does anybody remember how started your RA

Welcome to HW,

We are glade to have you but i'm sorry that you are going through all this and it is not any fun when you have unexplained pain and no answers as to what is causing all of this pain.

I must say that for me I found out as to my having RA by other means.I was diagnosed with Crohns back in 03 and I was complaining that my joints were hurting really bad and at first I was told that it was not uncommon for people with crohns to have joint pain,so there for a couple of months we thought that explained all of this joint pain.

I started swelling up really bad and my legs got so big and red and hot and the pain was so great I could no longer walk, I winded up in a wheel-chair for about a year.I was sent to a Rheumatolagist and had all kind of blood work and exrays and you name it I had it done.I was told that not only did I have crohns but I had RA and AS and OA so that explained and i have Sejerens and I have issmatic small vessel diseas and the mix of this is why I was having so mush joint pain.

It is possible to have Ra with out the swollen joint's and you might want to get a secound opinion it you are still having joint pain.i do hope that you get to the bottom of this joint pain that you are having and by all means please let me know what you find out and please know you are welcome any time.

Hey there,

Im sorry that you are having all this pain and no answers....I completely understand what you are going through....

For me, I believe it started when I was 17 yrs and one day i woke up and I was in pain from head to Toe, kinda felt like I got run over by a Mack Truck, plus i had all these Bruises on my legs, with lumps on them...soo I went to my General Practioner, and he did some blood work, told me I was Crazy, and that i shouldnt worry about it, but if i must insist, then he just simply reffered me to a Foot Doctor, well I went to him, and he gave me Prescription Motrins, told me to rest and if the pain doenst go away, to come back and see him...well needless to say I didnt have health insurance at that time, and thankfully after a week of resting, The pain dissappeared, all the lumps went away all except one....

Then a couple of years later, i get another bruise on my leg but this time, the bruise didnt go away, and i was feel those pains again....and these pains were horrible....to have mucscle pain is one thing, but to actually feel pain in your bones is a whole other ball park...and sometimes I would go to sleep, but to be shortly awaken by the pain i was feeling all through my body....well at 26yrs i went to the drs again, of course he said i was crazy, and every thing else soo i just figured, maybe I was crazy...but then when I was 27, the pain got soo bad, and my legs actually swelled up to the point that I couldnt even stand longer than 5minutes....I thought I was going to die, in a sense I wished i did, because I didnt know what esle to do,

Soo my boss sent me to the E.R and the E.R recommended  me to a Rhuematologist, and then my Rhuemy, did a whole bunch of test, Blood work, urine, and some more blood work...he repeated a few times....and then Bingo, I wasnt Crazy, and I indeed had Rhuematoid Arthiris, plus I found out those lumps i had, plus the one lump i still have, is a Rhuematoid Nodule, and the bruise I had is called Eyrthema Nodosum...soo in retrospect, I wasnt crazy..I just need to find a Doctor to actually take the time, to find out what my mistery Diagnosis was....

***Just hang in there, and get as many 2nd ,3rd or more Opionions that you need until you find the right dr to help you out, and help you manage your pain....

who knows maybe its lupus, seronegative Rhuematoid.....it could be many things....it could even be multiply diagnosis that you may have....

Soo in the mean time..if your dr doesnt listen, find one that does...

I hope you feel better.....and just remmeember you are not alone....

ttyl

BabZ

It is so very frustrating trying to get a dx, isn't it?  For me, the RA dx came after I had my twin daughters.  I suffered horrible joint pain during my pregnancy; ob just chalked it up to being pregnant, even though my feet were so bad I could hardly walk.  Six months after my girls were born, the joint pains continued.  Because my mom had MCTD and my dad has RA and IBD, I went to the doctor; was referred to a rheumy because I do have a positive RA, although it is only  mildly positive.  Rheumy told me I had RA.  My sx disappeared for a while, and then about 1.5 years ago, my joints through my hips, shoulders, and neck went wild.  I limped horribly; I couldn't raise my arms above my head.  I felt horrible.  That's when I found out how truly wonderful my rheumy is because he acted immediately.  I do not have RA (joint pains are not in the typical RA pattern--hands, feet, and wrists), but it is not yet clear what I do have.  All I know is that I respond to the same drugs that most AI patients respond to (e.g., prednisone, enbrel, mtx, etc...).

I should also tell you that I do not have the  horrible joint swelling that goes along with RA.  It is possible, though, to have RA without swelling.  It is also possible to have seronegative RA.  It is also possible to have inflammatory arthritis which is implicated in lots of different diseases, not just RA.  Get  yourself to a rheumy and get checked out.  If you must insist on it with your primary, then do so.  Any rheumy worth his/her weight will give you a thorough examination and will not be so quick to dismiss you based on lab values alone.  They can tell if your joints are inflamed even if there is no obvious redness or swelling.

