Comments on: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?

By: Judy

Judy — Wed, 09 May 2012 11:16:02 +0000

I can only read..and nod my head. I work full time and am always in pain of some kind. I get up extra early to help with the stiffness, sometimes soakingin a warm bath. The fatigue is bad, I get so mad when I come home from work and sit down, I am done for the day..or fall asleep.
Tho each day I wake up and thank God for a new day, the blue sky and the sunshine and hope it will be a good day

By: terry campbell

terry campbell — Sun, 05 Feb 2012 17:09:42 +0000

Thanks for putting in writing the facts that only ra folks know. I wasn’t aware of the usage issue, only that repeativive use caused a flare. I was fortunate with my first rheumatologist in that he asked me all twenty questions but I was still in shock over the dx. Thanks for the post.

By: Marie

Marie — Mon, 19 Dec 2011 19:25:53 +0000

I know just how the author feels! I had to find out that most of my symptoms with RA were ‘normal’ and that they were actually connected to the RA from my lovely friend. It can be scary and it doesn’t help when you are told by your rheumatologist that a muscle spasm is no more painful than cramp!!! or when your doc ups one of your meds, which then makes you fall over in the street and then your rheumy tells you that was really dangerous and was why you kept falling…(and even more breathtaking when you find out rheumy n doc are husband n wife!!!)

By: Lisa in KC

Lisa in KC — Wed, 09 Nov 2011 13:19:27 +0000

Marilyn — please find a more compassionate doctor who really wants to help you. I was blessed with finding a good one on my second try. If you know other people in your area who see rheumatologists, ask about their experience, but please, don’t accept being treated like that. I also hope you will consult with an attorney about the discrimination at work.

By: Kelly Young

Kelly Young — Tue, 25 Oct 2011 16:30:02 +0000

I think you’re right you have enough to worry about with your lung situation. RA symptoms can vary so don’t necc. expect to get every one of them – I’ll be praying for wisdom for your doctors in your care.

By: Sharon Leishman

Sharon Leishman — Tue, 25 Oct 2011 15:41:47 +0000

Thanks Kelly for your reply. So far I don”t think I have had those symptoms but lots of pain and tiredness. I’m still learning what to expect. My biggest issue is the attack on my lungs and what will come next.

By: Kelly Young

Kelly Young — Tue, 25 Oct 2011 13:34:45 +0000

Sharon,
the flu-like symptoms that can happen with the over-active immune system of RA would include fever, aches, tiredness & fatigue, swollen lymph glands – the same things you might experience with a flu virus.

By: Tracy

Tracy — Tue, 25 Oct 2011 04:02:53 +0000

Hi Marilyn
I am also from Buffalo ..and I have RA as well..I dont know who you see here in Buffalo ..but I go to Buffalo Brain & Spine ..on International Dr in Williamsville .off Sheridan Dr
Anyway..I see Dr Ralph Argen ..he is my primary Rheumy Dr ..but I mostly see his PA Kelly McGranor ..and she is awesome & amazing and she “gets it”!! I love her ..very very compassionate ..understanding ..and she listens and is willing to try dif meds out if I have problems with others ..I pray she never leaves the Practice because I would be lost …Again a very good and caring PA !! I prefer her to the DR.!! lol hes a little more gruff ..good but gruff ??
Also Concerning this post about Usage …I also have this same problem ..but my biggest frustration ..is the people around me (loved ones ..co workers ..family ..and close friends…who completely know what Im going through ( by me explaining it ..or giving them lit) why is it that none of them ever ever ask me how I am doing ? they never call they never offer help ..they never ever ever EVER ..ask me what it is exactly that I go through ?? What it feels like to have RA ..what does the pain feel like and how bad is it ?? NEVER ??? does any one else experience this ?? It hurts so deeply ..I stopped talking about my RA years ago ..because I have said to them ” I am always in constant pain..everything I do do I do IN PAIN ..(because if they see me go somewhere or see me doing anything..they think Im cured ??) …They will never know how much it hurts me so deeply ..that they just dont seem to care ?? I did an RA walk last May ..NO ONE came to walk or help get extra donations ..I begged and pleaded… a couple family members gave a few dollars ..but really just gave online and then never asked me a thing about my walk ..sadly there were only about 100 people at the walk I did ..then a few weeks ago I did the Breast Cancer awareness walk for my sister in law (because my Mother in Law died to breast cancer ..there were thousands of people and all my in laws came and they raised 5,000 dollars ..I just dont get it ..I guess they just dont care about the living who suffer horrifically ..maybe they will care more after Im gone ?? Just wondering if anyone else has un caring loved ones like this who are completely silent to you about your RA ??
<3 Tracy

By: Sharon Leishman

Sharon Leishman — Tue, 25 Oct 2011 02:24:22 +0000

As I was telling my boss about my RA, I fell asleep. I woke to her hand on my arm and her telling me that they couldn’t have that. Worked there for 16 years and never fell asleep before. Now I had an illness I was confused about, didn’t understand and little support at work. I did have a coworker who would wake me when I’d doze off and I always took coffee and apple juice to work with me. I had good days and bad days but if I was busy the days were better. I was afraid I would be fired if I fell asleep. I was always tired when I got home. On a side note, what are the flu symptoms some of you talk about?

By: Sarah Miller

Sarah Miller — Mon, 24 Oct 2011 17:55:37 +0000

Wow! Kelly, you are so right. When I was first diagnosed with RA I just didn’tell anyone what was going on with me,I figured it was just my weird body or I was a whimp.I had to go lay down so often,it was just a way of life for me. My older brother who has never been sick told me to just exercise more. I told him matter of factly that he didn’t know what he was talking about.I can’t go out on errands for very long at all and I probably have to go lay down afterward if I do go out.My dear husband goes to the grocery store more often than I do.