View Full Version : Not sure where to turn and what to ask!

09-06-2009, 09:17 PM
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.

09-06-2009, 09:25 PM
I should add a few more things LOL (sorry for typos but my joints hurt pretty bad and my hand keeps going numb and tingly).

My doc (the endo) said a few times, "you are so young to have so much wrong with you" and "you sure have a lot going on" and each time it makes me feel as if he's basically saying stop making stuff up. But blood work doesn't lie. I can't "prove" the joint pain but my rheumy understands and believes me, she knows they are swollen and puffy.

It just irks me that I feel sometimes that docs don't believe me and that some days I wonder if family and friends believe me. So I tend to keep my pain to myself, but its nice to have you guys to share with.

09-06-2009, 09:33 PM
I just wrote a post similiar to yours. I am sorry that you are hurting. I also don't feel like I have anyone that I can share with.

I hope that you get some answers or your doctor can find a way to make you feel better. At least a way to get you some restful sleep. I know that it would make a big difference.

09-07-2009, 07:51 AM
Hi Cheroke,
Sorry to hear you are having a rough time. :grouphug: I know we all understand because we go through it together and you always have us it would be nice to have them understand too. I know we always tell others that in order for our friends and family to understand they should read the Forum. Maybe on their spare times the Docs can too. It's not always about book smart and medical knowledge its about empathy. And believe me I understand about having soo many things wrong my PCP and I joke about it. So hang in there and feel better. Here's wishing you a good day. :hug: :kiss:

09-07-2009, 11:12 AM
Thank you for your kind words guys, I really appreciate it. I'm going to go to work tomorrow and while at work will try to call and see if he (the endo) will order a cbc. At least I will feel better knowing it is done. I don't see my rheumy til October and hopefully we will get some progress. I'm going to probably have to try something on top of the pain meds. Right now its just pain meds but that isn't really solving the issue. I need to find a good resolution or something to calm down the pain a little bit.

And yes if I can fix the tiredness, that would be fabulous! Thanks for your kindness and support guys, I will keep you all updated!

Angel Oliver
09-07-2009, 12:34 PM
You know my heart goes out to you.Today i spent my appointment with a welfare rights officer,fighting for benefits as i am sick.Its been ongoing and very stressful.Still i cannnot prove my illness or my pain,even though i have rashes and swellings.I had a conversation with him and cried as i told him my struggle with all the doctors that are put it front of me.I told him also,how can i prove to people the pain im in when i look ok,well actually i look awful,but to others i look ok. I cried my heart out and said ive been fighting for years,since 2004 and still am unable to get help or proper help anyway.Im diagnosed with Lupus,yet they take it away,im constantly given anti depressants.I said,yes i feel depressed now as its 2009 and still no diagnosis,constantly being messed about,told one thing then another.Im at my wits ends with it all. I so want to give up.....but on wednesday i see my rheumi.Last week when i asked my doctor for Ambien or Lunesta as ive got insomnia since 2001,he said he didnt know these drugs.I ended up with a new sleeper which turns out to be another anti depressant.Im so sad the doctors really must think im ''loopie'' instead of treating my pain and fatigue and joint pain,rashes bla bla......so Wednesday im gonna give them the help.Ive printed out the english version of these 2 pills for sleep and i am going to demand Plaquenil. I feel its my only solution to get help.Im so intimidated by doctors,but im am getting sicker by the day and am losing the will to go on.So PLEASE know you ARE NOT ALONE!! Keep fighting them and make them hear you! Not all doctors know what theyre doing and they can make mistakes.I pray and hope one day you and me and many others gets our help we are so in need of. I hope you find a good doctor to ''hear'' you soon.I so understand you my friend.Keep strong if you can .....i know its not easy,but keep posting here because i feel better knowing i am not alone and you understand me also.

love n gentle hugs

09-07-2009, 06:07 PM

I am sorry to hear about how frustrating your journey to health has been. I can empathize with your experieces as I am sure many others on here can. I am also diabetic (Type 2) and have stomach issues (IBS, Spastic Colon, Lactose Intolerant) and have been on a long journey to find out why I am fatigued with achy joints and rashes (my most prominent symptoms) for many years now. I wish I could give you a big squeeze to help get those frustrations out. :hug:
I think you have good reason to ask for a cbc and I think that offending the doctor should be the least of your concerns. I hope your doctor listens to you. He/she should realize that as a patient who is also a nurse, not only do you know when your body is not feeling right, you also know when you should ask for additional tests and when the medicines are no longer helping you. I hope your doctor takes you seriously and listens to you and wish you the best of luck.
Sometimes we all need to come on here and vent because (unfortunately) you know that we all understand what you are going through. :grouphug: Don't apologize for venting. It's good for the mind, soul and body for us to release what emotions are eating us up inside.

