I've been meaning to post about my visit to the Rheumatologist last week. She ordered more lab tests to rule out autoimmune disorders such as lupus and sjogrens syndrome and I got them back this Monday. All the tests were normal, except my vitamin D was on the low side. This isn't the cause of my pain, but it could be adding to some of my symptoms so I am going to take 6 six weeks of a high dose prescription vit D and then follow up with an over the counter dose daily. I had been slacking on my vitamins some lately, so I am going to start taking a good multivitamin and calcium. I have also been reading about the importance of magnesium for muscle and nerve function so I am going to take 250mg of magnesium daily and I'm also thinking of starting some fish oil. I've read fish oil can help with inflammation. I figure it won't hurt me. I'm sure I don't get enough omega 3 fatty acids anyway :)
Back to the Rheumatologist visit. She referred me to a Neurologist (since I couldn't get into one locally until the end of January) and I will see her on November the 19th. Then we will go from there...she mentioned the possibility of a referral to a endocrinologist in the future as well. I still bruise frequently, my red blood count was a tad low, and I am majorly cold intolerant (I've been this way for several years). So I don't know what that is all about. She also mentioned fibromyalgia, which I've considered for several months, but I don't know if it's not all just from chronic pelvic pain that hasn't been diagnosed well.
I also saw an internal medicine doctor locally last week since I didn't have a family doctor. She did some more blood tests on my thyroid (which came back normal) and an EKG because my heart rate has been running between 100-115 all the time. I don't really know when this started, but I think it must be related to either the pain or medications. She offered other medications to try for pain, but since I have increased my Neurontin I have felt better and I'd rather take as few medications as possible. My daily pain levels have been running between a 4-6/10. Which isn't great, but I have been able to function better. I spent about 2 weeks unable to hardly leave the couch. I am only taking Neurontin now. The Mobic (anti-inflammatory) wasn't really helping me so I just stopped it and I weaned off the low dose antidepressant. It seems like the antidepressant was causing the constipation I was experiencing so that's good...one less thing to worry about.
I have been trying to find a cushion of some sort to make sitting more tolerable. Mid October I had basically gotten to where I couldn't sit at all. I couldn't drive, I didn't sit to eat meals, nothing. We took a donut cushion, cut it up some, and duck taped it to a toilet seat and that has been working enough to help me drive (max 20 mins) and sit at an occasional meal. It's not ideal for driving and I still haven't been able to sit through church so we are still working on other options. We have tons of foam, pool noodles, insulation panels, toilet seats, and cushions in our laundry room. My husband is determined to help me find a way to sit!
We had started looking into if I need to file for disability or quit work or what. Thankfully God eased my pain enough last week to allow me to work for about 5 hours. I am just PRN (as needed), but I have a commitment of hours I am supposed to meet. I talked with my manager again and she said not to worry about meeting my commitment right no and that I could work whatever I could handle even 4 hour shifts. Praise God! So I am going to try to work one four hour shift a week until Christmas if I can. We sure could use the money and I'm not ready to "give up" just yet.
While I wish the Rheumatologist could have found a "problem" with me, I am glad I do not have an autoimmune disease. I just would like a more "official" diagnosis and treatment plan. I feel like I have pudendal neuralgia (PN), but I also have symptoms that aren't directly related to PN such as muscle pain and tightness in my shoulders/neck, cold intolerance, and burning/pain in my feet and hands. I think I am starting to accept my pain a little more now though. I know that that is important to the "healing" as well.
Tomorrow I am going back to PT. I don't really know what to do about doctors because I am not happy with my current doctor who has been treating my pelvic pain, but I don't really know what doctor to go to. I need a doctor to guide my PT and develop more of a plan. I'm considering going to a urogynecologist who specializes in pelvic pain (again another out of town doc...the joys of living in small town USA) because I've been going to a physical medicine and rehabilitation doctors who of course focuses on the musculoskeletal picture and maybe I need a different point of view. Plus I think this urogynecologist is familiar with pudendal neuralgia and can maybe better guide me with this diagnosis. I am still waiting for a pudendal nerve specialist to do a phone consultation with me...I expect to hear from him any day.
So, there you go. I very long and overdo update. For those of you who are still reading...thanks :) I'm still here, I'm still hurting (unfortunately), but most importantly I am still trusting in my sovereign God!