Elcamino

I also want to add that unfortunately istone...you're in a little bit of a troublesome situation because many times here in the US...rheumatologists will make their diagnoses in respect to how a patient responds to say Enbrel or Humira or steroids. See? Even if they do not have a clear cut idea if it's RA or PsA or Lupus...they will run a course of treatment of these meds & if you show an improvement of symptpms? Then they will put a label on the disease depending on how you do on the meds.
If only you can get into that clinic & start some treatment & perhaps see how you do...perhaps the Dr.s can better find out what's wrong.
I don't see why your xrays that show damage is not evidence enough to get to the clininc. I mean, damaged joints are more concrete evidence than bloodwork because bloodwork can be false positive.

yes baby im in the stupid country with idiot dr.

i should go for long time ago from here but.... i couldnt.

is true they should try to say how i respond to these meds if i got improvements.

so but i cant struggle with these idiots. i know this should be done from the beginning when i got symptoms and before i got damage on my knees and ankles and fingers. now it started on jaws and neck become more and more spreaded.

2 old ladies( i met them on this clinic where they rejected my papers) told me the story about 20 years old girl who died cos they administrated too late strong dose of meds after 2 years when she got positive tests and the girl died . was in the same clinic when i tried to convince these idiots to accept my papers. unfortunatelly here are not open minded dr like in usa, are so narrow minded i hate this country i should go out but how and where? i have med insurance here.

i consulted also private rheum nothing... blind .stupid ...idiots. im sure if i will be there in usa i could solve my problem. tell me what i have to do ? if u would be im my situation?

here is only one public rheum clinic and 1 private rheum hospital 100 euro per/ day plus extra money for tests and care(i think all  could be around 1000 euro) and is out of the city. with these money i can go to usa to get my dx from smart dr.cos there sure i waste my money again isnt?

 

have a nice day big hugs !!

erin.K said...
I also want to add that unfortunately istone...you're in a little bit of a troublesome situation because many times here in the US...rheumatologists will make their diagnoses in respect to how a patient responds to say Enbrel or Humira or steroids. See? Even if they do not have a clear cut idea if it's RA or PsA or Lupus...they will run a course of treatment of these meds & if you show an improvement of symptpms? Then they will put a label on the disease depending on how you do on the meds.
If only you can get into that clinic & start some treatment & perhaps see how you do...perhaps the Dr.s can better find out what's wrong.
I don't see why your xrays that show damage is not evidence enough to get to the clininc. I mean, damaged joints are more concrete evidence than bloodwork because bloodwork can be false positive.

This is so very true.  Marius you bring up a very good & important point.  There are just as many if not more narrow minded (we like to use the term midget minded!) physicians here in the states just as there are world wide.  But there is a difference between physicians who just "don't care" and don't take the time & physicians who in all honesty "don't really know how to deal with certain cases".  Doctors are people too and what they don't know?...is a lot sometimes; that's why it's called "practicing medicine".

Rheumatic and arthritic diseases are particularly difficult of a field...it is more like an art than a science because there are so many unclear answers, no answers, no reasons or explanations and really is as frustrating to physicians as it is to patients.

True, the condition I have manifested for over 10 years.  No one caught it or diagnosed it.  I was even told to ignore it!  So 10 years is a sevrely long time to wait & be in pain & look where I am now? Not doing too well.  It is not fair to me nor anyone who has to go through this...but it is a part of life for some reason.

I hate to say it...but it seems when a person starts developing joint pain and what looks like an autoimmune disease...it is almost a given that there is a few years of waiting and watching that goes between it.

What would I do????  I would call your provinces local hospital & ask for the equivalent of say personnal or a patient representantive or referel center.  I would ask for every single name & address of or a list of clinics, doctors and specialists that deal with autoimmuntiy, rheumatics, and arthritis.  Sort of like a list of referels.  There has to be more than just these few places...even if it means having to travel it would be worth the while.

When I was being treated for Lymes, I spoke to a person who travels to Massechusetts from New Jersey once a month to take his daughter to a physcian up there....and that's almost a 10 hour commute!

