No Sympathy | Arthritis Information

For me... I am sitting here crying with frustration right now. Hubby's at work and my mum and dad, as much as they feel bad for me, just won't believe I have RA - even though I have very slowly and pointedly gone over the symptoms and how I have them. They keep saying 'well I just don't think that a qualified expert in his field would make a mistake". I've had - did you sleep funny? It's your mattress - you should go to the dentist (when it gets my jaw) everyone's a bit stiff in the morning (a bit!) and now the worst - maybe you're going through the menapause early!! - I said and how the hell can that have all the symptoms of rheumatoid arthritis and they were like 'well it might'. Then I said 'look I'm sorry you don't believe me but I feel that I do have it and the Rheumy has made a mistake' and they said 'well you'll just need to deal with it if you have, I mean you're not too sore today are you - maybe it'll go away. Can everyone who reads this just join me in a big scream of annoyance - even if it's just in your head because I know you'll understand. I feel like picking up this monitor and dumping it on their feet, cracking their knees in with a shovel and making them sleep on a bed of nails for a week and then saying - oh you're not too bad - deal with it. I'm so sorry Julie. It's not fair to be treated that way. I wish I could come over and give you the biggest hug you can handle!! I don't know what I would do if someone suggested to me that this is all in my head That made me laugh - I knwo exactly what you mean - you just want an end to it all - its like every day that I have the pain in my feet I think (and I know this sounds a bit over the top but ) I think RA is like battery acid and it's eating my feet bones away and I have no meds to stop it. I feel like goldie hawn at the end of death becomes her - I've got so panicky I worry when Austin pulls my fingers I'm like aarrgghh don't touch cause I'm scared it'll snap the tendons or something - Maybe I should go get a big case of cotton wool to wrap myself in for a while

Hey Julie,

I understand!! I have no dx either-I can't even get in to see rheumy until Sept. 27th, although GP did bloodwork a few weeks ago that all looked "normal". When I first started having the all over joint pain my hubby asked me too if I could have slept funny. And my mother asked me if it could be from NOT exercising (before the pain I was actually a step aerobics instructor). I knew my husband had no grasp of what I was going through when he said "We need to have my department over to the house for dinner or something". I tried not to freak out but calmly said I am just not up to that right now and then he was like Oh-of course-yeah that's OK. In the beginning when they made those comments, I think they were just trying to calm me down, you know, to think of something simple it could be. They are much more understanding now-my hubby has been helping me do everything and my Mom has been here all weekend helping me clean, do laundry and take care of the kids. I mean, she has been amazing. Still, I have come to realize that they don't fully understand and that is not really their fault. Only people that have gone thru something like this (even if it isn't RA but something else) really understand. That is why this website is so helpful. I hate to admit that I had no idea what RA was before and generally thought of arthritis as aches and pains that old people get. Not anymore!!

Remember too-Dr's are not GOD, they are human, they make mistakes!! And you know your body better than anyone else!

Where do you stand in your dx? Are you going to try to go to another dr. or what did the rheumy say he thought it might be?

God Bless and hope you feel better!

Jenn

When I first had symtoms I was 32 and our son was in kindergarden. I worked from 5pm til sometimes 5am at Toys R Us...came home from work, slept an hour or so, got our son off to kindergarden, then had to pick him up at 11am as they went half a day. Then when 430 came my husband took care of our son.

At that time I was crawing to the tub in pain, taking aspirin, tylenol, ibuprophen anything to take the pain away. It came on really fast after it hit my hands, then went to my knees, ankles etc.. My husband thougth I had the flu.. I was diagnosed fast...started right away on depo medrol shots and it took most of the pain away. Quit my job... I accepted easily what I had...I don't remember being angry or anything.....and I wasn't getting my grief from anyone after that "oh you just have the flu stuff". If I did I'd tell them to stuff it.

Julie,

Sorry to hear that your parents aren't supportive,my very first bloodwork showed everything normal-even though I had 3 weeks of severe pain in toes and fingers,it felt like vise grips were squeezing them.I went back again after a week and told Dr. something is wrong-no xrays or more bloodwork ,just checked my feet and hands and said I think you have a little arthritis-take Osteo-bi-flex(glucosamime chondroitin)I asked for something for pain -he said they Osteo-bi-flex would take they pain away.NEEDLESS to say I switched medical offices,my regular Dr you could never get in to see,so I had to see this quack.I went to my hubby's Dr.He did bloodwork-and xray-both showed bad inflammation at this time a few days after the quack.By this time wrist, fingers,knees,ankle,and feet,both sides of body,He tested for Lupus,and Lyme disease-both were neg.He told me its RA-and had me in Arthritis Assoc. within a month-he did every test possible-showed positive parvo-virus,inflammation high-neg on RF-both have it.I hope you stick with it and get another doctor ,I am glad I went to see hubby's Dr. and got the care to start protecting joints-even when you start seeing RD it is still a long process to start feeling better,good luck Sherry

