My employer switched health insurance on us this year to a new company. Which, unfortunately, means I had to find a new doctor. I'm really tweaked off at having to start over with a stranger, but there's nothing to be done about it. So I finally buckled down and made an appt for March 30th. (yay for Saturday hours, at least.)
So I was wondering if I should take this opportunity to have the new doc look further into things. I've seen some minor improvements since I've been diagnosed and changed things like a better bed/sleeping environment, pacing myself, etc. But I found things that didn't work, either, like Nortriptyline and Prozac... Right now, I'm sleeping slightly better than I used to, but the pain and fatigue are still pretty bad. I don't have as many migraines as I used to, I'll take that silver lining! If I do take something else for pain, it can't make me groggy, because I can't afford to have it affect my job performance. (sigh)
Should I try to convince them to check for Lyme disease, even though I've never seen evidence of a tick on me and haven't even been camping/hiking in years? What about testing for lupus, although I know that test can give a lot of false positives? I wonder that because I do have really red cheeks, not just a "healthy flush". I try to strike a balance between being knowledgeable because of having worked in the medical field for decades versus sounding like a hypochondriac.
So you all have been so kind and supportive, what would you recommend I do with this new opportunity?
I think on your first visit, you might just want to get to know your new doctor to feel him out and make sure he's good with fibro. If you think he's good, then yes, I would be checked for Lyme disease because my sister had it this summer and never saw the tick that bit her. They can be extremely tiny! I don't think you have to be out camping to get them, either. Living in an area near some woods might be enough...
And yes, I do suggest you also get tested for lupus, and the day before you have the test, make sure you go outside for 30 minutes, as doing this can often help to have the lupus show up on the test, if it's there. Any and all testing that you can have is advisable, so you can rule other illnesses out.
Good luck with your new doctor visit! Please let us know how you make out with it, okay?
I know it's really tough on us to have to change Doctors, but sometimes having a different Doctor is a God's send, it's a new chance to get a further diagnosis. I personally believe all people with fibro should be checked for autoimmune in every possible way. Fibromyalgia and Lupus are both known as 'the great imitators', I believe MS is another in that category. I feel the same about Lyme disease, it is always such a strong underlying possibility.
If there is a particular area of the body that causes the majority of pain and distress, you may want to ask for new x-rays, while you are starting anew. Being in the medical field, you already know about being prepared with notes, with symptoms and questions, family history, especially of autoimmune.
Should this facial rash be very noticable at this moment in time, ask someone to take a picture of you, as sometimes by the time we get to the Dr, it is gone, it's the same with swelling or extreme redness.
If old x-rays are in your possession, you may want to take them along, you just never know what a radiologist has missed, if they can miss spinal stenosis on mine, they can miss anything. These kind of errors can cause years of irreversible damage, you have to identify these type of problems in order to treat them.
We will be very anxious to hear how it goes. I hope he will be 'your Doctor', that you will have found one that will have all of the best qualities and abilities.
What’s the reason for being outside before a lupus test? I’ve never heard that before and I’ve been tested once in 2007 and again in December. Know I wasn’t outside in 20 degree weather. I’m always learning something new here!
Seattlemeg - I’m seeing a new female rheumatologist for the first time on Thursday and I was thinking the same thing. Do we go in with guns a blazing or let them lead the way? My therapist and I discussed it and she did recommend that I let the doctor know that our relationship needs to be a collaborative effort and let her know past history of meds that did or didn’t work and if she recommends any vitamins, herbs, etc. Youll have to let me know how it goes. Good luck! Hugs~ Sandi
I do intend to do that, thank you. I refuse to have a provider that won't listen or at least trust that I know what my own body is saying. I've been through ending up in an ER years ago when I knew it was bronchitis and my then doc insisted it was the flu. I promised myself then that I'd never again let someone just walk all over my concerns. It's the only body I've got, after all. :) I'm curious about the being outside thing, but I've read that lupus can have some light sensitivity and it can aggravate the facial rash, so I'm thinking it's for that reason? Make things show up more?
Seattlemeg, since you've worked in healthcare, you already know that an informed patient is a good patient. I agree that this change may actually be a good thing for you. Take a list of your medications with you along with a list of all your symptoms that you've experienced, including how your current medications have affected those symptoms. If you haven't been tested for lupus and Lyme, then by all means, have them do this. Your new doctor should be delighted that you are an informed patient who wants only to feel better. Doctors only have problems with patients who only want pain meds and jump around to receive those. If you tell him that you can't feel groggy, he will know that you're not just there for the meds. You might also want to ask if he suggests that your vitamin B12 and D levels be checked and if there are any good supplements that may help. (My rheumy put me on B12 and malic acid with magnesium which made quite a positive impact on me without side effects.) Now my GP tells his fibro patients to take these!
Good luck with this appointment! Let us know how it goes. :)