Hello, everyone! (long post)

[Guest guest]

Hi Everyone,

I've been reading your discussions with a great deal of interest for

the last several weeks, but have just found time to organize my

thoughts and introduce myself.

My name is Pat, and I live on the southern coast of North Carolina.

I retired almost a year ago after 30 years of state employment, and

now I happily " sell junk " to supplement my retirement.

I've had Reiter's for 25-odd (often, very odd) years. I'm humbled

by what most of you have gone and continue to go through coping with

our disease. I have had a different experience from many of you,

because for some reason, my Reiter's is the sort that simmers…. it

never " boils over " exactly—I don't have big flares—but I never go

into remission, either. I have times things are much better, and

times that everything hurts and I have zero energy, but never a day

when NOTHING hurts, and never a day with the kind of energy I had

pre-Reiter's.

My Reiter's journey started with fever and gut pain that came right

after what I thought was a bout with a nasty " stomach virus. " I

don't know what it actually was. The day after the fever and gut

pain arrived, I woke up with iritis. I was hospitalized and given

massive amounts of some antibiotic by IV because my white cell count

was so high, but tests didn't show what caused the infection. I

suspect the antibiotic I was given may have kept the Reiter's from

becoming worse than it has been…who knows?

It took two years for the " other shoe to drop " (my ophthalmologist

knew I had SOMETHING—you don't have chronic iritis without a reason,

but we couldn't figure out what)—the arthritis arrived, followed by

countless bouts of cystitis… which no one thought at that time could

have anything to do with Reiter's, since it wasn't urethritis, which

the " textbook " said Reiter's folks should have… if this disease ever

read a textbook, it didn't pay close attention…

Anyway, I finally got a diagnosis of one of the spondys, probably

Reiter's, although I also had some spots of psoriasis that appeared

with the arthritis, so that one would fit nearly as well. I also

have IBS, fibromyalgia, bouts of costochondritis occasionally, and

etc…. I don't know if I am HLA-B27 positive; I do have a history on

both sides of the family that makes me believe some genetic

component comes into play.

I have " maintained " pretty well on anti-inflammatories; I wear one

out after a couple of years and we try another. The biggest

frustration to me is that, while my rheumy is sympathetic and

certainly never tries to minimize my pain, there's very seldom

a " visible sign " of the pain I'm in—my joints don't swell very much,

or get extremely red, even when they hurt like heck—and my sed rate

never goes up much, even if I feel absolutely awful and can barely

get out of bed. Consequently my rheumy hasn't been willing to try

any very aggressive treatment. I was actually thrilled, when I had

a long bout of Achilles tendonitis a couple of years ago, to see the

tendon all swollen and corded up. I could point to it and say " see?

See how much I hurt? " Pretty sick, huh?

One of the things I have learned is that, for me, the iritis is in

the driver's seat… if I can keep it simmering at a low level,

everything else isn't so bad. If something sets it off and my eye

flares, I'll get an exacerbation of my other symptoms, including the

mind-numbing fatigue. Right now, I have a stubborn iritis flare, and

my opthamologist and rheumy have agreed to put me on methotrexate.

We'll see how that goes…. I wonder if anyone else has found that one

component of the disease drives everything else for them?

I am sorry for taking so much space to tell my story. I hope, if

there are some of you out there who " simmer along " like me, you will

get something out of this, and write to tell me what you have

experienced. I would love to hear from any of you—it's a lonely

disease, I think, no matter how we experience it (I'm blessed to

have a husband who understands—he has AS, but no eye component,

thank goodness). Your posts have already meant a great deal to me.

Best wishes to all,

Pat

[Guest guest]

Pat wrote " … if this disease ever

read a textbook, it didn't pay close attention… "

Hi Pat

It was so interesting to read your story - there are so many

paths this disease takes, aren't there? And it is a lonely

disease. I've stopped using the word 'arthritis' at all, as

you invariably hear " oh yes, does yours get worse with the

cold weather? " etc.

Does anyone have a succinct way of saying what we have -

like autoimunne disorder or silmilar?

