Sorry for long topic… Couldn’t find a way to articulate my frustrations at doctor’s, and I have a few now, ie., Rheumatologist, dermatologist, Ortho, pain management, gastroenterologist, eye doctor, etc. It’s exhausting just writing it out. My joints, like my knee and ankle are just shot. I have such difficulty walking now some days, and it just doesn’t seem to be urgent or a big deal to any of my doctor’s. My quality of life sucks at times. I have actually been told that the insurance requires them to treat one joint at a time. I know that is ridiculous and not true! I have requested a new doctor. My treatment just takes forever, or I should say, the getting of treatments. I clearly have damaged joints, not all, but many, and some worse than others. Right now, my primary is on a leave of absence, and her office has fallen apart. I need a refill on topical cream for pustular psoriasis. And I’m waiting over a week now, for medicine I’ve been taking. I was asked to come in, which is very difficult during a flare up. I went, and everything was ok. Nurse was calling it in, and new referrals being handled. 8 days later, nothing. I’ve called the last 4 days. I’m over it. I so don’t want to start over, but looks like I must so please any advice on how to wrangle this with new docs? I will try to keep my rheumatologist, but not so easy in this US insurance system. Thanks for lettinge dump.
Hey @littlestar. I’m so sorry for you. Maybe things will work out. My problem is, I guess, I don’t have enough doctors. Crazy as it sounds. My pcp has been my gyno for years. She’s referred me to the other specialists that she thinks will help me. My rheumatologist had mentioned referring me a dermatologist but hasn’t yet. I feel that may be a next step for me. I’ll ask him about it my next appointment, Tuesday.
What if you suggest to all your docs for them to confer about your care? Explain to a couple or three what’s going to with you and your concerns. Idk if it will help but it may be worth a try. Praying for you.
Totally understand your frustration as I am experiencing the same thing. Diagnosed earlier this year and very disappointed in inability to find someone to coordinate my care. My rheumatologist appears to be good, but will address no issues that aren’t joint or pain related that are obviously related to meds or maybe disease progression. For the first time, now having stomach and intestinal burning so have to find another doctor to discuss that with. Having sleep problems so need to get with GP because rheumatologist doesn’t deal with that. Every new doctor means additional medications. I have been so amazingly healthy for years and now something new pops up every week. Would love to find someone to coordinate care!
Thank you both for writing me. Yes, I totally agree and have done everything you both are talking about. My primary doc, nor as you call it “GP”, IS GREAT. she’s just on leave from having a baby. But my rheumatologist only deals with that… no pain issues, I have to go to pain specialist… I did for a while. Now I’m managing myself, until recently. My main issue is that the dermatologist said he was coordinating with rheumatologist, but they both drop the ball and don’t communicate. I’ve been dealing with this since I think 209? Very difficult to find a rheumatologist in Los Angeles that takes insurance, much less my poor people’s insurance. That’s an entirely different topic. I am most frustrated with the treating 1 joint at a time issue. It’s ridiculous. For 2 years it was my hip. Now the crippling pain is in my knees. Mind you, and I’m sure you both relate to this… having some pain in most of my joints, spine, skin, mouth, eyes, scalp and even my ears on a rotating basis. However, this knee thing is different. I believe it’s just so compromised now . Anyway, I have no solution to this inhumane way of treatment I muddle along. I feel so much better hearing from and reading you all. I don’t feel alone or crazy, and I have had a rheumatoligist who saw me for 9 months. He did not touch or treat, or examine me in any way. Just history that entire time, and then telling me I do not have psoriatic arthritis. Then I got my current rheum… He got me on Stelara immediately. I am a bit better, but I’m breaking thru it all the time now. Probably need increase dosage. It’s a long process. The most helpful thing for me to take care of me. XOXO