Discussion in 'Fibromyalgia Main Forum' started by fibrowhat, Aug 21, 2002.

  1. fibrowhat

    fibrowhat New Member

  2. fibrowhat

    fibrowhat New Member

  3. mistyb

    mistyb New Member

    Oh my yes. I still can't get a straight answer as to why. My doctor thinks it has something to do with the shift in hormones. I get horrible pain in my spine. I think there is a very old post on this, but nothing real conclusive. I always thought I was crazy. Not that I am wishing that somebody have this, but it is nice to know I am not alone.
  4. MicheleF

    MicheleF New Member

    Wondering same thing today, as a matter of fact. My fms symptoms had seemed to be easing somewhat, now much worse yesterday and today. PMS was also worse these past several months.

    Any advice I'm open too. Please................

    Hope you feel better soon.
  5. blast

    blast New Member

    Can't believe I finally found someone!
    I have been having this problem for about 4 years or probably more, but am going to have a hysterectomy in 3 weeks to try to see if it will help!
    My pain is so bad as well as PMS that I want to die!
    I'm sorry to feel this way, but now there's hope!
    Would love to exchange e-mails sometime!!
    Gentle hugs,
    P.S. I even take very strong narcotics and it barely take the edge off!
  6. Lynda B.

    Lynda B. New Member

    Because of early menopause and other hormonal impalances, I don't have periods anymore BUT when I did about every other one was pure hell. I could barely walk the pain went down in my legs so bad not to mention all of the other stuff.

    Lynda B.
  7. MicheleF

    MicheleF New Member

    best wishes for your hysterectomy. I'm sure it will be worth it...waiting for dr. to approve mine & find the money to do it.

    Take care, and let us know (when you can) how you're doing after surgury. Michele
  8. sedgewarbler

    sedgewarbler New Member

    All our symptoms whether CFS/FM are all made very much worse by fluctuating hormone levels.

    I'm struggling with the menopause at present and my head symptoms become worse at particular times. For instance when my body is struggling vainly to ovulate I feel very bad.

    Just another cross for us women sufferers to bear!

    Love Vicki
    [This Message was Edited on 08/22/2002]
  9. Jackie F

    Jackie F New Member

    Your name brought back some warn memories for me. Those are the words I said when given the terminology for my illness. hee hee

    So good to have you join us.
    This is something we speak about all the time.
    It is in 90% of the cases from irregular hormone activity.

    Which in many cases can be somewhat lessened by supplementation. We are, in general, all deficient in minerals and some vitamins. So when that time comes, it gets even worse making us pretty miserable.
    Here are some supplements that are known to be lacking in us, as a general population of pts.

    CFS/FM Hormonal Problems and Treatment
    by John W. Addington


    Abnormalities in hormone production and function have been implicated in Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). As of yet, it is not known, whether particular hormonal problems are a cause or result of these ailments. This is because good health and physical well-being are due, to a large part, on a complex cascade of hormonal reactions within the body.
    Some of the hormone irregularities potentially involved in the symptoms of CFS and FM are outlined below along with available treatments. Bear in mind that due to the complicated interrelation of hormones and their powerful effects, therapy in this area, which sometimes involves steroids, should be approached with caution. It is best for individuals to seek the advise of experienced health practitioners before embarking on a course of hormone replacement therapy.


    Function: Cortisol, produced by the adrenal glands, has an important role in responding to and recovering from stress. Cortisol moderates the body's glucose levels and ensures this blood sugar is available for proper brain functioning. Another benefit of cortisol is its ability to break down fat for use as energy.

    Relation to CFS/FM: In studies of persons with CFS, doctors have found significant reduction in both blood and urine levels of important adrenal hormones including cortisol. In fact, numerous abnormalities have been documented in the chain of events that lead to the production and maintenance of proper cortisol levels. Some doctors feel CFS may be a form of Addison's disease, a dysfunctional adrenal condition also resulting in low levels of cortisol. (By contrast depressed individuals who do not have CFS often produced elevated amounts of cortisol.)

    Treatment: A number of studies have examined the benefits of prescription hydrocortisone (therapeutic cortisol) for CFS, many reporting positive results. Dr. Teitelbaum has seen dramatic results in some of his patients and says avoiding high dosages can control side effects. However, some doctors feel the evidence does not yet sufficiently support this protocol.

    Exercise started at very modest levels and gradually increased in duration and rigor can improve adrenal function, increase cortisol output and alleviate a degree of CFS symptoms. Licorice extract can also increase cortisol production.


