Hello all,
I am fairly new to the group and this is my first post but I needed to get some things off my chest and relieve some fears and I feel that this would be the best place to do that. Probably should give you a brief history of what I have been going through. I have had back, hip and leg pain for as long as I can remember even as I was growing up, but back in June of this past year it got really severe to the point where I could barely walk some days. I went to my doctor and he changed me from Vicodin to Percocet and when that did not alleviate the pain he suggested I go to a spine doctor. I made the appointment and showed up thinking that I would be seeing a doctor but instead I was scheduled to see a physician's assistant. Now don't get me wrong she was really nice and knew her stuff but I was just lead to believe that I would be seeing the doctor. She ran some x-rays and an MRI of my lower back as that was what had been giving me the most issues. There was no injury to myself so that was another mystery. After the test results came back as normal she said to continue my pain meds as they were easing the pain a little and sent me to physical therapy. My PT included both land and water exercises but was not at all helping as a matter of fact it was making the pain worse. When I went back to see the PA she decided that I should go see a pain management doctor as there was no reason for me to be having the pain I was having. So enter my pain management doctor. I can say that I absolutely love this doctor he said from the very beginning that he would figure this out and help me to the best of his ability. We decided to do some epidural steroid injections in my back and after three of those there was still no relief what so ever. At this time I was in holiday season at my job and unable to take a lot of time off so I decided to wait until the beginning of the year to go back and see him. When I went to see him this time he said he wanted to try the same type of shot but in my sacroiliac joint this time because after his evaluation of me he thought that this was the area triggering all of the pain. So here we are two shots later and I am even more pain than I have been since July. While talking to the pain doctor yesterday at my injection he decided to do a bone scan because he is perplexed as to what is going on with me. He has already stated that he thinks that I probably have an autoimmune disease and very possibly that is lupus. After researching the disease and reading what people are saying about it I agree with him that I have lupus. My PCP seems to not really care what is going on and I am seriously considering changing because I feel like he really just doesn't care anymore and sometimes he makes me feel like I am making my symptoms and pain up. Which is not the case at all, I would give anything to be pain free or even just have less pain and be able to do things like I used to.
This brings us to what I am currently going through and I am anxious and scared but I just want a diagnosis so that we can begin to treat whatever is going on. At this point I really don't care what is wrong with me I just want some relief from the pain. I cannot walk or sit for long periods of time, I have an extremely hard time sleeping and am always exhausted (even when I went to the ER for the pain and they gave me a shot that knocked me out for over 12 hours). I know that most people do not understand what I am going through and am very lucky to have a husband that understands and doesn't make me feel bad about not being able to do things like I used to be and I also have a very understanding manager and employer that I work for. There are a few people in my department that seem to think that I am exaggerating my pain, I just wish that she could understand the pain I deal with on a daily basis. Right now as I am typing this my pain level is at about a 9 even with all my pain meds that I have taken today.
I am hoping that someone here has some insight into a bone scan as to what it is like to have one done and what are doctors usually checking for when they order this. I know that my doctor has mentioned cancer before but he said that he doesn't think I have that but this was also before my blood work and last two shots. When my blood work came back the pain doctor said that it was normal but when I looked at the lab report it said that my monocytes were high which worried me a little as it can mean many things. I just am not sure what to expect tomorrow and where to go from here. I am extremely frustrated that after 6 months of being in constant severe pain that we are no closer to figuring out what is going on than when we first started.
I have an appointment to follow up with my pain doctor on the 27th and I am going to talk to him about the results of the bone scan and blood tests and ask him to do some more blood work to check for lupus. While at this appointment I am also going to ask my pain doctor if he thinks it is a good idea for me to change my PCP (or if I should just stick with him) and if I need to go see a specialist.
Sorry this is such a long post but I just need some direction and insight into things that I should be doing and/or asking. Any information that you can give me would be greatly appreciated as I am just at a loss and feel defeated by whatever is going on inside my body.
Thank you,
Sarah