Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Not sure where to turn and what to ask!

  1. #1
    Join Date
    Sep 2006
    Posts
    126
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default 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.
    Amy
    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

  2. #2
    Join Date
    Sep 2006
    Posts
    126
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    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.
    Amy
    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

  3. #3
    Join Date
    May 2008
    Posts
    51
    Thanks
    4
    Thanked 2 Times in 2 Posts

    Default

    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.

  4. #4
    Join Date
    Jan 2009
    Location
    New Hampshire
    Posts
    340
    Thanks
    0
    Thanked 3 Times in 2 Posts

    Default

    Hi Cheroke,
    Sorry to hear you are having a rough time. 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.
    Spanglishqueen AKA Brenda or "B"

  5. #5
    Join Date
    Sep 2006
    Posts
    126
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    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!
    Amy
    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

  6. #6
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    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
    Amanda.xxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  7. #7
    Join Date
    Jun 2009
    Location
    Long Island, NY
    Posts
    1,855
    Blog Entries
    3
    Thanks
    172
    Thanked 154 Times in 125 Posts

    Default

    Cherokee,

    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.
    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. 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.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  8. #8
    Join Date
    Apr 2008
    Posts
    961
    Blog Entries
    4
    Thanks
    33
    Thanked 47 Times in 43 Posts

    Default

    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.

  9. #9
    Join Date
    Sep 2006
    Posts
    126
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    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.
    Amy
    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

  10. #10
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 79 Times in 69 Posts

    Default

    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.
    Phyllis

    share a smile today

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •