This is getting to be too much!

Discussion in 'Fibromyalgia Main Forum' started by Musica, Aug 26, 2005.

  1. Musica

    Musica New Member

    I used to be so healthy. Not even a cold in YEARS. I thought it was a big thing to be found with a large fibroid in 1999! I felt so healthy, even though I know now I wasn't necessarily.

    June 2004 I was dx'd with rheumatoid arthritis. It didn't take long for that to be controlled, but I didn't feel as good as I should. Body bone scan, MRI of head/neck, neuro eval... At least the expensive tests/evals seem to be over for awhile.

    Feb. 2005 I decided to have a bone density and found I have severe osteoporosis.

    April 2005 Rheumy sent me to a sleep doc (anyone know Dr. DePaso in Seattle?) and I have severe sleep apnea.

    In the meantime, rheumy wondered if the huge fibroid could be causing some pain, and PCP was gently encouraging me to have a hysterectomy. I went to an OB/GYN and found it is not only large, but dense, immovable because it fills my pelvic area. I am having a hysterectomy in October.

    In July I had one of my standard blood tests for being on methotrexate. MTX is very hard on the liver so regular blood tests are required. My liver enzymes are a little high. Not alarmingly so, but I'm not large, either. So I am off MTX for 2 weeks until after another blood test. This shouldn't be worrisome, but after the last year, I can't take anything for granted anymore.

    And now I am more fearful of the hysterectomy and possible complications such as a blood clot or infection because I feel like I am quickly falling apart. And still having "unexplained global pain", for which rheumy is waiting to see the results of successful CPAP use and the hysterectomy to evaluate further.

    So many of those conditions can also affect the heart, I feel like I could have a heart attack any day, at this rate.

    I guess I'm posting this here because I know I'm not the only one who seems to have quickly gone from healthy to feeling very unhealthy. Suddenly, my mortality is hitting me in the face. Somehow having this little lab test be high, which I just realized has been increasing over time, is just too much.

    I know I could have more worse diagnoses, but I am just feeling so...VULNERABLE these days, and with diagnoses coming so fast and furious that the long term insurance I hadn't bothered to get before is practically out of reach.

    And not even having an answer for continued aches yet. At least, if it is FM, I think it is mild since I don't have a lot of the other problems.

    Help. I feel like I am drowning in diagnoses. Whenever this medical merry-go-round seems to be slowing to a stop, suddenly it lurches forward again.
    [This Message was Edited on 08/27/2005]
  2. kac1960

    kac1960 New Member

    replying to question on neuronton,also I am very sorry that your in so much pain,and had a lab test come back high. I know very well how you feel about the turmoil your life is going through, I myself am 44 and up until about 18 months ago I was a very active and social person. Then this monster called fm and all his friends ( IBS, depression , RLS, arthritis etc.) invaded my life . I will be truthful everyday can be a stuggle , I have reached out to my familly and they have been very supportive and my family doctor I dont know what I would do without her , shes great! I have found that having people to confide in helps alot , in the short time I have been coming here, I haved gained alot of knowledge, and met some truly caring people.
    I know this does not solve your problem, but I hope I have let you know your not alone, try to keep your chin up!
    Cheers Kathy



  3. rileyearl

    rileyearl New Member

    I'm sorry you have another thing to worry about. I can relate--enough is enough. At the end of May I had what felt like a heart attack with classic female symptoms. I ended up having an angiogram that didn't turn out very well. I mean the results were great--my heart is fine--but the incision opened up twice after the procedure. That's not a good thing when it's on your femeral artery. Anyway, the stress from that is what triggered the severe pain piece of FM. When suddenly facing mortality all the stages of grief get muddled up into something like panic.

    I'm not sure it applies here, but milk thistle is supposed to be a liver cleanser. I know someone who has hepatitis C and it really helped him toward remission.

    Maybe you'd like to chat sometime or meet for coffee/green tea when you're in Renton to see Dr. Holman? I don't know if I mentioned I love the name Musica. It sounds like joy! Take care--hug a cat!

    Francie
  4. nozomi

    nozomi New Member

    any advice for you, BUT, I had a hysterectomy last year and it helped my pain SO MUCH. I had severe PMS and per-period pain, would get sick before my period, couldn't work, etc. Just not having to deal with THAT on top of FMS has made life more bearable. I hope you can keep your ovaries, I did mine and I am glad that I do not have to go through menopause or HRT. HUGS to you, I wish I knew what to say!
  5. purpleleaves

    purpleleaves New Member

    I don't want to pry, but what is your age...have you gone through menopause? Why the osteo?

    Please take a look at the website hystersisters.org. It was a huge help for me when I had a complete hysterectomy at age 26 for severe endometriosis. But I do recall reading that it might not be the best option for fibroids. (Although I do know of one woman in her early 40's who did it for fibroids, and her pain is so much better). What I feel the need to mention is hormone replacement therapy. It's a tough, tough after-effect that goes on for sometimes years to find the right balance. Those sweet blessed ovaries and uterus, despite their diseases, make hormones that are designed for our unique bodies--and I have yet to find a synthetic, or combo of testosterone, estradiol to make me feel like I did post-op.

    I know you don't need more worries, more to think about...but you can't take this surgery back, and there are a lot of consequences that follow it that the doctors don't always mention.

    And, if it helps--in a kind of crude way--I didn't think I'd make it through the surgery--and my doctor told me that when he made incisions, the various layers of tissue just fell apart in his hands because my health was so poor. But I made it. And now, even though I take my estrogen and calcium/magnesium--I have osteo at age 31.

