Comments on: Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity

By: Kelly Young

Kelly Young — Sat, 23 Oct 2010 17:54:29 +0000

I understand why you’d say that Betty. Let’s keep that part of the message before us & keep talking about ways we can accomplish this. If anyone reading hasn’t seen them, they should check on the Tags List for RA Awareness & see the posts about that – and the MANY comments there. Great ideas from readers.

By: Betty Lee

Betty Lee — Fri, 22 Oct 2010 22:52:18 +0000

I just want to say that when I do tell people about me. I always tell them I have Rheumatoid Diease. I don’t like saying I have Rheumatoid Arthritis.

I think it is very important that Rheumatoid Diease be named just that RHEUMATOID DIEASE. I hope that within time and getting the word out people will come to understand this diease and what we go through.

By: Kelly Young

Kelly Young — Sat, 09 Oct 2010 04:45:33 +0000

Hi Stephanie. I love this! You said “I am a very nice patient” “with a high pain tolerance” – I have only met you here & on email & I knew that about you! I know you hate to whine -I’m the same. Please make sure you have pain relief if you need it – it has been a hard lesson for me. That woman needs to be educated – that reaction is too typical. Hopefully, we can build momentum for awareness.

By: Stephanie

Stephanie — Fri, 08 Oct 2010 13:50:51 +0000

Hi Kelly, thanks again for this wonderful website. I feel blessed to know that I have a good Rhuemy. She listens, touches, and asked questions…I too am seronegative, but she informed me that many of her seronegative patients have a worse time than than her positive patients. So she is very understanding. I too, am a very nice patient, with a high pain tolerance. I hate to whine…and so therefore I come across differently. But people do not understand RA. If you try to explain, they really don’t want to hear it. I was in the locker room after a swim, and a young teacher was in there. She noticed my hands were swollen. I told her I had Rheumatoid. She said “what is that?” I tried to explain to her, and as soon as I got the word arthritis out of my mouth she said oh that and changed the conversation…. So I find it easier to grin and bear it!!
Thanks again Kelly for all that you do!!
Best Stephanie

By: Jackie

Jackie — Sat, 26 Jun 2010 18:53:21 +0000

Sorry you’re hurting. I can type rather clumsily, but can’t even sign a check because it hurts so bad to write & I keep dropping the pen.

By: Kelly Young

Kelly Young — Sat, 26 Jun 2010 18:13:51 +0000

thanks for the funny and helpful comment Jackie. typing w/1 finger right now. lol.

By: Jackie

Jackie — Sat, 26 Jun 2010 17:28:18 +0000

I worked many years with a major health plan, so I’m not convinced (yet) that my doc is being difficult. I think he’s driven by the need to justify tests & referrals with documentable symptoms for insurance purposes. Sadly, some conditions are square pegs that can’t be pounded into the round hole of diagnostic criteria. Docs who “overtest” or “over-refer” are undercompensated or dropped by health plans.

Thanks to another of Kelly’s posts, I’ll snap a photo the next time it looks like I have boiled eggs under the skin of my wrists, and sausages for fingers (breakfast, anyone?)

In my brief experience, pain, fever, heat, tiredness precede swelling. Then the swelling subsides first. So by the time I see my doc, he can’t see me in all my lumpy glory. I have other complicating factors too – I never run a fever, normal temp is 97 due to a thyroidectomy; I have a really high pain threshold so I’m bad at articulating pain; and of course, I have a charming personality, so “Alert Patient Symdrome” is an issue. LOL

In my case, perhaps a picture really will be worth 1,000 words.

By: MichaelPatterson

MichaelPatterson — Sat, 26 Jun 2010 04:35:02 +0000

I think your “Alert Patient Syndrome” is all to real. I have a tendency to be polite and joke etc. which I think leads them to think I’m not as bad as I say…and you are right on when you say that you have been you for 50 years or so… I’ve had similar concerns, when I talked to my doc about my swollen middle finger way back when, she thought it was just a sprain. After several reminders from me, she sent me to a hand surgeon, who told me the finger didn’t concern me. What concerned him was that I had no idea why it was swollen. “if you did something to it, I’d think you would remember”. Months later when more than my finger was swollen beyond belief, I went to the ER and was dx within ten seconds of the dr walking in the room. (of course blood work confirmed, but he knew right away – as I suspected, something more was going on) So don’t give up, keep searching for answers!

By: MichaelPatterson

MichaelPatterson — Sat, 26 Jun 2010 04:19:34 +0000

“24/7″ that’s exactly it Kelly, they’ll never see it….if they don’t listen to us and trust us, we’ll never get recognition of what’s really going on.

By: MichaelPatterson

MichaelPatterson — Sat, 26 Jun 2010 04:16:32 +0000

This is right on, I know my former rheumy has always assessed my pain, or should i say severity of my disease, based on the amount of swelling I had at my appointment. This is quite bullsh** because, as I’m sure many of you can recognize, our swelling can be horrendous one day, and look not too bad the next day (seems as if every visit I was not swollen much). Doctors should definitely LISTEN MORE TO US…