I remember all that confusion. I went for two years with intermittant pain, jumping all over the place. For two days, it would be in my one hand, go away, come back a few days later in my other hand, then move to my shoulder for a couple of days, couple days off, next shoulder the next weekand so on and so on. Then I had quite a long time without any pain, or tolerable pain no flares. Then bam!! It came in my hands and feet, and wouldn't go away, then my knees...I knew I was in trouble then. At first they thought it was fibromyalgia but I never had 11 of the trouble spots that they test for so they said it was palindromic rhuematism which could possibly turn into RA and eventually did.. but damn I remember all that confusion BIG TIME. What made them finally realize is I had a huge tendon flair in my wrist and they called it tenyocynovitis and I had an ultrasound done and that confirmed it along with bloodwork and they started me on proper treatment. I just take MTX right now and going for all the baseline eye exams now so they can start me on plaquenil along with the MTX. I am a little scared of taking the plaquenil as it can cause problems with your eyes thats the reason for all the eye tests. I have my final eye test tomorrow then if that's ok, I supposed to start taking plaquenil....oh god....all these pills....but if they help and stop or slow down this dreadful disease then I'll be a good girl and take my medicine. Anyways, I hope you get answers soon....concrete answers, so you can have a little peace of mind. Good luck to you. I understand about the no support thing, I don't get much of it either. I get ... what do you mean you can't lift that and hold it for me....sheeesh!! All I can say is thank god for this board and the people I have met here...and thank you all very much from the bottom of my heart! Jackie.The first time I went to the ER before diagnosis I was barely able to walk, the ER doc sent me home and said to take some Tylenol Julie, I hear you! I'm a year into this and my blood work is still good. My rheumy doesn't thing that this is too unusual. He's very experienced and has "seen it all". Like Roxy, I had a trip to the ER. I almost had to be wheeled in and couldn't undress myself. The ER doc was young, but understood the pain I was in. He gave morphine, antibiotic and cortisone. I walked out a couple of hours later, still in a little pain. This was about 3 days after my first visit to my rheumy. So...blood work 3 days before the ER trip was normal! And it still is! Very frustrating. You are not alone, please hang in there and take care.

Mike

Julie I sooooo know your frustration.My parents don't even know I have been sick.I have never gotten any sympathy from them despite all the things I have gone through as a child,an adult and a mother.I don't even tell hubby how bad I feel either, not anymore.I would rather keep it to myself than be rejected.Rejection hurts so much.I come here and share my feelings and talk about how bad I feel.You guys know more about what I have been going through than anyone in my life.I will share in your scream of frustration......

Hang in there,
Sheila

DO you all so not wish we all stayed next door to each other - although I'm starting to feel like we do anyway. yea i sure do julie that would make this all a lot easier. even if we did live that close we'd still prolly use the message board
Julie-I'm so sorry to hear what you are going through
with your family and doctor. That can be so
discouraging. When I had my first bad flare up,
hands & wrists, I was in extreme pain and could not
even move them. I have never been so swollen
before. Work and I thought at first it was due to work
and the workers comp doc gave me some great
hand braces to wear.

I remember telling my family and I think they thought I
was just making it up. We all got together at
Christmas (my stepmother had recently passed and
this was my dad's firt christmas alone) for about 3
days. I had to carry my suitcases on and off the
plane, as they thought I really didn't need help.

I hurt so bad I could barely get up and showered. My
sisters kept going out walking and doing things and
when I said I couln't go they would get mad at me
and tell me to toughen up. But even just trying to put
my coat on or open and close the door killed me.
I felt so alone.

A few months later I received my diagnosis and,
because my dad had 2 sisters very crippled with it
that have since passed away, he knew a little about
it. Now their attitudes have changed and they are
very supportive. It makes so much difference.

I hope that your family will understand soon and also
that you will be able to find a ne RD. When I first saw
mine, the only thing with my blood test was a sed
rate of 94. He did most of his diagnosis on
symptons and physical exam. It wasn't until about a
month later that my tests showed the CCP marker.

So hang in there. I will be praying that your family will
open up their eyes and start to understand.

Take care,
Tara
Tara L38592.4961805556
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