Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Nov 28, 2012.

  1. Just went to my new doctor, and I'm disappointed... but not surprised. She thinks that ME/CFS is a problem of dopamine regulation malfunction and thinks that Celexa will fix all my CFS/ME problems. REALLY?! My first thought (although I kept it to myself) was "if only it was THAT simple?!" Has anyone tried this? And has it helped you?

    She doesn't seem to know much about ME/CFS and she is def not integrative. She wants me to get to an endocrinologist because she says that my thyroid must be followed very closely because of my cancer back in 1998. She was mortified that I didn't have anyone keeping track of it. The only reason I stopped going to my endo years ago was because he wouldn't even hear of me taking anything but Synthroid. And I just can't go through the nuclear scans anymore... which required me getting off of my thyroid med for a few weeks to let my TSH climb to a certain level before they give me a lower dose radioactive iodine to check for traces of cancer. I went through that a few times, years back and then I realized my body just couldn't take it anymore. But I guess I'll try this new endo, but if he won't support my taking natural thyroid, then I'm up the creek!

    I will finally get some much needed labs done Friday... would have done it today after the appt, but it has to be fasting labs. Trouble is, I really need my cortisol levels checked and she is leaving that for the new endo to do :-( and there's no telling when I will get a new patient appt with him! Uughh! I'm so sick of all this! Round and round we go... once again.

    She also told me to get off of the extra vit. A that I take because it can cause liver damage... she also wants me to get off of the vit. D and vit. E for the same reason. She's also worried that glutathione may cause kidney damage... and wants me to get off the Grapeseed Extract because it can interact with my thyroid med and cause problems, she says.

    Oh, and no Xanax for me... she says its too addictive. She says if I take the Celexa, it will help me sleep. If anyone here has tried Celexa, did it make you sleepy and help you get better sleep? Oh, and she wants me to get off the L-Carnitine... I forget why now... I think maybe it was liver damage for that too... I don't know :-(

    The only thing I will probably do is stop taking the extra vit. A since I already get 5000 IU in my multi... I was taking an additional 25,000 IU... but she says that will increase my chances of skin cancer... and with my history (melanoma and squamous cell carcinoma), I don't want to take any chances. And I guess I'll back down my Vit. D to 5000 IU/day instead of 10,000 IU/day. I'm not sure about the grapeseed extract... I know Jam swears by it... but if it may mess up my thyroid levels, I don't know (since I depend TOTALLY on meds for thyroid since I have NO thyroid left).

    It's so much to think about... and pray about. Please pray that God gives me wisdom to do the right things for my body. And let me know what all of you think... and if you have any knowledge or experience with Celexa.

    Thanks so much!

    Blessings and Gentle Hugs,

    [This Message was Edited on 11/28/2012]
  2. SherylS

    SherylS Member

    Was the same as all other anti-depressants for me....extreme depression! Of course, that doesn't mean you will react that way. And you can order the 24 hour saliva cortisol test online without a doctor. The yahoo adrenal fatigue group or Stop The Thyroid Madness both can tell you how to order them
  3. ...and this doc was wrong about more than one thing! She said that too much vitamin A is dangerous... but that is ONLY for the RETINOL form of vitamin A.... NOT for the beta carotene form, and that's the form I take. Basically, retinol comes from animal sources and beta carotene comes from plant sources. You would think that a doc (from Harvard, no less) would know this, wouldn't you? The only thing that will happen if you OD on beta carotene is that your skin can start to turn orange, but its not harmful and your skin returns to normal when you back off the beta carotene. I looked at multiple sites and they ALL said the same thing... there is no danger of toxicity with Beta Carotene.

    Also, Jam will be happy to here that another mistake this doc made was on the grape seed extract. It is grapeFRUIT seed extract that can interfere with thyroid meds and thyroid regulation... NOT grape seed extract.

    Also, I will def NOT be taking Celexa. I read up on the possible side effects (the list seemed to go on forever!)... and some of the COMMON side effects are the very same symptoms of CFS/ME! SO NO THANK YOU! Not to mention one of the common side effects listed was "trouble sleeping"! Ummm, I think I've had enough trouble sleeping, thank you! She even knew all about my insomnia AND my hypersensitivity to synthetic drugs! This kind of thing drives me crazy! Oh, and get this: she didn't even do any kind of physical exam... even though I had listed chest pain and trouble breathing as some of my issues... I had also listed sore throat, among other things. She didn't look in my throat, or ears or listen to my heart or lungs... NOTHING! All she said was that if my labs came back abnormal her office would call me... if not, she would see me in six months! I have never been to a primary doc, even on a first visit, where they didn't do some basic physical exam.

