I got a letter today about one of the most important issues we could discuss. I’m introducing a new tag: Comprehensive RA Care. It is vital to our living healthier and longer lives and more than one blog post can cover.
Putting it as simply as possible, it is now known that Rheumatoid Arthritis is a systemic, progressive, destructive disease causing systemic inflammation and attacking joints, organs and other tissues. Ignorance of this fact creates problems for RA patients with relationships, employers, or insurance. We know that this ignorance often results in RA being misportrayed or even slandered by the media.
However the greatest problem with ignorance of RA is that its widespread effects on the body often continue unidentified or untreated.
We often see patients ask one another specific medical questions. There is an enormous need for medical information, solutions, and treatment for the myriad problems related to Rheumatoid disease. People ask, “Who should I call?” “Who will help me?” and “How do I know what I need?”
- What can I do about my jaw, neck, or other joints that are being affected when my doctors say it is atypical, unlikely, or impossible?
- Who can coordinate all the various specialists that I need to see? How can I get them to communicate about my care?
- Who will answer questions such as which over the counter medications are safe, which immunizations are appropriate, when to discontinue RA treatment before procedures or during antibiotics, etc.?
- How do I know which symptoms are caused by my RA or who to call when I have new symptoms or side effects?
- What kinds of tests are best to catch serious problems early?
- How can I get good emergency care for concerning symptoms or side effects?
- Where can I get adequate pain relief?
- What is the protocol for infection or other illness?
- Who will oversee care for my heart, lungs, eyes, GI, skin, or back problems when RA-related?
- I have strange symptoms that no one discusses with me. How do I know whether RA is affecting my veins, arteries, or organs?
- This is NOT a comprehensive list by any means, only illustrations.
Some rheumatologists provide care for some of the things on this list, however most people with RA will meet each one of these questions at some point. Too often, they will not find a timely or accurate answer. Most do not know the answers to these questions because clear answers to these questions do not necessarily exist. We could consider the heart as an example, but dilemmas exist with many other matters. While select cardiologists study specific ways that RA can affect the heart, most are unaware that an association even exists.
Back to the email; the letter was typical of many I receive:
- Like most of us, the sender used humor. “Which doctor or Witch Doctor do I call?”
- She described a lifetime of symptoms related to RA, but not identified as such. Ignorance of RA left her waiting for answers.
- With mysterious hives, her doctors tell her to call a different specialist.
- She worries about heart palpitations and GI problems.
- She considers that her Enbrel treatment is working because her pain is reduced, despite other symptoms.
- She thanked me for validating her symptoms so she doesn’t feel “crazy.”
My frustration is that there doesn’t seem to be coordination amongst doctors. My primary care doctor isn’t the right person for this. I tried using him years ago to coordinate my thyroid issues and he always seemed “surprised” that I was still symptomatic even though the blood tests were “within normal range.” The fact that I’ve shuffled from one specialist to another for over 20 years and no one ever caught on to this RA makes me mad. I even went to another doctor for a physical about 10 years ago and said, “I feel like an old lady in the morning and these things hurt …could I have RA?” and she said, “sure sounds like it could be” and sent me to a rheumatologist. He, of course, found nothing – just said I had “myofascial pain” and offered to do trigger point injections. Since I’m not RF positive, I guess that’s why no one thought I had that…but what they thought I had is beyond me. I go to a good rheumatologist now – but I still feel unsure of what her “realm” is. The Enbrel is working – pretty well – my movement is better. I still have problems with joints, which she said is due to the fact that there has been damage there from having gone so long without being diagnosed. The fatigue, although way better…and I mean way better (the day before I started the Enbrel, I was a lump on a chair – so out of it) – I’m still challenged with the fatigue though. This has been a bad week (headache, hives, fatigued – not sleepy, just in this fog and my body just has no energy). So I’m not sure who to call.
Everyone expects a person diagnosed with Diabetes to require various specialists and be monitored for various complications. Even though some of the secondary diagnoses are as common with RA, routine referrals and screenings do not typically take place. We must see an evolution in RA care as well.
- What’s Your Advice for Shoes for Rheumatoid Arthritis Feet?
- What’s the Big Deal about Rheumatoid Disease?
- You’re Cordially Invited to Make SWEET MEMORIES with Other Warriors & Friends!