You're welcome to email me privately any time Pat.

Best wishes,

[Guest guest]

Hey Pat, Welcome. My name is Marty. I live just below Myrtle Beach,SC. Dr.

Conaway in Myrtle Beach is my Rhuemy. Until I finally was sent to this man I

was ready to give up. He has to be one of the most understanding docs about our

disease that I've met. I'm AS & PsA for 12 yrs. Until him no Dr. really even

tried to help with the pain,swelling & all the other fun stuff that goes

with it. I'm seeing a pain management doc for 2 weeks now trying to get off the

percs. prednisone, hydrocodone etc. My wife thinks I've lost my mind because

I've been told by so many docs that I'll never be able to function without

the pain meds. They may be correct but I still would love to not have to take

all these drugs. It's becoming more and more difficult to keep working though.

I have to admit that. Sorry, I'm rambling. Welcome to our group. I think

you'll find many informative people here.

[Guest guest]

Welcome Pat,

I have Reactive Arthritis, Fibromyalgia and PTSD. I was formally

diagnosed last October and put on Methotrexate, Restasis for my

Iritis which by the way flares up each week, up and down. Flexeril

for the Fibromyalgia, and Darvocet or Ultram with Neurontin for the

pain.

I feel like a freakin drug store, I have a drawer in my dresser for

my meds. I am in a huge fibro flare, and my ReA is the same, not

better, not worse. I just go daily, and face what comes.

How do you stay in a decent mood, and not be frustrated with what you

have to give up. I am on semi-bedrest for a flare up in my ribs, go

to PT 3 times a week, and other than that, I am so lonely and this is

getting old after one year. I quit my job 6 months after I was

diagnosed. I couldn't drive anymore that far, and I could not do the

job. Did you try for Social Security? I am starting that process now.

Welcome aboard,

Kay

[Guest guest]

thank you, ... this means more to me than I can say...

Pat

[Guest guest]

Thanks, Marty. I really appreciate the welcome... I'll follow your progress with

interest and cross my fingers for you on getting off some of the pain meds...

after being out in the sun all morning, my iritis-y eye would like to have some

of your extras! I just bought it a patch instead, as it is nearly swollen shut

and I have to be at work and perky this afternoon!

Take care--

Pat

[Guest guest]

Kay,

I DEFINATELY need to go over some stuff with you, Girl--especially the rib

thing! I feel like someone has taken a baseball bat to my ribcage, and CT scans

just don't show anything... I am rushing off to my part-time job for the

afternoon... more later. Thanks for the welcome--

Pat

[Guest guest]

Kay,

Thanks again for the welcome. I wanted to have time to go over your post more

carefully and get back to you.

I have been really fortunate to have had a job that could be accomodated to

how I was feeling on any particular day, and very understanding bosses. If I

had a lousy pain day and felt like I needed to sit in a dim office and push

paper with my feet up in a chair and an icepack on my Achilles tendon or

whereever, that's what I did... even so, I was glad to retire last October at

the earliest opportunity. I had hoped to feel much better when I could rest

anytime I needed to, and of course get away from one of the banes of my

existence with iritis, florescent light (does it set your eye off, or is it just

me?). I am sure things have been better for me the last few months than if I had

still been at work, but I was hoping for more of an improvement.

It sounds like your pain levels are certainly greater than mine

day-to-day...as long as I can sleep OK most nights, the fibro is more a

low-level nuisance for me. I know I would feel better if I started exercising in

water again. That helped my pain levels a lot. What are you taking for your eye

besides Restasis? That only helps with the dry eye part (I think)... is the

Methotrexate supposed to take care of the iritis by itself? I'm going to go on

it in the next week or so. Apparently my uveitis has moved from just being

iritis to include some inflammation a bit further back in the eye, and everytime

I try to go longer than 2 hours between prednisolone drops, the drotted thing

flares again... my " maintenance " drops had been a couple of anti-inflammatories

twice a day until this last extended flare. Even so, I haven't had a day free of

some iritis pain in 25 years or so. My opthamologist says I am " fortunate " to

feel the pain at a low level of inflammation so I have early

warning of a flare and thus have avoided permanent damage. I know he is

absolutely right, but some days I don't feel so lucky!

