Advice Needed Badly

Discussion in 'Fibromyalgia Main Forum' started by amyjoy2002, May 9, 2003.

  1. amyjoy2002

    amyjoy2002 New Member

    I was diagnosed with CFIDS and FM about three years ago. These did not become so horrible until about a year ago. I finally found a doctor that is willing to treat my constant pain, but now I have an unbelievable problem with fatigue. I am currently taking the following to give me energy....The cytomel was just added a little over a week ago. I have never had my thyroid tested, but my rheumatologist wanted to add it and see if I would gain anymore evergy

    Wellburtin SR 150mg 2xday
    Provigil 200mg 2xday
    Cytomel 5mcg 2xday

    My rheumatologist told me that any "normal" person would be unable to fall asleep with the med combination that I am currently on. I can take my meds and fall asleep in an hour.....I am so fearful that there has to be something else.

    My rheumatologist is open to any suggestions. Does anyone have any advice/suggestions that may have helped them with there energy level. I am 27 with 2 kids and it is a struggle everyday......

    Thanks so much.....
    Amy Joy
  2. layinglow

    layinglow New Member

    I have FMS and CFS, I have gotten my FM symptoms pretty much under control, and now began working on the same unbelievable fatigue you seem to be experiencing.

    There is a product called ADR--it really gave me energy, but unfortunately I have hypertension as well, and it raised my BP, unacceptably.

    I also have been on B-12 injections everyother day, at home, (2 months) and this has helped significantly. I am going to begin B Complex injections at home, as soon as I have 3 trial injections in the Drs. office, as sometimes there are those who have adverse reactions to these---and I live in a very remote area, without nearby med facilities.
    (I was not absorbing oral B-12)

    I would also suggest Co-Enzyme Q-10, and another product called Adrenal Pep (homeopathic). I would imagine these could be found in your neighborhood healthfood store or online. (I get my vitamins and supps at Doc's office, one less errand for the bedraggled, lol).

    Best wishes, I know what a problem--and how inhibiting that total fatigue is. I was afraid someday, someone would find me with cobwebs and moss growth on me---in my recliner.

    [This Message was Edited on 05/10/2003]
  3. Princessraye

    Princessraye New Member

    Hi Amy Joy,

    I took all except the Wellbutrin and could take a nap any time , any where so you are not alone. I guess it only proves we are not normal, something is wrong in our bodies. (like we didn't know that :)
    I am 45 , have had this 16 years and I do not know what to tell you that helps. I am sorry to say that to you. After years of refusing narcotics for pain I finally had to take them to continue working. I have had to go to lower paying jobs as I could not handle the stress of better paying jobs. I am so exahusted. I work and sleep and work and sleep. On my off day I do laundry and TRY to straighten my house. That is it.
    The only thing I can tell you is that some people do get some better, not everyone is like me.
    I am grateful that I don't have any children and can only imagine the struggle you go through with having 2. My mom has Fibro and chronic fatigue while raising me and it was not easy. But I love her and sure don't think any less of her for being sick. She did the best she could and provided me with a good upbringing.
    God Bless You

  4. moonflowercat

    moonflowercat New Member

    I too am on Synthroid and Cytomel, but neither seem to help me much. I started out on just Synthroid 11 yrs ago after destruction of thyroid, then tried Armour, then back to Synthroid 0.125 and Cytomel 25mcg about 2 yrs ago. The latter combo seemed to give me quite a boost of energy for about 6 weeks...then I bottomed out, back to feeling slow as before. Do you mind if I ask how much of these 2 RX's you take? I've told the doc I want to go up on the Cytomel, but he is a man of very few words and just says it's an awfully powerful drug. BTW, thyroid was destroyed w/radiation due to Graves disease 11 yrs ago.