09-08-2009, 10:08 AM
Just assume others won't understand, then you won't feel bad when they don't get it. That's what I have concluded after having friends and family not understand, time and time again. Believe me, we who have lupus understand!!! We care and feel for you. I am sorry you are having such challenging time with this illness.

09-08-2009, 11:01 AM
Well the doctor replied by having the nurse call me and she thinks its my blood sguars causing this, which I said no the symptoms are exactly as they were pre-thyroid meds. But whatever, so I'm going in for my follow up for the blood sugars. yes I know that needs to be fixed too, but I think there is more than that. But ok fine, will go along with what they say. Grrrr!

I will be getting my rheumy to do a cbc then when I see her next month, at least she listens! (most of the time LOL). nah just kidding, she really does listen.

09-08-2009, 01:24 PM
hi cherokee,

i take a vitamin b injection once a week for fatigue....i really think it helps. as far a joint pain, i take pain meds only. I have noticed that my joint and fibro pain have gotten worse lately, so my rheumy is trying a muscle relaxer at night to see if that helps.

if you have not tried the vitamin b shot, you might want to ask the dr. about this option.

09-08-2009, 04:28 PM
I know it's probably not what you want to hear but when my sugars are out of whack, my symptoms are much worse. Still, I think it's good you are going to get the CBC next month with the rheumy so you can be sure it is just the sugars.

09-08-2009, 10:12 PM
Yes I totally agree about the blood sugars, I know when they are out of whack my body responds but what I was trying to get to the nurse was that I've been in way worse condition (blood sugar wise) and felt better than how I feel now, but I do feel that they are all connected. The biggest problem I see sometimes though is that docs sometimes overlook the smaller things and go straight to diabetes (or obesity) i.e., stubbed your toe? Oh thats diabetes related LOL, no just kidding but you get my point, sometimes everything is blamed on poor old Mr. D and other stuff gets overlooked. But I do know that overall my body feels better when blood sugars are under control so I'm glad that we are doing that too. I really value this nurse she is a diabetes educator and very helpful as well as encouraging/strong. She communicates by phone, email or in person so its nice to have all of those options available to me.

I'm glad I'm not the only one who is just getting pain medication as treatment for the joint pain. I'm not sure what we will try next. I don't mind the pain medication so much but I can imagine my tolerance going up over time and that will make it harder. For the fatigue I'd love to try a B injection and have brought it up to my docs on a few occasions and they are not for it. Why I don't know but they think that oral b's are fine. I even talked it over with my surgeon (had gastric bypass) b/c due to the nature of my surgery medications and foods are not absorbed 100% for me yet he was still happy with me using sublingual b's which don't seem to really help, but I will continue using them. I will also continue to try and work on them about the injections, I've heard such good things about them. I'm already diabetic so injections are not a big deal.

Thank you so much guys for your suggestions, kind words and support, it feels so good to have somewhere to go, where I can read about others situations, lives and families and know that I can understand where you are coming from and you understand where I'm coming from.

09-09-2009, 03:52 PM
yeah, I know what you mean about docs pinning it all on Mr. D & weight. I asked my pulmonologist what I should do to make sure I keep my Sarcoidosis in check and he immediately answered he would tell all his patients to lose weight. My mom was with me and we just laughed and I had to explain to him that I have actually lost over 25% (and still counting) of my BMI through a controlled diet and excersize plan over the last 2 years and I have been sicker since then I was before. i agree there is a link, but I wish they would listen to us when we say, yes, the sugar and weight makes us feel sick but right now this feeling of sickness is different that the past and, I believe, not related to the two. so frustrating that they just don't get it. I am glad you have a diabetes educator helping with your care. At least she should be familiar with the symptoms that are linked to the diabetes and should recognize when they aren't. It's good to have an advocate in your corner on your medical team.