Fibromyalgia and breast cancer

Discussion in 'Fibromyalgia Main Forum' started by Whosure, Jan 11, 2006.

  1. Whosure

    Whosure New Member

    New here and could use some help. Will try and keep this short.

    Was "diagnosed" with fibromyalgia in 1993 when in my late 40s. It took years to get the diagnosis, only to discover there is not much to be done. I have IBS, TMJ, and 16/18 pressure points. Fatigue and pain are with me always.

    I try to treadmill with walking twice each day for about a half mile, sometimes a little more. My TMJ is severe -- have battled that since college days. I have numbness in toes, legs, and have some attributes of RLS.

    Over two years ago I ended up with breast cancer. Early stage, but chemo, radiation, infection, and now tamoxifen for about 18 months. The arthritic pains associated with that are considerable.

    I am still trying to work, even though I am now 62 (feel 82) and could retire.

    Quality of life right now sucks. Have not been back to a pain specialist or rheumatologist for over a year now. Last time was not helpful. Physical therapy was not enough. They gave me no meds because of the cancer treatment.

    Anyone on this board with fibro and breast cancer, especially taking hormone treatment of tamoxifen or the aromotase inhibitors?

    Thanks. Today I am really, really low -- and hurting.

    M2
  2. lana33

    lana33 New Member

    I have been diagnosed for 2 years. Also have several other diagnoses. My aunt had breast cancer. She had chemo and now is in her 4th year since treatment.

    She is the first person that we are aware of in our family with breast cancer. My mom died in 2002 but had other medical problems. My grandmother is 91 and never had any kind of cancer. But I have heard it doesn't have to be hereditary.

    I watch myself more now since my aunt was diagnosed. She also takes tamoxifen. I told her about a new drug I read about called Femara. MY aunt said her doctor has mentioned it and said after she stops tamoxifen, after 5 years I think, she could start taking the Femara.

    I know you didn't ask for this info just thought I would pass it along. I was wondering why my aunt hardly is able to take anything for pain. Almost everything I bring up she says her doc doesn't want her to take.

    I am a nurse and wasn't aware that being on chemo caused a person to have to do without quite a few drugs.

    I think I understood you right, you don't have medication right now because of chemo? Anyway I understand any pain you may be having cause besides fm, I also have osteoarthritis and rheumatoid arthritis.

    Well glad to meet you. Hope we can talk again soon.

    Hugs,
    Lana
  3. Whosure

    Whosure New Member

    Lana, thanks for your response. The oncolgists, surgeons, -- chemo nurses -- the whole kit and kaboodle do not want us on pain killers when in chemo and then when on the hormone therapy, which is tamoxifen or aromatase inhibitors. They also do not like to prescribe meds for depression, as there is an emerging chunk of research that says it knocks out the power of the hormone therapy by about 50%!! So, we hurt and we are depressed, and if we take stuff to help ourselves, we are rolling the dice for the breast cancer to come back.

    I appreciated the person who posted the 100 Fibromyalgia characteristics. I think I checked off 75% of them, but once you have cancer and also treatment for hypertension, you never really know what is causing the pain. My oncologist told me that she was watching me more closely, simply because I may not recognize metastic pain if the cancer spreads. (Talk about sending me in a siege of stress with that comment.) At least she recognizes the level of pain I am in.

    I try to exercise, and I use a heated mattress pad and several heating pads, along with buckwheat hull pillows. I am due to go back to work tomorrow for a 6 hour meeting. Yup, six hours. You wonder what has to take six hours. Mandatory, too. I don't know if I can make it through.

    Most breast cancer is not BRCA1 or BRCA2 driven -- only about 10%, but I do believe that breast cancer is more prevalent in families that may have other close relatives with cancer. That seems to be the case.

    I have worked so hard to get to where I am in my career, and I am finally making some serious money -- and now this. I wanted to work another four years until full retirement, but I am starting to think that is not going to happen.

    Thanks for the hug. I needed it today.

    M2
  4. hopeful4

    hopeful4 New Member

    I'm sorry to hear that it's such a down day for you. Dealing with FM, CFIDS, and then breast cancer is so difficult.

    I was DX w/CFIDS in 2000. I have some of the FM symptoms, but not "enough" of the tender points for DX. In 2003 I was DX w/breast cancer at age 53. Thank G-d it was early stage.

    I had lumpectomy, sentinal node biopsy, radiation therapy, no chemotherapy, and was put on tamoxifen.

    The radiation therapy did make me more fatigued, and gave me a different kind of brain fog in addition to the CFIDS. With the tamoxifen, it definately made my joints ache and stiff, and for months was difficult.

    That problem has gone away for me. Not sure why, it could have something to do with treatment from FFC for CFIDS/FM.

    I do have a couple of suggestions. There is a great website called breastcancer.org It is educational and also has a forum like this one where people talk and help each other out. It was a life-saver for me.

