Originally Posted by EMILY ANDERSON
Just an update. Good and funny bad news. Finally got into doc yesterday and he actually said " I don't know how else to treat your condition" ... so finally after 2 months of going back and forth from doc appt to appt, bouncing between 3 different docs....I'm being referred to a Neurologist......I am also checking into a new PCP. Not that he hasn't helped me in the past but I don't think he can provide the level of care I will need with CRPS. so that kind of good new in a way he was honest and just felt he didn't know enough to be of help to me. So a least there's that, plus I bet It's harder for him to prescribe the "stronger" narcotics I might need on a semi-perm basis. He works out of a state-run low income clinic so I bet there are tougher regulations on him.
Something weird, the PM/anesthesiologist I've been going through for the Procedures and such. The one who is supposed to be among the best doctors in town to treat CRPS.......doesn't prescribe medicines??? At least that's what the receptionist had told me. Even though I didn't ask for them. She was one of those people who when you call your doctors office in pain for an appt they automatically assume you're trying to get "drugs". I hate those people. I digress...
While I agree it's weird, it's not unusual that your pn management doc doesn't prescribe any type of pills. I've been especially frustrated with that after deciding to switch to a new pain clinic because of their write ups about their practice.....medication management, care of the whole person to help you maximize your functioning, psycho social intervention to help you manage all the facets of chronic pain, etc.......GRRRRRRRRRRRR !!!!!
It's CLEAR you need a change in some of your medical team. Before changing your PCP too, you might want to see what the new neurologist has to say and offer. If the new neuro is comfortable treating RSD, maybe he/she would be your primary RSD manager. It is a specialty area. Generally, a PCP should be proficient with managing 'normal' adult health issues (flu shots, flu tx, high blood pressure management, high cholesterol, etc) and would just refer to a specialist with certain situations. For instance, if you had brain cancer, a PCP should refer you to a neurosurgeon for tumor surgery and an oncologist for chemo and other medication needs for symptom management, like steroids, pain meds, anti nausea meds, etc. I wouldn't expect a PCP to manage all that themselves.
I only caution you because too much doctor switching can look like doctor shopping. It's hard to not look like a "drug seeker" when we are, in fact, seeking medication (or any other treatment that works) I'm using the 'royal' WE there, not to insinuate anything about you.....more to reflect how I felt when I was at your stage of newness to managing RSD, and to assure you that MANY other members here at NT have expressed the same feelings. For me, it's a combo of Cymbalta, Neurontin, Nortriptyline (? sp), Motrin, and narcotics. I'm not on the 'starter' dose of any of those. It took years to find the right balance......and to find the docs to prescribe the meds.
My big battle now is over the Motrin. My PCP is adamently against the daily use of anti inflammatories due to the cardiac risk. I understand there is some risk. My opinion is there is also great cardiac risk with being in severe pain and not being able to be mobile. The Motrin works better for my bilateral hip bursitis and bilateral knee tendonitis (issues probably from my fibromyalgia) than the narcotics. My rheumatologist, my neurologist, and my orthopedist ALL say I should be on a daily anti inflammatory. If this wasn't so serious and a matter of me having any enjoyment in life, it would almost be funny......my PCP has labeled me as 'self medicating' because of my use of Motrin.
Yes, I will be getting a new PCP. I'm just stalling because I plan on moving soon and I'd rather not keep switching doctors.
If your PCP is blocking you getting adequate treatment, I think a change is in order. If you like him/her and they are trying to help you get the help you need, even if they are not expert in this condition themselves, you might want to hold on to them.
Good luck whatever you decide to do. I hope that you are able to find a great doctor to help you manage this soon.