Greetings all

[Guest guest]

Hello....

I have been lurking for a while and thought I would take a moment

to come out of the background and say hello.

I have had psoroasis on my hands for 22 years. (Constant.

Different Drs said it was excema, fungus, dermatitis and psoriasis)

Over the last 5 years or so I started getting aches and pains in my

upper back. Though I saw a GP regularly, I attributed my pains to

getting older. My worst symptom that I chronically expressed to my Dr

was fatigue. I have had debilitating fatigue that sometimes for days

on end I would go from my bed to the couch to my bed again. No matter

how much (or little) I rest....I am tired.

About 5 years ago I started getting blisters on my feet and

having extreme joint pain. Some days it was so bad I couldn't dress

myself because I couldn't bend my fingers. This persisted for almost

3 months, effecting every joint in my body. Drs ran hundreds of tests

but found nothing. Then, out of the blue, the joint pain stopped.

Though I still had blisters on my feet my joint pain was miraculously

gone.

I lived relatively free of joint pain (other than minor aches and

pains) until the Spring of this year. Once again I was in the grip of

a nightmare. This time the pain was primarily in my upper back and

chest cavity. Thinking I had hurt myself or slipped a disc I went to

see my Dr. He took x-rays. I will never forget his words " You have

the worst x-rays of anyone I have ever seen that is still walking. "

He forecast a wheelchair within the next 3 to 5 years.

This began my journey of blood tests, specialists, x-rays and

MRIs. My current diagnosis is ankylosing spondilitis/psoriatic

arthritis. I have just had my 3rd series of MRIs and am waiting for

test results.

I was on methotrexate for about 5 weeks but I started going

blind. I am about to start on Enbrel.

Here are my questions:

1) I have applied for Disability. Has anyone else received disability

for this condition?

2) Does physical therapy help with the pain? I am afraid to start

because just vaccuming the floor can lay me up for days.

3) Does anything help with the fatigue? I feel like I am sleeping my

life away.

Thank you

Sandi

[Guest guest]

Sandi,

Yes, you can get SSD for Psoriatic Arthritis. It takes at least 5 months,

sometimes longer. I think it all depends on how your Doctors fill out their

questionaires. I got mine the first time I applied. Sometimes they just

automatically deny the first applications. If they do, be peristent. Reapply

and write a letter to all your congress men to help you.

I have had physical therapy on my neck that did help. And then just lately

for my lower back that put me down for over a week in pain. Some say yes,

but I plan to leave it alone from now on. I can't afford to pay for pain.

I have not found anything that works for the fatigue. If I do today, I rest

tomorrow. This is the way I keep myself moving. I have to accomplish at

least one task per day. My only goal. Some days that is just getting up and

getting the coffee made.LOL

Welcome to our group. There are many great people here who, I am sure you

will hear from.

You will soon see we all react differently to everything we try. So you

also have to research, (there are many websites with great information, I use

MayoClinic.com myself) experiement, and stay in contact with your rheumy. God

Bless you,

Janet in Ca

[Guest guest]

Sandi - welcome! I'll let other, wiser, folks answer your

questions - I'm new to this myself. I'm so sorry, though, that you

weren't diagnosed sooner. That is the greatest problem for so many,

in my opinion. Meds are available that can prevent the kind of

damage you have suffered. This should *not* be happening to you or

to any of us.

I believe I had my first attack of PA about 10 years ago. I saw 4

different doctors over a period of several months - 2 primary care

and 2 orthopedic. They took all kinds of x-rays, bone scans, blood

tests, etc. They insisted it wasn't arthritis because I had no

joint changes, no rheumatoid factor. Plus I had no P on the skin.

That flare finally passed and the best guess they could come up with

was " maybe it was a brown recluse spider bite. "

I was (thankfully) without a major flare for 10 years, but

unbeknownest to me, the PA was doing it's dirty work on some of my

bones even without major pain or swelling or any skin involvement.

I had " mild to moderate " pain intermittently in some joints. I have

a pretty high pain threshold, so it never seemed like anything to

make a big deal about - after all, I'm middle-aged. Now I have 4

fingers with bone loss already.

One thing I am resolved to do, once this flare is under control and

I am able to get back to a near-normal level of thinking, planning

and walking, is prepare a kit of information on PA for all 4 of

those doctors plus the primary care dr. and orthopedic surgeon who

first saw me with this flare. They may not look at it, but it's

worth a try. I will enclose a respectful cover letter, explaining

that I think PA is perhaps not as much on physicians' " radar " as it

should be. I will print out some useful stuff from the Psoriasis

Foundation, Arthritis Foundation, plus some brochures from my

rheumy. I want to emphasize that early on, there is no evidence of

joint destruction with PA, that often there is more inflammation in

soft tissue, tendons, etc. than in joints, that contrary to popular

belief sometimes the psoriasis part comes late to the party. And

emphasize how important early diagnosis and treatment can be to

quality life.