    I will go get the labs done tomorrow (God willing!) But I will NOT be going back to this doctor! In fact, I have another appt Monday with another doc (we had set this up just in case the first one didn't work out)... say a prayer for me!

    I'm just so fed up with crummy doctors! Its like finding a needle in a haystack to find a good one... so the search continues! And with my limited energy its not easy! Uugghh
    Btw, I got less than 4 hours of sleep last night so my sleep is still all over the place... so I'm still praying about that too...

    Thanks for your input and caring!


    [This Message was Edited on 11/29/2012]
  4. And thank you for being so kind! I am always blessed to hear from you too, Leah! :)

    I just had to vent a little... the more I thought about how my appt went and the more I discovered what the doc was wrong about, the more steamed I got. It took so much for me to even get there... including arranging for a friend to pick up my son from school and stay with him till I got home since my appt had to be at 3:00... and then to strike out and be back to square one... It's just so hard because of the darn ME/CFS... that's why I haven't had a primary doc in 2 years.... because I don't have the stamina to keep up this "trial and error" approach to finding a good doc.

    I'm beginning to think there really aren't any good primary docs in my town :-( And in the past, when I would find one, they always seem to move away or close their practice and move on to something else (like the health dept or to become a hospitalist, etc) shortly after I find them. Its so hard to understand why this always seems to be the case for me... so thanks for letting me vent here! And for understanding!

    Praying I'll get better sleep tonight and that God will give me the strength to persevere with this doctor search... AND help lead me to a really good one. Hope everyone else is getting good sleep and feeling better these days!

    Blessings and Gentle Hugs,
    [This Message was Edited on 11/29/2012]
  5. lesliesue

    lesliesue New Member

    Hi Shel and everyone,

    I am fairly new here. I wanted to chime in because your post speaks to me. That doctor sounds bad. I can relate to having trouble finding a good doc. It is so, so frustrating!! I have finally found a good primary care doc. I am very grateful for that. But I have basically given up finding a good specialist for the Lyme and CFS. I hope the appt. you have with the next doc is wonderful....and worth going to.

    About Celexa....my experience. I was on it for a week. It made me so tired I couldn't move off the couch. A lot of the side effects that it lists (that most of us already have) happened. I know everyone is different but I would caution people with our problems about going on that drug. It sounds like that doc didn't hear or listen or even think.

    And I hear you about sleep....I am absolutely wrecked it I don't get enough sleep. I hope it was better for you last night. So I just needed to pipe up. It is a relief when you read something someone else writes and it is like you wrote it yourself.
  6. lesliesue

    lesliesue New Member

    Thanks Leah, this is a great board! So happy I found you guys!
  7. MicheleK

    MicheleK Member

    First of all hello Leslie. Welcome to our little part of the cyber world.

    Shel, I feel badly for you. You've gone through a lot lately and that was the last thing you needed.

    You know I empathize with your experience just as most other ME/CFS patients would. It really is like trying to find a needle in a haystack. And we are too exhausted for the hunt!

    I finally got a primary care doctor who "listens" and "watches" me cycle through this DD. She was not open at first but agreed to take me on as a favor to an oncologist I had seen. Within one year she became a believer and now her fellow doctors in the practice are opening up to the true reality of what an ME/CFS patient goes through.

    I hope you will find a doctor who will be the doctor, but who will listen to you and also educate themselves through you.

    This disease is so exhausting. We just do not have any energy for all this searching for a doctor with an open mind and a real curiousity into complicated medical illnesses.

    Hugs, Michele
  8. I've tried two different times to respond to all of you... once the other day to Lesliesue and again just now... both times a glitch in my phone wiped out my message just as I was finishing! And they weren't short responses... I'm not doing well at all and it is taking everything I have in me just to respond... so I'll have to try again later... :-(

    Btw, I went to a new doc yesterday (2nd one in less than a week)... didn't go so well... and I found out I'm hypothyroid right now along with cortisol all messed up... no wonder my sleep is messed up... please keep praying... I'm barely hanging on...

