New to group. Very scared. Have ?'s. Diagnosed with RA back in May.

[Guest guest]

Hi Everyone,

I am new to this group. Just found it tonight. So glad I found you

all. Right now, I am sitting here very scared & have ?'s. Not sure

of where to begin. I will try to make my history as short as I can.

Please forgive me if it gets long. My name is Tara. I am 36 years

old. Married to my wonderful husband, Allan (even though I know this

has been very hard on him). Currently living in northern Virginia.

Unable to have children due to having severe endometriosis & history

of pituitary tumor (have had 3 surgeries to remove the benign mass to

include a craniotomy 3 years ago this month).Have had issues with

Cushings Disease in the past. Because of it, I have to be very

carefull when taking steriods. I have been having joint problems for

as long as I can remember. Diagnosed with Chondromalicia patella in

1988 while in high school. Have had 3 surgeries on my left knee with

the last one being in June of this year for a torn meniscus..again.

Have had shoulder surgery done (bone spur). Wrist surgery

(DeQuarvains was the diagnosis). Severe OA of left knee now. Mild OA

in other knee. Already have some bare spots on bone in left knee

joint. Dr thinks I am going to need a knee replacement in about 3-5

years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

Severe degnerative disc disease in my spine to the point where all of

my discs are bad except for 2-3. Because of so many vertebrae & discs

being involved, not a candidate for surgery. On pain management

contract with a pain management specialist. Have to take heavy duty

pain meds in order to be able to just function (which I HATE having

to take) & still in a lot of pain. Always wondered if there was a

connection with all of my joints being bad. In 1996, while we were

stationed in GA with the military (my husband is former AD Navy. He

is now in the Naval reserves), I had a dr who started to suspect that

I either had RA or Lupus. Thats when I first started to get tested.

RA factor was always negative. Been getting tested every year since

then & its still comes up negative. Been dealing with severe iron

deficiency anemia ever since I was little. Had a hysterectomy to try

to cure it & it didn't. Noone could ever figure out what was causing

it. Hematologist asked about RA, but because the RA factor test was

negative, RA was ruled out. Have had to have 2 iron infusions & now

facing another one. I have to get one about every 2-3 years. In

December of last year, I started having severe pain, swelling,

stiffness & redness in both of my knees especially when sitting &

standing & especially in the morning. It then started to attack my

ankles (even though been having severe swelling off & on of ankles

for the last several years..noone could figure out what was causing

it till this year). The pain in my back, knees & ankles has been so

severe that I have not been able to sleep in my own bed in about a

year now because its on the 2nd floor. Have to avoid steps as much as

possible. Only go upstairs to shower & even then I need hubby's help.

Even painful to sleep on bed, even though we have one of those good

mattresses for the back. Going to get a better one this coming year

once we save up the money for it. It then spread to my hands/fingers

to the point where its hard for me to type. Its especially really bad

in the morning. Severe pain, swelling, stiffness & redness to the

point where it would take me hours to get up & get moving. I kept

trying to ignore it because I have had so many things wrong with me

medically over the years that I was afraid that it was nothing & that

I would be told it was all in my head, till Easter Sunday when we

went to my mom's for the weekend. Even tried to hide it from my

husband because I know he gets tired of all of my medical stuff even

though he has/is absolutely very supportive & loving. There are times

where it does get to him though. Anyway, Hubby & I were able to sleep

in the same bed since my mom lives in a one story house. Woke up

Easter morning with my fingers all curled inward. No more hiding it

from him. I never hide things from my husband either. Just that this

time, I figured the joint issues were nothing. He asked how long that

has been going on & at that point, fingers curling inward had only

been going on for about a week. He immediately suspected RA. He got

me in to see my Primary care doctor (PCM) the very next day. PCM

suspected it right away when he saw how swollen, red & painfull all

of my joints were. He did the RA factor bloodwork & immediately

referred me to a Rheumatologist because thats when we found out that

20-30% of people have false negatives. Saw Rheumatogolist on May

14th, who also told me about how a lot of people have false negatives

& after looking over bloodwork from the last several years, was

shocked that it wasn't caught earlier because even though my RA

factor was negative, the rest of my bloodwork showed that I had it

(white blood cells were off, red bloodcells were microcytic &

something else with them, the anemia, inflammation factor was high,

etc). She diagnosed me as having moderate to severe RA along with

severe Fibromyalgia. After doing a chest x-ray, TB test, & some other

bloodwork, she put me on Enbrel. After 3 months, did not respond to

treatment. Had to do a few rounds of steriods to give me some relief.

