Re: It Happened To Me

[Guest guest]

,

I absolutely have your same symptoms. I was diagnosed with reactive

arthritis 11 years ago after I lost a chronically diseased kidney from

chronic obstruction (dual ureters; one of which became blocked and

caused reflux).

In addition to the occasional joint flair ups, I have daily low grade

temps and chills after lunch and sometimes after other meals. With

these 'spells' I feel an extreme rapid onset of fatigue - just like I

have suddenly been stricken with the 'flu'. If I can rest for about 30

minutes, cover up, and take an Ultram (only one per day except in

extreme flair ups), I will most always be able to continue my normal

daily routines. I am btw - very active, cycle at least 60 miles per

week (2-3 days) and work out 10 minutes 2 times a day (weight training)

on the alternate days. I have to do this to prevent chronic daily joint

pain.

PGE

[Guest guest]

i would have done one of two things after hearing this:

1. i would have laughed at this guy and walked out.

2. i'd laugh or get angry, or both, then tell him that either he re-examine his

diagnosis or this is the last time you'll waste your time with him.

unfortunately, if you choose the latter it only hurts you since a doctor like

this couldnt care less if you returned or not, and it only means you have to

spend more time looking for someone to help you out. but in the end, that could

be what you need anyway.

best of luck. james

<scottt@...> wrote:

Everything was going fine until, at the end of the appointment, he says, " The

reason for your joint

pain is because you are out-of-shape. He said, " You're simply experiencing the

pain an out-of-shape

person feels after exercising. He also said, " You are a 40 yr old man who is

mentally not ready to

face old age. " I didn't know whether to explode in anger or laugh out loud.

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

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[Guest guest]

Hi ,

You need to get to another doctor. Hopefully this awful doctor at least is

testing your for HLA-B27 and your Sed rate. I would ensure that you get a copy

of these blood tests sent to you directly and make and appointment with another

doctor! That is terrible!

I have had Reiters for 2 years now and I never had redness. I had swelling

only initially when I first got sick but never again - so to answer your

question, you to not need to have swelling or redness to have Reiters. This

disease affects all parts of our body and in my case, every month seems to be

'visiting' a different part of my body!

All the best,

[Guest guest]

:

How high is your SED rate?

There have been times when I'm very stiff (lower back) but SED rate is

only 1.

Thanks,

[Guest guest]

i agree with finding a new doctor. heres my opinion of why i feel

this way:

at an *absolute bare minimum*, a " good " (better?) doc would phrase

things as " im not finding a specific cause for your symptoms. i dont

doubt that your feeling those things, and it does appear to me that

there is something wrong, but of the many disease processes that i

work with in the field of rheumatolgy, none of them strikes me as

being the cause of your symptoms. then he also says... what we need

to do find the cause from here is... (and he fills in the blank).

just my 2 cents worth,

cfsguy

[Guest guest]

But, I AM INSULTED that a medical professional would say that full-

body

> tendonitis, joint stiffness, back pain, dry eyes, IBS, urine

difficulty, and fatigue are normal for

> a 40 yr old man! Oh well, I'm not sure what to do next.

>

>

>

> Is there anybody out there with my symptom, but no joint swelling

or redness?

Yup, been there, done that. My GP and my first rheumy both said that

I had nothing going on.

I had severe pain in both wrists, and tested negative for carpal

tunnel. I was viewed either as a 'drug seeker' or told that it was

all in my head. Two more rheummies later along with an MRI that I

insisted on, and my diag finally came to AS.

By the time I was diagnosed, the pain spread to every major joint

and my back. I NEVER had any redness or swelling, cept for my left

ankle.

Boy, do I feel for you. I would turn right around and find another

rheumatologist. With those symptoms combined with your family

history, it really shouldn't be too hard to give you a diagnosis.

Good luck to you,

[Guest guest]

Yes, you're talking about me. Every day I have fatigue, chills, low

grade temp after lunch and dinner. I don't know why these symptoms

follow a meal. Even when I eat light, which is always, I feel awful

enough to wish I hadn't eaten anything. Does anyone else have this

symptom or is it something other than the Reiter's?

