Not sure where to turn and what to ask!
I'm just at a loss and every time I find myself wondering, I come here and always find the support and comfort I appreciate and need.
I'm just unsure who to talk to, with a team of doctors who are all seperate and all busy who do I turn to and what do I ask.
So after I had my son in 2005 I started on a journey to figure out why my joints were hurting really bad, why i was tired all the time and why I was bruising easily. Family physician does blood work turns up a positive ANA and so my journey with the rheumy's begin. See a rheumy who is not very nice and not very up to date, switch to a good one. Love her! But she is a busy doc too. So we start on plaquenil, that in turn gives me an allergic reaction a few months in and no relief of symptoms so back to pain meds. Can't take steroids b/c I am a type I diabetic and it messes up my already poor control. Can't take nsaids b/c they don't really help and they hurt my stomach (gastric bypass patient).
So a year or so later I'm still working on it, in this time the rheumy discovered a d deficiency pretty common though, then also discovered thyroid issues so she suggested I see my endo and I do, he treats me for diabets but then starts checking out the thyroid and yup I have Graves disease, so we treat that. And now a few months in to treatment, a very low dose of treatment is effective, my thyroid levels are normal, I started feeling better for awhile (still joint pain though) but the tiredness and insomnia was better. Now I'm having problems again. I'm exhausted all the time, can't sleep at night, have to take otc meds to get to sleep but still waking up. My hands go numb b ut the painful kind of numb tingly, joints are aching, etc. I see the endo the other day and say ok what gives my labs must be bad again b/c I feel horrible. He says nope your thyroid levels are good. and leaves it at that.
WTH, I'm frustrated. I feel the same way I felt before the Grave's disease was diagnosed so what is going on and who do I talk to. His answer was to come back in a month for more blood work. he did not draw a cbc this time either, so I am asking them to do that this week instead of waiting til next month. I should have asked the other day but I forgot about it b/c I was suprised. He said "can't blame your thyroid" b/c the labs are normal. Well yeah he checked thyroid labs but the med I'm on for thyroid can affect blood counts and other issues so I'm going to ask him to do a cbc and hope he won't be offended but I'm just going by how I feel. I'm not claiming to be a doc or smarter on these things but I know that I feel bad and its not the norm for me. He said well, you are being worked up for fibro right? Yes but its not the same, I've felt this way before and had improvement when the thyroid meds started and now its back to crap feeling again.
Now the joint pain has stayed the same all along, I know that is auto immune related and "lupus" like so I'm not even talking to him about that, as its something my rheumy will work on still, we are trying to find options. But dealing with the joint pain is something I've done for a few years now so I can continue, I just want to find some way to help out the exhaustion and fatigue. I work three 12 hour shifts a week, have a family and am in a masters program online, I need some sort of ability to function and some sort of restful sleep. I've been off for four days straight and slept alot but my energy is still tapped.
I've tried doubling my vitamins, tried 5 hour energy, coffee, etc. Nothing is helping. So I will call the doc when I'm at work on Tuesday and see if they'll fax me an order for a CBC and I can just get it done at work (I work at the hospital). I'm a nurse, I need to have some semlence of energy in order to function for my son, husband, self and patients.
Sorry to drag on and on, just needed to get that out.
I appreciate your listening. I know it could be worse and I thank God everyday for the life He has blessed me with. I am thankful for all that I am and all that I have in my life.
Mommy to a cute little three year old.
I am a Juvenile Diabetic diagnosed at age 12, Positive ANA, arthritic joint pain, extreme fatigue, cannot take prednisone and am allergic to Plaquenil. Undifferentiated connective tissue disorder, Graves disease and fibromyalgia