Re: I don't know if I should stay here?-reply thank you

[Guest guest]

The outpouring of support from this group has been more than I can say.

I just didn't think that I had much to add to the conversations. Since I won't

be taking any of the current drugs, and really haven't been given any

information.

In my original post I said that I have known for years that something was else

was going on, in addition to the pancreatitis. I really never had any of the

physicians on board with that idea, it was something I just knew.

The rheumatologist that I saw was smart, and seemed to spout out a lot of terms,

but I have left the office now, 3 times knowing no more than I did the first

visit. A lot of diagnostic names have been used, Sjorgren, Lupus, PA ( I most

definitely have PA, I have a rash on my whole body, that is so psoriatic

looking, a first grader could diagnose this one)

I have not been told what any of this could mean, of course I am a big girl and

can google myself. I am a nurse, have been since 1988, although I have not

worked since 2000.

I have decided to stay and contribute what ever I can. What I don't know I will

learn.

One question, could someone describe a flair up to me. I have episodes where I

feel so achy, more than usual, and I have to go to bed and sleep, there are

times that my temperature will elevate to 101.5. No sore throat, no cough, no

UTI, nothing other than my whole body hurts, and I have an elevated temp. This

happens about every 3 months at least.

Do people with these diseases have such extreme lethargy, or fatigue to the

point of exhaustion, without doing anything that is exhaustive?

Atwell

[Guest guest]

I have extreme exhaustion as well! I have days when all I want to do is

sleep because of the exhaustion. As my rheumy explains it, my body is

working to fight the flare and is in overdrive. So even if I'm not up and

moving, my body is working -- thus the exhaustion. Flares for me can vary

from a psoriasis flare (skin flaking typically on my scalp or behind my

ears) to joints hurting so bad I can hardly move. My doctor did put me on

lasik to reduce some of the water retention in my inflamed joints -- and

that seems to help immensely. I was gaining 8-10 lbs. per day in water

weight (caused by inflammation). That has helped fight some of the

exhaustion.

In fact, I'm tired now - and it's only 9 a.m.

Patty

[Guest guest]

greetings....first of all,the tiredness comes from the over active body and to

grow skin cells at a faster fate, the skin grows 4 times faster than a person

that doesn't have psoriasis,meaning the body  is using up more energy in a

shorter time......blessed be....bob

[Guest guest]

Hi ,

I am so glad you decided to stay, all of us have something to contribute to

each other even though we don't always feel or see it. I am no expert but what

you describe sounds like a flare. If you are unsure of what you rheumy is saying

ask questions. I have started writing down things I want to ask my rheumy so I

don't forget anything. You pay them to care for you, if your doc does not want

to take the extra time to help you understand things or run more tests than you

should find a rheumy that will, there are a lot of them out there. The only way

we can help ourselves is with knowledge. I am so sorry for your pain and the

problems you are having finding relief, I know that there has to be something

out there somewhere that can help you, it may take time to find it please don't

give up on us or yourself.

Lori in AZ

[Guest guest]

Dear ,

I'm glad you decided to stay. This is a good group and sometimes someone

can slip through the cracks, but someone almost always answers your email.

It is a long experience of learning about PA and how it affects us all

differently just like the medication does.

I know I mentioned having a good rheumatologist, but it can take a long time

to find one that you really connect too. I think I saw 7 or 8 before I

finally found my doctor I see now. He knew immediately what was wrong with

me in 15 minutes where it had taken other doctors months and they still

didn't know what was wrong. Being smart is great, but it doesn't fix

everything if you can't relate to him or he doesn't take the time to explain

it to you. You need someone you are comfortable with and who you don't feel

like a number too. I remember I had one rheumatologist tell me I couldn't

have RA because I didn't have blond hair and another doctor told me to go

watch the sunset at night and I would be able to stop all my pain pills. I

guess both remarks could have merit, but at the time, they sure weren't what

I wanted to hear or were very helpful since I had gone from full life of

working full time, raising a family, and being very independent to a

wheelchair, not able to drive because my feet were numb, and barely able to

cope with the pain. When you find a doctor that helps it makes all the

difference.

One thing I always do is get copies of my paperwork. If they don't want to

give it out to you, and it is your right to have them, I just say I'm

looking into disability, which I am, they always provide copies. That way

if you want a 2nd opinion without your current doctor knowing, it's easy to

do. Most decent doctors never are bothered by 2nd opinions, but until you

have a 2nd doctor I never want to be left without one either. Anyway, just

check out some of the great websites and I listed a few I have checked from

time to time. I have found though without a doubt that support groups have

the best info and you can find out if others suffer from unusual symptoms

like you do. I hope things improve for you and you find what you need here.

At least you know you are never alone here.

http://www.medicinenet.com/psoriatic_arthritis/article.htm

chttp://www.mayoclinic.com/health/psoriatic-arthritis/DS00476

I also joined the National Psoriasis Foundation and have found them to have

some great info as well.

http://www.psoriasis.org/netcommunity/psoriatic_arthritis

Write me anytime,

Take care, Fran