Anyway, I wish you the best on this journey. You've joined a good

crowd of people. Thanks for coming out of the shadow!

sherry z

>

>

>

> Hello....

>

> I have been lurking for a while and thought I would take a

moment

> to come out of the background and say hello.

>

[Guest guest]

Hi Sandi,

Let's see, about your questions...

1. Disability - I recieve disablility for this. I had a very good

doctor that the disability board sent me to themselves, that put me

through all manner of tests and exrays. He declared me totally,

permanently disabled. That was that and in six months I was told I

would receive the disablilty with review every three years. It can be

a good thing or bad, depending on how much you actually receive

versuses how much you need to survive. I don't get enough to survive

on my own. Most people I have talked to did not get it on the first

try. If you are denied and your docs say you need to stop working or

you just can't work at all anymore, then if you are denied the first

time, talk to one of these lawyers that handle disability denials.

Also to be considered is the fact that two years from the date of

approval, medicare will kick in automatically. Part B preimium is

$88.50 a month and they will hold that out of your SSD. You will also

be able to enroll in a medicare prescription program. Review those

very closely. Some of them will not pay for part or all of the meds

needed for treatment of P or PA. I found that out the hard way.

2. Neither my first rhuemy nor the one I see now think that PT will

help much. PA isn't like torn cartlidge or surgery to be recovered

from. It is permenent damage to the bones themselves and in some

cases PT could cause further damage. My new rhuemy did suggest

swimming and water exercises as the water takes the weight off the

joints but still adds resistance for the muscles. I don't have a pool

and can't afford to pay everyday to use a pool so...I make do as best

I can. I do get out and walk and do ROM exercises as my joints will

allow me. I had to learn the hard way, when it begins to be

uncomfortable to the point of painful, STOP!. Otherwise you pay for

it dearly. Mild yoga as can be tolerated is something else my rhuemy

suggested.

3. As for the fatigue, I don't know what to tell you about it really.

I try to get a full eight hours of sleep. Try being the key word

there LOL. I take an all natural daily vitamin, tastes bad but I

don't like all those dyes and preservatives. Sublingual B-12 drops

helps sometimes if I really need some extra energy. I have been

really evaluating my diet lately and trying to add 'energy' foods to

it. I have to watch my diet closely, being diabetic I have to watch

sugar and carbs, and that seems to be where all the 'energy' foods

fall. The one thing I have changed that seems to make a difference,

and it sounds strange, I had to cut out all the soda pop and that

eliminated a huge amount of caffiene. Caffiene is supposed to make

you energetic, right? I have more enery now without it than I did

with it. But know that you aren't alone in battling the fatigue, we

all suffer from it to some degree.

You could try finding something that really grabs your interest. I

used to do a lot of hand crafts, crocheting, knitting, cross stitch,

etc. My hands and wrists got to the point I couldn't do those things

anymore. It is going to sound wierd, but my brother got me interested

in an on-line PC game. You would be amazed how many people I have met

through it that are disabled for one reason or another and the game

gives them something to look forward to doing. Sometimes a group of

us will get together to do a specific quest in the game and have a

lot of fun. Which takes our minds off our physical problems and I

forget sometimes how tired I felt before I turned the game on that

day.

You are in the right place, being in this group. We all understand

what you are going through. My own mother said I whine too much and

she thinks I should take some antibiotics and I would be all better.

That was her response to every little sniffle, sneeze or cough when I

was growing up. And it still her response today, even after my rhuemy

told her antibiotics would never ever fix what is wrong with me now.

But I am sure all of us wish a cure that simple and easy would appear

quickly. So when you need to talk, vent or have questions, we will be

here for you. And if youhave any questions about the disability

situation, email me at voodoo_witchy_woman@... . I will try to

help you as best I can or find someone that can.

Brightest Blessings,

Dalene

>

> Here are my questions:

>

> 1) I have applied for Disability. Has anyone else received

disability

> for this condition?

>

> 2) Does physical therapy help with the pain? I am afraid to start

> because just vaccuming the floor can lay me up for days.

>

> 3) Does anything help with the fatigue? I feel like I am sleeping

my

> life away.

