Hardest #rheum Question From a Reader: Where Do I Go From Here?
Your comments, I’ve said, are a special blog in themselves, rich with insight and passion. Let’s talk about a recent comment by Paul on What’s Your First Symptom of Rheumatoid Arthritis:
Hi All , my nanna was critical with it my Mum has spur’s on her spine her fingers are twisted and knarled and can’t hardly walk and is in so much pain poorlove , I have know turned fifty my fingers are now starting to twist my joints in my fingers are painfull my thumbs feel if they have been pulled out of there sockets I can’t do much Manuel work with my hands without realy suffering for days after with pain , I’ve been to the doctors he looked at me if I was waisting his time after going back 3 times he reluctantly sent me for an xray I rang up after a week and was told it was negative please tell me were do I go for here .
Thank you for writing your comment. It seems like it was difficult for you – that’s something people don’t think about, that typing and other things are hard for many of us.
I’m sorry your Nanna and Mum have suffered so much. It’s another thing people don’t realize, how many of us have watched loved ones suffer or die from this disease. Personal experience gives us unique insight and perspective about rheumatoid disease (RD) and treating it.
“Where do I go (from) here?”
Paul, would you believe THIS is the question most people ask when they write to me? It’s probably the one question that could sum up why people come to this site: WHAT DO I DO NOW?
I wish there were an easy answer. I wish all doctors could recognize all rheumatoid disease at every stage. I wish every patient could get a test such as an expert musculoskeletal ultrasound (MSUS) and doctors could see with their own eyes the inflammation causing symptoms you describe. Most of all, I wish there were a guaranteed way to make your symptoms better!
No doubt, if rheumatoid disease were as easily treated as a broken leg, you would’ve been helped by now. But it’s not:
- RA / RD is not properly understood
- Treatments are complicated, chancy, and costly
So, despite guidelines and recommendations, diagnosis and treatment of RD are still matters of professional opinion. There is very wide variety in how people with rheumatoid disease (PRD) are diagnosed and treated. Many do not receive recommended care, or like you, have left a doctor’s office receiving no help at all.
What can you do now?
I hope readers will give their suggestions below.
Here are a couple of my ideas:
- See another doctor for a second opinion. Ask to see a specialist who sees rheumatoid disease patients every day. Some rheumatologists mostly see arthritis patients (osteoarthritis).
- Ask for an MSUS of all affected joints. Depending on your location this could be easy or impossible. The operator should have done 100’s of diagnostic ultrasounds – NOT the same training for merely guiding injections.
- See an orthopedic doctor to treat specific joints that are giving you a lot of trouble. Physical therapy, injections, or even surgery may eventually be options.
NOTE: PLEASE READ the recent post about the “$10 tornado” my Uncle is raising for our legal emergency. If you have already donated, please SHARE the link with everyone you know. Every $10 or SHARE helps get closer to the goal.
Read more Warrior about “Where do I go from here?”
- The 10 Fundamentals of Care for Rheumatoid Patients
- Musculoskeletal Ultrasound in Rheumatoid Arthritis: Training Is Essential
- Ultrasound for Seeing Invisible Inflammation in Rheumatoid Patients
- Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity
- Where Is the RA Help Button?
NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.Kelly Young. All rights reserved.