    Function: DHEA is the hormone produced most abundantly by the adrenal glands and which generates the production of the sex hormones estrogen and testosterone. DHEA is sometimes called the fountain of youth because its production declines the older we get. This adrenal hormone has anti-stress and immune strengthening properties along with the ability to improve sleep, mood and energy levels. DHEA and many other hormones are formed from the hormone pregnenolone which likewise originates in the adrenal glands.

    Relation to CFS/FM: Because other adrenal hormone problems have been observed in CFS, doctors began testing DHEA levels in their CFS patients and have found these to be lower than in normal persons. Recently reported studies have confirmed lower levels of DHEA in CFS persons which it is believed may contribute to negative effects on memory, mood and energy levels.

    Treatment: DHEA and pregnenolone are available over-the-counter in supplement form, some claiming increased energy, immune function and mental clarity from their use. Others have reported heart palpitations and altered mental and emotional states while on DHEA. Health practitioners indicate controlling the dosage can minimize DHEA side effects. Others feel pregnenolone is safer, produces similar results and more easily tolerated.


    Function: Produced by the pituitary gland, growth hormone (GH) is vital to most body tissues. GH promotes growth particularly in the young, induces protein synthesis, encourages metabolism by moderating and stimulating cell use of amino acids and glucose, and promotes the conversion of stored fat to energy. This hormone is also needed for proper brain and immune function.

    GH is hard to detect because it remains in the blood stream for only a few minutes. However, GH is converted by the liver into another substance, insulin-like growth factor 1, also called somatomedin C, which remains in the body 24-36 hours. If levels of somatomedin C decline so do muscle and bone strength and energy levels. Since somatomedin C is an indicator of GH activity, a drop in somatomedin C also means lower levels of GH with an associated drop of GH benefits.

    Relation to CFS/FM: In studies performed alterations in GH activity have been shown both in CFS and FM. This is thought to be caused by deviations in the deeper sleep stages during which GH is produced or by other problems in hypothalamus functioning. A recently published large trial in Belgium has conformed abnormally low secretion of GH in CFS patients. Research specific to CFS has shown such patients have unusually low levels of Somatomedin C, indicating an underlying GH deficiency.

    Treatment: Growth hormone replacement treatment for CFS or FM often entails injections of rhGH (recombinant human growth hormone), which is a genetically engineered substance that duplicates the GH produced by human pituitary gland. In one study from Oregon, most fibromyalgia patients on rhGH injections noted reduction of their symptoms, some experiencing impressive improvement in their functional ability. Side effects, however, included a high incident of carpel tunnel syndrome and symptoms returned after the treatment's end. Another problem to this therapy is its exorbitant costs, $1,500 per month.

    Dr. Cheney has had success with rhGH injections in CFS patients, finding the side effects can be ameliorated by limiting the dosage amount and frequency. He has done well in obtaining insurance coverage for his patients by first running tests establishing the GH deficiency. He is currently managing a study to verify the benefits of rhGH for CFS.

    There are also natural ways to stimulate the body's own production of GH. Two of these are aerobic exercise and, for the overweight, weight loss. Natural supplements such as Vespro GHS may also increase pituitary gland secretion of growth hormone.


    Function: The brain's pineal gland is the primary source of melatonin, a hormone derived from serotonin and which is responsible for maintaining proper sleep patterns. Light decreasing at the end of the day triggers increased production of melatonin, tapering off as morning nears. Besides inducing sleep, melatonin is thought to be a primary regulator of the immune system, as well as having the ability to reduce anxiety, panic disorders and migraines. This hormone is also a very potent anti-oxidant. Relation to CFS/FM: A handful of small studies have yielded mixed results as to whether melatonin cycles or levels are altered in CFS or FM. For both ailments separate studies have shown abnormally high or low levels of nighttime secretion, or no difference at all from healthy persons. Larger studies will need to be done before more conclusive results are available.

    Treatment: While there are almost no published studies on melatonin treatment for CFS or FM, one very recently reported trial did examine melatonin's use for FM. That trial found that 3 mg of melatonin at bedtime for 30 days brought noticeable improvement in both sleep and pain. Many doctors caution, however, that 3 mg. daily dosage is excessive and may be the cause of side effects such as jitteriness or headaches. Dr. Teitlebaum has stated that excess amounts of melatonin can aggravate risks for depression and infertility. He and others recommend only 0.3 mg at night.

    Caffeine containing drinks or foods, as well as exercising in the evening may interfere with the natural production of melatonin. On the other hand, exposure to natural light earlier in the day and eating meals on a regular schedule, can aid the healthful pineal gland secretion of this hormone.


