New Here, trying to find ways to cope

Discussion in 'Fibromyalgia Main Forum' started by RoseSky, Aug 8, 2003.

  1. RoseSky

    RoseSky New Member

    I have been going to a number of different dr's over the past 8-10 months and no one can seem to figure out what is going on or what to do. A little background - I have been treated for depression for the past 10 years (the diagnosis of depression was because of constant fatigue, not significant mood problems) and for hypothyroid for the past 3-4 years (again the result of complaints of constant fatigue, but that time at least my blood work showed something). I have always had less energy than your average person, but over the past 8-10 months it has gone to the extreme. I am pretty much always exhausted to the point where I feel ill (aches&pains, migraines, nausea) and a lot of times to the point where I can barely function. I can make myself stay awake so I'm pretty sure it doesn't have anything to do with narcolepsy (even though my drs have resorted to putting me on Provigal, which is a narcolepsy drug, just so that I can get through the day). There have been several times that I have been afraid to drive because I can't focus and my reaction time is shot - I've lost track of the number of near miss car accidents. I've had pretty much every blood test known to man and all ok - all of my thyroid levels are perfect, no diabetes, no lupus, nothing. The only blood test that was a little abnormal was ANA, but when all the the specific lupus tests came back negative my dr said the positive ANA was most likely because my hypothyroid was being caused by Hashimoto's (an autoimmune disorder that attacks and eventually detroys your thyroid), but unfortuneately there is no specifc treatment for Hashimoto's - you just treat the hypothyroid, which in my case is being treated fine and not my problem. So now my dr is starting to lean towards Chronic Fatigue Syndrome. He is actually the second dr to mention this possibility to me. He hasn't gone into possible treatment options with me yet, because he wants to try one last thyroid thing - he put me on Cytomel to take along with my Synthroid. He said that wasn't really an accepted practice in the medical community, but he has had a few patients with normal thyroid levels and very persistant hypothyroid symptoms that responded well to it. What I am trying to find out is what does it mean if this is actually Chronic Fatigue Syndrome? From what I have read there aren't a whole lot of treatment options - antidepressants seem to be the standard treatment. But I have already tried about 80% of the antidepressants out there and it hasn't helped. All I know is I can't keep living like this, please tell me there is something else that can be done.
  2. Hippen

    Hippen New Member

    This is a great place to get info. I have Chronic Fatigue going on 8 years now. You have to take control of your healing and hopefully find a doctor that will support you through it all. I personally have found benefits through taking Olive Leaf Extract and am currently taking Guaifenisen and colostrum. You can read through all the posts in here to see that you are not alone. There is no specific treatment but you will need to find something that helps you...because different treatments work on some people and not on others. Hopefully others will come along to offer you some advice also. Love, Hippen
  3. MissRachel

    MissRachel New Member

    HI Rosesky,

    I have Fibromyalgia/CFS and unfortunatly there is no cure. There are ways to cope of course, like medication, exercise, massage, PT, holistic care, diate, vitamins, accupunture... Everyone is different, so what might work for me may not work for you.

    Dose your DR treat others with CFS? Can you get a specialist that will treat CFS? It is very important to have a DR that believes that your condition is real and willing to treat you.

    Welcome to the board. There is tones of info on this site and in the library. Everyone is friendly and supportive.

  4. Mikie

    Mikie Moderator

    My neighbor has Hasimoto's Disease and has found that having the thyroid all messed up has also messed up all her other hormones. She travels to another state to see a good endocrinologist who treats her. She has really suffered and is very young.

    Have your thyroid panel numbers improved since being on the Synthroid? How about your T3? Some here have had to take other forms of thyroid hormone because their bodies cannot convert the T4 to T3.

    You may need to get something for sleep to help with the fatigue. Keep us updated on your progress.

    Love, Mikie
  5. sandy10seven

    sandy10seven New Member

    Sorry you are feeling so sick, and it does sound like CFS to me. I only found this board a few weeks ago, but there's a wealth of information here, and a lot of supportive, caring people.

    I've seen quite a few posts about thyroid problems, although I don't know anything about it personally. You can do a search (at the top of the page) for key words like thyroid, cytomel and synthroid, etc. You'll find lots to read and a lot of good advice.

    Best wishes, Sandy
  6. DeMcKen

    DeMcKen New Member

    Your symptoms sound very similar to mine. My major complaint for over ten years has been uncontrollable fatigue and they sent me to psychiatrists for depression, even though I really wasn't suffering from a mood disorder. I've been on many different anti-depressents with no results. I've also been on Provigil, Adderall and Ritalin and, although they helped my alertness somewhat, they didn't help the fatigue and made me very jittery. Unfortunately, it's a trial and error type thing, so do as much research as you can and share with your doctor. This is a great place to find resources and friends.

    Good luck,

  7. RoseSky

    RoseSky New Member

    Thanks for the quick responses. Right now I am just at a family practioner. What type of specialists are good with treating CFS? I have responded well to the Synthroid - right now my T3, T4, and TSH are all within the normal range. My dr did just prescribe a T3 replacement. He said he has had some luck with it on hypothyriod patients with normal blood levels but still have persistant symptoms. I just started it today, so too soon to tell if it is going to work. I am looking into vitamin and herbal supplements now, but I odn't know a whole lot about it. Any suggestions? There is a big warning label on my new T3 script that says it can be affected by different presciptions and OTC drugs so to be careful about what I take with it. Does anyone have any experience with Cytomel and what I should avoid?
  8. RoseSky

    RoseSky New Member

    How did you fare with Ritalin? I have been nervous about asking for it because it tends to be addictive. Did you find that you built up a tolerance for Provigal rather quickly? I started taking it just a few months ago and 1 a day worked wonders - I was convinced I had found a miracle drug. But it has been becoming less and less affective. I'm now up to 4 a day on most days, which really isn't a good thing because after a long battle with my insurance company I finally got it approved, but only 1 a day. So I only have 30 pills to last me a month and when I have to take 4 a day it leaves me running out before I can refill it again.