>

> Thank you

>

> Sandi

>

[Guest guest]

Sandy,

Yes you can get disability for this disease. The

first time I went to see my Rheumy he told me fill out

your social security papers. I got in on my first try

which here in Texas they say is unheard of, I did not

have to use an attorney. It was a real relief to know

that I was going to get it athlo I am 43 and disabled

and can't work, I am finally a stay at home mom to my

13 yr.old son I was not there while the others were

growing up, which I feel bad for because my son and I

are closer than my daughter and I will ever be. It is

hard for him to understand that I can't get out there

and play basketball with him anymore so he does not

play it either. I have tried to talk him into it

because he is good, played on a team for school. If

you are working now, and they have a program where you

get a small check each week for being sick stay on it,

until you can get SS. To save yourself from worrying

about money. God has blessed me every time I needed

not wanted but needed He was there for me. Before I

had PA I was renting now I am buying my Mobile home

and it Will be paid in full in 2 more years. I moved

into it last year. After I had been off work for a

year. It seems like when I worked (2jobs) single mom

of 4 I never had anything now I have so many things

that I have been blessed with, hard to say it just

might have been this PA that brought me closer to God

and given me the insight to see that family is more

important than material things ever could be. I have a

closer relationship with my 20 yr old son who I never

thought would talk to me after he could leave home. He

gave me so much trouble growing up and looking back I

see it was because he wanted my attention. I was too

busy thinking I had to work and make my children have

a life with everything they wanted because I did

without during my childhood.

Back to the subject with brain fog I tend to run off

that the mouth.For physical therapy as long as it is

water aerobics that way there isn't any pressure on

your joints. For the fatigue I have found that OTC

prenatal vitamins help. I still have to take naps

during the day, but they do help. Whatever you do DO

NOT over work yourself, then you will be in bed for

days. I have learned that one from experience. I am

the type that likes to stay bust all the time. I think

that came from the bible when I was younger, it says

to work with your hands all you could because a day

would come when you couldn't do it anymore. How true

for me. I loved to cook and bake and my kids would

always come to my house because they knew Mom had

cooked something, now they don't come over as much

because Mom can't do like she used to. Sad that they

don't understand my disease, i miss them a lot and my

grandchildren too. I just pray that one day God will

touch their hearts and come see me again. I hope you

find your miracle drug and you can have some of your

life back. Remember that we are always here for you

when you feel like no one else is there.

Sharon

__________________________________________________

[Guest guest]

Hello Sandi. Welcome from the shadows to the light....the light

which is hurting my eye right now. If you've been reading, I'm the

dork who poked herself in the eye pulling up the bed covers and I'm

sporting a patch right now. I had a dental appt this week but

canceled it. Maybe I should have kept it so I could walk in and ask

for a gold tooth. Ok..enough of that. There are some folks on here

who take some meds for fatigue but I can't remember what they are.

Perhaps they will speak up and reply to your post. Lyrica rings a

bell but don't take that seriously. Fatigue is the thing that go t

me more than the walking like Fred Sanford or even the pain. I cuold

grin and bear it but you can't fight fatigue. Enbrel gave me my zest

back even though it is more than likely making me more prone to

infections lately. I'm going to try and get past the infection thing

so I can keep taking the Enbrel. I applied for Disability and did

not get it but was encouraged to try again and even told that

usually on the second or third try you get it. But since the Enbrel

has me working again I'm not so sure I'd get it. But I'll apply

again if I ever need to. Just save copies of EVERYthing you send

them. They will ask you to fill out extensive questionaires and when

you do it again, you'll want to compare and make sure that it all

makes sense and is consistant. If one time you say you have trouble

buttoning up your clothes and the next time you don't mention that

just because you forgot, they can use that to say you are doing

BETTER the second time. It's a little tricky. They were very kind to

me in the local office. The local office does not make the decisions

though. Having terrible x rays will help you though. I have minimal

damage now thank God. Please don't hesistate to do it. Don't be

surprised if they don't give you alot of money each month. The thing

that is so great about it in the state of NY is that you'd get

Medicaid and it pays for everything...no copays...medications are 1-

3 dollars a month. I got my Enbrel for 3 dollars a month rather than

the $2000 it goes for. I'll have it for 30-50 dollars a month now

that I'm on a regular insurance plan through my work. But I 130 a

month for it out of my paycheck. I'm glad to get it though....it

would not be good if I couldn't get it. Hope you find some answers

on here...I'm sure you will. Welcome out of lurkdome. -Betz

>

>

>

> Hello....

>

> I have been lurking for a while and thought I would take a

moment

> to come out of the background and say hello.

>

> I have had psoroasis on my hands for 22 years. (Constant.

