Hello... long, long, LONG intro. :)

[Guest guest]

Hi everyone!

I've only been lurking here for a day or two so I don't have much of a feel

for things here just yet, and I hope I'm not breaking with list etiquette by

posting before I've gotten my bearings - I'm just so glad to have found a great

support list!

My name is Meg and I'm 22. I was officially diagnosed with RA on July 29th...

but in some ways, that's putting the end of the story before the beginning.

I'm looking for some advice/input about what's happened to me and where I

should be headed, so I hope you all don't mind quite a few details about me.

I have moderate spastic diplegic cerebral palsy and asthma. I use a manual

wheelchair to get around outside the house, and walk independently inside

(hanging onto a few things here and there). I've dealt with chronic pain my

whole

life, have very poor circulation in my extremities and my general stamina has

always been less than that of my peers.

When I was 14, I got a mysterious case of pneumonia that blew up out of

nowhere and came within about an hour of killing me - so said my docs at the

time.

The eventual diagnosis, and it was largely one of exclusion, was that I'd

encountered some kind of mycoplasma. The first incident caused a good deal of

lung

damage and my stamina took a huge hit. I remain prone to pneumonia to this

day, although the first four years after the initial incident were the worst

(about every 3 months, I would be hospitalized or nearly so). To this day it's

debatable whether I've ever completely gotten rid of that nasty little bug.

Not too long after the first bout with pneumonia, my feet began to hurt

whenever I stood for more than a minute or so. I have pins still in my feet from

a

reconstructive foot surgery when I was 12, so I assumed it was the fact that I

had big metal spikes in my feet. Nothing else ever crossed my mind...

Also from that point, my fatigue was almost constant. Just going to school

wiped me out, and I started napping every afternoon. I was tested for

*everything* - anemia, mono, etc... everything but RA. Again, RA never crossed

my

mind...

I graduated and went to college at age 16 (fall of 98). The campus was not as

accessible as I'd been led to believe, the staff were anything but

accommodating, the campus was nothing but hills, and I was very quickly

extremely ill

and exhausted beyond belief. My grades started to slip, the administration

panicked because they thought I might sue, and... long story short, I was forced

out. (I'm well aware that's illegal. Almost immediately after I had to leave

school, my parents went through a very acrimonious divorce and we ran out of

money to pay lawyers. Then my mom lost her job [and therefore our health

insurance] and was unemployed for a year and a half... we had our van

repossessed, a

tree fall on the house, and the house repossessed. School - and unfortunately,

my health - has been taking a backseat to trying to keep a roof over our heads

and food on the table.)

During all of these lovely festivities, I noticed my stamina plunging even

further and my overall pain levels increasing. At first I attributed it to

depression (which I'm very prone to). When the winter of 2002 found me spending

15+

hours curled up on my waterbed and crying from the pain, I started doing some

research and found that people with CP are prone to advanced joint

deterioration due to the " wrong " ways we move. I assumed I'd solved the mystery

and

resigned myself to living with the pain and, eventually, on mild narcotics like

a

lot of my 20-something friends with CP.

Meanwhile I was battling with Medicaid to try to get insurance coverage

again... I had already qualified due to my disability, but typical government

mind

games were prevailing as far as my actually getting the all-important card in

hand, and I was getting mentally and emotionally worn out, with all the other

stress around.

In February, I tripped and fell - not an unusual occurrence, but I

over-corrected on the way down and landed hard on my left shoulder. It was

incredibly

painful for about two weeks, and then seemed to be healing... and then seemed to

get worse again. By mid-March I was losing range of motion. I got Medicaid

sorted out and it took another month to find a doc who would take Medicaid (yay

for state budget cuts!). I finally got an appointment for June.

It was about late April when the pain exploded. My feet hurt all the time, my

knees and hips hurt and felt " frozen, " my shoulder was killing me (and then

the *right* shoulder started hurting almost as bad as the left). One night I

took some notes on a post-it note and went to bed. When I got up the next

morning, my right hand was twice as big as my right. I began to have trouble

getting

out of bed, and spent as much time as possible in my chair, even in the

house.

The GP I went to see was nice but not altogether with it. She decided none of

my joints were hot, discolored or swollen, and that I had " general arthralgia

due to CP, " and basically told me to take some naproxen and suck it up. She

did, thank God, run a few blood tests. My sed rate and a few other things came

back slightly elevated so I was referred to rheumatology, whose soonest

appointment was a month and a half later.

