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donna1967
10-28-2008, 11:25 AM
I went to my pcp the other day and he treated me like I was some drug addict off the street! I suffered from a stroke (caused from the lupus) in June 2000 and was told by my rheumatologist that I would never be able to return to my job as an RN. I try to stay as active as I can because I realize staying active helps with the aches and pains. I was only fortunate enough to work as an RN for 5 years before my stroke therefore, I often find myself very depressed. I am on a lot of medicines mostly because of the side effects from prednisone. My pcp writes the bp, stomache, cholesterol, depression, and sleeping medicines. He also writes me 60 Vicoden ES for pain and 15 Xanax's which he expects to last for 60 days. It had been 49 days since he wrote either the Xanax or Vicodin when I went to his office the other day. He wrote the Vicoden 1/2 2 x a day as needed and told me if I needed any more than that, I needed to go to a pain clinic. There are some days I take no pain medicine at all but other days, I could use at least 2 of the Vicodens. I see my rheumarologist every 4 months and he expects my pcp to write the pain meds. My rheumatologist writes muscle relaxers and anti-inflammatories. Am I asking too much from my pcp? By the way, I have been seeing the same pcp for almost 12 years. He also tells me he knows nothing about lupus is why I see my rheumatolgist.

buddhabelly
10-28-2008, 04:25 PM
Hi donna1967!

So your pcp writes up your bp, stomach, cholesterol, depression, sleeping medicines, pain meds, and anxiety meds. And the reason for this is from the after effects of prednisone? Your PCP should be monitoring you closely especially after your stroke. Are you taking bp meds because of your stroke? Many PCP's dont have alot of knowledge when it comes to Lupus. That's why we turn to specialists. Rheumatologists seem to be the one to rely on for any Lupus questions.


:?: What type of inflammatory meds are you taking? Are you on Plaquenil?

Sorry for all the questions. :(

donna1967
10-28-2008, 04:46 PM
I saw a neurologist up until about 3 months ago. The neurologist is a 2-2 1/2 drive from me. He told me that since I am stable as far as the strokes are concerned, I could make appointments to see him on an as needed basis if my pcp had no problem with taking over the writing of the Tegretol. My pcp acted like he had a problem with that. My rheumatologist writes a vasodialator for Raynauds and I am currently taking Relafen and have tried various other anti-inflammatories such as Ibuprofen. I think ibuprophen is a wonderful drug but, my stomach doesn't handle it very well. Believe me, I know someday I am going to hurt worse than I hurt today and don't want to get addicted to anything but, some days a half of a Vicoden ES 2 times a day and the anti-inflammatories just don't do the trick. I also currently take an aspirin a day & Tegretol (for seizures caused from the brain damage from the stroke). It has been really cold here for the past couple of days and the aches and pains are getting to be more than I can stand and I was just curious if anyone else thought I was being unreasonable to ask for a few pain pills to get me through the tough days.

buddhabelly
10-28-2008, 05:23 PM
Im sorry about all the things you've been through. I know its difficult taking all these meds. I felt like a drug addict taking so many different pills. Luckily, Ive been weaned down to the minimum. :) I hate being on medications. Ive never taken anything before besides tylenol and cough medicine. So taking so many meds was scary for me.

Have you tried anything else for the pain such as hot packs or ice packs? Maybe that'll help with your pain so you dont have to rely on medication all the time. :?

Im not a fan of the cold weather either. My fingers and feet get so cold. My knees seem to be achier. I sleep with layers of blankets and a hot pack. My dog even stays close to keep me warm. (Actually he's trying to share my bodyheat heehee) We try to keep eachother warm. :puppydogeyes:

donna1967
10-29-2008, 06:30 AM
I was the same way before having my stroke. I was working 12 hour shifts as an RN and would not take anything. I was diagnosed with the lupus in December of 98 and was not on anything for the lupus until I had the stroke. The heat works very well for localized pain. I have the knee pain too but, I have to say my worst pain is in my legs, hips, and shoulders. I try to keep my meds at a minimum but, everytime I mention going off of any of them, they tell me I can't go off of any of them. It is very stressful. Somedays I pray that the good Lord will give someone the knowledge to cure this dreadful disease.

KathyW1958
10-29-2008, 09:09 AM
Hi Donna,
My name is Kathy. I was reading your post here and I am wondering if your doctor has ever mentioned putting you on Tramadol for the pain. It is not a Narcotic. I am taking that and it seems to help some. I deal with a lot of pain. I have not had a stroke, but the Lupus causes me a lot of pain in my knees, hips, shoulders and wrists and fingers. I often wish that they would find a cure for this nightmare of a disease too.

Hugs,
Kathy