Steriods helped greatly!!! but as soon as they wore off, RA flared

right back up. Because of history of cushings disease from pit tumor,

cannot do steriods that often except when absolutely necessary. RA

has been continuing to get much worse. Been also dealing with a

severe sprain of my right ankle. First sprained it in Aug 2005 & its

been getting worse ever since. Been to several ortho drs who would

just do the air cast thing. Had a horrible fall back in Sept of this

year when ankle rolled out from under me as I was stepping off of a

curb. In Sept, Rheumatologist switched me to Humira. After about 4

weeks, I talked to her about putting me on methotrexate in addition

to the Humira since the RA keeps getting worse. Had to come off of

them temporarily the first week in Nov due to finding out that I was

going to have right ankle surgery. I got referred to a podiatrist in

October for an ingrown toenail, in which he removed. At my post-op, I

mentioned to him the ankle issues I have been having with my right

ankle. After doing some x-rays & an exam, he immediately scheduled

surgery for Nov 18th. Had to come off of RA meds 1 week prior to

surgery. Opened me up & things were worse than he/we expected. As

soon as he made the incision, I had a TON of fluid start pouring out

from the ankle joint & there was a lot of inflammtion. Podiatrist

said this was from the RA. Definitely saw severe RA within the joint.

Also ligament was not only torn, but it was severely torn &

shredded. This dr has a lot of experience dealing with patients that

have RA. Anyway, I am now recovering from the surgery. Not allowed

to put any weight on surgery foot. RA has been absolutely HORRIBLE. I

am wheelchair bound right now because 5 days after surgery, my left

ankle just couldn't take all of the weight bearing on it anymore & as

I was trying to step up on to a platform to tackle the stairs to get

back in to my house, I lost my balance & went flying. Next morning,

woke up to severe pain in both & not able to bear any weight

on " good " ankle. I now have a severely sprained left ankle with a

splint on it now & a cast on the right ankle. Dr doesn't want me to

put any weight on surgery foot & because of the RA & the severe

sprain of left foot, wants me keep off of left ankle now to & to use

the wheelchair as much as possible. Cast comes off tomorrow. YAY!!!!

Then I am going to be in a boot removeable air cast thing that comes

up to my knee for several weeks & will be able to hopefully start to

gradually put weight on it. Also found out that I might have to have

the same surgery done on left ankle, but cannot have it done till

right ankle is completely healed up. Hoping & praying that I will not

need surgery on that ankle because I am in a horrible amount of pain

from the RA. All of my joints are severely swollen, red, & painful.

Now this is where I am getting very scared. About a month ago, I

started having problems with breathing. I am now only able to take 2-

3 small breaths & then have to take a gasping long deep breath. Its

like I cannot get a good enough breath to fill my lungs. Was trying

to ignore it until last night. Also been EXTREMELY exhausted & have

started having bad headaches. Lose my breath very easily now & get

worn out very easily. Been doing a LOT of sleeping. Way more than

usual.Going to the dr even causes me to sleep several days. Have no

energy at all. Hubby & I originally thought maybe it was because I

was just exhausted, but even when I slept, still was having problems

with breathing. Started having heart palpitations the last few days &

then last night, I started feeling congested. Thats what finally

scared me in to calling the dr. Originally I was going to make an

appt with my pcm, but this morning, I picked up a book on RA that I

had just checked out from the library. I read this morning that it

can attack the lungs. Didn't know that. If I had known that, I would

have gotten seen sooner. So I called my Rheumatologist. Her nurse

just called me back about an hour ago. First of all, I got a talking

to about not getting seen sooner. She then said " you know RA can

attack the lungs & Dr. is very concerned & feels that this could be

what is going on with you " & wants to see me tomorrow morning. I then

had to promise her that if I start having problems with not being

able to breath, for me to go to the ER ASAP. I told her it almost

feels like I am drowning. She then said it definitely sounds like

you have fluid in your lungs & that the RA is attacking your lungs.

She said it could be a reaction to the methotrexate, but since I just

started taking it & she started me on a very low dose & the fact that

I only took 2 doses before having to come off of it for the surgery &

my breathing symptoms continued to get worse along with the fact that

the RA has been getting so severe that she ended up putting me back

on the RA meds last week. A little sooner than originally planned. I

also now have horrible psourisis that has also flared up & I am

getting some of those nodules under the skin.

Sorry for this turning into a book, but does it sound like I have RA

of the lungs? I am so scared right now because from what I have

researched on it here on the internet that if it is RA of the lungs,

its fatal right? If she does confirm its in the lungs tomorrow, does

anyone know what the next step might be? Is there a chance that I

might get put in the hospital? To add to all of this, hubby came down

with upper respiratory infection today & now it looks like I am

coming down with that too. Double whammy.

Any help would be greatly appreciated & I am sooo sorry for this

being a book. Just very confused & scared right now. Please be honest

with me about what could be going on. I am the type of person that I

do better if I know the full extent of what it could be even if its

not good news at all.

So glad I found you all & thank you for listening.

Tara S.