I have been feeling ill for quite some time now. I have had extensive work ups from various specialists (I had to travel to Seattle to them since I live in Alaska) who come up with little in the way of concrete answers. I have some sicca symptoms. I am positive for anit-alpha fodrdrin IgA. My labs showed deficiencies in Vitamin B2, B12, D, Iron and Ferritin. Rheumatologist started me on 400 mg Plaqenil in Oct 2010. In December I finally had a lab that showed the presence of B2, (yes Riboflavin) for the first time in a year, so I am assuming the Plaquenil is doing something positive. I also have lost 45 lbs since December. I am guessing since I am absorbing vitamins finally my body is not keeping everything it gets? I have severe joint pains and my muscles feel like they are made out of steel cords some days. On bad days I cannot even lift a up a fork to feed myself, other days I cannot walk. The problem I am having is the doctors in my rural area don't know what to do with me. Since they can't figure it out they don't want to treat my pain. I have had two specialists say definitively I do NOT have fibromyalgia. Although the doctors here want to give me that label so they can feel more at ease I think, take some Alleve and go exercise and go away.
Could the deficiencies cause permanent damage to my nerves which would cause the pain I am having?
There is no gastroenterologist here in my community. I also have suffered from diarrhea some days up to 15 times per day on the worst days.
I am at my wits end. I am living in pain every day with no doctors here knowing what to do with me. I got denied disability because they said I was not sick enough, but seriously, which employer is going to keep me when I spend more than half my day in the bathroom for more than half the week? The other half chances are I hurt so bad I could cry.
I also have carpal tunnel in both wrists. I feel like a total mess and am very frustrated. I did notice improvement in my energy level on the Plaquenil. Current medications are Plaquenil 400 mg, Topomax (Migraine preventative and pain) 50 mg 2x a day, Tramadol 200 mg ER, Tramadol 50 mg 2x a day PRN, Iron 325 mg 2-4x a day, B12 injections 1x a month, Daily Multivitamin, Daily B supplement, Daily Vitamin D supplement 2000 IUs. Flexeril PRN, Naproxen 500 mg PRN.
Do you have any suggestions that I should follow up on? I am extremely TIRED of hurting and feeling awful I would love to find a cure for what ails me or at least figure out what ails me and have adequate pain relief. I am really at a loss at this point in my life.
If you think this should be in another forum please let me know so I can repost it in another. Thank you!