Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group overwealmed by the multiplicity of AS *rant*

Hey all,

Just feeling overweamled by the overlapping of symptoms and amount of different things that can go wrong with AS. Now there is a possibility of a hithatel hernia and sjogrens.

I am having a WHERE DOES IT END MOMENT????? (They really need a screaming meme graemlin)

I also feel like a hypocondriac if I tell the doctor about a symptom and it is pooh pah'd, after told to tell them if there are any noticable changes. Usually the doctor will then say, "By that I meant you liver has to be swollen ten times its normal size! We can bring it back from there; we just don't want it to get to eleven times." Or, "Oh it must not hurt that bad, you didn't scream."

Don't they know its hard enough to speak up in the first place? I wanted to pull the mustache wiskers out of the face of the last doctor to whom I talked. He's the one who considered acceptable pain limits anything that doesn't make you scream.

Then there is the secret society rule to which all doctors seem to adhere. You know the one I'm talking about! Where they ask you whats new, and when you tell them symptomologies, things you only mention because you are worried about them, they look at or feel the problem area... then never mention it or act like its fine, or tells you to do something totally weird to get rid of it. "Oh you have blood, puss and little green aliens coming out of your bellybutton?" Doctor looks at it. "Hmmmm, jab yourself in the eye every morning for the next week and that should clear it right up!" *

Sorry all, I am just feeling SO MAD!!! Now I know WHY David Banner turned into the HULK when angry. Anytime I bump my (insert body part here) while having a flair, I actually can see myself doing that!

And I am really hating the word "syndrome" Wasn't there a movie called the china symdrome about a nuclear plant meltdown???? Did my body watch the movie and get jelous???

Thanks for the rant! Needed that

Hugs and Chocolate!

Chele

sending hugs & lotsa chocolate to you!!

It is a never-ending battle of twists, turns & all the things that cause us pain. Sucks and sometimes turnign into a green hulk is a good thing to do!

it kinda sounds like my battle with the VA system here... ugh!

chele,

recently, my GP referred to my pain as "discomfort" over the phone. its a good thing we were on the phone and not in person. i had to remind him of screaming to get up out of bed at times and asked him if that is what he considers discomfort? he back peddled a little. i only share that to say, yes, i know, and i love your analogy to the hulk. actually, its probably a good thing my body doesn't do that, because i'm sure it would at 1/2 the doctor's visits in the past. i started taking my husband to potential dx appointments and all GP appointments about a year ago. it helps. for some reason i get treated with more respect when he is sitting there, even if he doesn't say a word. i thought i'd get less respect, "oh, she can't do anything without her husband holding her hand." but instead, i don't get those patronizing comments when he's in the room, things like using the word discomfort instead of pain or "little bit of tendonitis" when i've been in the process of getting a cortisone shot and 5 months of ultrasound and ionophoresis in the PTs office for a wrist that makes use of it impossible for 1-2 years (hand surgeon thought i probably tore one of the small ligaments, but it was slowly healing so we both agreed not to do any exploratory surgery). fortunately, when i tell my physiatrist that my GP calls these things a little bit of tendonitis, she gets mad too, which really helps me not second guess myself and validates things a bit. its good to have at least one doc to validate that what you are going through is real and significant.

and don't get me started on the word syndrome..........

sue

Hi Chele,
unfortunately it happens here in Australia too. I have just changed GPs casue my last one kept saying there is nothing anyone could do and that he sympathised with my "discomfort". PAIN IS PAIN. I have a referral to a new rheumy as well had enough of being fobbed off. My partner now comes with me as often as he can and i am no longer patronised. makes a difference.
Take Care

Chele- you sound like you are in the same place I am. I have been flaring every 4 to 6 weeks for a year now, sitting hurts, standing hurts, everything hurts, you know how it is- yet if I (and you too it sounds like) act tough, try to explain what I am feeling in a calm way- try not to be a raving, crying, whimpering *&^%#@, then it is met with a blank stare. So now after Nsaids, steriods, demerol, and neurontin, my doctor wants to send me to a pain clinic- I am like so what- are we just giving up on this? what about Dmards, enbrel, PT, etc? I have xrays showing damage in my neck and SIs- haven't even had lumbar and thoratic(?) xrayed yet. It seems like the attitude is- you have AS, here are some pain meds. I know there are people here on KickAS who are doing much better after more advanced treatments.
What is the deal with these doctors????