  9. lesliesue

    lesliesue New Member

    I'm so sorry you feel so terrible, Shel. I have been there. I have had the thyroid problem w/ extremely low cortisol at the same time. Hang in there! You will make it through. I know, as Michelle said, it is exhausting. It is hard to do anything. And then having the messages disappear....just so frustrating. I am not sure where my thyroid is now...and the cortisol is suppose to be up, but it is still exhausting to do the dishes...or even get out of bed at times. My thoughts are with you.
    Did you like the new doctor? Or another bomb?

    People are so caring up here.....thanks to you all! I like this corner of the Internet!

    [This Message was Edited on 12/04/2012]
  10. MicheleK

    MicheleK Member

    Shel I am sorry your comment did not go through. I know it takes a lot of energy to type a reply, especially on a phone! I appreciate your efforts, as does everyone else here.

    I am glad you found out what was out of balance. I hope they can get you regulated so you can sleep again. Also this explains why you were having a harder time keeping your spirits up as you said a couple weeks ago. It's hormonal. It usually is! Hormones...can't live without them and can't live with them., LOL

    I haven't been on due to my severe relapse which continues to keep me laying very still and keeping my mind as quiet as possible. I need to do this to recover. So far it's not working the way I think it should. Oh well, this too shall pass.

    Leah, I hope you are doing okay. I know you struggle with this DD too. Your words are always so kind and encouraging.

    Wishing you all a good day and all of us much improvement.

    Hugs, Michele
  11. I appreciate your kind thoughts, support and prayers... I'm doing a little bit better...although last night's sleep wasn't so good... at least I'm able to fall asleep. Just need to get more and uninterrupted restorative sleep... as we all do, I'm sure.

    I'm off of the nyquil and benadryl finally... just taking the sleep packet from my apothecary. I'm able to fall asleep but I wake up from either pain (in my left shoulder lately) or bad dreams that cause my heart to race. Last night it was BOTH (oh joy). And when I woke up each time, it took me a while to fall back asleep. So I'm getting around 4 to 6 hours of broken sleep...which is better than nothing, but not near good enough.

    And because of the Christmas season, I've been pushing myself more than usual to try to get gifts ordered (a little at a time) and trying to put ornaments on our tree, a little at a time, for my little boy's sake... also, putting out decorations a little at a time, again, for my son. He helps too. But the outcome for my health isn't so good... still, I want to do it for him... it brings such joy to his spirit! And it brings me joy to bring him joy...

    I also had to get my daughter and her husband's (who live in England for now) gifts together and wrap them so we could get them shipped today... which actually was too late for parcel post so we had to pay double for priority mail or else it wouldn't get there in time :-( I'll know better next year that Dec. 3rd is the deadline for regular shipping to an APO adress. I'm thankful my husband took it to the post office for me because just doing the wrapping wiped me out! And it was only 5 small gifts I had to wrap... so ridiculous what this DD does to us!

    I'm so sorry, Michele, that you are still doing so poorly... it breaks my heart... but I will continue to lift you up in prayer and believe that God will bring good out of all this... we just have to keep yielding to Him and be patient... not ever easy, I know. Leah and Lesliesue, I'm praying for you as well and hoping we all are doing much better soon.

    Btw, my last appt with a new doc (on Monday) wasn't good at all... kept me waiting an hour and a half before I saw the doc... and I was already pushing to get there and not doing well. I was about to leave when the doc finally came in... And he just wanted to focus on the fact that I have chiari malformation (herniated brain stem out of the hole in the back of my skull where the spine connects)... I discovered I had this from an MRI a few years ago, but even a trip to the Mayo clinic left me with no answers as to whether I needed surgery or not. So, I filed it away in the back of my mind, trusting that God knew all about it and would show me if and when something needed to be done. This is usually something your born with, and if I've lived with it this long, I'm hoping I can live with it much longer... Surgery would be the last thing I would want. But whether this condition plays into my ME/CFS is a good question... it may... But that's all this doc wanted to talk about and he wants to put me on a drug I've never heard of that he thinks can help... but from what I've read, its another version of Celexa! So I don't think I'll be trying it... I DID however give him a copy of the physicians guidelines for CFS and he said he would read it... I hope he actually reads it though... he seems to be kinda ADD though... his mind jumps all over the place, so I won't hold my breath.

    I have one more doc to try... a female D.O. who I hope will be more open to the natural alternatives, being that she's a D.O.... I just don't have an appt yet... hopefully I can see to that on Monday... and I'll hope for a better experience and better match with this doc...

    My thought and prayers are with all of you, as well. God bless each of you!

    Blessings and Gentle Hugs,

    [This Message was Edited on 12/07/2012]