    A book that helped me greatly: "How to Prevent and Treat Cancer with Natural Medicine" by Michael Murray, ND. His book includes nutrition, supplements, lifestyle, and many complementary therapies such as acupuncture, yoga, meditation.

    It has a specific section on breast cancer. He is showing how complementary approaches can be a adjunct to conventional medicine. The ND I saw during my cancer treatment closely followed his approach.

    I found great help and relief from such complementary therapies as massage, Reiki, yoga, qigong, visualization.

    Just passing this along in case something here may help you.

    Take care, wishing you the best always,
    Hopeful4
  5. dianam

    dianam New Member

    I have not been here (board) in a really long time. Actually, it probably has been about a year since it's been about a year since my breast cancer diag. I came back because I am having so many scary issues putting me in the "OMG it has spread to other parts of my body" boat. I do have the FM diag. from about 20 years ago. I also have sympdoms from the CFS arena. So having tender lymph nodes under my arms are really scarry, as is a low grade fever, back ache, and...well I'm scaring myself silly. I had early stage breast cancer, treated a year ago with lympectomy, radiation and now tamoxifen. I had a PET scan (looking for cancer anywhere else in the body) Right after my surgery because of right flank pain that I have had for years (call IBS by doctor), and it was clear. My oncologist is having me go in for another ultrasound of the nodes under my (on the other side of the cancer) arm.

    My question to you who are or have been where I am is; how do you know it's not cancer? And, how much pain and feeling really sick is part of our FM or CFS?

    Thank you for any input. I would just like to stop obsessing about this.

    Di
  6. Dlebbole

    Dlebbole New Member

    I can certainly relate to the fear. I had breast cancer twice, the first time treated with chemo and radiation and the sceond time just surgery. Because I am BRCA1 positive, I had my ovaries removed. 53 days after my blateral mastectomy, my husband told me "something was missing" from our marriage and made plans to leave soon after. Plenty of stress.

    My CFIDS/fibro symptoms went away completely on chemo, but fibro pain was horrible during radiation. Now I'm 1 1/2 years out of treatment and in pain. My rule of thumb for pain is that if it stays the same for longer than a week I will see my oncologist. My fibro pain is very "mobile" - it rarely stays exactly the same for too long.

    But I can certainly relate to the feelings of fear. Diane
  7. dani78xo

    dani78xo New Member


    my mom used to have breast cancer,
    and she was put on tamoxifen for a couple years after they did surgeries on her.
    her doctors think that the tamoxifen set off her FM,too.

    she's alot better now, her FM isn't that noticable anymore.
    she stopped taking the tamoxifen early, though.
    she couldn't handle all the bad health effects it was having on her.
  8. ksp56

    ksp56 Member

    I am a survivor of eight years! My treatment course was lumpectomy, chemo, and radiation. Tamoxifen for 5 years.

    I believe I've had fibro issues since I a kid. My Dx came three years ago. Of course, this was after seeing 6 doctors! LOL

    My doctors didn't have a problem with me taking antidepresants, but did ask me not to do anything with herbs until chemo was over. Herbs could make the chemo react differently.

    For the person who has recently been diagnosed and treated for BC; For several years I always thought everything was the cancer. My online support group named it 'canceritis'. Meaning we will be scared about everything for quite awhile.

    It is so normal to be frightened. After eight years, the only times I get nervous is when I have a mamo and see my onc. Or if a doc wants to do a 'little' more tests for something simple.

    If I can help you let me know. You are not alone.

    M2, I don't know if I helped with your question or not. My mind is foggy today. I will pray that you feel better, both physically and emotionally, very soon.

    Take perfect care...