    Hystersisters is a very impressive, very informative website.

    You'll make it--think about how much your miraculous body has been able to tolerate so far--nothing beats the human machine.

    I'm learning after 31 years of life that "it's gonna be ok even if it isn't." Sounds crazy, but this brings me peace.

    Peace to you and best wishes.
  6. CanBrit

    CanBrit Member

    I had a hysterectomy 15 years ago when I was 34 due to several large fibroids. I looked like I was pregnant! Lots of bleeding and awful pain.

    It was the best thing that ever happened to me. They managed to keep one ovary, so I didn't go into instant menopause (found severe endometriosis when they went in).

    No more pain, periods, femine products again. Yahoo. I won't kid you, the first couple of days after it are rough but it passes.

    I was diagnosed with FM,hypothryoidism and arthritis in my neck last year. I probably had all of that a long time though....just never saw a doc. In a year I went from taking one antacid pill a day to a handful of different medications. Oh well, I'm still upright and breathing so that has to be a good thing!

    All the best to you.....

    Eileen
    [This Message was Edited on 08/27/2005]
  7. hdbubblehead

    hdbubblehead New Member

    PRAYERS ARE WITH YOU.LIGHTING A CANDLE FOR YOU...
    AND ALL YOU CAN DO IS KNOW THAT WHATEVER DOESN'T KILL YA
    MAKES YOU STRONGER.

    ON A SOFTER SIDE- GOD IS IN CONTROL..
    YOU ARE IN HIS HANDS... HE KNOWS YOUR PAIN
    SURRENDER AND GIVE GOD YOUR FEARS & FRUSTRATION.

    YOU WILL BE ALRIGHT. YOU ARE A STRONG LADY.
    FIND A PLACE INSIDE YOUR MIND AND TAKE BACK YOUR PEACE!
    EVERYTHING IS GOING TO BE ALRIGHT.

    YOU WILL FEEL SOMETHING SPECIAL INSIDE YOUR THOUGHTS IF
    YOU GIVE UP THE FIGHT. LET GOD DO HIS WORK IN YOU.
    YOU WILL BE ALRIGHT.
    ( I DIDN'T SAY QUIT! ) I SAID SURRENDER AND THE PAIN WILL
    CEASE! GOD BLESS YOU NOW AND ALWAYS. PEACE.
  8. Musica

    Musica New Member

    Each one of you has said something so meaningful and helpful. Wow. I knew this was the place to come!

    Kathy, I can see you know what I mean, having so much hit in such a short time. It DOES help to have good support, to know I'm not alone.

    Francie, yes, let's meet! How do we arrange that? There isn't individual site mail here, is there? Do we arrange to meet in Chat? I see my OB/GYN on Sept. 20, he is near IKEA. I see Dr. Holman on Oct. 4, about a week before surgery. They are both late afternoon appointments.

    Francie, I love this: "When suddenly facing mortality all the stages of grief get muddled up into something like panic." I hadn't realized it before, but it's true. I must be going through another grieving process. I have heard of milk thistle; I'll ask my pharmacist about interactions and make sure it isn't a strong immune booster. Thanks for the tip!

    Nozomi, it is a big help to know that hysterectomies can help pain. It seems they can help pain or make some of these diseases worse. I seem to have just started menopause, anyway, so my OB/GYN says since they are hardly working, why keep the ovaries? He wouldn't put me on progestin, though, only estrogen, which he says helps the heart and bones.

    Purpleleaves, I just turned 50. I think the osteo is so bad because of one or two meds I had been taking for years, never knowing that could be a result. I am so sorry that you've gone through so much of this at such a young age! I know what you mean about "it's gonna be ok even if it isn't" - makes perfect sense, and does help.

    Eileen, and I only have the equivalent of a 20-week uterus! lol Not a lot of regularly known symptoms from the fibroid, but it is so large it may be causing some pelvic and leg pain, not to mention pressing on my bladder. I know they give you pain meds in the hospital, so I'm hoping it won't be so bad going home, except all the normal movements that use the abdominal muscles... I haven't had "one" since April, so I seem to be in menopause, although not a lot of hot flashes. OB/GYN says Asians seem to sometimes have "very warm" periods rather than hot flashes. I hope so!!!

    hdbubblehead, thank you! That's perfect. I do believe in God. What you said, it all fits for me.

  9. nanswajo

    nanswajo New Member

    I'm so sorry you are having so many problems. You are certainly not alone. I am horrified at how my body is aging.

    I am 54 now and had a hysteresctomy in my late 30's due to endometriosis. 3 years ago I discovered I have sleep apnea and I wasn't even the typical apnea candidate. I use a CPAP machine and I feel like Darth Vadar at night. Within the last 6 months I have not been able to walk well or move comfortably due to a recent dx of Fibromyalgia.

    I never thought that growing older would be so bad. I thought I'd just get slower, maybe, and gray haired, but this sucks, doesn't it? It is frightening, mortifying and bewildering.

    I do try to be positive and focus on something other than the pain and anxiety, and it does help. It just isn't realistic, though, to think that I should just be totally OK with it. I give myself permission to be sad and scared sometimes, but then I focus on something else.

    Vulnerable is a very good word to use for how I feel too. Like you, I worry about the future and my health.

    I guess when we are younger we feel invinceable and then reality hits.

    By the way, I used to live in Eugene, Oregon. I was there for 20 years and I so miss the northwest, but have adjusted, finally, to the northeast. It is such a different culture here. You live in a beautiful, gentle area.

    All the best to you. Nancy


    [This Message was Edited on 08/27/2005]