You mentioned in another post that you aren't able to read much now. Is that

from damage to your eye, or from dilating drops, like Homatropine?

I really hope things will get better for you soon. If you can get on top of

the pain in one area, maybe improvement will follow all the way around.

When you get a chance, can you let me know more about the rib thing? Is that

a fibro issue or an arthritis one, or can you tell?

I'm thinking of you--

Pat

[Guest guest]

Hi Pat,

I am so happy to hear you have a job and wonderful people to support

you there. I had support but my job could not be changed, I was

hired for the front office, and it was a very busy place. I had no

choice but to leave.

I have another over the counter drop Systane to use 2 times a day,

again to give lubricant. Yes, the Mtx will help my eyes. I am in a

huge flare, my pain is difficult, rate it at an 8 without meds now.

My ribs are so bad, but physical therapy is working, slowly. That is

great news.

I am glad you are seeing the eye dr consistently like I am. I also

go monthly or bi-monthly. He does tests to make sure the damage is

not spreading. Last time I went I had some improvement. This was

good news, but right now, I cannot see well because of a huge flare

up.

I am struggling to read, because my eyes feel like there is a

vaseline smear over them, and I cannot see through it. I understand

this is pitting in the cornea, and my eye DR called the RH dr when

this first happened, and they agreed on the eye drop treatments and

the Mtx will help clear this up eventually or put it into remission.

The rib pain is called costochondritis, it is an inflamation to the

ribs and surrounding tissue. I take anti-inflamatories and pain

medication. But the Physical Therapy is helping the most. Honestly,

I am doing so much better after 5 or 6 weeks of this. It is

expensive for me, $45 co-pay each week, but the pain is almost gone

now.

Thank you for your support Pat, and everyone. It means a lot to me.

I hope I will help others as much as this group has helped me.

Kay

[Guest guest]

Kay,

I'm glad to hear from you! I read forward to your next post and am so happy

you have applied for disability. It sounds like you had all your documentation

together when you applied, which I know is so important... I am betting you will

hear it has gone through in just a few weeks.

Thanks for the info on your rib pain. I was uncertain if it was

costochronditis or something else; the rib pain I've had for the last 2+ years

off and on (it jumps on the bandwagon when something else hurts) is centered on

a rib, and I had read, and been told by my GP, that costochronditis is

inflammation in the spaces between the ribs, not in the rib itself. I was

reading back through some old RISG posts this week and saw that someone had

referred to costochronditis as being centered in one of his ribs, so I guess

what I'm feeling actually is costochronditis (my rheumatologist, by the way,

says this has nothing to do with Reiter's). When the pain first started, my

doctor did an x-ray and said there's an old crack in the rib at very spot where

the worst of my pain is... since then I've had two CT scans, but nothing else

shows up. I have taken a few flexeril this week, and have been pleased to find

that it helped the rib pain quite a bit; don't know why...

I am still worried about your eye. There are lots of good opthalmic

anti-inflammatory drops out there-- Nevanac, Ocufen, Voltaren, & etc... in

addition to dilating drops that would help with the pain. Since you are in a

big iritis flare, I would think you would be on prednisolone drops... have you

ever gone to the iritis.org web site? There's some great info there, including

lists of doctors who specialize in the treatment of uveitis (including iritis)

caused by one of the spondys, and info on treatment options. I hate for you to

be in so much pain, not to mention the possibility of permanent damage to your

eye. I am doing well right now on the prednisolone drops every 2 hours, but

every time I try to taper off, I get a flare. I start on methotrexate next week,

but am still going to be on cortisone drops for a while.

Take care--I hope you feel better soon. And again, great news about your

disability application.

Pat

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

I have had reiter's arthritis since Dec 1957. I also have costochronditis,

and I was told by my primary doctor (Bd cert. internist and former

rheumatologist in his former country of Serbia) that it was related to

reiter's and my rheumatologist said the same thing.