    Kim



  9. Bre_Bre

    Bre_Bre New Member

    Hi M2,
    I was Dx with BC Oct.2002. My BC was also hormone positive, stage-2, no lymph nodes involved. I could of opted for lumpectomy but choose to have a radical masectomy with 19 lymph nodes taken out. I had 4 rounds of chemo. I was 47 when Dx with BC, had already had a hysterectomy when I was 37 b/c of prolapsed uterus, but still had my ovaries. 3 months after my last chemo treatment, I went and had my ovaries removed. Of course the chemo had already put me in menopause. But I didnt feel safe with them still there! Hot Flashes were awful!!
    My Oncologist put me on Arimidex 1mg. a day for 5 yrs. He said Arimidex didnt have the real bad side affects Tamoxifen did on your body. Im not so sure about that, but I do continue to take it. He also put me on Effexor for hot flashes and it does help tremendously.
    They dont like to give you to much pain meds. b/c chemo is so bad on you.
    Anyway I was Dx with fibro Jan.of last year after everything else was ruled out.
    I was part time for about 11 yrs. but went regular in July 2003. I totally understand, I am usually always in pain, not to bad (sometimes), so tired all the time, and my 83 yr. old father lives with my husband and I. I am under so, so much stress. Depressed, you bet! Yes, I have 1 brother,(who lives 5 miles from me), 1 sister that lives about 30 miles away and neither work!! No help what so ever! I dont know what I would do without my wonderful husband.
    Anyway M2, you need to go to rheumotologist,pain specialist, who ever so you can get the help you need. My rheumy does give me pain meds. & my Oncologist knows. I do still have to go see Oncologist more b/c of fibro, meds., blood work,& of course to see how I am doing.
    I am so sorry for you. My work is a very physical job and it is so hard to get up sometimes. I could quit, but Im trying to hang in there b/c retirement and Ins. would be great. But I dont think my body can hold up much longer. Sometimes I can barely put 1 foot in front of the other. I am 50 and I feel 80 myself. The aches, pains, fatigue, etc. does make our quality of life suck sometimes. Talk to your Oncologist, maybe he could help or refer you to a Dr. I wanted you to know that I had BC, take Arimidex, and I am given some pain meds.
    Please forgive me for rammbling on here to you but your message really touched me. As all the rest do here also b/c we are all dealing with so much and so many people, some Drs. too, dont have a clue, understand or even believe you!! I dont have much time to get on here but when I do, I always come here to the message boards. Please try to go see some Dr. b/c you deserve, we all deserve something for the pain we have to deal with most everyday of our lives.

    My Best To You,
    Hugs Too,
    Bre_Bre

    P.S. I have some first cousins on Dad`s side that has had BC. None on my Mothers.
  10. Gen46

    Gen46 Member

  11. Gen46

    Gen46 Member

    M2, this is my first post ever on a discussion board. I normally just lurk, but I feel the need to share. It's a long one, so please bear with me. I was diagnosed about three years ago with fibro and osteoarthritis (hands, wrists, fingers, hips, feet), and in February 2016 (9 days after my dad passed away) I learned I had DCIS--most of which did not show up on the mammogram. Monday (5/5/16), after opting for a bilateral mastectomy with spacers inserted to begin reconstruction, I learned there was also Stage I Invasive cancer (Estrogen +, HER- and Progesterone -). In some ways I feel very fortunate that I am technically "cancer free" with clear nodes, and wide margins. Waiting on my Mamoprint report to come back now.

    But the moment the oncologist started to talk about side effects of hormone blockade, I began to go to pieces. I was peri-menopausal in my early 30s (premature ovarian failure). I am now 46 and officially (FINALLY) post-menopausal, as of his week. I simply cannot imagine going through another decade (yes, he said 10 years of pills) of menopause symptoms or adding to the nevitable the aches and pains of being a walking barometer.

    My one hope is that as of last fall, I had regained my health last year by changing my diet. I added the typical anti-inflammatory supplements recommended by my doctor, like G & C, turmeric, fish oil. (I'm now off all of these and have been for over 8 weeks because of the surgery and expectations that will need [and want] a port for chemo.) I eliminated alcohol, gluten, dairy, soy and corn from my diet. It was and is still hard, especially eating out, but the change made a huge difference. The final step forward came when I read about healing foods in a book by a guy called the Medical Medium. I'm a Christian, so I was really skeptical. I live and work in an evidence-based profession/community. I was, however, also desperate enough to spend $10 on the book at Amazon to see what he had to say. I couldn't do the 30 day smoothie diet/cleanse he recommends (too extreme for me), but I did change to plant-based fish oil. It made a difference. Conventional fish oil will set off my FM in just three days! I also added the "healing" foods he recommends: sweet potatoes, coconut oil, lettuce, spinach, berries, apples, asparagus, garlic, oregano, cilantro, celery, grapefruit, etc--all organic. My diet is now far more plant-based, but I still eat meat. It's the kind of stuff doctors tell us to eat anyway, so I figured if it didn't help with the fibro, I might lose some weight. I was frankly shocked at what happened. For me, it made a big difference. My energy returned. My pain went into remission. For more than 8 weeks I was essentially symptom free until my Dad passed away in February.

    The stress of my dad's death and the cancer have caused some flares, and I honestly don't feel as good as when I was on my supplements (arthritis bothers more than the FM right now).

    All of this is to say that if you haven't taken a hard look at what you're eating and drinking, I would urge you to do that before giving up on the estrogen blocker. It might not make a difference for you. I just know changing my diet gave me my life back once. If I had relied entirely on modern medicine, I'd be on disability today for the FM. Knowing that what I eat matters so much will give me the courage to at least try the estrogen blockers. Six months ago, I wouldn't--couldn't-- have even thought about it.

    A big thanks to all of you who recommended natural alternatives that I'll explore along side the medications recommended by my oncologist. I don't believe in abandoning the modern, but the ancients knew a lot more than today's medical establishment acknowledges.

    I hope you find some relief! Hugs--