I finally had my follow up apt with the rheumatologist. Good news is that all the other test (i.e., lupus, cancer, thyroid, etc.) came back negative. My vitamin D levels are extremely low. I am now on a 50,000 mg (or whatever it is measured in) twice a week. He said that this can also contribute to the pain that I have, but that because he was able to rule out everything else, it is fibro. With that being said - he said I would have to see my general practitioner to receive any medication. Whether it be a small dose of antidepressant or Cymbalta, he could not prescribe it to me, but he did prescribe the vitamin D. He said that I scored a 2 out of 10 on depression test and maybe I need something for that...I said what mother wouldn't be depressed when she has a junior in college 1300 miles away and a senior in high school....A 2...REALLY????
What was the sense of going to see a specialist if he is just going to throw me back to a general practitioner? I wouldn't have paid the higher co-pays to go see him if I knew this. Not to mention this was at Cleveland Clinic. I am so frustrated that I am no further than I was when I walked in, with the exception of knowing I don't have any bad diagnoses. So new apt scheduled with a new general practitioner next week....another waiting game.
Thanks for letting me vent. Any suggestions is always welcomed :-)
My Vit D levels were found to be very low too, apparently they should be 80 - 120 whatevers is your blood, mine were 9. I have been on high strength vit d tablets one a day for over a year now and recent bloods = only 24, so a very slight rise but not good enough for the dosage I am taking, so they've said rather than just being deficient in it I've been told it's a malabsorption problem so tablets aren't really going to help, as I'm not absorbing them!
So I'm now waiting for an appointment to have an IV shot of it, which they think I may have to have twice a year and repeated blood tests to see how I've reacted to it IV.
Just thought I'd let you know this in case you don't respond to oral treatment, it may be malabsorption too.
UGH!! Thanks for the insight Lucy. My levels are 8 so I'm right there with you. He did say it would take some time to absorb, hopefully I'll see a good increase in 3 months, but not so sure I'm going to go back to him....maybe just stay with the primary. Guess only time will tell.
well yes, your primary dr can check your vit d bloods up-take, my rheumy advised I have regular checks so my GP does this for me now.
Take very good care that you do not fall over at present, my gp warned me, bones with this low level of vit d are brittle............great!!!...............just add to our problems!!!
You actually are better off knowing that as of now, you do not have any of those truly ugly diseases. And you did finally get a definitive diagnosis. My rheumy is like yours in that I have to see my GP to get my meds. I know it's a pain, but rheumy's like to do the diagnostic stuff and leave the "lessor" stuff to GPs. I know it probably doesn't feel like it but I think you got a lot for your money's worth. And yes, low levels of Vitamin D can make the pain worse and I'm not sure if a GP could have prescribed that high of a dose of Vitamin D for you.
So anyway, let me congratulate you for having a mostly clean bill of health. That's really GOOD news! I know it's upsetting at first to "only" have fibro but it's a blessing for you in that you don't have to worry about the additional ills that autoimmune diseases offer. And if your GP is good, he/she will help you to find something to lessen the pain. Unfortunately, it's a multi-step process in order to get a fibro diagnosis and then assistance for it. So what you're experiencing is unfortunately typical for most fibro people. Maybe in time it'll be easier to diagnose it but for now we're stuck with things being this way.
And welcome to the fibro group here. I hope we can all help you through this rough time.
Lucy, thank you for this piece of information, as after taking high doses for 3 weeks, I'm still only in the mid-20's. I'll ask my doc about the IV of Vitamin D. And yes, it does seem to be a malabsorption issue when you can't keep the level up.