I am so right there with you, hang in there- remember that we are paying customers, and that should mean something.

AS is a very complicated disease it affects different people in different ways. And affects so many parts of the body not many gps actualy understand it. And many rhumatologists dont either.Many of the things that people suffer with dont necessarily relate to the AS they can be caused by other things.Also i would say that different people have different pain thresholds what might be an ache to me could be severe pain to some one else so its not always easy for doctors to treat. Dont get me wrong im not defending doctors some are good some are bad. Im lucky ive got a brilliant doc and rhumy who have been treating me for the last 25 years. But a lot of problems i get they dont know if they are related to AS or not. when i first got AS it was still a fairly rare disease and thats not that long ago medicine is a very slow process and it takes time to reach cures and treatments to help people . I know its frustrating to us who have AS but there is no miracle cure and probably wont be for many years.
Kevin

hehe im the opposite when im at the doctors.. I tend to say im fine.. even when im really not and the pain has been getting worse and new parts of my body.. but if I tell him it always seems to end the same... MORE SCANS!! yay... also when I finally tell him about something thats been worrying me alot he usually just shrugs it off and says its normal.

hmmmm doctors.. cant live with em cant live without em.. :P

dont worry about the ranting thats what we are here for.. plus sometimes theres just noone else you can turn too.

big hugs

Sonja.

chocolate helps with a lot of stuff.

just once when you're really ready to lose it...lose it all, right there in doctors'
exam room...just totally screaming bonkers...and you hear that absurd question
about 'on a scale of one to ten'...you may SCREAM as loudly as you humanly are able
'FOURTEEN !!!!!!!!!!!!!...don't you realize you blithering idiot; you're useless...'
ya kinda mutter the blithering idiot part under your breath iykwim...

now, please make sure it's a fourteen, cause you'll get some attention, whatever...
it's all good.

hang in there

I am so glad I read this. SORRY that you have to feel this way, but glad.

...because I was just reading the "40 ways to gracefully say bye to your doctor" thread, thinking "does that mean you RAISE YOUR PINKY, just before you GIVE THEM THE BOOT?"

Yes there are lots of great doctors out there. And it's a hard job.

They also make enormous amounts of money and are handed the social equivalent of a pedestal from which to look down on everyone for the rest of their pompous lives. They had BETTER live up to the privilege, as far as I am concerned. It's tough to do the job, but dammit, if someone asks you a question and you don't know the answer, just say "I DUNNO"...why is it so hard to get that kind of honesty out of some doctors?

If your doctor hems and haws and can't sometimes admit they don't know, then your doctor becomes part of your problem. AS is hard enough without having to become a mindreader.

While I have been there, I have spent many years since, in an ongoing dialogue with my doctors. I am blessed with some amazing help, now that I have done lots of legwork to find them.

Consider this analogy. If you were to walk into McDonalds and didn't see anything on the menu you think you would like, you would walk out. You might try Burger King, try Pizza, try Starbucks.. But you'd go elsewhere, right? Doctors may not think of themselves as service providers with the simple requirement to give courtesy and good service, but we are a society that has high expectations everywhere else. If you are treated badly, shop around. Even if you are treated well, but have doubts about the treatment, shop around. Being on this site is part of that. You need to active in your own interests. There are lots of brilliant doctors out there. Good luck!

Chele

I am so sorry you are having a bad day. I totally can relate to how you feel when it comes to telling your docs different symptoms you are having. We are not doctors and we do not know what is relevant and what is not. I struggle with the same thing.

I have had a hithatel hernia since I was a child. Not sure how I got it. I have never been heavy and I do not ever remember getting hurt. With a hithatel hernia comes GERD which is easy taken care of with meds such as prilosec. Even thou it is sold over the counter I get it in a perscription. it is A LOT cheaper that way.

I hope you are having a better day today. I know for me when I am having a bad day getting on here and letting it out can really help. I have been gone from Kickas for awhile and had forgotten how good it feels to get it out to people who truely understand and can relate. Just knowing I am not alone keeps me from going crazy.

BIG HUGS TO YOU
Raquel