It's easy to get upset & angry & mad at everything...but where does this get us? Not far & may only hurt.  Adjusting to this isn't easy either, but it does come with time. 

whatch out this Marius please!

one of these caused my arthritis but which one could be?

i checked my bowels, my infection disease my STD, nothing !could lie dormand in my body and they cant detect it? cos all can lead to RA is scaring me so much!

no genetic factor in my family. please tell me how u treat yourself cos i tried also .

i fast, i eat only veg and fruit i give up diary products, meat sugar.. breads i take omega3, mg, ca ...............swimming, sauna. etc no way to find out or cure this evil

 

thank u for message

 

Table 2 List of the "classical" and "new" arthritogenic agents implicated in reactive arthritis

"Classical" candidates "New" candidates • Chlamydia trachomatis • Chlamydia pneumoniae • Ureaplasma urealyticum • Mycoplasma hominis and fermentans • Yersinia enterocolitica and pseudotuberculosis • Neisseria gonorrhoeae • Shigella flexneri and sonnei • Borrelia burgdorferi • Salmonella typhimurium, enteritidis and others • Clostridium difficile   • ß-Haemolytic streptococci • Campylobacter jejuni • Propionibacterium acnes   • Escherichia coli   • Helicobacter pylori   • Brucella abortus   • Calmette – Guerin Bacillus   • Leptospira   • Bartonella   • Trophyrema whippelii   • Gardnerella vaginalis   • Giardia lamblia

 

 

 

 

 

 

Marius123 said...

istone said...

yes baby im in the stupid country with idiot dr.

i should go for long time ago from here but.... i couldnt.

is true they should try to say how i respond to these meds if i got improvements.

so but i cant struggle with these idiots. i know this should be done from the beginning when i got symptoms and before i got damage on my knees and ankles and fingers. now it started on jaws and neck become more and more spreaded.

2 old ladies( i met them on this clinic where they rejected my papers) told me the story about 20 years old girl who died cos they administrated too late strong dose of meds after 2 years when she got positive tests and the girl died . was in the same clinic when i tried to convince these idiots to accept my papers. unfortunatelly here are not open minded dr like in usa, are so narrow minded i hate this country i should go out but how and where? i have med insurance here.

i consulted also private rheum nothing... blind .stupid ...idiots. im sure if i will be there in usa i could solve my problem. tell me what i have to do ? if u would be im my situation?

here is only one public rheum clinic and 1 private rheum hospital 100 euro per/ day plus extra money for tests and care(i think all  could be around 1000 euro) and is out of the city. with these money i can go to usa to get my dx from smart dr.cos there sure i waste my money again isnt?

 

have a nice day big hugs !!

No Iris, you're wrong.

I've read so much stories about 'stupid' docs in the US too, I've heard about from my friends been in the US. Even more, look there was a case on this forum with a man on my age who has had pain  in the joints for 5 years and even te sticle pain nor a test has been done to him not a even single elementary blood test, nor a test for STDs - Nothing for 5 years - complete zero from his GP. You know, it may has a crime ending, like untrated syphilis, chamydia, HIV etc, which may result in realy bad complications if left untreated. And noooow...prepare yr self and look at this thread: https://www.healingwell.com/community/default.aspx?f=6&m=651735. Why don't you ask Erin with her having Lyme disease undiagnosed for 10 years? Here... I mean there in the US? Why don't. That's why people whishes health to each other. On my language 'cheers' is 'na zdrave', which means 'be in good health' directly translated.... When  the health is affected sometimes only god can help. Docs are powerless sometimes. Iris, i've spent year and a half trying to find what's wrong with me. All my health probs have started after in fection in my case. Unexplained fevers, red eyes, joint pain, rashes, pain on ejaculation, even penis rash. No a doc has suspected that I may have prostatitis unless my joints started to hurt. 2 years later infection is already cured long time ago, I still have the above symptoms. Do you ask me what I've been doing? Doc after doc... some insurance  covered others on private..same like you.. nobody could give me a sure progonosis. No body can put me a SURE diagnosis. Even this one - "reiter's syndrome" has been put into doubts. You mentioned above about hla b27, just imagine -  I've examinated all my HLA antigenes, I even learnt them by heart!!! Imagine how far in my own madness I've gone. Nothing gave clear answers what's wrong with me. So what I finally did? I did start to treat myself with natural remedies. I've stared to read for my disease. Started to work on my immune system with immune modultors, changed life style. And there is an effect (I think, i pray 4). So if you are one way or another left without immune-suppresive (or any kind) of therapy by the docs 4 now, why don't you try the same approach as me while waiting for 'their' disease to 'develop'. I'm saying this because this is doc's favourite saying when it's about rheumatic disease. They waits the disease to develop, in order to put a proper diagnosis... ;(  Not by an accident I've asked you previously whether you 've done on yrself all possible STDs tests? They are common arthritis causative agent for young adults. I remember you told me that yr joint damage is not seen on the X-Rays? May be this is one of the reasons they cannot put you SURE diagnosis?! I also don't have damage on the X-Rays.

So forget about that the docs in your country are bad, the docs are good, but the simple M Y conclusion is that the docs still knows nothing about these kind diseases and this is not only in yr country this is everywhere in the world... ;(