?? about HRT, in light of CFS/FMS

Discussion in 'Fibromyalgia Main Forum' started by missvickielynn, Mar 16, 2003.

  1. missvickielynn

    missvickielynn New Member

    I realize that this is not a "Menopause" board.......but I believe that this is the place to address my concerns about Perimenopause, Menopause and HRT, because it must be looked at in light of the fact that I have CFS/FMS. (Diagnosed CFS in 1988, FMS in 1993.)

    I also have (had???) endometriosis, and had an endemetrioma removed from my right ovary laparascopically in 1996. There was very little of that ovary left after the surgery. The Doctor's report said that there were "no other indications of endometriosis" anywhere other than the ovary.

    I had been experiencing some of the "symptoms" of perimenopause even before the surgery. But within 6 months of the surgery, the symptoms of menopause began to increase.

    By 1999, I was having frequent hot flashes. By 2000, I was having both frequent hot flashes and night sweats, along with increased CFS and FMS flares.

    By 2001, I was suffering HORRENDOUS hot flashes/sweats/chills, that had become almost CONSTANT.

    It became a constant repeating cycle.....horrible burning, full-body hot flash, drenched body and hair, ripping off all clothing in front of a fan, or even going out into the cold winter air, followed immediately by body-shaking chills, throwing on layers of clothes and blankets and still be freezing and shivering and unable to get warm.....until the next flash started a few minutes later.

    It was so NUTS that I would actually look forward to the switch from hot to cold, and then from cold to hot, just for the split-second periods of "relief" from either the flash/sweat or the chill. I went through over a year of not sleeping more than 20 to 30 minutes at a time at night because of the flashes/sweats/chills.

    I tried several alternatives to HRT during a period of about 3 years. I didn't want to take hormones, due both to the ramifications of the endometriosis, and also due to liver damage. But I was suffering so horribly, and the additional stress of what I was enduring, plus the fact that I was getting even less sleep, was making all my CFS/FMS symptoms stay in almost constant flare. In addition to all this, my periods were fluxuating wildly between months with no period, to times when I bled for weeks at a time (56 days straight, at one point!)

    As a side-note here.....ironically, during 2001, when it was at its worst, I was also taking Neurontin, which they are NOW saying is useful to treat hot flashes. Well, not for me, it wasn't!!

    Then I heard about Combi-Patch. I decided to ask for it, because I could not continue living like I was. I decided that, with the risk to my liver eliminated by using the patch, that I was willing to risk the possible re-activation of the endo.

    So, I went to a Gyno (whose wife has FMS) in Dec. 2001. During my exam with the doc who prescribed the Patch for me, he also discovered that my Fibroid tumor on my uterus had grown, and warned me that the Estrogen in the patch could cause it to grow larger.

    I saw the Doc on Monday, Dec. 17. Because of a snafu between the Nurse and the Pharmacy, I didn't get my prescription on Monday. So, I put on the first patch on Tuesday afternoon.

    By the following Friday, the hot flashes/sweats/chills and being constantly cold (when I wasn't flashing)....ALL of this stopped COMPLETELY! I cannot tell you what a relief it was. I even got some fairly good sleep for the first time in over a year, which lasted for several weeks. (The sleep problems returned...but not due to Hot Flashes.)

    Except for a bout with bronchitis/walking pneumonia during the first 2 weeks of Jan. 2002, I felt better than I had in a couple or three years, and this lasted all Spring of 2002. I still had a few minor episodes of light spotting, and some breast tenderness, for the first 3 months on the patch, but then all bleeding and breast soreness stopped.

    Now, to my current dilemma:

    Due to circumstances beyond my control, I did not have the money to refill my HRT this past week. I should have put on a new patch no later that Friday at noon.
    Here I am now, Sunday night, and I am having very mild flashes (which are so mild as to be easy to confuse with just being warmer, since the weather has taken an abrupt warm-up....It was like 83 today and yesterday.)

    I always feel better during springtime (with temps between 75 and 90 degrees, and low humidity). So, due to the beautiful weather yesterday, I felt really good for the first time in months. As a result, I over did my activity.....even though, by a "healthy" person's standards, my activity yesterday was just barely more than nothing.

    But I over-did and did some specific activities that I really "knew better" than to do. So, today I have been in terrible pain in my lower back and leg on the left side, with the awful deep aching burning pain, accompanied by the skin pain that feels like sunburn. This pain follows the path of the sciatic nerve, from my lower back down through my butt and hip, down the side and back of my leg, clear into my calf and foot.

    This is one of my "typical" kinds of flares. Like most of you, I have several different "kinds" of flares. In my case, this pain is (probably) from a combination of Herpes viruses degenerative spinal issues, and CFS/FMS.
    I have just been really miserable most of the day. Now, just a few minutes ago, I discover I am spotting. While I have mostly been blaming today's pain flare on the overactivity yesterday, I can't help but wonder about the hormone issue. I can look back at my diary for years and years, and see that I used to have the same kinds of lower-body, one-sided pain episodes with skin burning, (just like this one) either right before or on the first couple of days of my periods. So there has always been a hormonal connection.

