!

Marlene

[paboswell52]

HI EVERYONE, I HAVE RECENTLY BEEN DIAGNOSED WITH PSORIATIC ARTHRITIS IN MY PELVIC AND SPINE AREA. THE PAIN IS HORRIBLE TO SAY THE LEAST.I HAD SURGERY LAST MAY ON MY NECK TO REPLACE A DAMAGED DISK. I TRULY THINK THIS WAS ALL THE TRAUMA MY BODY COULD TAKE.SO NEEDLESS TO SAY THE ARTHRITIS IS IN MY NECK AND LOWER BACK SPINE AREA. I ALSO HAVE THE PSORIASIS TO GO WITH IT. I AM NOW ON INJECTIONS 2 X A WEEK(ENBREL) MY PSORIASIS IS DOING VERY WELL. IT HAS BEEN I MONTH TODAY.I ALSO AM GETTING SOME WHAT OF A BREAK WITH THE PAIN THANK GOD. I TEACH SCHOOL TALKING ABOUT A CHALLENGE. HEATING PAD TO JUST WALK IN THE MORNINGS.THIS HAS BEEN A TOTAL NIGHTMARE FOR ME. NEEDING SUPPORT.

[MBowden]

Paboswell52,
With the exception of the meds you sound like me! I use a heating pad (on low) at night to help keep away the stiffness I always have in the mornings! I haven't been diagnosed with PA yet but am trying to work out a way to see a rheumy! I also have had surgery on my neck to remove a disk just last July and now I get achy there! Fortunately, the pain isn't as bad as before the surgery, just achy.
The nightmare part is true! It's like a bad dream that won't come to an end, but let me assure you of one thing; the folks here will inspire you a great deal. You'll get some great advice and I have found that if they aren't sure of an answer they can generally direct you where to find one!!
Hang in there, we're "in this together!"


Marlene

[cereal]

Thanks everyone who posted to my saga. I never thought about getting my elected officials involved. Everyday I just keep hoping for just one thing to go right in my life. I had my ankles x-rayed and will get the report tommorow. My family doctor is on an extended leave so I have to see his associate on Tuesday. Not thrilled about that, I hate breaking in new doctors. But I will go, My right ankle is so swollen I can't walk on it, the swelling has spread up to just below the knee. Ice isn't helping, heat is out, too many lesions and heat makes me itch way too bad. I will email the NPF and request the booklet about filling out forms. Thanks again. pat