    Thanks, Brenda
  5. kerrymygirl

    kerrymygirl New Member

    Trying to find the right dosages is more complex,due to the neurotansmitter incorrect messages to our bodies. I found we constantly had to keep changing dosages.Just when we thought we had it right,This will be an ongoing process with our dd`s. You know how we change almost minute to min. from times. Same way with trying to get the right rx,for our eyes. So many have eye glass changes a couple times a yr. Co Q 10 is to be known for many as the most helpful. But when the fatigue is so bad rest is about it. I here SAm-e though pricy, has helped some. Like Cher. I find my fatigue hurts so much sometimes nothing helps. With the fm. I can get some relief with rx for pain.
  6. Fibrolady37

    Fibrolady37 New Member

    Hi Amy,
    Well i know how you feel girlfriend coz ive been there.
    I went on Multivitamins with iron because ive previously been aneamic & that awful feeling of chronic fatigue improved soo much im so pleased.
    What works for 1 doesnt always work for another but you never know,hope this helps.
  7. Fibrolady37

    Fibrolady37 New Member

    Hi Amy,
    Well i know how you feel girlfriend coz ive been there.
    I went on Multivitamins with iron because ive previously been aneamic & that awful feeling of chronic fatigue improved soo much im so pleased.
    What works for 1 doesnt always work for another but you never know,hope this helps.
  8. Mikie

    Mikie Moderator

    Your doc might be interested in knowing that the Provigil just made me sleepy and mentally dull, just the opposite of what it's supposed to do. I slept all the time when I was trying it.

    Love, Mikie
  9. horsegal

    horsegal New Member

    If your rhem. is open to advice go to a search engine and enter the word myalgia and get Dr. Robert Bennet's plan. He is president of Oregon Rheum. Assoc. and works at Oregon H.S.U. which is a teaching medical university. He sent me a 20 page plan that I would e-mail you to give to your Dr. if you are interested. Contact horsegal.
    (I typed in a URL address and then remembered that was a no-no. Had to edit quickly) Bennet is the tops in my book and I said it somewhere b 4, if we could all go to dr.'s like him, this site would be less busy. Hec! I wish I could go to him and I wish one of my docs would read his stuff!!![This Message was Edited on 05/10/2003]
  10. amyjoy2002

    amyjoy2002 New Member

    For the past couple of years I have tried every vitamins/supplements, b-12 injections (no energy, just retained a ton of water). I have not had my thyroid/adrenals tested. The year before I was diagnosed with FM/CFS. I was admitted to the hospital 4 times in one year for reoccuring meningitis (just my luck). My immune system has never been good, but I don't know how to tie all these things together. Horsegal please e-mail me website

    Thank you guys so much.....
  11. amyjoy2002

    amyjoy2002 New Member

  12. Applyn59

    Applyn59 New Member

    The first thing that I would look at is the Provigil. When do you take it? I believe it isn't supposed to be taken
    after noon if I remember correctly. I tried it and started
    on a dose of 50. It made me really hyper and I also felt like I was having a heart attack when I first started it.
    tingling arms and hands, heart beating fast, etc.
    I had one of my worst cycles of sleeping problems while I was one it and effentually went off of it. At the time I went about 1 month with only 2 hours sleep max each day. I hated it. I was given wellbutrin and it also
    made me anxious, so I believe that would be an upper as well.

    I currently am having a horrible time sleeping - am backwards. Can't sleep until 6 to 8 am and sleep
    until 4 to 5.

    Three things have helped in the past with this problem.
    One was colostrum by symbiotics. It reversed my sleep
    pattern. I had to stop it for gallbladder surgery and it never worked after that.

    2nd big thing that helped was Vespro's GHS sold here.
    That was like a miracle for me. However, after I stopped it after three months (they recommend a two or
    three week break), it never worked again. I believe the product now has colostrum added to it.

    The other thing that reversed my sleep pattern was soaking in a hot tub. I have basically been bed ridden
    the past 8 months though and haven't had the energy to
    try it. Have also had major flu going on for long time.

    What is cytomel? Doesn't ring a bell with me.
    Good luck,
  13. Applyn59

    Applyn59 New Member

    I have horrendous fatigue and was wondering what
    ADR is? I saw it mentioned in one of your posts.
    I do have very rapid heartbeat and am on Ziac for it so don't know if I could take it either. I am curious as to what it is. My BP fluctuates wildly.

  14. horsegal

    horsegal New Member


    I have tried to e-mail you with the papers from Bennet. I also tried to send you a note, but I keep getting a mail returned notice. I've also had trouble with the board. I can't post any messages, but it looks at though others have been able to. I hope you look or see this. Anyway, I tried to e-mails to the address you gave me We'll get connected!