Remembering where you came from in the fight with RA

Hi Holly,

I really enjoy reading your posts and thought today's was so relevant to me.  Thank you for remembering and sharing what you had to go through to get to your diagnosis also.  Unexplained, undiagnosed pain and illness is a sure recipe for crazymaking.  I felt so crazy and like a hypochondriac.  Even after my diagnosis which was somewhat of a relief except that my Doctor is very unsupportive and gave me no sense of hope or coping tools.  That is when I turned to this web site and it has been a tremendous help.

I loved your letter to Newbys, I can't tell you how much it helped me to have you put into words exactly what I have been feeling.  I finally felt that someone gets it.  I thought, wow, she has a hidden camera in my house and knows how hard it is for me to simply get out of bed!  This is a shameful secret I have kept to myself.  I am at an 8-10 on the pain scale daily since the car accident last May and then RA flare in Sept.  That is 9 months with no remission.  The depression and anxiety that accompanies the illness is oppressive. I feel like a burden to my family.

I have had so many battles to overcome in my lifetime.  The last one was in 2005 when I survived a violent crime.  I barely survived that and have never been the same since.  I now feel exhausted and have lost my will to fight anymore.  I know I have to for my children's sake and hope that I can find it again.

jamie

Holly. i two had rough patch with Drs trying to find out whats was wrong. The Drs did some unusual tests and told me i had polymyositis. had all the symptoms and saw neurologist, he agreed. then more symptoms popped up and had many more tests and new Drs. they never said i idnt still have polymyositis but i dont think so because i would be unable to walk anymore.  and the rhuemy dx me with rheumatoid arthritis/lupus. it all makes sense. it started while i was struggling with worse case of ulcerative colitis i have ever had in 20 yrs.  had some unusual things happen and i fell when i got up at night. thats what started the ball rolling down hill. ended up in hospital on and off for 3 mos. i battled with Drs not for sure what was wrong, many tests over the year and so much in medical costs. my insurance even dropped me and i ended up with an unbelievable medical bills. hospital sued me 9cant disclose that case) anyway, the hardest thing was me thinking everyone thinking i wasnt that sick. i cried so much to myself and broke down a lot. i was just glad to have a diagnosis to put on all that i went through. Still many of my friends and family still dont fully get it. yes i felt like i was lying to everyone because i didnt walk around telling all abt my pain. again i say, everyone thinks because if you are walking around and look ok , you are not that bad. looks are decieving.  my husband says i should write a book of all my experiences over past 20 plus yrs. but i think it might be depressing.  i still laugh and have good times, i just live differently then i did before. i thiink we should all use our trials for good and hope to help someone out of them. so thank you all for your stories, it helps!! Colleen

Petty? I don't agree.  They didn't even test you for RA, then told you that it was all in your head? I think the comment you made was quite restrained under the circumstances!

Thanks for sharing your story.  It's a good reminder that we're all fighters.

Hi Holly and everyone, thanks for reminding me of the struggle i endured for 11 months trying to figure out what was wrong with me. 2007 was not a good year, and basicly had the same experiances as you. It took a toll on my sanity being told it may be all in my head. I also never went back to my primary care doctor after i was referred to the rheumatologist. During that time i began to have panic attacks when i would show for my appointments with my primary care doctor. I would write letters to the doctor asking them to please help me and i would try to give them as much info as i could. I felt as though i had to advocate for my own care. This all left me so scared and alone. I was to the point that i was barly able to take care of myself. I had my friend call me everyday to make sure i was still alive. I remember being relieved figuring out what was wrong with me and how all the pieces of the puzzle finnaly fit together. Within 12 hours of starting predisone i had a major improvement in my pain and mobilty. It has been a struggle but it helps to gauge my progress by thinking back on those days and relizing how far i have come back from the dead.

Hi Holly,

Thank you for sharing your pre-diagnosis story.  I'm sure that the number of us who end up with Rheumatoid Arthritis or any other autoimmune disease have a similar story to tell.

I especially relate to your story.  The major difference is that I was definitely diagnosed with multiple sclerosis and later rheumatoid arthritis.  In the years that RA was beginning, we were looking for lupus or hypothyroidism.  Looking back on blood tests, I should have been referred to a rheumatologist then.

But now that I'm on treatment, things are much better and I'm not waking up screaming/crying in the middle of the night anymore.  RA certainly is no fun and I have some crooked fingers to show for it.

Hi, Holly

I couldn't help but to feel like you were speakin for me when you told your story about being diagnosed with RA. I too had to deal with the pitfalls of soooo many docs not knowin what was wrong with me. Your story...related so closely with my struggle. I have been dealin with this sickness for over 2 years now. I was just diagnosed the end of Jan. of this year. Your story truely touched me. I couldn't help but to let the tears roll down my face as I read this article. I just wanted to thank you for tellin your story because there are times when you do feel crazy or you think," is something mentally wrong", because these doctors can't find anything wrong...but then again you know how excruitiating it is for you...not even being able to get out of bed...feelin like your 90 years old, stiffness, swollen hands, feet, an horrible achy body, tingly-numb feelin in legs or hands, and I don't know what else...the list goes on. It actually felt pretty good in a weird way to get a diagnoses because then I knew the name of what disease was causing me so much pain. I still am dealin with the struggle and visiting the doc every week to see how these meds are going to go for me. However, I know that the fight is on...and I'm going to fight to be an active wife and mother. I'm only 28 with 4 kids....I've got to much life to live for.

~All things are possible through Christ~   Thanks Betty Sorensen

Good for you!!!  I have not been diagnosed yet.   I too am going to be sitting in the rheumatologists office in a couple of weeks.  My grandfather had it, and I feel I have it too.  My hands are becoming more useless every day.  I walk like a 100 yr old person when I stand up and I am only 46 years old.  Worse yet, I am a court reporter.  I am the main bread winner for my family and things are turning from bad to worse as far as the mobility of my hands.  Please pray for me........And congrats to you..... Do you feel better on the meds or not really??