When I have a true flair up add to the above total body aches/pains in

all major joints, painful denuded (shallow ulcerations) tongue symptoms,

eye irritation, severe headaches, palpitations, IBS, etc. etc. Yet,

when the doc (who diagnosed me with ReA) sees me, he says well your labs

are good, no joint swelling or deformity. You look great, this is

obviously not killing you (which doesn't help - I am 51 and look maybe

41 on a bad day - make myself exercise (cycle) and work out with

weights).

[Guest guest]

Hi Pat ..this is me too with the reactions after eating have you tried a

food diet or noticed any foods which make it worse /react really quickly?

my primary trouble right now is a nasty urethritis/cystitisthat has been

going on for 1 and a half years straight ive been on tons of antibiotics

which just made the pain worse ive had reiters for years and drs have

excluded interstitial cystitis etc so i am thinking the urethritis is being

caused by the reiters? in the past i had relief from zythromax and trad

chinese medicine it seems like ive tried about everything this time to get

this to go down with no luck. im just coming off prednisone (it worked for a

couple of days while i was at 50 mg) now im back in crazy crazy pain. i

found a good website dietary advice health conditions they have a diet for

rheum arth which i am modifying for my own other limitaions and i will be

doing that to see if it helps with this i know there are things i have been

eating that cause me to get worse it is so hard to live around them and im

still in pain just less of it but then i feel totally restricted i guess it

is just a part of the mystery. i hope i can figure my way through it but im

losing some of my confidence ive been through alot in my life but this

urethral pain feels like an ongoing uti with no end in site if anybody has

any clues please send a line... best to all ...Bella

[Guest guest]

I have the same symptoms as you without the IBS. I dont have any joint swelling

or redness. My doctors just come back with not everyone presents all the

symptoms of ReA. Additionally they dont have any answers to the other symptoms

(non ReA) that I have as well such as burning skin sensations, a biting itch and

a few others. Question: Do you know if you have had any quinolones antibiotics

such as Levaquin or Cipro just prior to you problems? If so, you may want to

look into the possibility of an adverse reaction to these drugs which are know

to cause the symptoms you describe.

Doug in Md

[Guest guest]

Hi ,

My SED rate has been good/normal when I get my blood tests done. And like

you, I still feel pain, stiffness, infections in my eye even when its 'normal'.

[Guest guest]

Sed rates can be inconclusive. Many in our group have high SED rates. Some

doctors discount it in chronic Spondy, although many still use the test. A

doctor who used to be with this group and was a leading authority on spondy d

isease said that many patients with very aggressive disease still could have

normal SED rates. He had AS and his wife had RS. I've often wondered what

happened to him. Like me, he had glaucoma...probably as complication from his

AS???

He was involved in the discovery of the HLA B-27 genetic link.He was a great

help to us for learning about these diseases.

My SED rates, over the last 30 years or so, have been pretty normal. Maybe

SED rate could have significance during an initial infections? I have high

EOS (which can be due to chronic disease), and very high Platelet count (which

my doctor attributesto AS disease or our meds.)

Best regards, Connie

[Guest guest]

Hi All,

My SED rates are normal even with my eye and tendon inflammation, too. Is that

typical of Reiter's?

in CA

Regarding normal SED rates but still having inflammation/stiffness...

[Guest guest]

Please, no offense intended to any one in particular other than the

Dr and Med Student associated with this story.

Harrumph How about being told that your red palms, which are very

noticeable, are merely because you're white and more pink. This from

a med student who is black. The dr who is also black didn't blink an

eye or say one thing about that. Sorry, but I am outraged at such a

lack of respect. These palms get noticed by nurse friends of mine

and to hear this? Egads!

I have posted a photo of my palms on a spondy site and gotten several

folks who are like " where did you get a picture of my hands " .

Sal