    Function: Thyroid hormones include thyroxine and triiodothyronine. The primary function of these hormones are in controlling metabolism, that is, the rate at which the body utilizes calories to produce to energy. Relation to CFS/FM: Insufficient production of these hormones results in a condition called hypothyroidism. Hypothyroidism slows the heart rate causing sluggishness, dry skin, intolerance of cold, and in some cases, confusion and depression. Studies have shown between 7% to 30% of patients with CFS may have this condition. The cause of this disorder in CFS is thought to lie not within the thyroid gland, but with problems associated with the pituitary gland. This is because thyroid hormone levels are controlled by the pituitary's release of the thyroid-stimulating hormone, thyrotropin.

    A related hypothyroid condition, called Wilson's syndrome has similar symptoms that can overlap with CFS such as fatigue, insomnia, loss of concentration and memory, anxiety. The low body temperature and intolerance to the cold are hypothyroid symptoms, that can distinguish these disorders from CFS generally.

    Treatment:Treatment with synthetic thyroid replacement therapy (Synthroid and Levothroid) have had mixed results. However, in one recently reported study a large majority of CFS patients who also had hypothyroidism showed a remarkable improvement in their health when on such. Some have benefited by a natural thyroid extract such as Armour Thyroid, which is available by prescription only. Natural thyroid replacements have the advantage of supplying both thyroxine and triiodothyronine whereas Synthroid and Levothroid replace thyroxine alone.

    Wilson's syndrome is often readily rectified by a short course of the medication Lyothyronine (synthetic triiodothyronine).

    Editor's Note: For a list of references for this article, please email the Editor at:

  10. fibolady

    fibolady New Member

    i have been the rounds with my gyn and fms doctor to find something to help with the "always" dreaded time before my period. i get terrible migraines and the fms always flares. now the migraines have shifted to the end of my period. so, still haven't found the migraine answer, have brought up that topic a lot here.

    i am so sorry to see that so many of you are having even worse problems as you nearer meno. i thought i would just have meno, then wham my pms and hormonal problems, and fms realted pain every month would be solved. don't tell me i have to suffer more before it gets better.

    some things i have tried, more calcium, magnesium, (hoping the zma might help this month), estrogen patches, imitrex, midrol. now i was wondering

    has anyone tried progesterone?

    somewhere i was reading how we have way too much estrogen, that could be the culprit. so if we upped the progresterone would that help? i know everytime i tried the estrogen my symptons got worse. why wouldn't my gyn try the progesterone. if anyone has, please i'd love to hear.

    my next step is they want me to go see a neuroligist. all i know is that its not "all in my head" it's all over my body during that time of month!!!!!! hehe

    warm regards, fibolady
  11. Jackie F

    Jackie F New Member

    along with some estrogen. I take Estratest and dearly love how it helps me.
    I had lost sex drive due to some other meds.
    It has helped restore my hair.
    It has helped restore my strength.
    It has leveled out my moods from erratic hormones.

    I feel normal again after finding this one--for me.

    Jackie F
  12. Danielle

    Danielle New Member

    My fibro gets really bad a week or 2 before. I would get cramps so bad they would last for 5 or 6 hours. My gyn suggested taking ibuprophen starting the day before and continue taking it round the clock (only the dosage recommended for a day) for the fist 3 days. I thought yeah right that is really going to help. Thank God it did I have not had cramps for a year.

  13. MicheleF

    MicheleF New Member

    I do have endometriosis, so have had problems for years b/f fms set in. Do all of you have endo too? Won't say more as I posted just a couple days ago abt new study of endo patients.

    Only had 1 1/2 days of cramps this month (unless they come back), so guess my poor body decided to give me a

    Take care. Jackie, thanks for the info. Michele
  14. BethM

    BethM New Member

    the fibro pain flares, my lower back hurts like crazy, and I am soooooo tired. Yes. Yes. And no one can tell me why, but I believe that FMS and most everything else in our bodies is controlled by hormones and neurotransmitters. Those two things have to be in balance with themselves and each other, and when we are premenstrual, it all falls apart. I take low dose birth control pills to control my wacked out hormones. Tried to go off them last March, was back on them very gratefully by June. It was horrible, much better when they are artificially controlled.

    When I am premenstrual, my endurance goes down the tubes, and I have to be careful what I schedule. My poor dogs desperately want a walk tonight, my period is due NOW (this minute, please!! would be good...) and there are such sharp pains in my back I just can't. OH, well.

    Thanks for the good post!