    In addition, though....there has also always been a weather connection to both good and bad days.....and today there have been thunderclouds rumbling around most of the afternoon and evening....lots of thunder and lightning, but only a few drops of rain, which is typical here. But I know the weather plays a part as well. Oh, my......which came first, the chicken or the egg?

    It will be a week, probably, (at least) until I will have the money to refill my HRT Patches. I guess another thing that worries me is this:

    It seems to me that it must not be "good for me" to go off the patches, and then back on...that it will mess up a sort of relative "balance" that had been achieved with the patches. But, I know that I cannot bear the thought of going back to the way it was before the patch.

    Another thing that worries me, is that, if the patch caused me to stop bleeding completely, and going off the patch causes me to start spotting again this quickly.....then what does that mean?

    And if I continued to stay on the patch uninterrupted, how would I know when I had actually reached "official" menopause. If "menopause" is official after one year of no periods, but my lack of bleeding was brought about by the hormones......then how do I know? Would I start to bleed upon stopping the patches, even if I stayed on them for 2 or 3 years?

    The subject of perimenopause, and menopause, endometriosis and HRT, and the female hormonal system, is so complicated to me......and I have a much better understanding of "medical" stuff than some people, due to living with CFS/FMS and endo for so many years. But these subjects are so beyond anyone's ability to understand, or at least to agree on.

    Much like the issues of CFS/FMS, huh? And with what we know now about the increase incidence of CFS, FMS, Lupus, MS, and other autoimmune diseases in women who have endometriosis...........the waters just seem muddier than ever!

    Well, I really do have some questions that I am posing here, and really would like some input from you all here on the board......especially any that have dealt with additional hormonal and/or menopause issues as well as the DD's.

    Sorry to ramble on so much........but by now, most of you know that is just the way I am......

    But it has distracted me somewhat from the pain, and it has helped me to vent......even if I cannot solve anything, I feel better getting it all "out". It helps me to get things out of my head, and down on paper. That way, I can kinda "turn it over" and stop stressing (obsessing) over it.

    And I thought it might be more beneficial for me....and maybe even be useful to someone else......if I "vented" here on the board. Not only will I perhaps get some enlightening input, but perhaps someone else will identify personally with something I have said, or what I am experiencing.

    Thank you for reading, and thank you in advance to any who decide to reply!


    Vickie (in Texas)
  2. PatPalmer

    PatPalmer New Member

    Lord you poor thing.

    I`m afraid I have no real advice for you but sympathise loads.

    My daughter has CFS and periods were always irregular, and had temperature fluctuations, (nothing like yours)-turned out she had polycistic Overy syndrome and was put on the pill to sort it out. Has just come off it after 6 months because she says she doesn`t feel right on it. Not sure what she means by that.

    Sounds like you have one hell of a problem there and I can`t imagine where you start other than perhaps looking at diet and supplements.

    I try to eat only as natural as possible, if its processed in any way I don`t touch it.
    I was on HRT for fatigue (never had the hot/cold thing) and have decided to stop because I am convinced any improvement I have is due to my change of diet and supplements.
    It`s been 6 wks since and I do not feel any worse at all.

    I hope you have better health soon, must be living a nightmare.

    Love Pat.
  3. missvickielynn

    missvickielynn New Member

    For your reply to my whiney post!

    I took the pill in my late teens and early 20's, and had major problems.....major weight gain, migraines that put me in the ER, being the worst. I got my tubes tied at age 24 because I had to stop taking the pill....but that is a whole other story.

    The HRT has not seemed to make any difference in my fatigue....at least, not directly. It improved for a few months last year, as I mentioned, but that was more to do with the fact that I finally got some decent sleep, and due to the time of year when I nearly always have a remission to one degree or another.

    I am (and have been) doing the diet and supplement routine, and I did try several alternative treatments (soy, herbal remedies, etc.). The herbal route not only didn't help with the hot flashes, but they screwed up my liver enzymes.

    For a while, I got some mild relief from a homeopathic remedy, but as the symptoms got more intense, the remedy stopped working.

    Needless to say, I will probably go back on the patch, because I don't see how I can get around it. But, who knows....perhaps something will happen to make me change my mind during this period of time while I don't have the money to get the script refilled!

    But even if I do go back on it, I still have the questions about "how do I know if I have reached menopause" if the only reason my bleeding stopped was because of going on the patch? And the other issues worry me as well.....

    Anyway, I appreciate your support, and the time you took to reply! Thank you for giving some kind support to this whiney sufferer!

    Hoping to get some more feedback from people who have dealt with the Meno-demon while dealing with CFS/FMS!