The time between appointments was a complete hell. I was taking flat out

*dangerous* amounts of OTC NSAIDs with no effect. I called the GP back after a

week and begged for something stronger. I got diclofenac, which was equally as

pointless. I called back again after another week and told her I could no longer

stand up or go to the bathroom on my own and was in excruciating pain and

could I please have something, anything... she told me, in essence, " tell it to

the rheumatologist. "

In desperation I once resorted to taking a leftover percocet... which did no

good, either. I think that's when I *really* got scared. By the time my

rheumatology appointment rolled around I had vitually no use of any part of my

body.

My mom had to lift me out of bed in the morning and pray that I'd be okay all

day while she was at work... I couldn't bear weight, couldn't move my arms

or legs, couldn't grip anything or make a fist... most of my joints were huge

and purple. In retropect I should have gone to the ER - I think that's what

you're supposed to do when the pain is so bad you're screaming at the top of

your

lungs and you don't even realize it, lol - but I was so mentally not-with-it,

and mom was so stunned, I think, that we were tunnelvisioned on the rheumy

appointment.

Fortunately my rheumatologist is *awesome*. She started me on methotrexate,

prednisone, folic acid, lasix and potassium (I too, have extreme swelling and

itchiness in my legs and feet. Is that an RA " thing, " a general auto-immune

" thing, " or just a general weirdness.... thing?).

My bloodwork came back with a sed rate of 90 and I had a high RF titer...

don't remember how high now. I had a really horrible reaction to the pill form

of

mtx - 7 full days of extreme nausea and fatigue - so after two weeks of that,

my rheumy switched me to the injectable form. Due to insurance issues

(again), I was just *finally* able to make the switch this past Friday, with

good

results.... no problems with the injection itself, and the side effects are much

improved.

At this point, I'm on 15ccs mtx, 12.5mg pred, 2.2mg Folgard, 40mg lasix, and

20mcg potassium. My swelling and discoloration is largely gone, and I'm back

to gimping around my house where necessary. I've not been prescribed

anything for pain, but my pain is largely controlled I suppose... although

considering how *much* pain I was in not so long ago I guess that's all

relative. I'm

still sore and stiff most of the time... it's hard to tell what's RA stiffness

and what's CP spasticity that's being aggravated due to RA stiffness/pain.

This is also something my rheumatologist is trying to figure out... we're having

a lot of trouble trying to figure out exactly what my baseline is, because as

I'm sure you've deduced by now, I now think the emergence of the RA can be

traced back at *least* as far as college, and maybe as far as my first bout with

pneumonia (the latter theory is underscored by the fact that my feet don't

hurt hardly at all anymore, for the first time in about 8 years).

I have promised my doc that if my shoulder is not pain-free by my next

appointment, I'm to let her inject it. I'm not thrilled about the idea, but I

*need*

my arms. The legs have never worked all that great but my arms are not

expendable, so I'll do whatever it takes.

My latest pred taper, from 15mg to 12.5 mg this week, isn't going so well -

I'm having a lot more pain and stiffness and will probably have to call my doc

ahead of schedule to ask what she wants me to do. Is it " normal " to have some

trouble working down off the pred after your first major flare? I know the

reason my doc hasn't given me anything for pain control is because she's trying

to get an idea of how well the other meds are working first (again, because of

the CP complicating matters and because it's so hard for me to even *remember*

when I was last pain-free).

My next visit will be on September 23, about two months from my initial

visit... time to ask about something specifically for pain control? I know some

of

the fatigue is RA related and some is MTX related, but is there anything at

all that can be *done* about it? I've been having depression, anxiety, panic

attacks, insomnia and PTSD (tree falling on the house and van repo at 3:30 am

will do that) for a few years now and was recently referred to mental health,

which I still need to make an appt for... I plan to ask the rheumy about this,

but is there anything I should know vis-à-vis RA/RA meds and potential

interactions with the various meds that I might be prescribed to get this other

stuff

under control? Does one ever get used to this " yesterday was almost normal and

today I've been hit by a truck " see-saw? Has anyone had any experience or

have any info about a possible RA/mycoplasma connection? Can anyone tell I was

med school bound once upon a time?

Apologies for going on at such great length. Looking forward to getting to

know you all, and I hope everyone is either doing well or headed in the right

direction.

Meg

----

" Writers aren't exactly people... they're a whole lot of people trying to be

one person. " - F. Fitzgerald

" I've got a silly walk, and I'd like to obtain a government grant to help me

develop it. " - Monty Python

" There are times when you can do nothing, but you must still cry out against

injustice. Even the very stones will cry out if you do not... " - Bayard Rustin