.Brazil@...

[Guest guest]

Hi Bill

I think you will find that Costochondritis goes hand in hand with Ankylosing

Spondylitis as well. Somewhere on a hard drive around this house is a graph

which shows possible interactions with the different spondyloarthropathies.

I also have costochondritis but only mild so far. Hopefully it will go into

permanent remission and give me some relief in these my golden years.

Fr. Dave

[Guest guest]

thanks, . It's good to feel " validated " ! Does anything make your

costochronditis feel better?

Pat

Brazil <.Brazil@...> wrote:

I have had reiter's arthritis since Dec 1957. I also have

costochronditis,

[Guest guest]

Hello...im glad to find there is an official title for the rib pain ive had

it off and on over the years didnt know it had anything to do with the

reiters though i geuss i thought it was just me! mine started 15 years ago

when i was pregnant with my son it was the worst part of the pregnancy i

felt like i was being split in two right where the ribs join in front i had

it again during athritis flares and also when i carried my daughter my

doctors told me it was heartburn when i had my son what a load!!! ive had

heartburn and thats not it!!im just starting to have the pain around the

ankles back of heel and i have had some weird piercing pains in my chest

(feels like through my heart?) they come and go but i had a bad one tonight

does anyone else have that or am i off track? i dont want to even bring it

up with my gp i feel like there is so much this disorder has to take from

me and im scared it has already affected me so much. the last year and a

half have been brutal im glad you all are out there with the support and

info i am not seeing a rhuemy the ones i saw years ago were no help just

shooed me back to my gp im not sure what i should be doing im going to see a

gyno this month via the urologist they werent able to figure out that the

cystitis /urethritis was from reiters no one asked me if id ever had

arthritis does anyone know if there are specialists up here in B.C. canada

who are treating this seriously? i dont think my gp has any new ideas for

me Im taking dmso and gabapentin tried 10 different antibiotics this year

none helping anyway if anyone has had a good experience in terms of drs id

love to hear from you thanks and blessings bella

[Guest guest]

For all my reiter's arthritis I take naproxen 375 mg, two pills three times

a day. Even then, the pain is so bad that I have to resort to vicodin and

more flexeril. The costcochronditis doesn't stay with me as a major problem

now. However, at one time the pain was so bad I thought it might be

something to do with a heart attack. Another time when I was having a lot

of pain at the sternum (chest) and at the time the cardiac-thoracic surgeons

wanted to operate on me, so they sent me for a catherization (I think that's

what it is called) to look inside my heart and rule out that it was what was

causing the pain. After the catherization, a doctor came up to me and said:

" It's costcochronditis. Your heart's good enough. No problems. " However,

shortly thereafter, the electrical connections to my heart went haywire and

my pulse dropped to 30. Immediately I was given a pacemaker. I also ended

up with a heart murmur. My primary physician says the reiter's caused the

problem with the electrical connections.

As for the costcochronditis, if bad and the anti-inflaminitorys (spelling?)

isn't working, I would resort to vicodin or an equivalent just to help you

get through the pain. All I can say, is I wish you best wishes in that it

passes quickly or you get something to help with the pain.

.Brazil@...

PS not sure of some of my spellings: costcochronditis and

anti-inflaminitorys.

[Guest guest]

I started taking Naproxin 500mg x3 a day. It kept the pain at bay, but

the fluid on my knees kept building. Once I switched to the Pretizone,

the fluid on my knees went down (in 48hrs), but the pain came back

with vengence (back between shoulder blades, ankles, toes). Now I take

a single Naproxin at night and a couple of Tylenol Extra Strength when

the pain gets bad. I've been offered Tylenol 3 + Codine and Dilaudid

by the doctors, but I've been resisting ... I find the other drugs are

hard enough on my stomach and I want to keep my cognitive skills sharp

(even if my body is not behaving). The simple stuff works fine for

now. When the pain was in my hip, I don't anything would have stopped it.