> Different Drs said it was excema, fungus, dermatitis and psoriasis)

> Over the last 5 years or so I started getting aches and pains in

my

> upper back. Though I saw a GP regularly, I attributed my pains to

> getting older. My worst symptom that I chronically expressed to

my Dr

> was fatigue. I have had debilitating fatigue that sometimes for

days

> on end I would go from my bed to the couch to my bed again. No

matter

> how much (or little) I rest....I am tired.

>

> About 5 years ago I started getting blisters on my feet and

> having extreme joint pain. Some days it was so bad I couldn't

dress

> myself because I couldn't bend my fingers. This persisted for

almost

> 3 months, effecting every joint in my body. Drs ran hundreds of

tests

> but found nothing. Then, out of the blue, the joint pain stopped.

> Though I still had blisters on my feet my joint pain was

miraculously

> gone.

>

> I lived relatively free of joint pain (other than minor aches

and

> pains) until the Spring of this year. Once again I was in the

grip of

> a nightmare. This time the pain was primarily in my upper back and

> chest cavity. Thinking I had hurt myself or slipped a disc I went

to

> see my Dr. He took x-rays. I will never forget his words " You

have

> the worst x-rays of anyone I have ever seen that is still

walking. "

> He forecast a wheelchair within the next 3 to 5 years.

>

> This began my journey of blood tests, specialists, x-rays and

> MRIs. My current diagnosis is ankylosing spondilitis/psoriatic

> arthritis. I have just had my 3rd series of MRIs and am waiting

for

> test results.

>

> I was on methotrexate for about 5 weeks but I started going

> blind. I am about to start on Enbrel.

>

> Here are my questions:

>

> 1) I have applied for Disability. Has anyone else received

disability

> for this condition?

>

> 2) Does physical therapy help with the pain? I am afraid to start

> because just vaccuming the floor can lay me up for days.

>

> 3) Does anything help with the fatigue? I feel like I am sleeping

my

> life away.

>

> Thank you

>

> Sandi

>

[Guest guest]

>

>

>

> Hello....

>

> I have been lurking for a while and thought I would take a

moment

> to come out of the background and say hello.

>

> I have had psoroasis on my hands for 22 years. (Constant.

> Different Drs said it was excema, fungus, dermatitis and psoriasis)

> Over the last 5 years or so I started getting aches and pains in

my

> upper back. Though I saw a GP regularly, I attributed my pains to

> getting older. My worst symptom that I chronically expressed to

my Dr

> was fatigue. I have had debilitating fatigue that sometimes for

days

> on end I would go from my bed to the couch to my bed again. No

matter

> how much (or little) I rest....I am tired.

>

> About 5 years ago I started getting blisters on my feet and

> having extreme joint pain. Some days it was so bad I couldn't

dress

> myself because I couldn't bend my fingers. This persisted for

almost

> 3 months, effecting every joint in my body. Drs ran hundreds of

tests

> but found nothing. Then, out of the blue, the joint pain stopped.

> Though I still had blisters on my feet my joint pain was

miraculously

> gone.

>

> I lived relatively free of joint pain (other than minor aches

and

> pains) until the Spring of this year. Once again I was in the

grip of

> a nightmare. This time the pain was primarily in my upper back and

> chest cavity. Thinking I had hurt myself or slipped a disc I went

to

> see my Dr. He took x-rays. I will never forget his words " You

have

> the worst x-rays of anyone I have ever seen that is still

walking. "

> He forecast a wheelchair within the next 3 to 5 years.

>

> This began my journey of blood tests, specialists, x-rays and

> MRIs. My current diagnosis is ankylosing spondilitis/psoriatic

> arthritis. I have just had my 3rd series of MRIs and am waiting

for

> test results.

>

> I was on methotrexate for about 5 weeks but I started going

> blind. I am about to start on Enbrel.

>

> Here are my questions:

>

> 1) I have applied for Disability. Has anyone else received

disability

> for this condition?

>

> 2) Does physical therapy help with the pain? I am afraid to start

> because just vaccuming the floor can lay me up for days.

>

> 3) Does anything help with the fatigue? I feel like I am sleeping

my

> life away.

>

> Thank you

>

> Sandi

Hi Sandi,

If you have read any other posts I have found that taking a lot

of vitamin b complex and drinking green tea (contains b12) will

help you focus better and help your immune system to relax.

If you don't sleep thru the night try melatonin it works great and

is located in the vitamin section of any store. I like the Natrol

brand the best. I also reccommend 15 minutes of sunshine a day.

If you can get someone to massage you try using some heated up

emu oil. I buy it on ebay buy the quart. Boil some water in a pot

around 3 inches worth. Turn off the heat and put the whole bottle

in for 5 minutes. That will make the oil warm.

Take care,

Jim

>

[Guest guest]

In a message dated 8/2/2006 5:05:14 A.M. Pacific Daylight Time,

voodoo_witchy_woman@... writes:

Does physical therapy help with the pain? I am afraid to start

> because just vaccuming the floor can lay me up for days

Hey there...physical therapy can help teach you " self management "

tools/exercises to help you manage the pain in the future. Stretching and

strengthening your core will help you in the long term. And PT can also get

you back the

strength you lose when you stop activity due to the arthritis...

With regard to fatigue, one of my rheumys explained it this way: autoimmune

conditions mean your body is essentially conducting a civil war...think of

how you feel when you are fighting a cold...fatigued...in the case of PA, your

body never stops fighting, and all that fighting takes up a lot of energy!

In my case, managing the fatigue has become about " the new normal " ...if I

sleep less than 8 hours a night, I suffer, and I plan naps for the weekends to

help catch myself up. I just can't do the things I used to. Remicade has

helped, but some other things to consider: folic acid (at my worst I was

taking

1600 mcg per day), and have your B12 and iron checked...there is some

evidence that some PA patients have absorption difficulty with key vitamins and

minerals...

Hope that helps...

[Guest guest]

I still have fatigue but not near as bad as it was,I would cry because I was so

tired,I

couldn't do anything but sleep.

I was diagnosed with the sleep apnea, and I still have not gone for the second

part of my apmnea fitting of the mask... I am scared of it, I go into the

hospital for any surgery and I freak out with the mask on... What will it be

like when I am having to wear that thing all night, I just am worried about that

one thing... But, Barb said I had stopped breathing few times last night and its

scaring her... She wants me to make the appt and get it done...

Love and Peace Always

Shaun and Barb

[Guest guest]

Well I hope I don't have a problem either... Barb, when are they going to have

you do a mask? They never called me back today and I did call... Sooo, next

project for tomorrow is calling them again lol...

Love and Peace Always

Shaun and Barb

[Guest guest]

I've

> been using my CPAP for six months now, and adjusted to

> it almost from the start. The only thing I find

> annoying about it is that blowing the air in through

> my nose dries out my mouth in about one minute (I have

I have had a cpap now for about 2 years. It is annoying to wear at

night but I do get a better nights sleep when I use it. Try to get

used to it gradually like a couple of hours the first night and then

add on each additional night. That is what I did.

Also, Jane about the dryness. Does your machine have a heated

humidifier with it.

Janet (ny)

[Guest guest]

Also, Jane about the dryness. Does your machine

> have a heated

> humidifier with it.

> Janet (ny)

Hi Janet,

Yes, I've got a heated humidifier. But, I still get

really dried out. I take Evoxac 3 times a day to help

produce saliva, but the dose probably loses it's

effectiveness by morning. Also I take Zyrtec at

bedtime, which adds to the dryness, no doubt. But, I

don't like to take it during the day as it makes me

sleepy. Don't like the dryness, but I've been living

with Sjogrens for many years and have a good tolerance

for dry mouth...but you'll never see me without my big

water cup.

warm blessings,

jane

__________________________________________________

[Guest guest]

I hope your Enbrel does turn up on Monday as they told you, complete

with toy

injection needles. lol

Good luck,

LOL Thanks

Surprise of all surprises....my Enbrel was delievered today! Yippity

skippity! I came straight home, iced up my leg as someone suggested

(Thank you SOOOO much!) and harpooned myself before I lost my nerve!

YEEEEEEEEEEEEEEEEEEEOUCH!

Just kidding. It wasn't that bad at all. I think it startled me

more than hurt me. This was about 3 hours ago. My leg isn't even

sore. I guess it just goes to show the fear of something often is

worse than the reality.

Thank you everyone for all your help and well wishes and for holding

my trembling hand through this ordeal. Like a little kid afraid of

the dark, you helped me into the light.

Sandi

[Guest guest]

In a message dated 19/08/2006 12:33:02 GMT Daylight Time,

utahgoddess2000@... writes:

My leg isn't even

sore. I guess it just goes to show the fear of something often is

worse than the reality.

See Sandi?

..................and you thought that your leg was going to fall off after

the injection too. lol

I'm glad you managed it ok. Now you will hopefully sit back and reap the

benefits.

You also said:

Thank you everyone for all your help and well wishes and for holding

my trembling hand through this ordeal. Like a little kid afraid of

the dark, you helped me into the light.

See, I knew Ian was right to keep that light shining.

Take care,